CO-CURE Medical & Research Posts Only Digest - 23 Oct 2006 to 30 Oct 2006 (#2006-49)
There are 18 messages totaling 4542 lines in this issue.
Topics of the week:
1. RES: Daily fatigue in women with osteoarthritis, rheumatoid arthritis, and fibromyalgia
2. ACT,MED: Comprehensive MEA response to NICE Guideline on ME/CFS (draft 2) [UK]
3. RES,NOT: Pain in CFS
4. res: Picornavirus Kills Brain Cells
5. RES:Molecule Discovered To Be Key To Pain Sensitivity
6. RES: Individuals' descriptions of living with fibromyalgia
7. RES: Cultural adaptation and validation of the "Fibromyalgia Impact Questionnaire"--Portuguese version
8. RES: Botulinum toxin for the treatment of pain syndromes
9. ACT, MED: NHS specialist CFS/ME services (UK)
10. res: Journal of CFS -Volume 13
11. ALL: Co-Cure Celebrates Its Tenth Anniversary
12. RES: Atrophic Autoimmune Pangastritis: A Distinctive Form of Antral and Fundic Gastritis Associated With Systemic Autoimmune Disease
13. RES: Evaluation of psychophysiological asymmetry in patients with fibromyalgia syndrome
14. MED, ACT: CBT, GET And Human Rights: A Response To The NICE Draft Clinical Guidelines on CFS/ME
15. RES: Asbestos as a possible major cause of malignant lung tumors(including small cell carcinoma, adenocarcinoma & mesothelioma), brain tumors (i.e. astrocytoma & glioblastoma multiforme), many other malignant tumors, intractable pain including fibromyalgia, & some cardio-vascular pathology: safe & effective methods of reducing asbestos from normal & pathological areas
16. RES,NOT: Mortality in CFS (Part 2)
17. NOT,RES: NIH Announces Awards in Chronic Fatigue Syndrome Research
18. MED, ACT: CBT, GET And Human Rights: A Response To The NICE Draft Clinical Guidelines on CFS/ME
[Return to digest index]
---------------------------------------------
This is a special digest of
Co-Cure Research & Medical posts only
Problems? Write to
mailto:mods@co-cure.org
---------------------------------------------
----------------------------------------------------------------------
Date: Tue, 24 Oct 2006 13:29:38 -0400
From: "Bernice A. Melsky"
<bernicemelsky@VERIZON.NET>
Subject: RES: Daily fatigue in women with osteoarthritis, rheumatoid arthritis, and fibromyalgia
Daily fatigue in women with osteoarthritis, rheumatoid arthritis, and
fibromyalgia.
Pain. 2006 Oct 19; [Epub ahead of print]
Zautra AJ, Fasman R, Parish BP, Davis MC.
Department of Psychology, Arizona State University, Tempe, AZ 85287-1104, USA.
PMID: 17055648
We examined between and within-person variability, affective correlates,
and diagnostic differences in daily fatigue in women with rheumatoid
arthritis (RA),
osteoarthritis (OA), and fibromyalgia syndrome (FMS). Two hundred and
fifty-five female patients recruited from the community served as
participants for this project. The patients had a physician-confirmed
diagnosis of RA (n=89), OA (n=76), or FMS (n=90). Individuals completed an
initial questionnaire and up to 32 daily diaries assessing illness symptoms
and psychosocial variables (i.e., fatigue, pain, sleep problems,
depression, and affect). The primary outcome for the current project was
variability in fatigue. We examined affective, pain, and sleep correlates
of fatigue, and tested whether these relations varied by diagnosis.
Results indicated that FMS patients had higher overall levels of and
greater daily variability in fatigue compared with the other pain groups.
For all patients, fatigue correlated highly with lower positive affect
(PA). Moreover, day-to-day increases in fatigue were associated with
decreases in PA, particularly among FMS patients, and with increases in
negative affect (NA). Daily pain was associated with increased fatigue in
all groups, although OA patients showed less pain reactivity than either
FMS or RA patients.
These findings indicate that fatigue is a common feature of rheumatologic
conditions. Nonetheless, there are important differences between RA, OA,
and FM patients in both the everyday manifestations and the biopsychosocial
correlates of fatigue.
[
Return to top]
------------------------------
Date: Tue, 24 Oct 2006 15:37:34 -0400
From: "Dr. Charles Shepherd <charlesbshepherd @lineone.net> Co-Cure
Moderator"
<co-cure-mod@LISTSERV.NODAK.EDU>
Subject: ACT,MED: Comprehensive MEA response to NICE Guideline on ME/CFS (draft 2) [UK]
[Note: This message is being resent because the original was
inadvertently truncated.]
Monday, October 23, 2006
Comprehensive MEA response to NICE Guideline on ME/CFS (draft 2)
MAY BE REPOSTED
This second draft takes account of the very helpful comments and feedback
that has been sent in by people with ME/CFS over the past week.
Further comments to the MEA are most welcome - see notes at the end.
A further draft will be prepared next week.
SECOND DRAFT
Following on from our previous statements on the September draft of the
NICE guideline on ME/CFS, and our summary of the meeting held at NICE on
Thursday 5 October, the MEA has now produced a second draft of the
comprehensive response that we intend to send to NICE at the end of this
stage in the consultation process.
This response takes account of all the feedback that the MEA has received
so far and the discussion that took place at NICE on 5 October. Thank you
to everyone who has sent in comments.
As a stakeholder in the guideline development process the MEA has a duty to
consult with its members and produce a response that reflects their views.
So we want to know if you feel that our response is appropriate and
constructive. We want to know if there are any omissions or areas where we
have been too critical, or not critical enough. We also want to know if
there are any areas where we should be praising the guideline.
In April 2007 NICE will publish a final version of a guideline on ME/CFS.
This will have a major effect on how your illness is going to be managed
for years to come.
The MEA believes that the current attempt is seriously flawed and is not
therefore fit for purpose.
Over the coming weeks and months we need to do all we can to make changes
while there is still an opportunity to do so.
_______________________________________________________________________________________
MEA RESPONSE TO THE SEPTEMBER DRAFT
The ME Association (MEA) has carefully considered the contents of this draft.
As a stakeholder in the guideline development process we have actively
sought the views of our members over the past few weeks as well.
We have also taken note of the responses to our criticisms that were made
at the meeting with NICE on Thursday 5 October.
The comments below represent the outcome of this extensive consultation
process.
OVERALL CONCLUSIONS
The MEA fully supports the view that a guideline on the assessment and
management of ME/CFS should be prepared by NICE and made available to all
health professionals in the UK.
Such a guideline must reflect the wide variety of clinical presentations
and pathophysiological mechanisms that come under the ME/CFS umbrella.
Above all, it must be acceptable to people who have this illness.
Overall, we feel that the current (ie September 2006) version of the
guideline that has been prepared by NICE is unfit for purpose and we would
not be willing to endorse it.
We have five major disagreements.
a.. First involves the unbalanced coverage of CBT and GET.
a.. Second is the failure to provide any meaningful advice on management
during the acute and very early stages of the illness before a firm
diagnosis of ME/CFS has been made.
a.. Third is the failure to provide any meaningful advice on symptomatic
management as the illness enters a more chronic stage.
a.. Fourth is the way in which it deals with issues affecting the severely
affected
a.. Fifth is the failure to acknowledge the WHO classification of ME/CFS
(and PVFS) as being neurological disorders (in section G93.3 of ICD 10) - a
position that the Department of Health also accepts - and instead adopts a
new and much wider clinical definition of ME/CFS that includes almost
anyone with chronic unexplained fatigue.
We will first elaborate on these five objections in more detail:
1 A VERY UNBALANCED ACCOUNT OF THE BENEFITS OF CBT AND GET (section 1.3.1)
Our principal disagreement involves the way in which almost all of the
management section is devoted to a manual-like approach that sets out how
the authors believe that cognitive behaviour therapy (CBT) and graded
exercise therapy (GET) should be used as an automatic first line treatment
for almost everyone who has mild to moderate ME/CFS.
The sections on CBT and GET contain numerous recommendations on how to deal
with specific management problems - most of which are based on opinion
rather than the type of evidence based medicine that normally dominates a
NICE guideline.
Some of the advice on non-pharmacological management contains sensible and
common sense suggestions. We already recommend some of these coping
strategies in our own self-help literature. But there is no reason why this
type of advice has to be given by specially trained behaviour therapists in
hospital. Where the advice is sensible, and not based purely on the
psychosocial model of abnormal illness beliefs and behaviour, it should
form part of a self-help or Expert Patient management programme. This sort
of advice could easily be given out in a primary care setting - where most
people with ME/CFS are, and will continue to be managed.
However, much of the coverage here is seriously flawed because the opinions
of those who are obviously very enthusiastic about the overall value of
hospital-based CBT and GET are given undue emphasis whereas any form of
critical opinion from people who have been treated with these approaches is
simply ignored. The Chief Medical Officer's report adopted a trident
approach to deal with this difficult issue whereby it took note of opinion
from clinicians and patients, as well as the results from published
research studies, when it came to dealing with CBT and GET.
This is crucial because patient opinion submitted to the CMO report
indicated that the results for CBT were not at all impressive with around
65% saying that this approach had not been helpful. And around 50% of
people who had been placed on a graded exercise regime reported that this
had made their condition 'worse'.
NICE has clearly not grasped the fact that the treatment trials being
quoted to support the use of CBT and GET have only used relatively small
numbers of carefully selected patients, have generally been carried out in
tertiary care centres that support the psychosocial model of ME/CFS
causation, and in some cases have had quite high drop-out rates (37% in one
GET trial). Our feedback in relation to GET dropouts is that some of these
people have gone on to relapse as a result of the exercise programme - but
this is never made clear in published results.
While preparing this response we have received feedback from someone who
has recently been treated at an internationally recognised centre where
this type of behavioural research is carried out. This person has stated
that when someone cannot build up the exercises in the speed that the
centre require, they are then told that they are not motivated enough to
follow the programme and have to leave We would be willing to forward the
complete response to NICE if requested.
CBT
With regard to CBT (sections 1.3.1.11-13), we believe it is completely
unacceptable to imply that everyone with mild to moderate ME/CFS needs to
take part in a hospital-based CBT programme that includes an underlying
assumption that symptoms are maintained by factors such as abnormal illness
beliefs and behaviour. While there are some people who come under the
diagnostic umbrella of CFS who do fit the psychosocial model of illness
perpetuation, there are many others who do not, have no psychiatric
co-morbidity, are well motivated, and are doing everything they can to try
and get better. They would, quite rightly, object to such an approach to
their management.
The Guideline Development Group (GDG) should also take note of the most
recent research study on CBT. This found that CBT did not offer any
significant overall benefit when compared to education and support and
standard medical care (reference: Cognitive behaviour therapy in chronic
fatigue syndrome: a randomised controlled trial of an outpatient group
programme. Health Technology Assessment. 2006 Oct; 10: number 37 -
available on-line at:
http://www.hta.ac.uk/fullmono/mon1037.pdf).
Neither does NICE appear to appreciate that counselling may well be just as
effective as CBT in some instances. Two relevant references are:
Chronic fatigue in general practice: economic evaluation of counselling
versus cognitive behaviour therapy. British Journal of General Practice
2001; 51: 15-18.
Chronic fatigue in general practice: is counselling as good as cognitive
behaviour therapy? A UK randomised trial. British Journal of General
Practice 2001; 51: 19-24.
GET
We have a number of major concerns about the information being given on GET
(sections 1.3.1.14 - 18).
Our first concern relates to the word exercise. Exercise is, of course, a
completely misleading term for energy management in the severely affected
group. It is also inappropriate for most people in the moderately affected
group. It may or may not be appropriate in mild cases.
The unqualified and frequent use of the term exercise clearly implies that
exercise is the key to recovery and that rest/relaxation is generally harmful.
NICE only have to look at the press coverage of the York systematic review
in the Journal of the Royal Society of Medicine to see that this is how the
media is already interpreting this type of advice. The same sort of
over-simplistic interpretation will be made by most doctors who have no
special interest in ME/CFS. What is required is a name and a practical
approach that advises people with ME/CFS on how to achieve a sensible and
flexible balance between activity or energy management (not exercise) and
rest. This will depend on the stage, severity and variability of their
condition - as we point out in some detail in our own information
literature. Some people may need to increase their activity levels whereas
others may actually need to reduce them, especially in the early weeks and
months following an acute onset - this is not what graded exercise implies.
Our second concern relates to the way in which the guideline appears to
have dealt with energy/activity management during the very early stages of
this illness (ie first few weeks and months) before a firm diagnosis of
ME/CFS has been made. At this stage we believe that a period of appropriate
rest and convalescence is essential (we are not advocating that people go
to bed and stay there) and that inappropriate exercise could well produce a
further deterioration. Is NICE really advocating graded exercise during the
very early stages of ME/CFS? This appears to be the case in section 1.2.1.10.
Our third concern relates to what is commonly referred to as the 'glass
ceiling' effect whereby people with ME/CFS often make a degree of
improvement over the prolonged course of time, but then reach a point at
which they are unable to increase their physical activity - despite high
levels of motivation. The guideline does not even acknowledge this
situation - presumably on the assumption that graded exercise will
eventually return almost everyone to normal health.
Our fourth concern relates to the advice that activity levels should
largely be maintained during a period of relapse or setback (section
1.3.1.20). We believe this advice is over simplistic and potentially
dangerous, and is once again based on opinion rather than any sound
evidence. We do not believe that spending a few days resting in bed during
a significant relapse of symptoms, certainly one caused by an infection, is
going to be harmful or result in deconditioning. This is the way in which
many people with ME/CFS successfully cope with a relapse and we believe it
would be irresponsible to ignore the views of patients yet again. We also
believe that NICE has not taken appropriate note of several research
studies which refute the role of deconditioning in the perpetuation of
symptoms.
The section covering relapse or setback is curious in that while it
provides advice on how to cope with a relapse/setback it fails to include a
list of very common causes of relapse (ie infection, over-exertion, trauma,
surgery and general anaesthetics, some types of vaccination). This is
important information that doctors ought to be aware of and passing to
their patients.
CBT AND GET
The sections on CBT and GET are unbalanced and contain advice that is
potentially harmful for a significant proportion of people who come under
the ME/CFS umbrella. We cannot therefore endorse them.
Instead, we would like to see a guideline that advocates the type of common
sense, self-help strategies (ie pacing their activities according to stage
and severity) that have been repeatedly endorsed by people with ME/CFS.
This is an approach that could be incorporated into primary care management
and/or an Expert Patient programme, and we find it strange that the Expert
Patient Programme in relation to ME/CFS is not even mentioned in the
shortened version, which will presumably form the basis for what is sent
out to health professionals.
We also wonder whether NICE is living in the real world. The clear
implication being given in this guideline (key priorities section on p6/48)
is that if people with mild to moderate ME/CFS want to improve then they
need to be referred by their GP to a multidisciplinary hospital-based
ME/CFS service that has expertise in CBT and GET. NICE acknowledges that
these services cannot be delivered by general practitioners.
But where is the money going to come from to assess and treat around
180,000 people with ME/CFS in the mild to moderate category? If an
assessment and course of CBT and/or GET costs around £1,000, the total cost
to the NHS would be around £180 million.
And where are all the cognitive behaviour therapists going to come from?
CBT services are already in a position where they cannot cope with a
rapidly increasing referral rate for common psychiatric conditions such as
anxiety and depression - a steadily worsening situation that NICE has been
well aware of for some time.
2 A FAILURE TO PROVIDE INFORMATION ON THE VERY EARLY STAGES OF THE ILLNESS
Our second major disagreement concerns the way in which the guideline has
almost completely ignored (apart from section 1.2.10) what happens in the
first four months before a diagnosis of ME/CFS is confirmed. Whilst we
agree that a period of time needs to elapse before the diagnostic label of
ME/CFS is used, there are a number of crucial points that need to be
discussed in relation to how these patients should be managed during the
very early stages (ie the first few weeks and months).
On the question of labelling, the 2005 ME Alliance report into early
diagnosis suggested that there are appropriate names that could be used
while the diagnosis of ME/CFS is being considered - one example being a
post-viral fatigue syndrome.
But what is far more important is the fact that advice on aspects such as
sleep disturbance and energy management is likely to quite differ quite
significantly from that offered once the illness enters a more chronic
stage. In regard to sleep, excessive sleep (hypersomnia) is very common at
this stage and may well form a crucial part of a natural recovery process.
We know of no evidence to suggest that people who are needing to sleep for
a long period of time at night following an acute infection should be
coerced into adopting a more normal pattern of sleeping (as in 1.3.2.1).
Anecdotal evidence is overwhelmingly in favour of a period of carefully
monitored rest during the very early stages, something that may include a
period of bed rest, followed by convalescence. Exercise in the normal sense
of the word usually has little or no role to play during this very early
stage. In fact, an inappropriate exercise programme is very likely to make
the illness worse.
3 A FAILURE TO PROVIDE AN ADEQUATE DESCRIPTION OF MANY IMPORTANT ASPECTS OF
MANAGEMENT (mainly section 1.3.4)
Our third major disagreement is that having spent most of the guideline
recommending CBT and GET, the remainder contains a totally inadequate
review of all the other aspects of management - many of which are extremely
important to patients, and are likely to be dealt with in primary care
rather than hospital-based services.
In particular, the almost non-existent coverage of pain, which for some
people is the most disabling aspect of their illness, is very poor -
especially when this is compared to the vast amount of space given to sleep
disturbance.
In other words, there is very little of practical value in this guideline
for general practitioners and members of the primary healthcare team - who
are likely to remain the main source of information, advice and support for
people with ME/CFS.
4 ISSUES AFFECTING THE SEVERELY AFFECTED (mainly section 1.4)
Although the guideline acknowledges that its recommendations regarding CBT
and GET do not apply to the severely affected, we feel that the information
that has been supplied does not take account of the enormous difficulties
currently being experienced by many people in this group when it comes to
accessing either hospital-based or domiciliary-delivered medical care,
obtaining practical support, and being refused one or more component of the
disability living allowance because both lay and medically qualified
assessors have received misinformation about the nature of this illness.
The description of severe ME/CFS (pp 4 - 5 of the short version) needs to
include the type of more severe neurological symptoms - ie blackouts,
atypical convulsions, loss of speech and swallowing necessitating tube
feeding - that are prominently referred to in section 4.2.1.2 of the CMO
report.
5 DIAGNOSTIC CRITERIA FOR ME/CFS (section 1.2)
We are very concerned at the way in which the guideline has modified the
current Fukuda research criteria for CFS (section 1.2.1.2) to produce a new
clinical criteria that extends the boundaries of what currently constitutes
ME/CFS (ie chronic unexplained fatigue + one other symptom). Many
clinicians and researchers believe that the existing research criteria are
already far too wide and as a result CFS has become a dustbin diagnosis for
anyone with unexplained chronic fatigue. The diagnostic criteria proposed
by NICE means that almost anyone with unexplained chronic fatigue, or
feeling 'tired all the time' will now be diagnosed as having ME/CFS.
The practical result is that hospital-based services, which are still
virtually non-existent in some parts of the UK, or are struggling to cope
with their existing workload in others - will be flooded with referrals for
people with unexplained chronic fatigue.
It makes no sense whatsoever to advocate what is basically a 'one treatment
fits all' approach to the extremely heterogeneous range of illness
presentations that comes under the existing ME/CFS umbrella. To try and do
this to everyone with unexplained chronic fatigue indicates a very serious
lack of judgement.
And while we appreciate that the aetiology and pathogenesis of ME/CFS falls
outside the NICE guideline remit, the situation regarding ME/CFS is unique
in that a significant proportion of doctors still do not even accept that
this illness exists as a distinct clinical entity (reference: Primary
healthcare provision and Chronic Fatigue Syndrome: a survey of patients'
and General Practitioner's beliefs. BMC Family Practice 2005; 6: 49;
epublication:
http://www.biomedcentral.com/content/6/1/49). So there must
be reference to some of the important neuroradiological, neuroendocrine and
neuroimmunological research findings that support the World Health
Organisation classification of ME/CFS as a neurological disorder.
There should also be some reference to the important new research into gene
expression that is being carried out in both the UK and the USA. This has
already identified abnormalities in gene expression which may be
characteristic of ME/CFS - a finding that could, of course, lead to a
diagnostic test and specific forms of treatment.
We are disappointed to find that the Guideline Development Group (GDG)
appear to have totally rejected the way in which the Canadian Guidelines
have, quite sensibly, moved towards a much tighter clinical definition that
clearly recognises the importance of sub-grouping under the ME/CFS umbella,
and recommends that individual differences in symptoms and signs should
play an important role in how an individual patient should be managed.
If NICE fails to take note of these crucial points relating to causation
and subgrouping in formulating a new clinical criteria, ME/CFS will
continue to be trivialised as a dustbin diagnosis with patients being
incorrectly labelled as having some sort of psychosomatic or somatiform
disorder.
As a result, people with ME/CFS will not receive the individual approach to
management that they deserve and this will add to, rather than alleviate,
the cost of health and social service provision.
We now move on to comment on some of the other conclusions and recommendations:
GENERAL PRINCIPLES OF CARE (section 1.1)
The is the one and only area where we find the content to be generally
balanced, helpful and sensible - as it sets out the common sense protocols
that should govern the management of any chronic disabling illness. We are
particularly pleased to see that information regarding the issue of
informed consent has been included here.
However, the value of the advice in this section is obviously dependent on
the quality of the advice that is contained elsewhere in the guideline.
CLINICAL ASSESSMENT
The failure to include a compehensive list of illnesses that ought to be
considered before the diagnosis is confirmed is a serious omission - as is
the failure to point out that there are important clinical and research
findings that differentiate ME/CFS from depression.
Where symptoms are being discussed in relation to disease severity (eg on
page 5 of the shortened version) it should be pointed out, as was done in
section 4.2.1.2 of the CMO report, that some people with more severe ME/CFS
may have neurological symptoms and signs such as those already referred to.
With regard to the investigation of people with a possible diagnosis of ME/CFS:
Some of the recommendations regarding the investigation of people with a
possible diagnosis of ME/CFS in section 1.2.2 suggest that the authors are
not in touch with the sort of information that patients are taking to their
doctors regarding diagnostic tests. For example, having funded research
into the value of investigations involving RNaseL (for antiviral activity)
and chronic fatigue syndrome urinary markers (CSFUMs), the ME Association
is surprised to find no mention of these tests.
We are also concerned at the lack of emphasis regarding the need to further
investigate people who, while they fit the diagnosis of ME/CFS, still have
a symptom or symptoms, which is/are more prominent than is normally found
in this illness. For example, the need to exclude sarcoidosis in someone
who also has respiratory symptoms. Or systemic lupus and parvovirus
infection in someone with joint pains. Or multiple sclerosis where
neurological symptoms and signs are difficult to differentiate between the
two - as does sometimes happen. Or an assessment for possible sleep apnoea,
with an Epworth sleepiness score, where daytime sleepiness is excessive or
comes on sudddenly.
There also needs to be far more information on where extended investigation
is required from points that are gathered during the routine history taking
(eg a positive response to a past history of blood transfusion prior to
1991 indicates the need to check hepatitis C status).
And why is the estimation of creatine kinase (section 1.2.2.2) only
recommended in children when it may be a marker of a muscle disease in adults?
With regard to the physical examination:
We are perplexed as to why there is no mention of clinical examination in
the diagnostic assessment - in particular the assessment of problems such
as dysequilibrium where a Romberg test or Fukuda test (for vestibular
function) may demonstrate abnormal findings. Equally, people with symptoms
suggesting postural hypotension should have their blood pressure checked
lying and standing, and may in some circumstances require hospital based
investigations. The various fibromyalgia trigger points need to be checked
in those patients who have a fibromyalgic component.
PROGNOSIS
The very short sections on prognosis (1.2.3.3 and 1.2.4.3) are inadequate
and fail to provide an accurate overall picture of current research
evidence on prognosis. While we accept that an approach of cautious
optimism, especially early on, should be adopted, the overall impression
being given of a generally good prognosis is not consistent with published
evidence. We suggest that the Guideline Development Group refer to the
information on prognosis that is provided in section 1.4.3 of the CMO report.
SYMPTOMATIC RELIEF AND PHARMACOLOGICAL TREATMENT (section 1.3.4)
This section is hopelessly inadequate because, for many people with ME/CFS,
providing effective management for one or more of their symptoms can be far
more imprtant than the contribution of lifestyle management..
People with ME/CFS have a number of symptoms - pain, sleep disturbance,
gastric symptoms - where a combination of self-help strategies and
medication can often be very helpful. We do not understand why the
guideline cannot provide more detailed information on the sort of
approaches that can and should be given to patients. We have already
referred to pain control, which for some is the most disabling aspect of
having ME/CFS, but there are numerous other symptoms where symptomatic
relief plays an important role in any management programme.
We enclose some examples of MEA self-help literature on pain relief and our
ABC of symptomatic management to illustrate what could actually be done here.
DIET AND NUTRITION (section 1.3.5)
Again, this is hopelessly inadequate - especially in view of the fact that
people with ME/CFS are very interested in dietary approaches and are going
to ask questions about what may or may not be helpful. They clearly need
straightforward and sensible advice that covers a wide area of dietary
management, along with advice on the vitamins, minerals and supplements
that are extensively used and recommended to people with ME/CFS.
Why, for example, is there no information about the reasons why some people
(especially those with self-imposed dietary restrictions) with ME/CFS could
be at increased risk of developing osteoporosis and how diet may be
relevant here. Why is there no mention about the value of complex
carbohydrates in helping to stabilise blood sugar levels? Why is there no
mention of the importance of a good fluid intake? - especially in relation
to those who have postural hypotension or orthostatic intolerance. Why is
there no mention of simple self-help approaches that can help in the
management of nausea (eg use of ginger) or the use of drugs such as
ondansetron if this is more severe.
Why is is there no mention of EPA supplements, which are probably the most
popular supplement currently being used by people with ME/CFS. While we
accept that there have been no randomised controlled trials to support the
use of EPA, it is untrue to say that there is 'no evidence' in relation to
this supplement (reference: The use of eicosapentaenoic acid in the
treatment of chronic fatigue syndrome. Prostaglandins, Leukotrines and
Essential Fatty Acids 2004; 70: 399 - 401).
It is also unhelpful to simply state that 'Exclusion diets are not
generally recommended for the management of CFS/ME' when irritable bowel
symptomatology is quite common in this illness and there is good evidence
to show that exclusion diets can be helpful in identifying food
intolerances - where these occur in IBS. This section should also include
advice about not going on a gluten free diet before a screening test for
coeliac disease has been carried out. We could go on.
ALTERNATIVE AND COMPLEMENTARY APPROACHES (section 1.3.6)
Again, this section is hopelessly inadequate and appears from the first
sentence - 'There are no complementary therapies that treat CFS/ME for
adults and children and their use is not recommended' - to be very
dismissive about any aspect of alternative medicine. With the lack of
recognition, or limited management input from many NHS practitioners,
people with ME/CFS have been spending large amounts of time and money in
the alternative health sector.
The pros and cons of the popular alternative treatments - eg anticandida
regimes; dubious allergy tests and treatments, Reverse therapy - commonly
aimed at people with ME/CFS must be properly reviewed, and where necessary
discredited. Approaches such as acupuncture for pain relief, which can be
supported by some degree of clinical evidence, need to be included in a
fair and balanced discussion.
SERIOUS OMISSIONS
As the CMO report acknowledged, the management of ME/CFS crosses many
boundaries. It is not just dealing with a wide range of symptoms. The NICE
guideline, while acknowledging that other management issues exist, almost
completely ignores what could and should be done in these areas.
State sickness and disability benefits, for example, are a major source of
worry for people with ME/CFS with many currently have to go to appeal in
order to obtain benefits to which they should be entitled. Any guideline on
management must, therefore, contain a section on state benefits, and make
it clear that where ME/CFS is concerned people should be entitled to
Incapacity Benefit and Disability Living Allowance where there is a genuine
need. It also needs to be pointed out that ME/CFS has been recognised as a
disease that can be covered by the Disability Discrimination Act, and that
this can be very useful in relation to employment and education.
LEGAL ISSUES
The medical defence organisations have repeatedly warned doctors that
prescriptions for exercise must be given with exactly the same care as with
a prescription drug. Failure to do so is likely to result in litigation if
harm occurs as a result of inappropriate advice. The MEA continues to
receive reports from people with ME/CFS whose condition has relapsed
following inappropriate advice about exercise and as a result we believe
that the guideline must include this warning if it continues to use the
term exercise - even when what is being referred to is activity or energy
management.
UNHELPFUL OR INAPPROPRIATE LANGUAGE
Section 1:3:1:3 'Where the adult or child's main goal is to return to
normal activities....' Many people will find this offensive as it implies
that there is a substantial proportion of people who do not want to return
to normal activities. The statement thereforet reinforces the prejudices
about sick role behaviour held by some health professionals.
TWO FINAL POINTS
1 We welcome the inclusion of information about informed consent but feel
that the guidance needs to make it clear, as did the CMO report in section
4.4.2, that benefit provision must not be made conditional on agreeing to
participate in a particular form of treatment.
2 The guidance, certainly in the shortened version, repeats itself at times
to no added effect.
CONCLUDING REMARKS
In sending in this response as a stakeholder in the guideline development
process, the MEA has consulted widely with its members and reflected their
very strong views on the composition of the current draft.
We find it hard to imagine another situation where a group of people, many
of whom have little or no direct experience in the clinical care of an
illness they are advising on, have produced such a poor quality guideline.
We cannot understand why the views of people with ME/CFS and their charity
representatives are not being listened to.
Unless NICE takes on board what the stakeholders representing patient
opinion have to say, they will have failed the stakeholder principle -
something that government continually tells us is at the heart of the
consulting and listening process.
If this draft guidance becomes definitive guidance for health professionals
in April 2007, it will be a very sad day for people with ME/CFS.
CONTACTS
If you wish to send in your views on the current NICE draft, or this second
draft of the MEA response, this can be done by clicking on following link
to email The MEA
More details on the MEA response so far, and a summary of the meeting held
at NICE on 5 October, can be found elsewhere on this blog.
The MEA blog also contains a link to the shortened version of the NICE
guideline and all other NICE documents relating to the September draft.
ENDS
[
Return to top]
------------------------------
Date: Tue, 24 Oct 2006 14:27:53 +0200
From: "Dr. Marc-Alexander Fluks"
<fluks@DDS.NL>
Subject: RES,NOT: Pain in CFS
Source: European Journal of Pain
Preprint
Date: July 2006
URL:
http://www.sciencedirect.com/science/journal/10903801
[Review]
Chronic musculoskeletal pain in patients with the chronic fatigue syndrome: A
systematic review
---------------------------------------------------------------------------
Mira Meeus(*), Jo Nijs, Kenny De Meirleir
Division of Musculoskeletal Physiotherapy, Higher Institute of Physiotherapy,
Department of Health Care Sciences, Hogeschool Antwerpen (HA), Van Aertselaer-
straat 31, 2170 Merksem, Belgium
Department of Human Physiology, Faculty of Physical Education and
Physiotherapy, Vrije Universiteit Brussel (VUB), Belgium
* Corresponding author. Tel.: +32 3 641 82 05.
E-mail address: Mira.Meeus@vub.ac.be
Received 19 February 2006; received in revised form 7 June 2006; accepted
7 June 2006
Abstract
Background
In addition to debilitating fatigue the majority of patients with chronic
fatigue syndrome (CFS) experience chronic widespread pain.
Aims
Conducting a systematic review to critically assess the existing knowledge
on chronic pain in CFS. We focussed on the definition, the prevalence and
incidence, the aetiology, the relevance and the therapy strategy for
chronic musculoskeletal pain and post-exertional pain in CFS.
Methods
To identify relevant articles, we searched eight medical search engines.
The search terms 'chronic fatigue syndrome' AND 'pain', 'nociception',
'arthralgia' and 'myalgia', were used to identify articles concerning pain
in CFS. Included articles were reviewed by two blinded researchers.
Results: Twenty-five articles and two abstract were identified and selected
for further appraisal. Only 11 search results focussed on musculoskeletal
pain in CFS patients. Regarding the standardized review of the articles, a
96% agreement between the researchers was observed. There is no consensus
in defining chronic widespread pain in CFS, and although there is little or
no strong proof for the exact prevalence, chronic pain is strongly
disabling in CFS. Aetiological theories are proposed (sleep abnormalities,
tryptophan, parovirus-B, hormonal and brain abnormalities and central
sensitisation) and a reduction of pain threshold after exercise has been
shown. Furthermore depression seemed not related to pain in CFS and a
staphylococcus toxoid vaccine caused no significant pain reduction.
Conclusions
The results from the systematic review highlight the clinical importance of
chronic pain in CFS, but only few studies addressing the aetiology or
treatment of chronic pain in CFS are currently available.
Keywords
Chronic fatigue syndrome (CFS); Musculoskeletal pain; Epidemiology; Aetiology;
Treatment; Review
1. Introduction
Chronic fatigue syndrome (CFS) is a debilitating condition that is
characterised by persistent and relapsing fatigue, lasting at least six
months, not resolved by rest, causing a marked reduction of working activity,
and exacerbated by minimal physical exercise. Fatigue is accompanied by
secondary symptoms including sore throat, memory and concentration
impairments, headache, sleep disorders, but most often muscle and joint pain.
The diagnosis of CFS is performed according to standardized clinical criteria
established by the 'Centre of Disease Control and Prevention' (CDC) in 1994
(Fukuda et al., 1994).
In addition to debilitating fatigue the majority of chronic fatigue syndrome
(CFS) patients experience chronic widespread persistent pain, such as
arthralgias and myalgias (Goldenberg et al., 1990; Goldenberg, 1991;
Buchwald, 1996; Jason et al., 1999). A population-based study revealed that
94% of the persons diagnosed with CFS report muscle aches and pain, and 84%
report joint pain (Jason et al., 1999). Nishikai et al. (2001) reported
muscle pain in 85 CFS-patients of 114 patients (74.6%). Seventy-four patients
(64.9%) complained of arthralgia. In another study 24 of 44 patients suffered
from chronic widespread pain (Nijs et al., 2004a). Furthermore clinic-based
investigations suggest that 3570% of persons with CFS meet criteria for
fibromyalgia (FM) and 2070% of individuals with FM also suffer from CFS
(Goldenberg et al., 1990; Wysenbeek et al., 1991; Norregard et al., 1993;
Buchwald and Garrity, 1994; Buchwald, 1996). Following the criteria of the
American College of Rheumatology (ACR) individuals with FM present with a
history of widespread pain and pain in at least 11 of 18 tender point sites
on digital palpation (with an appropriate force of 4 kg). Pain is considered
to be 'widespread' when all of the following are present: pain in the left
side of the body, pain in the right side of the body, pain above the waist
and pain below the waist. In addition, axial skeletal pain (cervical spine or
anterior chest or thoracic spine or lower back) must be present. Pain
complaints are present for at least three months (Wolfe et al., 1990).
Chronic fatigue accompanied by chronic musculoskeletal impairments, such as
myalgias and arthralgias, could be considered as an important subclass of CFS
(Tan et al., 2002). However it should be considered that the high frequency
of pain in persons with CFS may be due, in part, to the inclusion of myalgias
and arthralgias as two of the minor symptoms in the diagnostic criteria
following the CDC (Fukuda et al., 1994). Besides the persistent
musculoskeletal pain, CFS patients typically experience an exacerbation of
their symptoms, after previously well-tolerated levels of exercise (Fukuda et
al., 1994; Clapp et al., 1999). They experience muscle pain after a level of
exertion that does not cause any tissue damage. The worsening of symptoms is
considered to be an important reason for low compliance with graded exercise
therapy (Chaudhuri, 2002).
Musculoskeletal pain complaints appeared to be more disabling than chronic
fatigue in patients with CFS. Evidence supportive of the clinical importance
of widespread pain in CFS has been provided: correlation coefficients between
pain intensity and self-reported activity limitations and participation
restrictions (r varying between 0.51 and 0.58) were stronger than those
between fatigue and the functional status (r=0.50) (Nijs et al., 2003,
2004c). Interpreting these correlation coefficients chronic pain accounts for
2633% of the CFS patients' self-reported activity limitations and
participation restrictions (Nijs, 2005). In general, pain complaints strongly
compromise the physical (Crook et al., 1984; Becker et al., 1997), the social
(Latham and Davis, 1994), psychological (Magni et al., 1993; Becker et al.,
1997; Gureje et al., 1998), and the financial integrity (Kemler and Furnee,
2002) of the individual and his environment. Furthermore the professional and
the socio-economic consequences should be considered. A large body of
literature concerning pain complaints in patients with FM is available, since
musculoskeletal pain is the main concern in these patients. In CFS however,
fatigue is rather emphasized. Therefore, we would like to make an inventory
about what exactly is yet known about chronic musculoskeletal pain in CFS.
This might be important to identify lacunas for future research. After all,
amassing knowledge about chronic pain in CFS is essential, given the high
prevalence and the relevance of this symptom.
The aim of this study was to systematically review the existing knowledge on
chronic musculoskeletal pain in CFS. A systematic review is defined as 'a
review of the evidence on a clearly formulated question that uses systematic
and explicit methods to identify, select and critically appraise relevant
primary research, and to extract and analyse data from the studies that are
included in the review.' (NHS Centre for Reviews and Dissemination, 2001).
The systematic review thus aims to identify all valid answers from existing
research to such focused questions Explicit methods are used to judge the
quality of the literature and (crucially) the same criteria are applied to
all studies (Griffiths et al., 2005).
Concretely we aimed at answering following questions: (1) How do researchers
define chronic musculoskeletal pain, (2) What is the prevalence and incidence
of chronic musculoskeletal pain, (3) What is known about post-exertional
pain, (4) What is known about the aetiology of (post-exertional) pain, (5) Is
there evidence for the clinical relevance, and finally (6) Are there effective
treatment strategies for chronic musculoskeletal pain in CFS patients?
2. Methods
2.1. Systematic literature search
We sought to identify all studies concerning chronic musculoskeletal pain in
individuals with CFS.
To identify relevant articles, we searched Science Direct,
http://www.sciencedirect.com
Biomed Central,
http://www.biomedcentral.com
PubMed,
http://www.ncbi.nlm.nih.gov/entrez)
Article Database of the Vrije Universiteit Brussel,
http://www.vub.ac.be/BIBLIO
CEBAM,
http://www.cebam.be
Cochrane Central Register of Controlled Trials,
http://www.cochrane.org
Cochrane Database of Systematic Reviews,
http://www.cochrane.org
and Web of Science,
http://isiwebofknowledge.com
covering the period 1972 to December 2004. The combination of the search
terms 'chronic fatigue syndrome' AND pain, nociception, arthralgia and
myalgia, was used to identify articles concerning pain in CFS. These key
words are not really specific, because we anticipated that there would not be
a large body of literature concerning pain in CFS.
To be included in the review an article had to meet the following criteria:
(1) subjects of the study had to be individuals diagnosed with CFS; (2) the
author(s) studied the concept of musculoskeletal pain in these individuals;
(3) both the words 'pain', 'nociception', 'arthralgia' or 'myalgia'
together with the phrase 'chronic fatigue syndrome' must be presented in
the title; and (4) the studies were presented in English written full texts.
If any of the four inclusion were not fulfilled, then the article was
excluded from the literature review.
Afterwards we focussed on the search results that fulfilled these four
criteria. Two independent, blinded researchers (MM and JN) reviewed the
selected manuscripts, i.e., they were not acquainted with each others
evaluation of the search results. Both reviewers achieved the degree of
Master of Science and concentrated on research regarding CFS for respectively
three and six years. JN already obtained the degree of PhD on this matter.
Articles were categorised by the reviewers following study design (clinical
trial/review/meta-analysis/case
report/cross-sectional/prospective/hypothetical)
and study aim (aetiology/prevalence/incidence/treatment/case report/diagnosis).
In case of clinical trials, the reviewers were expected to specify the used
diagnostic criteria for CFS and widespread pain, and to assess the
methodological quality of the trial. In order to make a clear separation
between clinical trial and cross-sectional studies, following definitions
were used. The US National Library of Medicine (NLM) defines a clinical trial
in the Medical Subject Headings (MeSH) as a preplanned study of the safety,
efficacy, or optimum dosage schedule (if appropriate) of one or more
diagnostic, therapeutic, or prophylactic drugs, devices, or techniques
selected according to predetermined criteria of eligibility and observed for
predefined evidence of favourable and unfavourable effects. A cross-sectional
study is defined as a study in which the presence or absence of disease or
other health-related variables are determined in each member of the study
population or in a representative sample at one particular time (NLM, 2002).
Methodological quality factors were derived from a general knowledge of the
literature on bias (for example, importance of comparable groups). The
'check-list', used to categorise and to assess the search results, is shown
in Table 1. After reviewing the selected articles, the results of both
researchers were compared and differences were analysed. In case of
disagreement, the reviewers screened the manuscript a second time and the
point of difference was discussed. Both reviewers got the opportunity to
argue and to convince the other in order to obtain a consensus. A consensus
means the same answers since the possible answers were rather limited as
mentioned in an earlier paragraph (study design and study aim) and as shown
in Table 2 (yes, no, not applicable). When a consensus was impossible, both
views were recorded.
Finally the results were analysed and the existing knowledge off chronic pain
in CFS was summarised.
3. Results
3.1. Study selection
Twenty-five articles and two abstracts were identified by the literature
search and selected for further appraisal. Eleven of the 27 search results
were considered after screening following the already mentioned selection
criteria. Afterwards the 11 manuscripts were screened and reviewed by the two
independent researchers. In most cases (96% or 184 of the 192 items) the two
researchers agreed. After a second review and a comparison of the eight
differences, the reviewers reached a consensus for six items. Only twice, the
two assessors could not agree. The properties of the 11 studies that
fulfilled the four inclusion criteria are presented in Table 2.
3.2. Study characteristics
Two of the 11 remaining articles were case reports. One manuscript was a
hypothetical article. Furthermore the remainders included one clinical trial
and one review, and finally one prospective and five cross-sectional studies.
Focussing on the study aim of the manuscripts, 10 of them concerned the
aetiology of pain, of which the review also described the prevalence and two
other articles were completed by the incidence and by diagnostic
considerations. Besides those 10 articles, one focussed on a possible
treatment and the last one targeted the prevalence and epidemiology of pain
in CFS.
Another point of interest were the diagnostic criteria used to define CFS
patients and widespread pain. In four cases the 1994 CDC criteria (Fukuda et
al., 1994) were used (see Section 1). In two articles the older 1988 CDC
criteria were applied (Holmes et al., 1988). Morriss et al. (1999) used the
Oxford criteria (Sharpe et al., 1991). In the review, the hypothetical
article and the case report by Van Houdenhove (2003), diagnostic criteria
were not applicable. Only three research groups defined widespread pain,
following the American College of Rheumatology (ACR) classification (Wolfe et
al., 1990). Andersson et al. (1998) and Morriss et al. (1999) did not only
use the criteria for widespread pain, as defined by ACR. Patients included in
their investigations had to meet the criteria for FM (see Section 1:
widespread pain and 11 of the 18 tender point), described by ACR (Wolfe et
al., 1990). Study criteria are thus even more strict, because in order to
fulfil the FM criteria tender point have to be controlled.
3.3. Methodological quality
The evaluation of the methodological quality was not applicable for all the
manuscripts (i.e., the review and the hypothetical article). The two case
reports included three and four subjects. The number of subjects included in
the prospective study, the cross-sectional studies, and the clinical trial
varied between 13 and 145. Evaluation points one to five of Table 2 (1:
comparable control group?; 2: accounted for gender as a potential
confounder?; 3: blind assessment?; 4: outcome measurements defined?; 5:
statistical methods clearly described?) could be applied to the
cross-sectional and the prospective study. The clinical trial could be
subjected to the entire assessment. A score, dependent on the applicable
evaluation points, was given to these studies. The results are shown in Table
3. Only one study (Kerr et al., 2002) was given a maximum score (4/4).
Besides listing the different search results and their characteristics, this
review attempts to answer, as presented below, the six key questions asked in
Section 1. Table 4 will clarify the current findings concerning these six
questions, based on the included manuscripts.
3.4. How do researchers define chronic musculoskeletal pain?
As already mentioned only three research applied the ACR criteria for
widespread pain (Wolfe et al., 1990). In the other investigations the term
'chronic musculoskeletal pain' is not used or not defined, as for example
in the review, the case report of Van Houdenhove (2003), the hypothetical
article and the study of Lindal et al. (1996), Whelton et al. (1992) and
Whiteside et al. (2004). They talk about (musculoskeletal) pain complaints in
general. Others simply talk about arthralgias (Kerr et al., 2002) and
myalgias (Priori et al., 1994).
3.5. Prevalence
The review of Bradley et al. (2000) mentions that widespread pain is indeed
quite common in patients with CFS and refers even so to the study of Jason et
al. (1999), in which 94% of the CFS patients reported muscle aches and 84%
reported joint pain. Also the overlap between CFS and FM is described in the
review. Arthralgias, myalgias, and other pain complaints show the greatest
overlap between sufferers with FM and CFS (Bradley et al., 2000). Van
Houdenhove (2003) even concluded that there is preliminary evidence for a
relationship between CFS/FM and complex regional pain syndrome type I, based
on many clinical features similar with CFS and FM, such as a predominance in
women, frequent traumatic onset and allodynia or hyperalgesia.
Most frequent experiences of pain in CFS, reported in the study of Lindal et
al. (1996) were localised in the neck and right buttock (11 out of 23
patients, or 44%), upper parts of the chest, left calf and lower back (10 out
of 23 patients, or 40%). The investigators used a picture of a human body,
divided into grids, as described by Lindal (1993). Patients had to mark the
grids where they experienced pain.
3.6. Clinical relevance
Nijs et al. (2005) describe the high disabling character of the chronic
musculoskeletal pain in patients with CFS. Chronic pain accounts for up to
33.6% of the CFS patients' self-reported activity limitations and
participation restrictions. Chronic pain would even be more disabling than
chronic fatigue.
3.7. Post-exertional pain
Following the 1994 CDC criteria patients with CFS typically experience
worsening of symptoms after previously well-tolerated levels of exercise
(Fukuda et al., 1994). Whiteside et al. (2004) reported that healthy
volunteers presented with a mean increase of the pressure pain threshold
(PPT) of 2.7 Newton, measured on the skin fold between thumb and the second
finger. CFS patients, in contrary, showed a mean reduction of the PPT of 4.7
Newton. Increased perception of pain/fatigue after exercise may be indicative
of a dysfunction associated with the central anti-nociceptive mechanism.
Post-exertional myalgia and chronic muscle pain have implications for
successful rehabilitation programmes in CFS. However Nijs et al. (2004b)
found no associations between pain-related fear of movement, measured with
the Tampa Scale for Kinesiophobia-Dutch version, and exercise capacity and
activities limitations and participation restrictions in CFS patients
experiencing widespread pain.
3.8. Possible causes
Bradley et al. (2000) list several possible causes for the pain complaints
seen in CFS. They suggest that abnormally low hypothalamic levels of CRH may
disrupt the function of several biologic systems involved in pain modulation.
Secondly, brain abnormalities are put forward. Pain experiences of patients
with CFS may be related to low resting state levels of functional activity in
the brain stem (Bradley et al., 2000).
The high prevalence of psychiatric comorbidity, and in particular depression,
often leads to suggestions that CFS is merely a somatic presentation of
depression. Morriss et al. (1999) found that CFS-patients with depressive
disorder and CFS-patients without depressive disorder did not differ from
each other, but experienced significantly more widespread bodily pain
(defined by the ACR criteria), self-rated pain, tension headaches and
lifetime medically unexplained symptoms than the patients with only a primary
unipolar depressive illness. In contrary, CFS patients scoring 11 or more on
the anxiety subscale of the HAD (Hospital Anxiety and Depression Scale) had
significantly more tender points on examination than CFS patients scoring
below 11 on this scale (Morriss et al., 1999).
Sleep patterns in patients with CFS has been studied by Whelton et al.
(1992). They showed greater difficulty falling asleep, reduced sleep
efficiency and rapid eye movement (REM) sleep in patients with CFS, compared
to healthy subjects. Patients showed also more alpha electroencephalographic
(EEG) activity during non-REM sleep. Their altered sleep physiology and
symptoms are similar to those observed in FM (Whelton et al., 1992).
Priori et al. (1994) described four adolescents who developed a syndrome
indistinguishable from CFS as defined by Holmes et al. (1988) after
therapeutic ingestion of L-tryptophan and subsequent to the development of a
transient rise in eosinophil count and severe myalgia. Following parovirus B
19 infection, 13% (5 of the 39 cases) of the patients developed CFS, as
defined by Fukuda et al. (1994) associated with severe arthralgia (80% or 4
of the 5 patients) (Kerr et al., 2002).
Finally, it is hypothesised by Nijs et al. (2005) that sensitisation of
central pain processing pathways explains chronic widespread pain in patients
with CFS and that nitric oxide (NO)-levels are related to central pain
processing in subjects with CFS experiencing chronic widespread pain. Their
hypothetical explanation is based on the current understanding of the
pathoimmunity of CFS, together with the observations by Vikman et al. (2003),
concerning the NO-dependent reduction of inhibitory activity of the central
nervous system and consequent central sensitisation. In addition to the
immunological contribution, behavioural changes, such as somatisation,
catastrophising and activity-avoidance may induce central sensitisation (Nijs
et al., 2005). This link is founded on the findings that these cognitive
styles and personality traits may result in sensitisation of dorsal horn
spinal cord neurons (through inhibition of descending tracks in the central
nervous system) (Zusman, 2002).
3.9. Possible treatment
The current knowledge about possible treatment strategies for pain
complaints in CFS, is scarce. Treatment of depression per se is likely to
make little clinical impact on reported pain, psychophysiological disorders
such as tension headache and irritable bowel syndrome or other medically
unexplained symptoms in CFS patients but may improve their perception of
their health and social function (Morriss et al., 1999).
One study addressed to the effect of staphylococcus toxoid vaccine on pain
(Andersson et al., 1998). The same research group performed further studies
on this matter (Zachrisson et al., 2002). This approach is based on the
potential link between infectious illnesses and CFS (Wilson et al., 1994) and
on the personal experiences of the authors that prolonged Staphylococcus
vaccination, aiming at stimulating the immune system, resulted in clinical
improvement. The randomised and double-blind study included 28 women,
fulfilling the criteria for FM established by the ACR and the CDC-criteria
for CFS. They were randomly allocated to the placebo treatment (injection of
sterile water) or to the vaccination treatment (injection of Staphylococcus
toxoid). The vaccine group showed a significant overall clinical improvement,
compared with the pre-treatment results and compared to the improvement in
the placebo group. Pain severity was reduced, without intergroup differences.
The intergroup differences concerning Comprehensive Psychopathological Rating
Scale 'pain' bordered on significance (p>0.1). The increase in PPT, both
in placebo group and in treatment group, bordered on significance in the
vaccine group (p>0.1).
4. Discussion
Summarising the actual knowledge concerning chronic musculoskeletal pain in
CFS is difficult given the dearth of appropriate studies of good
methodological quality. In practicing Evidence Based Medicine (EBM),
physicians require relevant studies, with appropriate strength. Several
rankings of the strength of evidence generated by different types of clinical
research designs have been presented. In addressing a particular clinical
issue, clinicians or policy-makers can base their decision making on the
types of clinical reports that have been published along with an assessment
of the strengths and weaknesses of each study. Table 5 presents the hierarchy
of scientific evidence following Sackett (1989). Interpreting this table in
relation to the present search results, we still have a lot of work on hand.
Search results of this literature study are chiefly situated in the lowest
levels of the hierarchy. However, as interpreted by Green and Byar (1984),
proceeding down the list, there is a broader and broader base on which to
establish one's conclusions. All of the types of studies have played a role
in the development of medical science. All of them are useful, and they all
have a role in EBM. However, the basic issue is which type of evidence one
should rely on the most. Thus, a foundation towards research on
musculoskeletal pain in patients with CFS has been laid, but more
investigations of good quality are indispensable, aspiring to EBM in CFS. In
addition, although reviews are quite high classified in Table 5, it is not
always appropriate to include reviews (and even meta-analyses) in a new
review. In the current systematic review we included the review of Bradley et
al. (2000), but one must be careful in using Bradley's findings and in
drawing conclusions, given the different search methods and the different
selection criteria. We focussed on conduction a systematic review, in order
to supervise the sources and in order to execute a reproducible
investigation, therefore information extracted [in the current review, e.g.,
the prevalence and possible aetiological theories traced in the review of
Bradley et al. (2000)] from other reviews should be handled with caution.
Furthermore, the number of investigations about a certain aspect of the
chronic pain is too small to give a useful overview about incidence,
consequences, possible causes or treatment strategies for musculoskeletal
pain complaints in CFS patients. Anno 2005 it is known that an important
subgroup of patients diagnosed with CFS suffers from chronic widespread pain,
especially myalgias and arthralgias. Furthermore studies provided preliminary
evidence for the huge impact of pain complaints. Despite these facts, neither
an appropriate explanation nor an appropriate therapy is yet available. The
current literature has led to the development of a small number of models of
the development of pain in CFS. However, relatively little work has been
performed to test hypotheses based on these models. Consequently, possible
therapies are withheld.
The methodological problems associated with the study of this disorder may
account for the lack of experimental proofs. The literature reviewed
previously shows that the recruitment of the patients is the first point of
discussion. It is required to recruit only patients who meet criteria for
CFS. The 1994 CDC criteria for CFS are most often frequented. Unfortunately
not all investigators used these criteria. In the study of Lindal et al.
(1996) for example, the subject were diagnosed with an illness like CFS in an
epidemic nearly 50 years ago in Iceland. Morriss et al. (1999) included
patients with CFS defined by operationalised Oxford consensus research
criteria (Sharpe et al., 1991). Secondly, subjects of different studies must
be comparable and representative for the population of CFS patients. That is
not the case in the investigation where pain complaints were localised
(Lindal et al., 1996). The mean age of the 23 women included, was 62.9 years
(SD=9.1) and all had symptoms for more than 50 years. Given the
non-representative sample such results can not be generalised to the CFS
population. In addition, when studying pain results should be accounted for
gender as a potential confounder. Females often have lower thresholds,
greater ability to discriminate, higher pain ratings, and less tolerance of
noxious stimuli than males (Berkley, 1997). Women report also greater levels
of pain catastrophising (Edwards et al., 2004). Finally studying CFS patients
with generalised pain complaints, it is proposed that researchers around the
world utilise the criteria for widespread pain of the American College of
Rheumatology (Wolfe et al., 1990). This definition was used in only three
investigations. The varying results for prevalence, as outlined in Section 1,
are likely due to the different definitions of musculoskeletal pain used in
the different investigations. Several investigators reported the quantity of
patients that simply suffer from muscle pain or joint pain. Therefore these
frequencies are higher. To talk about chronic widespread pain, it is
considered to use the ACR criteria of 1990. In addition, several study
protocols require a washout of psychoactive and pain-modulating medications
(Bradley et al., 2000).
In contrary, a large body of scientific literature regarding the etiology of
chronic pain complaints in fibromyalgia (FM) is currently available. This may
be surprising given the similarities in both diseases. Is there even any good
evidence that chronic pain mechanism are different between FM and CFS?
However, there is evidence for other abnormalities in CFS, like immunological
abnormalities, the dysregulation of RNase L (Suhadolnik et al., 1994, 1999),
and autonomic abnormalities (Naschitz et al., 2001) typically seen in
patients with CFS and not in patients with FM. Also on pain processing there
is evidence for differences between the two syndromes, e.g., the brain
abnormalities. Patterns of functional brain activity in patients with FM are
quite different from those in patients with CFS. Patients with CFS, relative
to controls, showed significantly lower blood perfusion in the brain stem
(Costa et al., 1995; Tirelli et al., 1998). Patients with FM exhibited
significant lower rCBF levels, during rest, in the thalamus and the caudate
nucleus (Mountz et al., 1995). Furthermore Substance P has found to be
elevated in CSF of FM patients (Russell et al., 1994) and not in patients
with CFS (Evengard et al., 1998). Furthermore, some peculiarities has been
proofed in FM and not yet in CFS; such as increased temporal summation
(Sorensen et al., 1998; Staud et al., 2001; Price et al., 2002) and spatial
summation, dysregulated descending pain inhibitory control (Kosek and
Hansson, 1997; Lautenbacher and Rollman, 1997; Vierck et al., 2001; Julien et
al., 2005), hypersensitization of spinal cord neurons (Banic et al., 2004),
etc. Thus, as well differences as similarities between the two diseases has
been shown. In order to distinguish between FM and CFS, investigations should
only include patients who only fulfill the criteria of one syndrome and that
would be, clinically, rather unimportant, knowing that the majority of
patients present with a combination of the diseases. In future research it
would be more interesting, in our opinion, to apply protocols similar to
those used for FM patients on CFS patients, for example the protocols
addressing spatial and temporal summation or inhibitory pain control as
described by the previous mentioned investigators. Those more advanced
protocols, could be preceded by more basic research, given the lack of
elementary knowledge on chronic pain in CFS. For example, until now there is
not much information on specific pain characteristics in CFS (intensity,
variation, course, etc.). In addition, we do not know if this widespread pain
was preceded by more localized pain and there is not really certainty about
the existence of hyperalgesia or allodynia in CFS. Is the chronic pain in CFS
accompanied by other symptoms or complaints, like a dysregulated
stress-system or decreased muscle endurance as the result of muscle pain?
Based on those elementary findings in order to describe or classify the pain
in CFS, further research could even so focus on the different hypothetical
causes of pain in CFS and the possible treatment strategies for these
complaints. For example, to test the hypothesis of the central sensitisation
(as a cause of the pain) in an indirect manner, by comparing PPT of healthy
controls and CFS patients in relation to painful spots indicated by the
subjects on a picture of the human body. Normally, PPT on pain free spots
should be similar in controls and in patients, if not the results would
provide preliminary and indirect evidence for central sensitisation in
patients with CFS.
To conclude, the preceding review shows that progress has been made towards
understanding chronic widespread pain in patients diagnosed with CFS. Several
hypotheses have been proposed, but until the present they are not yet
experimentally tested. The proposed models should be used to further research
focussed on possible causes and treatment strategies of pain complaints in
CFS, in order to produce sustained improvements in these patients' pain
experiences.
Tables
Table 1. Evaluation criteria methodological quality
-------------------------------------------------------------------------
Criteria
-------------------------------------------------------------------------
1. Comparable control group?
2. Accounted for gender as a potential confounder?
3. Blind assessment (in case of comparison of CFS patients with
controls)
4. Outcome measurements clearly described?
5. Statistical methods clearly described?
6. Co-interventions avoided?
7. Intention to treat analysis?
8. Randomisation?
9. Randomisation procedure described?
10. Drop outs and reasons mentioned?
11. Double blind? Procedure?
12. Follow-up?
-------------------------------------------------------------------------
Table 2. Assessment of the included articles
-------------------------------------------------------------------------------------------------------------------
Diagnostic criteria Aim Design N 1 2
3 4 5 6 7 8 9 10 11 12
-------------------------------------------------------------------------------------------------------------------
Van Houdenhove (2003) Aetiology, Case report 3 /
/ / / / / / / / / / /
diagnosis,
case report
Kerr et al. (2002) Fukuda et al. (1994) Aetiology, Prospective 101
+ + / + + / / / / / / /
incidence
Priori et al. (1994) Holmes et al. (1988) Aetiology, Case report 4 /
/ / + / / / / / / / /
case report
Bradley et al. (2000) / Aetiology, Review / / / /
/ -* / / / / / / /
prevalence
Morriss et al. (1999) Oxford 1991, ACR 1990 Aetiology Cross-sectional
145 + - + + + / / / / / / /
Nijs et al. (2005) / Aetiology Hypothetical /
/ / / / / / / / / / / /
Andersson et al. (1998) Fukuda et al. (1994), Treatment Clinical trial
28 + + + + + - - - - + + +/-
ACR 1990
Lindal et al. (1996) Iceland disease Prevalence Cross-sectional
23 - + / + - / / / / / / /
epidemiological
Whiteside et al. (2004) Fukuda et al. (1994) Aetiology Cross-sectional
10 + + / + +/- / / / / / / /
Nijs et al. (2004a) Fukuda et al. (1994) Aetiology Cross-sectional
64 - - / + + / / / / / / /
ACR 1990
Whelton et al. (1992) Holmes et al. (1988) Aetiology Cross-sectional
26 + - / + + / / / / / / /
-------------------------------------------------------------------------------------------------------------------
1: comparable control group?; 2: accounted for gender as a potential
confounder?; 3: blind assessment?; 4: outcome
measurements defined?; 5: statistical methods clearly described?; 6:
co-interventions?; 7: intention to treat?; 8:
randomised?; 9: randomisation procedure described?; 10: drop-out mentioned?;
11: double-blind?; 12: follow-up?; +:
clearly described; : not mentioned; /: not applicable; *: literature search not
described.
Table 3. Score obtained following the methodological evaluation
-------------------------------------------------------------------------
N Score Lacuna
-------------------------------------------------------------------------
Kerr et al. (2002) 101 4/4 /
Morriss et al. (1999) 145 4/5 female/male
Andersson et al. (1998) 28 7/12 Co-interventions?,
intention to treat?,
no randomisation,
follow-up?
Lindal et al. (1996) 23 2/4 Controls, statistics?
Whiteside et al. (2004) 26 3/4 female/male
Nijs et al. (2004a) 64 2/4 Controls, female/male
-------------------------------------------------------------------------
Female/male: not accounted for gender as a potential confounder.
Table 4. Present knowledge based on search results
-------------------------------------------------------------------------------------------------------------------------------------------------------
Define pain Prevalence-incidence
Post-exertional Aetiology Relevance Treatment
pain
-------------------------------------------------------------------------------------------------------------------------------------------------------
Van Houdenhove (2003) Pain / / /
/ /
Kerr et al. (2002) Arthralgia / / Parovirus
B19 / /
Priori et al. (1994) Myalgia / /
L-tryptophan / /
Bradley et al. (2000) Pain 84% arthralgia and / flCRH,
brainstem / /
94% myalgia (Jason activity
et al., 1999)
Morriss et al. (1999) ACR 1990 / / No
relation with / Depression no influence
depression,
but on pain, but + for
relation
tender perception of health
points-anxiety?
and social functioning
Nijs et al. (2004a) ACR 1990 / / /
/ /
Andersson et al. (1998) ACR 1990 / / /
/ Staphylococcus toxoid
vaccine
-> overall
clinical
improvement,
and
trend for | pain
reduction
V
Lindal et al. (1996) Pain Localisation: neck / /
/ /
and right buttock,
upper chest, left
calf and lower back
Whiteside et al. (2004) (Post-exertional) / Reduction
pain / / /
pain threshold
after
exercise
Nijs et al. (2005) Chronic widespread / / Central
sensitisation Pain 33.6% variance /
pain by NO and by of functioning
behavioural
changes
Whelton et al. (1992) Musculoskeletal / / Sleep
abnormalities / /
pain
-------------------------------------------------------------------------------------------------------------------------------------------------------
Overview of the answers found in the included articles on the six key question.
Table 5. Hierarchy of evidence (Sackett, 1989)
-------------------------------------------------------------------------
Level 1 (1a) RCTs that are sufficiently large to be either: positive,
with a small risk of being falsely positive or negative, with a
small risk of being falsely negative
(1b) Meta-analyses of individual patient data (ie, analyses of
raw, unprocessed data on individual patients enrolled in
previously conducted RCT s)
Level 2 (2a) RCTs that are not sufficiently large to confidently detect
(or rule out) a treatment effect
(2b) Meta-analyses of the literature (i.e,, systematic reviews
integrating the processed findings of previously published RCTs)
Level 3 Cohort observational studies comparing treated patients with
concurrent, nonrandomised controls
Level 4 Cohort observational studies comparing treated patients with
historical controls
Level 5 (5a) Case-series describing the experience of treated patients
and using no controls
(5b) Expert opinion
-------------------------------------------------------------------------
References
Andersson M, Bagby JR, Dyrehag L-E, Gottfries C-G. Effects of
staphylococcus toxoid vaccine on pain and fatigue in patients with
fibromyalgia/chronic fatigue syndrome. Eur J Pain 1998;2:133-42.
Banic B, Petersen-Felix S, Andersen OK, Radanov BP, Villiger PM,
Arendt-Nielsen L, et al. Evidence for spinal cord hypersensitivity
in chronic pain after whiplash injury and in fibromyalgia. Pain
2004;107:7-15.
Becker N, Thomsen AB, Olsen AK, Sjogren P, Bech P, Eriksen J. Pain
epidemiology and health related quality of life in chronic non-
malignant pain patients referred to a Danish multidisciplinary pain
center. Pain 1997;73:393-400.
Berkley KJ. Sex differences in pain. Behav Brain Sci 1997;20:371-80.
Bradley LA, McKendree Smith, Alarcon GS. Pain complaints in
patients with fibromyalgia versus chronic fatigue syndrome. Curr
Rev Pain 2000;4:148-57.
Buchwald D. Fibromyalgia and chronic fatigue syndrome: similarities
and differences. Rheum Dis Clin North Am 1996;22:219-43.
Buchwald D, Garrity D. Comparison of patients with chronic fatigue
syndrome, fibromyalgia, and multiple chemical sensitivities. Arch
Intern Med 1994;154:2049-53.
Chaudhuri A. chronic fatigue syndrome and myalgic encephalomyelitis.
Lancet 2002;359:1698-9.
Clapp LL, Richardson MT, Smith JF, Wang MQ, Clapp AJ, Pieroni
RE. Acute effects of thirty minutes of light-intensity, intermittent
exercise on patients with chronic fatigue syndrome. Phys Ther
1999;79:749-56.
Costa DC, Tannock C, Brostoff J. Brainstem perfusion is impaired in
chronic fatigue syndrome. QJM 1995;88:767-73.
Crook J, Rideout E, Browne G. The prevalence of pain complaints in a
general population. Pain 1984;18:299-314.
Edwards RR, Haythornthwaite JA, Sullivan MJ, Fillingim RB.
Catastrophizing as a mediator of sex differences in pain: differential
effects for daily pain versus laboratory-induced pain. Pain
2004;111:335-41.
Evengard B, Nilsson CG, Lindh G, Lindquist L, Eneroth P,
Fredrikson S, et al. Chronic fatigue syndrome differs from
fibromyalgia. No evidence for elevated substance P levels in
cerebrospinal fluid of patients with chronic fatigue syndrome.
Pain 1998;78:153-5.
Fukuda K, Straus S, Hickie I, Sharpe MC, Dobbins JG, Komaroff A.
The chronic fatigue syndrome: a comprehensive approach to its
definition and study. Ann Intern Med 1994;121:953-9.
Goldenberg DL. Fibromyalgia, chronic fatigue syndrome, and myo-
fascial pain syndrome. Curr Opin Rheum 1991;3:247-58.
Goldenberg DL, Simms RW, Geiger A, Komaroff AL. High frequency
of fibromyalgia in patients with chronic fatigue seen in primary
care practice. Arthritis Rheum 1990;33:381-7.
Green SB, Byar DP. Using observational data from registries to
compare treatments: the fallacy of omnimetrics. Stat Med
1984;3:361-70.
Griffiths P, Edwards M, Forbes A, Harris R. Postacute intermediate
care in nursing-led units: a systematic review of effectiveness.
Int J Nurs Stud 2005;42:107-16.
Gureje O, Von Korff M, Simon GE, Gater R. Persistent pain and well-
being. A World Health Organisation study in primary care. J Am
Med Assoc 1998;280:147-51.
Holmes GP, Kaplan JE, Gantz NM, Komaroff AL, Schonberger LB,
Strauss SE, et al. Chronic fatigue syndrome: a working case
definition. Ann Intern Med 1988;108:387-9.
Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV,
Taylor RR, et al. A community-based study of chronic fatigue
syndrome. Arch Inter Med 1999;159:2129-37.
Julien N, Goffaux P, Arsenault P, Marchand S. Widespread pain in
fibromyalgia is related to a deficit of endogenous pain inhibition.
Pain 2005;114:295-302.
Kemler MA, Furnee CA. The impact of chronic pain on life in the
household. J Pain Sympt Manage 2002;23:433-41.
Kerr JR, Bracewell J, Laing I, Mattey DL, Bernstein RM, Bruce IN,
et al. Chronic fatigue syndrome and arthralgia following parvo-
virus B19 infection. J Rheumatol 2002;29:595-602.
Kosek E, Hansson P. Modulatory influence on somatosensory
perception from vibration and heterotopic noxious conditioning
stimulation (HNCS) in fibromyalgia patients and healthy subjects.
Pain 1997;70:41-51.
Latham J, Davis BD. The socioeconomic impact of chronic pain.
Disabil Rehab 1994;16:39-44.
Lautenbacher S, Rollman GB. Possible deficiencies of pain modulation
in fibromyalgia. Clin J Pain 1997;13:189-96.
Lindal E. Pain terms and the localization of back pain on a pain
drawing according to grid areas. In: Ernst E, Jaysion MIV, Pope
MH, Porter RW, editors. Advances in idiopathic low back
pain. Vienna: Blackwell-MZT; 1993.
Lindal E, Bergman S, Thorlacius S, Stefansson JG. The localization of
pain in chronic fatigue syndrome on a pain drawing according to
grid areas. Percept Mot Skills 1996;83:508-10.
Magni G, Marchetti M, Moreschi C, Merskey H, Luchini SR. Chronic
musculoskeletal pain and depressive symptoms in the National
Health and Nutrition Examination. I. Epidemiologic follow-up
study. Pain 1993;53:163-8.
Morriss RK, Ahmed M, Wearden AJ, Mullis R, Strickland P, Appleby
L, et al. The role of depression in pain, psychophysiological
syndromes and medically unexplained symptoms associated with
chronic fatigue syndrome. J Affect Disord 1999;55:143-8.
Mountz JM, Bradley LA, Modell JG, Alexander RW, Triana-Alexander M,
Aaron LA, et al. Fibromyalgia in women. Abnormalities of regional
cerebral blood flow in the thalamus and the caudate nucleus are
associated with low pain threshold levels. Arthritis Rheum 1995;
38:926-38.
Naschitz JE, Sabo E, Naschitz S, Shaviv N, Rosner I, Rozenbaum M,
et al. Hemodynamic instability in chronic fatigue syndrome:
indices and diagnostic significance. Semin Arthritis Rheum
2001;31:199-208.
NHS Centre for Reviews and Dissemination. Undertaking systematic
reviews of research on effectiveness: CRD guidelines for those
carrying out or commissioning reviews. CRD, York 2001.
Nijs J. Generalized joint hypermobility: an issue in fibromyalgia and
chronic fatigue syndrome? J Bodywork Mov Ther 2005;9:310-7.
Nijs J, Vaes P, McGregor N, Van Hoof E, De Meirleir K.
Psychometric properties of the Dutch chronic fatigue syndrome
activities and participation questionnaire (CFS-APQ). Phys Ther
2003;83:444-54.
Nijs J, De Meirleir K, Truijen S. Hypermobility in patients with
chronic fatigue syndrome: preliminary observations. J Musculoskel
Pain 2004;12:9-17.
Nijs J, Vanherbergen K, Duquet K, De Meirleir K. Chronic fatigue
syndrome: lack of association between pain-related fear of move-
ment and exercise capacity and disability. Phys Ther 2004;84:696-
705.
Nijs J, Cloostermans B, McGregor N, Vaes P, De Meirleir K.
Construct validity and internal consistency of the chronic fatigue
syndrome activities and participation questionnaire (CFS-APQ).
Physioth Theory Pract 2004;20:31-40.
Nijs J, Van de Velde B, De Meirleir K. Pain in patients with chronic
fatigue syndrome: does nitric oxide trigger central sensitization?
Med Hypothes 2005;64:558-62.
Nishikai M, Tomomatsu S, Hankins RW, Takagi S, Miyachi K, Kosaka
S, et al. Autoantibodies to a 68/48 kDa protein in chronic fatigue
syndrome and primary fibromyalgia: a possible marker for hyper-
somnia and cognitive disorders. Rheumatology 2001;40:806-10.
National Library of Medicine. Medical subject headings (MeSH).
Bethesda MD, 2002.
Available from:
http://www.nlm.nih.gov/mesh/meshhome.html.
Norregard J, Bulow PM, Prescott E, Jacobsen S, Danneskiold-Samsoe
B. A four-year follow-up study in fibromyalgia. Relationship to
chronic fatigue syndrome. Scand J Rheumatol 1993;22:35-8.
Price DD, Staud R, Robinson ME, Mauderli AP, Cannon R, Vierck
CJ. Enhanced temporal summation of second pain and its central
modulation in fibromyalgia patients. Pain 2002;1-2:49-59.
Priori R, Conti F, Luan FL, Arpino C, Valesini G. Chronic fatigue: a
peculiar evolution of Eosinophilia Myalgia Syndrome following
treatment with L-tryptophan in four Italian adolescents. Eur J
Pediatr 1994;153:344-6.
Russell IJ, Orr MD, Littman B, Vipraio GA, Alboukrek D, Michalek
JE, et al. Elevated cerebrospinal fluid levels of substance P in
patients with the fibromyalgia syndrome. Arthritis Rheum
1994;37:1593-601.
Sackett DL. Rules of evidence and clinical recommendations on the
use of antithrombotic agents. Chest 1989;95:2S-4S.
Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW,
David A, et al. A report. Chronic fatigue syndrome: guidelines for
research. J R Soc Med 1991;84:118-21.
Sorensen J, Graven-Nielsen T, Henriksson KG, Bengtsson M, Arendt-
Nielsen L. Hyperexcitability in fibromyalgia. J Rheumatol
1998;25:152-5.
Staud R, Vierck CJ, Cannon RL, Mauderli AP, Price DD. Abnormal
sensitization and temporal summation of second pain (wind-up) in
patients with fibromyalgia syndrome. Pain 2001;91:165-75.
Suhadolnik RJ, Reichenbach NL, Hitzges P, Sobol RW, Peterson DL,
Henry B, et al. Upregulation of the 2-5A synthetase/RNase L
antiviral pathway associated with chronic fatigue syndrome. Clin
Infect Dis 1994;18:S96=S104.
Suhadolnik RJ, Peterson DL, Cheney PR, Horvath SE, Reichenbach
NL, O'Brien K, et al. Biochemical dysregulation of the 2-5A
synthetase/RNase L antiviral defense pathway in chronic fatigue
syndrome. J Chronic Fatigue Syndr 1999;5:223-42.
Tan EM, Sugura K, Gupta S. The case definition of chronic fatigue
syndrome. J Clin Immunol 2002;22:8-12.
Tirelli U, Chierichetti F, Tavio M, Simonelli C, Bianchin G, Zanco P,
et al. Brain positron emission tomography (PET) in chronic
fatigue syndrome: preliminary data. Am J Med 1998;105:54S-8S.
Van Houdenhove B. Chronic fatigue syndrome, fibromyalgia, and
complex regional pain syndrome type I. Psychsomatics 2003;44:173-4.
Vierck Jr CJ, Staud R, Price DD, Cannon RL, Mauderli AP, Martin
AD. The effect of maximal exercise on temporal summation of
second pain (windup) in patients with fibromyalgia syndrome. J
Pain 2001;2:334-44.
Vikman KS, Hill RH, Backstro¨m E, Robertson B, Kristensson K.
Interferon-gamma induces characteristics of central sensitization in
spinal dorsal horn neurons in vitro. Pain 2003;106:241-51.
Whelton CL, Salit I, Moldofsky H. Sleep Epstein-Barr virus infection,
musculoskeletal pain, and depressive symptoms in chronic fatigue
syndrome. J Rheumatol 1992;19:939-43.
Whiteside A, Hansen S, Chaudhuri A. Exercise lowers pain threshold
in chronic fatigue syndrome. Pain 2004;109:497-9.
Wilson A, Hickie I, Hadzi-Pavlovic D, Boughton C, Dwyer J,
Wakegield D. Longitudinal study of outcome of chronic fatigue
syndrome. Br Med J 1994;308:756-9.
Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C,
Goldenberg DL, et al. The American College of Rheumatology
1990 criteria for the classification of fibromyalgia. Arthritis Rheum
1990;33:160-72.
Wysenbeek AJ, Shapira Y, Leibovici L. Primary fibromyalgia and the
chronic fatigue syndrome. Rheumatol Int 1991;10:227-9.
Zachrisson O, Regland B, Jahreskog M, Jonsson M, Kron M,
Gottfries CG. Treatment with staphylococcus toxoid in fibromy-
algia/chronic fatigue syndrome a randomized controlled trial.
Eur J Pain 2002;6:455-66.
Zusman M. Forebrain-mediated sensitization of central pain path-
ways: 'non-specific' pain and a new image for MT. Man Ther
2002;7:80-8.
--------
(c) 2006 Elsevier/ScienceDirect
(c) 2006 European Federation of Chapters of the International Association
for the Study of Pain.
[
Return to top]
------------------------------
Date: Tue, 24 Oct 2006 16:32:42 +0200
From: Jan van Roijen
<j.van.roijen@CHELLO.NL>
Subject: res: Picornavirus Kills Brain Cells
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>> Help ME Circle <<<<
>>>> 24 October 2006 <<<<
Editorship :
j.van.roijen@chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
From: Vogel_frau
<vogel_frau@yahoo.com>
Polio Virus Family Causes Brain Infection,
Injuries, Memory Loss and Cognitive Impairment
New MAYO research implicating Polio's family of virus will be of
interest to Myalgic Encephalomyelitis patients and researchers:
*...We think picornavirus family members cross into the
brain and cause a variety of brain injuries...*
(see article below)
To read about the relation of Polio and ME (per Dr Bruno's work)
see The Committee for Justice and Recognition of ME
(TCJRME) link: Poliomyelitis relation to Myalgic
Encephalomyelitis
http://www.geocities.com/tcjrme/fundamentals11.html
Those interested in vaccine safety, autism, Gulf War Illnesses,
and Alzheimer's Disease may also find the MAYO findings
provocative.
Johanna
``````````````````
http://news.yahoo.com/s/nm/20061023/hl_nm/memory_dc
Virus may affect memory decades later, study finds
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Mon Oct 23, 12:09 PM ET
WASHINGTON (Reuters)
Forget where you left your glasses? Did those keys go missing
again? Now you do not have to blame your spouse -- a virus may
be to blame.
A family of viruses that cause a range of ills from the common
cold to polio may be able to infect the brain and cause steady
damage, a team at the Mayo Clinic in Minnesota reported on
Monday.
"Our study suggests that virus-induced memory loss could
accumulate over the lifetime of an individual and eventually lead
to clinical cognitive memory deficits," said Charles Howe, who
reported the findings in the journal Neurobiology of Disease.
The viruses are called picornaviruses and infect more than 1
billion people worldwide each year. They include the virus that
causes polio, as well as colds and diarrhea. People contract two
or three such infections a year on average.
"We think picornavirus family members cross into the brain and
cause a variety of brain injuries. For example, the polio virus can
cause paralysis," Howe said.
"It can injure the spinal cord and different parts of the brain
responsible for motor function. In the murine (mouse) virus we
studied, it did the same thing and also injured parts of the brain
responsible for memory."
The Mayo Clinic infected mice with a virus called Theiler's
murine encephalomyelitis virus, which is similar to human
poliovirus.
Infected mice later had difficulty learning to navigate a maze.
Some were barely affected, while others were completely unable
to manage, and when the mice were killed and their brains
examined, a correlating amount of damage was seen in the
hippocampus region, related to learning and memory.
One virus particularly likely to cause brain damage is enterovirus
71, which is common in Asia, the researchers said. It can cross
over into the brain and cause encephalitis, a brain inflammation
that can lead to coma and death.
"Our findings suggest that picornavirus infections throughout the
lifetime of an individual may chip away at the cognitive reserve,
increasing the likelihood of detectable cognitive impairment as
the individual ages," the researchers wrote in their report.
"We hypothesize that mild memory and cognitive impairments of
unknown etiology may, in fact, be due to accumulative loss of
hippocampus function caused by repeated infection with
common and widespread neurovirulent picornaviruses."
Other viruses are known to kill brain cells, including the herpes
virus and human immunodeficiency virus or HIV.
[
Return to top]
------------------------------
Date: Tue, 24 Oct 2006 20:44:58 -0400
From: "CF-Alliance
<cf_alliance@YAHOO.COM> (via Co-Cure Moderators
<co-cure-mod@listserv.nodak.edu>)"
<auntiem6@PTD.NET>
Subject: RES:Molecule Discovered To Be Key To Pain Sensitivity
Source: Massachusetts General Hospital Date: October 23, 2006
Molecule Discovered To Be Key To Pain Sensitivity
http://www.sciencedaily.com/releases/2006/10/061023092055.htm
[
Return to top]
------------------------------
Date: Tue, 24 Oct 2006 21:45:46 -0400
From: "Bernice A. Melsky"
<bernicemelsky@VERIZON.NET>
Subject: RES: Individuals' descriptions of living with fibromyalgia
Individuals' descriptions of living with fibromyalgia.
Clin Nurs Res. 2006 Nov;15(4):258-273.
Cunningham MM, Jillings C.
University of British Columbia, Vancouver, Canada.
PMID: 17056769
Fibromyalgia (FM) is a chronic pain syndrome with no known etiology, cure,
prognosis, or clear diagnostic criteria. This interpretive descriptive
study was focused on the experience of living with FM.
Using a constant comparative inductive analytic method, the researcher
collected and analyzed data from in-depth, semistructured interviews with
eight participants.
This study's findings offer insights into the experience of living with and
managing FM and identify social, policy, and health care issues that
profoundly affect those suffering from it. Participants believe that people
with FM would benefit if more health care professionals, as well as family
and friends, would validate their condition and provide them with better
support.
More research could clarify ways in which health care providers may provide
more effective interventions, appropriate care, and ongoing support for
those affected with FM.
[
Return to top]
------------------------------
Date: Wed, 25 Oct 2006 10:17:58 -0400
From: "Bernice A. Melsky"
<bernicemelsky@VERIZON.NET>
Subject: RES: Cultural adaptation and validation of the "Fibromyalgia Impact Questionnaire"--Portuguese version
[Cultural adaptation and validation of the "Fibromyalgia Impact
Questionnaire"--Portuguese version]
[Article in Portuguese]
Acta Reumatol Port. 2006 Apr-Jun;31(2):157-65.
Rosado Mda L, Pereira JP, da Fonseca JP, Branco JC.
Unidade de Fisioterapia, Centro de Medicina de Reabilitacao de Alcoitao,
Fisioterapia.
maria.rosado.4@netvisao.pt
PMID: 17058362
The aim of this study was to translate the Fibromyalgia Impact
Questionnaire (FIQ) into Portuguese (Portugal) and to evaluate its
reliability and validity by use with Portuguese--speaking patients with
Fibromyalgia. After translating the FIQ into Portuguese we administered it
to 68 patients with Fibromyalgia together with an informed consent, a
Portuguese version of the Health Assessment Questionnaire (HAQ) and a
formulary with the socio-demographic characteristics and duration of the
complaints.
The content validity was assessed with a panel of experts, with high
consensus. In the concurrent validity, we obtained significant correlations
between the FIQ first item and the HAQ [r = 0,531 (p = 0,001)]. Cronbach's
alpha was 0,814, indicating an acceptable level of internal consistency.
In conclusion, the Portuguese version of the FIQ is a reliable and valid
instrument for measuring health status and physical functioning in
Portuguese patients with Fibromyalgia. This instrument is available for use
in the clinical practice.
[
Return to top]
------------------------------
Date: Wed, 25 Oct 2006 10:24:35 -0400
From: "Bernice A. Melsky"
<bernicemelsky@VERIZON.NET>
Subject: RES: Botulinum toxin for the treatment of pain syndromes
[Botulinum toxin for the treatment of pain syndromes]
[Article in Portuguese]
Acta Reumatol Port. 2006 Jan-Mar;31(1):49-62.
Ferreira JJ, Couto M, Costa J, Coelho M, Rosa MM, Sampaio C.
Unidade Neurologica de Investigacao Clinica, Instituto de Medicina
Molecular, Lisboa.
joaquimjferreira@net.sapo.pt
PMID: 17058384
Although botulinum toxin (BoNT) is being used for therapeutic purposes for
more than 20 years, the list of potential new indications continues to
increase and includes various pain syndromes.
The pain relief experienced by patients with dystonia and spasticity from
intramuscular BoNT injections suggested that other chronic skeletal-muscles
pain conditions may also benefit. BoNT inhibits the release of
acetylcholine at the neuromuscular junction thereby reducing striatal
muscle contractions and the proposed analgesic property was initially
attributed to muscular relaxation. A specific analgesic BoNT effect is
difficult to conclude from studies where pain is conditioned by other
associated symptoms like dystonia, muscle contraction or spasticity.
One alternative is to critically appraise clinical trials where BoNT was
studied as the active intervention and pain evaluated as an outcome. From
this analysis there is convincing evidence for the effectiveness of BoNT in
the treatment of pain associated with cervical dystonia. For all other pain
syndromes there have been relatively few, small sized, placebo-controlled
studies (myofascial pain syndrome, chronic neck and low back pain,
piriformis syndrome and fibromyalgia) and the results of these studies have
been contradictory or non conclusive.
To establish the analgesic properties of BoNT there is a need for
appropriately designed, exploratory randomized controlled studies in well
accepted human models of nociceptive or neuropathic pain. This does not
exclude the subsequent need to conduct pragmatic trials to evaluate the
effectiveness of BoNT in conditions where the improvement of pain or any
associated clinical sign or symptom may be of clinical relevance.
[
Return to top]
------------------------------
Date: Wed, 25 Oct 2006 12:04:42 -0700
From: "Jacqui Footman.....................via Co-Cure moderators"
<cocuremoderator@QWEST.NET>
Subject: ACT, MED: NHS specialist CFS/ME services (UK)
This may be reposted, but only in its entirety, so that specific comments are
not taken out of context.
Over the past few months a number of postings have appeared on Co-Cure
criticising the UK's NHS new specialist CFS/ME services and suggesting that
their funding should be withdrawn, saying that the money could be better spent
on biomedical research into ME. For reference, examples of such include
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0609d&L=co-cure&T=0&P=63
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0608c&L=co-cure&T=0&P=2537
Some of these postings have included derogatory, defaming statements about
Devon's ME Support groups. We therefore write now on behalf of one of Devon's
three ME support groups, South Molton ME Support Group, email contact with
which can be made via
jacquiftmn@ukonline.co.uk .
Our purpose is to provide Co-Cure readers with some factual information about
what is happening in one of these new services. It may be generalisable to
other local services; we don't know - we have heard mixed reports and
anecdotes. Our purpose is to present things we are quite sure about only.
We list here FACTS, where we are aware about what is happening specifically
within our local area (North, East & Mid Devon & Exeter) as a direct result of
our local multidisciplinary team CFS/ME service.
1. General background. Our local service has now been seeing patients for one
year, having been established as part of the second wave of government
funding - for 2005/6. It is led by a consultant liaison psychiatrist and
comprises 3 part-time occupational therapists, a secretary, and is supported
by a Service Development Manager from the local PCT. There has also been
input and some clinics from a consultant endocrinologist and from a
psychologist who is also involved with the South and West Devon team. Our
team is currently looking to recruit further medical input, probably from a
consultant neurologist. The paediatric part of the service is just about to
start seeing patients. Things have been quite slow to get going. Resourcing
is minimal and does not reflect what the team thought was necessary when they
first submitted their bid. Referrals are made by GPs. There is currently a
waiting list of 9-12 months.
2. The service works closely with the 3 patient reps. We have been listened
to, we have been thanked for our input and made to feel valued, we have been
asked to contribute beyond just attending steering group meetings, by acting
as speakers at launch events or training events for other health
professionals. Where our service has offered or been asked for input to
training events, we provide the patient perspective part of the event and
again are publicly acknowledged and valued. Patient reps are also asked to
participate in procedures for the appointment of staff to the service.
3. The service has appointed a part-time secretary who is also a carer
because (apart of course from her secretarial skills) of the understanding of
ME she can bring to her contact with patients, not to mention the general
input to the service.
4. The service linked with us on an ME Awareness Week project to send a
jointly headed letter to every GP practice in our area together with a copy of
the MERGE DVD on research and of the Canadian guidelines short version. The
letter was also signed jointly on behalf of the support groups and on behalf
of the service/PCT by the doctor who chairs of the PCT's professional
executive committee - a senior signatory within the PCT was chosen
deliberately so that the materials would be seen as important by recipients.
5. Our service offers domiciliary visits from both the consultant and the
Occupational Therapists and apportions time and resources such that about 25%
goes to this part of the service, which provides what it can for the severely
affected. The team are looking into local inpatient provision such as would
be appropriate for the severely affected when needed for emergencies or
respite care.
6. They are raising the profile of ME/CFS within the wider health community
and involving many other health professionals and social services. Members of
our group have reported having more helpful encounters with other services as
a result of this.
7. A member of our group who for a number of years had suffered stresses and
problems with benefits (DLA and IB) found this was instantly resolved with a
letter from the consultant once she had been referred to the service and seen
him. (Aside - as support group officers we are still frustrated having to
help people with benefits and adaptations/equipment issues etc because they
are still on the waiting list - we are frustrated knowing that were these
people able to access the local CFS/ME service more quickly they would not be
having such problems)
8. A member of our group reports getting very sympathetic and useful help on
an insurance issue from the consultant.
9. The service has a policy of copying all letters/reports about patients to
patients.
10. If patients have any problem getting a referral from their GP, they can
self refer by contacting the service, who then write to the GP, asking the GP
to confirm the referral. We had one instance where even this didn't work, but
it was quickly resolved with a phone call complaining to the practice manager
following up on the letter from the service.
11. Some patients report an improved relationship with their GP following
formal (ie consultant-level) diagnosis from the service, others have reported
comments from the GP such as the GP being impressed with the number and depth
of blood tests that are requested before the referral can go through, etc and
how carefully other conditions and chronic fatigue that is not CFS are
excluded.
12. The service runs a CBT-based group intervention for mild-moderately
affected covering topics such as graded activity/activity management, keeping
positive, relaxation techniques. These group programmes have been well
received as far as I have heard and have provided opportunities for patients
to create their own friendship/support networks within the group, some of
which persists after the end of the programme. There is emphasis on a branch
of CBT known as 'mindfulness' (for example info on this approach see
http://www.bangor.ac.uk/mindfulness/).
13. Referral to group or individual CBT/GA programmes is not automatic -
patients are individually assessed; if it is clear they are already managing
the illness as effectively as they can they are told that the treatment
offered by the service would not be suitable for them and referred back to GP.
This might seem disappointing or negative, but it is an acknowledgement that
the programmes are not thought to be curative and can only achieve so much -
as much as some patients achieve alone or with social support or support from
self-help material, counsellors or complementary therapists. These new
services do not profess to cure pwme, but to provide helpful management
strategies and practical support. Our service falls administratively within
the physical disabilities and long-term conditions section of our Primary Care
Trust (PCT).
14. All patients with ME/CFS who are referred have the experience of their
illness being validated since this is a proper NHS specialist service. They
also get a compassionate listening ear, signposting and useful practical
advice. What is particularly important about this is that it provides better
access to benefits and disability services, and also official 'permission' to
take it easy for those very many who are clinging onto the cliff-face by their
fingertips, trying to do as much as they can to keep going, but well above a
suitable baseline. The guilt is taken out of not-doing things, they get help
to find a more sensible baseline and get the opportunity to feel ok about
taking time for themselves. Where necessary people are signposted to
help/equipment/benefits they need eg from social services.
We probably could go on with this list, but we hope this is enough for you to
see how valuable this CFS/ME service is to the people with ME/CFS (Canadian
diagnosis) in our area. Things may never be perfect, but people are working
hard together to do the best they can to help relieve the suffering of others;
we want and need it and we take exception to others who presume to write or
speak to MPs and government meetings on our behalf, generalising about all the
new CFS/ME services and hence including ours, suggesting that we don't need it
and funding should be withdrawn. We can't speak for others outside our area
but we have a fairly good idea that patients in South and West Devon and
Cornwall derive help and benefit from their local teams too. We have heard
anecdotally of problems with the services in one or two other areas, but
equally we have heard anecdotally of services going well and trialling
innovative approaches including offering complementary therapies such as
acupuncture and homeopathy. A whole range of health disciplines have become
involved with the new CFS/ME services. Two of the 13 national clinical
champions have endorsed the Canadian Clinical Guidelines; indeed we feel it is
likely that this helped our service decide to send copies out to help inform
local GPs.
Regarding CBT in our new service, there are insufficient resources to provide
every pwme with programmes of CBT, but principals of CBT underpin group
programmes, which are otherwise run on eclectic and practical principles in
response to the situation of the individual participants. This use of CBT and
approach used by our, and I presume most other, new services is comparable to
the 'SHS' or Self Help Strategies recommended in the shorter version of the
Canadian Clinical guidelines. There is no suggestion whatsoever in our
service of CBT being used to treat misguided illness beliefs etc. It is used
to help people adjust and cope and is not seen as curative. Such use is also
described by the draft NICE guidelines (see page 202/3 of the long version -
pdf downloadable at
http://www.nice.org.uk/page.aspx?o=368958).
We request that anyone considering writing to their MP to request the
withdrawal of the new services, or registering their support of organisations
such as RiME (who will use the comments of people who have written to them or
use the numbers of people registering their support of them in their campaign
against the new services) first consider the benefits described above that are
available through the new services, and consider which doors have been opened
to pwme.
Those campaigning for biomedical research have our fullest support, but NOT if
biomedical research has to be at the expense of these new services that are
providing so much practical help to pwme. We need the help and support NOW -
a cure could be years down the line of further painstaking research. And we
need the biomedical researchers AS WELL - more of them, and better funded.
Specialist services ARE needed by pwme. They must be allowed to develop and
health professionals be allowed to learn (sadly, learning can sometimes also
involve making mistakes). The services can't instantly be as we want them
overnight. We need to trust in people's (health professionals') capacity to
listen to other people (patients), hear what they are saying and respond. The
services provide a conduit for this listening to take place. The rest is a
leap of faith. Without faith we are so much the poorer.
Ann Dixon, Chair of South Molton ME Support Group, North Devon (founded 1992)
and carer of daughter with ME for 17 years, 8 of which severe
Jacqui Footman, Publicity and Information Officer for South Molton ME Support
Group and person with ME (diagnosed 3 years)
[
Return to top]
------------------------------
Date: Thu, 26 Oct 2006 19:30:12 +0200
From: Jan van Roijen
<j.van.roijen@CHELLO.NL>
Subject: res: Journal of CFS -Volume 13
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>> Help ME Circle <<<<
>>>> 26 October 2006 <<<<
Editorship :
j.van.roijen@chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
The Haworth Press Inc.
Journal of Chronic Fatgigue Syndrome
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Volume 13, Number 4, 2006
Conservation of Resources and Quality of Life in
Individuals with Chronic Fatigue Syndrome
Renée R. Taylor, Supriya Kulkarni, Yukiko Shiraishi.
Objective:
To examine the relationship between resources and quality of
life in individuals with chronic fatigue syndrome (CFS).
Participants and Study Design:
A cross-sectional design was used to describe associations
between resource loss and gain and quality of life for 47
individuals diagnosed with CFS.
Main Outcome Measures:
The Conservation of Resources Evaluation was used to
measure resources in terms of perceived loss and gain.
Health-related quality of life was assessed with the Quality of
Life Index.
Results:
Total resource loss and total resource gain were significant
correlates of overall quality of life. Gains in self-esteem, energy,
and work resources were associated with higher-perceived
quality of life. Material loss and energy loss were associated
with lower-perceived quality of life.
Conclusions:
Findings for the relationships between perceived resources of
self-esteem, work, material items, and energy and perceived
quality of life can be used inform future rehabilitation efforts.
These relationships appear to occur independently of illness
severity among individuals CFS.
KEYWORDS.
Conservation of resources theory, quality of life, chronic fatigue
syndrome.
````````````
Antiviral Pathway Deregulation of Chronic Fatigue
Syndrome Induces Nitric Oxide Production in Immune
Cells that Precludes a Resolution of the Inflammatory
Response
Marc Frémont, Freya Vaeyens, C. Vincent Herst, Kenny De
Meirleir, Patrick Englebienne.
Chronic fatigue syndrome (CFS) is a poorly defined medical
condition diagnosed by exclusion, which, besides severe
chronic fatigue as the hallmark symptom, involves inflammatory
and immune activation stigma. Although viral infections are not
systematically found in CFS patients, the type I interferon
antiviral pathway has been repeatedly shown to be activated in
peripheral blood mononuclear cells (PBMC) of the most afflicted
patients. An abnormal truncated form of ribonuclease L (37-kDa
RNase L) is also found in the PBMC of CFS patients and this
protein has been proposed as a biological marker for CFS.
Recently, the levels of this abnormal protein have been
significantly correlated to the extent of inflammatory symptoms
displayed by CFS patients. We report here that active
double-stranded RNA-dependent kinase (PKR) is expressed
and activated in parallel to the presence of the 37-kDa RNase L
and to an increase in nitric oxide production by immune cells.
However, PKR upregulation results also in a significant increase
followed by a decrease in caspase 3 activity for the samples
containing the highest levels of 37-kDa RNase L. This caspase
3 downregulation does not result from increased expression of
the anti-apoptotic proteins Bcl-2 and Bcl-XL.
These results therefore suggest that chronic inflammation due to
excess nitric oxide production plays a role in CFS and that the
normal resolution of the inflammatory process by NF-KB
activation and apoptotic induction is impaired.
These observations draw new directions for the therapeutic
approach of CFS.
KEYWORDS.
RNase L pathway, nitric oxide, PKR, chronic inflammation.
``````````````
Long-Term Treatment with a Staphylococcus Toxoid
Vaccine in Patients with Fibromyalgia and Chronic Fatigue
Syndrome
Carl-Gerhard Gottfries, Ove Häger, Björn Regland, Olof
Zachrisson.
One hundred and sixty patients with fibromyalgia and chronic
fatigue syndrome, who were on a continuous treatment with a
Staphylococcus vaccine, were followed during one year with
repeated consultation visits. The patients had participated in
controlled studies and been on continuous treatment with the
vaccine for 22_10 months before inclusion into this follow-up
study. They were treated with 1 mL of the vaccine
subcutaneously every third to fourth week. Adverse events were
few. The adherence to the treatment was very good. Over a
period of one year, 8% withdrew, and in only 5%, the withdrawal
was due to insufficient clinical effect. Only in two cases where
the patients were allergic to the preservative of the vaccine, the
side effects caused the withdrawal of the treatment. Ratings with
scales (CPRS-15 and FibroFatigue) showed improvement from
start of treatment and also further improvement during the
follow-up year. In view of the natural history for these disorders
the result is of interest.
KEYWORDS.
Fibromyalgia, chronic fatigue syndrome, Staphylococcus
vaccine, long-term treatment
````````````
Reliability of a Chronic Fatigue Syndrome Questionnaire
Caroline Hawk, Leonard A. Jason, Susan Torres-Harding.
Background:
A diagnostic instrument, the CFS Questionnaire, was developed
for clinicians and researchers to administer to their patients as a
screening instrument for CFS. The CFS Questionnaire is
comprehensive, covering the inclusionary and exclusionary
self-report criteria of the current U.S. case definition (Fukuda et
al. 1994). The instrument also assesses past and current activity
levels, and symptoms of post-exertional malaise to ensure these
items are adequately assessed.
Objectives:
The goal of the present study was to evaluate the diagnostic
reliability of an experimental measure for assessing chronic
fatigue syndrome (CFS).
Methods:
This instrument was administered to 15 persons with CFS, 15
persons with major depressive disorder (MDD), and 15 controls.
Using the Fukuda et al. (1994) diagnostic criteria, raters
independently reviewed participants' CFS Questionnaire
responses and rated whether each study participant met criteria
for chronic fatigue syndrome.
Results:
This instrument demonstrated good inter-rater reliability. Further,
this instrument demonstrated adequate classification accuracy,
with a 9.3 positive likelihood ratio and a .08 negative likelihood
ratio. Overall, the CFS Questionnaire demonstrated good
test-retest reliability, with intra-class correlation coefficients
and kappa coefficients at .70 or higher for most items. Lower
test-retest reliability coefficients were found for some items
assessing temporal symptoms or items requiring an estimate of
time.
Conclusion:
The present study suggests that the CFS Questionnaire is a
reliable diagnostic tool. Use of the CFS Questionnaire should
promote higher levels of diagnostic reliability because it allows
for accurate classification of individuals with CFS.
KEYWORDS.
Chronic fatigue syndrome, depression, symptomatology,
diagnostic criteria.
``````````
Lyme Disease Presenting as Chronic Fatigue Syndrome
Samuel Shor.
Objective:
Chronic Fatigue Syndrome (CFS) by definition represents a
diagnosis of exclusion. Late stage or "Chronic Lyme" infection
with or without "co-infections" is a difficult diagnosis to establish.
The symptom complex of both conditions can be very similar.
This case study represents an attempt to support serious
consideration for a subpopulation of patients otherwise
diagnosed with "CFS," as actually representing chronic Lyme
disease.
Method:
A case study is presented of a 33-year-old man, who for two
years, was being managed as having CFS. However, after ~2
years of utilizing multiple modalities of management with limited
success, the diagnosis of Lyme was reconsidered. Historical
exposure risks to Lyme in this individual were high. He had
prolonged exposure in the highly tick-infested mountains of North
Carolina for 18 months, several years prior to becoming ill. More
aggressive investigation confirmed the diagnosis of Lyme.
Appropriate changes in management were associated with an
improved level of functioning that was far in excess of what
maximal management of CFS was able to achieve. The features
of CFS and chronic Lyme can be very similar and include the
following: Profound fatigue often associated with cognitive
impairment. Other common symptoms related to both of these
conditions include sleep disturbances, fibromyalgia, and
dysautonomias. In pursuing clarification of this diagnosis, the
author was exposed to a contrast in medical opinion regarding
diagnostic tools and criteria that were perceived as creating
potential barriers to the management of patients presenting with
these symptoms.
Conclusion:
Acceptance and awareness of the possibility that Lyme disease
can present as CFS has important therapeutic and prognostic
implications.
KEYWORDS.
Lyme disease, chronic Lyme, chronic fatigue syndrome, CFS,
fatigue.
````````````
Depression, Chronic Fatigue Syndrome, and
Fibromyalgia: An Update
Kenneth R. Kaufman, Paul J. Goodnick.
Centers for Disease Control criteria for chronic fatigue
syndrome (CFS) specifically recognize that patients can have
both CFS and depression. The clinician's challenge is to judge
for each individual patient whether the complaint of fatigue is
primarily depression, physical illness, s
![[Co-Cure ME/CFS & Fibromyalgia Information Exchange Forum Logo]](cc2b5.gif)