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Co-Cure Weekly Digest of research and medical posts only - 21 May 2007 to 28 May 2007

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                       This is a special digest of
                  Co-Cure Research & Medical posts only
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Date:    Tue, 22 May 2007 18:41:43 -0400
From:    Fred Springfield <fredspringfield VERIZON.NET>
Subject: RES: Personality Profile of Patients with Chronic Fatigue Syndrome

Personality Profile of Patients with Chronic Fatigue Syndrome

Journal: J of Chronic Fatigue Syndrome, Vol. 14(1) (2007), pp. 55-68

Authors: Olivier Le Bon MD, PhD [1, *], Bernard Cappeliez MD [1], Daniel
Neu MD[1], Luc Stulens MSN [1], Guy Hoffmann PhD [1], Michel Hansenne PhD
[2], Luc Lambrecht MD, PhD [3], Marc Ansseau MD, PhD [2], Paul Linkowski
MD, PhD [1]

Affiliations:
[1] Brugmann University Hospital, Department of Psychiatry, Université
Libre de Bruxelles, Belgium
[2] University Hospital Liége, Department of Psychiatry, Université de
Liége, Belgium
[3] University Hospital Gent, Department of Internal Medicine, Gent, Belgium
[*] Corresponding Author: Olivier Le Bon, CHU Brugmann Service de
Psychiatrie, Plaza A. Van Gehuchten, 1020 Brussels, Belgium
E-Mail: <oliver.lebon chu-brugmann.be>

Personality may play a role in the predisposition, the precipitation and/or
the maintenance of the CFS.

Thirty-six consecutively examined female patients hospitalised for a sleep
workup, filled out a Temperament and Character Inventory (TCI)
questionnaire. A MANOVA compared the patients with a control group of
females matched for age.

Significant scores were obtained for dimensions such as Harm Avoidance,
Reward Dependence, and Self-Directedness. However, the only subdimension of
Harm Avoidance that proved significantly higher in CFS than in controls was
"Fatigability," which is likely to overlap with the core CFS symptom.

All in all, the personality structure does not appear to play a major role
in the CFS.


Keywords: Personality, chronic fatigue syndrome, TCI

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Date:    Wed, 23 May 2007 11:01:56 -0400
From:    Fred Springfield <fredspringfield VERIZON.NET>
Subject: RES: Treatment of chronic fatigue and orthostatic intolerance with propranolol

Treatment of chronic fatigue and orthostatic intolerance with propranolol.

Journal: J Pediatr. 2007 Jun;150(6):654-5.

Authors: Wyller VB [1, 2], Thaulow E [1], Amlie JP [3].

Affiliation:
[1] Department of Pediatrics, Rikshospitalet-Radiumhospitalet Medical
Centre, Oslo, Norway
[2] Department of Physiology, University of Oslo, Oslo, Norway
[3] Medical Outpatient Clinic, Rikshospitalet-Radiumhospitalet Medical
Centre, Oslo, Norway.
Reprint requests: Vegard Bruun Wyller, Dept of Paediatrics,
Rikshospitalet-Radiumhospitalet Medical Centre, N-0027 Oslo, Norway.

NLM Citation: PMID: 17517256


We describe the effect of propranolol [U.S. brand name: Inderal] in an
adolescent with chronic fatigue syndrome and orthostatic intolerance. Our
observations suggest that the head-up tilt-test and beta-blocker treatment
might be considered in patients with chronic fatigue syndrome and that
enhanced sympathetic nervous activity might be part of the underlying
pathophysiology.

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Date:    Wed, 23 May 2007 11:07:29 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Reduction of fibromyalgia symptoms through intravenous  nutrient therapy: results of a pilot clinical trial

Reduction of fibromyalgia symptoms through intravenous nutrient therapy:
results of a pilot clinical trial.

Altern Ther Health Med. 2007 May-Jun;13(3):32-4.

Massey PB.

Complementary and Alternative Medicine at Alexian Brothers Hospital
Network, Elk Grove Village, Ill, USA.

PMID: 17515022


OBJECTIVE: To evaluate the effectiveness of a modified Myers' formula of
intravenous nutrient therapy (IVNT) on the symptoms of fibromyalgia (FM) in
therapy-resistant FM patients.

Methods: In this pilot clinical trial, 7 participants with therapy
resistant FM were given IVNT once per week for 8 weeks. Patient's pain
levels, fatigue, and activities of daily living were evaluated weekly.

RESULTS: All participants reported decreased pain levels, decreased
fatigue, and increased activities of daily living. Participants noted
increased energy levels within 24-48 hours of the initial infusion. At the
end of the study, all participants reported increased energy and activities
of daily living as well as a 60% reduction in pain (P=.005) and an 80%
decrease in fatigue (P=-.005). No participants, however, reported complete
or lasting resolution of pain or fatigue. No side effects were reported.

DISCUSSION: Anecdotal reports have indicated benefit for IVNT for patients
with chronic pain, including FM. However, except for 2 reports, the medical
literature is devoid of any studies of IVNT for the treatment of FM. In
this pilot study, 7 participants received IVNT once a week for 8 weeks. All
participants had long-standing FM (at least 8 years) and had tried
conventional therapies, such as antidepressants, nonsteroidal
anti-inflammatory drugs, and exercise, without significant or lasting
relief. All had improvement in symptoms and increases in their activities
of daily living, although no participant reported complete resolution of
symptoms. IVNT appears to be safe to reduce FM symptoms.

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Date:    Wed, 23 May 2007 21:46:10 +0200
From:    Jan van Roijen <j.van.roijen CHELLO.NL>
Subject: res: fish-oil supplementation & myocardial fatty acids

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
       >>>> Help ME Circle  <<<<
 >>>>       23 May 2007       <<<<
Editorship : j.van.roijen chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

Martin Lerner, Arnold Peckerman, Paul Cheney, Benjamin
Natelson and others published their research, finding that most
ME/CFS patients suffer from cardiac abnormalities.

Therefore this study may be of interest for these patients.

~jvr


``````````

http://www.immunesupport.com/library/showarticle.cfm?id=8003&T=CFIDS_FM&B1=EM052307C



Effects of fish-oil supplementation
on myocardial fatty acids in humans
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

by RG Metcalf, et al.

ImmuneSupport.com

05-14-2007


Journal: American Journal of Clinical Nutrition, 2007
May;85(5);1222-8


Authors and affiliation: Metcalf RG, James MJ, Gibson RA,
Edwards JR, Stubberfield J, Stuklis R, Roberts-Thomson K,
Young GD, Cleland LG. Rheumatology Unit and the School of
Medicine, University of Adelaide, Adelaide, Australia.


PMID: 17490956

Background: Increased fish or fish-oil consumption is
associated with reduced risk of cardiac mortality,
especially sudden death. This benefit putatively arises
from the incorporation of the long-chain n-3 [omega-3]
fatty acids eicosapentaenoic acid (EPA) and
docosahexaenoic acid (DHA) into cardiomyocyte
phospholipids [fatty acids found in the heart muscle
cells].


Objective:

The study examined the kinetics of incorporation of n-3 fatty
acids into human myocardial membrane phospholipids during
supplementation with fish oil and alpha-linolenic acid-rich
flaxseed oil.


[Note: Omega-3 and omega-6 fatty acids are both essential to
cellular function and must be obtained through the diet. Omega-3
EPA and DHA is found most commonly in fish and fish oil.
Omega-3 ALA is found in vegetable oils such as olive and flax
seed oil. Omega-6 (arachidonic acid) is synthesized from the
linoleic acid in animal foods such as meat, eggs, dairy.

Researchers believe the optimum balance of omega-3 to
omega-6 essential fatty acids in the cells is one-to-one, whereas
in most developed countries the scale is tipped significantly
toward omega-6 – a diet-based situation they believe may
promote chronic inflammation and a number of physical
disorders.]


Design:

Patients with low self-reported fish intake (<1 fish meal/wk and
no oil supplements) accepted for elective cardiac surgery
involving cardiopulmonary bypass were randomly allocated to 1
of 6 groups:

*  No supplement;
*  Fish oil (6 g EPA+DHA/day) for either 7, 14, or 21 days
     before surgery;
*  Flaxseed oil
*  Or olive oil (both 10 mL/d for 21 days before surgery).


Right atrial appendage tissue removed during surgery and blood
collected at enrollment and before surgery were analyzed for
phospholipid fatty acids.


Results:

Surgery rescheduling resulted in a range of treatment times
from 7 to 118 days.


*  In the fish-oil-treated subjects, accumulation of EPA and DHA
    in the right atrium was curvilinear with time and reached a
    maximum at approximately 30 days of treatment and
    displaced mainly arachidonic acid [omega-6];
*  Flaxseed oil supplementation yielded a small increase in
    atrial EPA but not DHA;
*  Whereas olive oil did not significantly change atrial n-3 fatty
    acids.


Conclusion:

The results of the present study show that dietary n-3 fatty acids
are rapidly incorporated into human myocardial phospholipids at
the expense of arachidonic acid during high-dose fish-oil
supplementation.

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Date:    Wed, 23 May 2007 17:02:46 -0700
From:    Steven Du Pre <isaiah40 SONIC.NET>
Subject: NOT, MED, ACT: CDC's Big Tent "Fatiguing illnesses"

Hello,
    Dr. Reeves in his empirical definition (2005) is proposing that
if you are fatigued and disabled to
some extent and have a certain symptom profile and don't have any
other diseases, then by definition you have CFS.
    Dr. Jason, however, pointed out that several of the Reeves
questionnaires
in the SF-36 and MFI concentrate solely on emotional or mental aspects
of fatigue and disability. Two SF-36 questionnaires focus on emotional
problems and mental health and one MFI questionnaire focuses on
reduced motivation. This suggests that under the new CDC criteria fatigued
people with emotional problems but not necessarily with the physical
components of CFS could meet the criteria for CFS and participate in
CFS studies.
    The 1994 CDC revised case definition, broadened
what could be researched under the name of "Chronic Fatigue Syndrome"
by calling for an "integrated approach to the evaluation,
classification, and study of persons with CFS and other fatiguing
 illnesses."
Then, throughout the text of the case definition, they seek to lay a
framework and some justification to get these "fatiguing illnesses"
into the CFS research funding structure.
    This shaky foundation, as Craig Maupin has pointed out,
http://www.cfidsreport.com/Articles/Case%20Definition/Case%20Definition%203.htm
has led to deemphasizing the Activity/exertion response in M. E./CFS,
in which the hallmark type of fatigue experienced is very distinct.
First, it is closely related to exertion response. People with M. E./CFS
typically have an exacerbation of symptoms 24-72 hours after exertion.
M. E./CFS sufferers typically describe paying a price for the activities
they
wish to participate in. Unlike the typical fatigue experienced by healthy
people, sleep or rest cannot alleviate it. Those with M. E./CFS also
describe
this fatigue as flu-like. This very distinct type of fatigue is the most
telling symptom of M. E./CFS, and it is testable with the
"Bicycle Ergometry Test with Gas Analysis" showing almost immediate movement
to anaerobic threshold in M. E./CFS patients in contrast to normal controls.
      In contrast, according to the 1994 CDC CFS case definition, a
diagnosis of CFS can be made in patients without this hallmark
symptom should a researcher choose to do so. Researchers may
simply choose from a set of symptoms which fits their whims and interests.

    Also, nailing down the diagnosis of CFS becomes a long,
frustrating process for both patient and physician, internists said.
There is no diagnostic test or laboratory marker for CFS, so
physicians must rule out other potential causes, like thyroid or
neurological disorders, before they confirm the diagnosis. Since
the main symptoms of CFS-fatigue, pain, headaches-are common
to many other illnesses, the exclusion process means repeat visits,
a lot of lab work, and a lot of time.

    As Craig points out, the authors of the 1994 Fukuda criteria
go on to encourage physicians and researchers to integrate into
CFS research samples "Any condition defined primarily by symptoms
that cannot be confirmed by diagnostic laboratory tests, including
fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic
or nonmelancholic depression, neurasthenia, and multiple chemical
sensitivity disorder."
    Thus, the authors were crafting was a recipe for confusion and
conflicting results.
    Of course, the distinct neurological disease, Myalgic Encephalomyelitis
with clear criteria and some distinct testing parameters has been buried
even though the history is clear since the 1934 Los Angeles epidemic
and the cover-up was thoroughly investigated and reported by Hillary
Johnson in the newly updated book, Osler's Web: Inside the Labyrinth
of the Chronic Fatigue Syndrome Epidemic (Paperback - June 8, 2006).

    Meanwhile in the rest of the world where Myalgic Encephalomyelitis
has not been removed from the view of the general public &
from medical professionals,
 Myalgic Encephalomyelitis  is NOT a "subgroup" or "subset" of Fatiguing
Illnesses/CFS.
Instead, ME is an autonomous, infectious neurological entity ICD-10 G93.3

Steven Du Pre
Poetry website: http://www.angelfire.com/poetry/soareagle/index.html
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org

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Date:    Thu, 24 May 2007 16:51:43 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Effects of mud-bath treatment on fibromyalgia patients: a randomized clinical trial

Effects of mud-bath treatment on fibromyalgia patients: a randomized
clinical trial.

Rheumatol Int. 2007 May 23; [Epub ahead of print]

Fioravanti A, Perpignano G, Tirri G, Cardinale G, Gianniti C, Lanza CE, Loi
A, Tirri E, Sfriso P, Cozzi F.

Rheumatology Unit, Department of Clinical Medicine and Immunogical
Sciences, University of Siena, Siena, Italy.

PMID: 17520260


The efficacy of balneotherapy in fibromyalgia syndrome (FS) has been well
demonstrated, while controlled studies using mud packs are lacking.

We performed a randomized clinical trial to evaluate the effects and the
tolerability of mud-bath treatment in FS patients, who are poor responders
to pharmacological therapy.

Eighty patients with primary FS, according to ACR criteria, were randomly
allocated to two groups: 40 were submitted to a cycle of 12 mud packs and
thermal baths, and 40 were considered as controls. At baseline, after
thermal treatment and after 16 weeks, patients were evaluated by FIQ,
tender points count, VAS for "minor" symptoms, AIMS1 and HAQ. Control
patients were assessed at the same time periods.

A significant improvement of all evaluation parameters after mud-bath
therapy and after 16 weeks was observed. Mud packs were well tolerated and
no drop-outs were recorded.

Our results suggest the efficacy and the tolerability of mud-bath treatment
in primary FS.

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Date:    Fri, 25 May 2007 14:08:29 -0400
From:    Fred Springfield <fredspringfield VERIZON.NET>
Subject: RES: Body Mass Index and Fatigue Severity in Chronic Fatigue Syndrome

Body Mass Index and Fatigue Severity in Chronic Fatigue Syndrome

Journal: J of Chronic Fatigue Syndrome, Vol. 14(1) (2007) pp: 69-77

Authors and affiliations:
Ellen A. Schur MD, Department of Medicine, University of Washington,
Seattle, WA
Carolyn Noonan MS, Department of Medicine, University of Washington,
Seattle, WA
Wayne R. Smith PhD, Department of Psychiatry and Behavioral Science,
University of Washington, Seattle, WA
Jack Goldberg PhD, Department of Epidemiology, University of Washington,
Seattle, WA
Dedra Buchwald MD, Department of Medicine, University of Washington,
Seattle, WA


Background: It is uncertain how much fatigue is related to weight in
patients with chronic fatigue syndrome (CFS).

Objective: To assess the association of body mass index (BMI) and fatigue
in CFS patients.

Methods: Consecutive patients seen in a referral-based specialty clinic
were eligible if they met CFS criteria and had completed required measures.
Fatigue measures were the vitality subscale of the Medical Outcomes
Short-Form 36 and the global fatigue index from the Multidimensional
Assessment of Fatigue.

Results: In women, there was no relationship between BMI and vitality
subscale or global fatigue index scores (P = 0.99 and P = 0.44). For men,
vitality subscale scores significantly decreased as BMI increased (P = 0.02).

Conclusions: In CFS patients, the prevalence of obesity was low despite
risk factors for weight gain. Fatigue severity and BMI were unrelated in
women with CFS, but this relationship may differ for men.
doi:10.1300/J092v14n01_07


Keywords: Chronic fatigue syndrome, fibromyalgia, fatigue, weight

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Date:    Fri, 25 May 2007 14:39:30 -0400
From:    Fred Springfield <fredspringfield VERIZON.NET>
Subject: RES: The impact of informational interventions about cognitive behavioral therapy for chronic fatigue syndrome on GPs referral behavior

The impact of informational interventions about cognitive behavioral
therapy for chronic fatigue syndrome on GPs referral behavior.

Journal: Patient Educ Couns. 2007 May 21; [Epub ahead of print]

Authors: Scheeres K, Wensing M, Mes C, Bleijenberg G.

Expert Centre Chronic Fatigue, Radboud University Nijmegen Medical Centre,
The Netherlands.

NLM Citation: PMID: 17521842


OBJECTIVE: This study investigated the impact of an informational
intervention among general practitioners (GPs) about a new treatment with
cognitive behavioral therapy (CBT) for chronic fatigue syndrome (CFS) in a
mental health center (MHC). The outcome measures concerned GPs knowledge
and attitudes towards CFS and their actual referrals of CFS patients to
this new treatment setting.

METHODS: Three hundred and one GPs, who all had received written
information about CFS four times, and who partly had also visited an
informational group session, completed a short questionnaire survey on CFS
knowledge and attitudes. Referral data were obtained from the mental health
center.

RESULTS: During 16 months 22% of all GPs in the concerning region had
referred at least one CFS patient. Concerning knowledge and attitude, the
survey results showed that 70% of the GPs had remembered the intervention's
main message, namely the new treatment possibility. These informed GPs
reported better knowledge and more positive attitudes towards CFS than the
non-informed GPs, who had not seen and read the intervention's information.

CONCLUSION: This study showed that disseminating written materials can be a
useful method for stimulating GPs to refer CFS patients for CBT.

PRACTICE IMPLICATIONS: In future implementation projects concerning CBT for
CFS (or other 'new' treatments for a disputed illness) in a MHC or other
institution, the informational intervention evaluated here can be a
suitable and efficient method to inform GPs and let them refer patients.

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Date:    Sat, 26 May 2007 11:50:05 -0700
From:    "Jacqui Footman <jacquiftmn@ukonline.co.uk> via Co-Cure Moderators"
Subject: MED, NOT:  Holistic Healthcare (UK)

Hi folks

I would like to share some information about an organisation of which I am a
member, the British Holistic Medical Association, www.bhma.org

I receive from them quarterly the excellent Journal of Holistic Healthcare, a
journal based in the School of Integrated Health, University of Westminster,
London.

Anyone sharing their values may join or become a friend of the association,
but the journal seems to be mainly written by/aimed at practising
doctors/health professionals.   The May 2007 journal's main feature article is
their campaign, "Medicine as if People Matter".  Here is a small excerpt from
the report of the focus group, under the subheading 'Putting the heart back
into healthcare':

"Some members of the group talked about GPs and nurses who have said the NHS
tick-box culture is making them lose heart.  The group agreed that the 'heart'
of NHS healthcare has been its vast reserves of individual goodwill and shared
vocational values.  Pondering on what the most essential feature of holistic
healthcare might be, the group concluded it would be 'medicine as if people
matter' and proposed that the mission of the BHMA should be to do work that
supports patients and staff whose needs are poorly met in the NHS.  In
particular the group identified:
  a.. people with long-term conditions
  b.. people with medically unexplained physical symptoms
  c.. frail elderly
  d.. staff who aspire to deliver medicine as if people matter."
I'm posting this because from this quote we can see that they are clearly
setting out to support pwme, amongst others, so I suggest that we support them
and maybe a joint project could be possible.  Please look at BHMA membership
details at
http://www.bhma.org/modules.php?op=modload&name=PagEd&file=index&topic_id=0&page_id=51
also see the left-hand menu on that page to click onto "Core Values and
Action" and "About us".

Thanks,
Jacqui (Footman)
South Molton ME Support Group, North Devon, UK.

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Date:    Sat, 26 May 2007 20:34:56 -0400
From:    Fred Springfield <fredspringfield VERIZON.NET>
Subject: RES: The effect of acclydine in chronic fatigue syndrome: a randomized controlled trial

The effect of acclydine in chronic fatigue syndrome: a randomized
controlled trial.

Journal: PLoS Clin Trials. 2007 May 18;2(5):e19.

Authors: The GK, Bleijenberg G, van der Meer JW.

Affiliation: Department of General Internal Medicine, Nijmegen Expert
Centre Chronic Fatigue, Radboud University Nijmegen Medical Centre,
Nijmegen, The Netherlands.

NLM Citation: PMID: 17525791


OBJECTIVES: It is unclear whether insulin-like growth factor (IGF) function
is involved in the pathophysiology of chronic fatigue syndrome (CFS).
Unpublished data and reports in patient organization newsletters suggest
that Acclydine, a food supplement, could be effective in the treatment of
CFS by increasing biologically active IGF1 levels. Here we aimed to measure
the IGF1 and IGF binding protein (IGFBP) 3 status of CFS patients compared
to age- and gender-matched neighborhood controls, and to assess the effect
of Acclydine on fatigue severity, functional impairment, and biologically
active IGF1 level (IGFBP3/IGF1 ratio). DESIGN: A randomized,
placebo-controlled, double-blind clinical trial.

SETTING: Radboud University Nijmegen Medical Centre, The Netherlands.

PARTICIPANTS: Fifty-seven adult patients who fulfilled the US Centers for
Disease Control and Prevention criteria for CFS. IGF status of 22 CFS
patients was compared to that of 22 healthy age- and gender-matched
neighborhood control individuals.

INTERVENTION: Acclydine or placebo for 14 wk.

OUTCOME MEASURES: Outcomes were fatigue severity (Checklist Individual
Strength, subscale fatigue severity [CIS-fatigue]), functional impairment
(Sickness Impact Profile-8 [SIP-8]), and biologically active IGF1 serum
concentrations. Analyses were on an intention-to-treat basis.

RESULTS: There was no difference in IGF status in 22 CFS patients compared
to healthy age- and gender-matched control individuals. Treatment with
Acclydine did not result in significant differences compared with the
placebo group on any of the outcome measures: CIS-fatigue +1.1 (95% CI -4.4
to +6.5, p = 0.70), SIP-8 +59.1 (95% CI -201.7 to +319.8, p = 0.65), and
IGFBP3/IGF1 ratio -0.5 (95% CI -2.8 to +1.7, p = 0.63).

CONCLUSION: We found no differences in IGF1 status in CFS patients compared
to healthy matched neighborhood controls. In addition, the results of this
clinical trial do not demonstrate any benefit of Acclydine over placebo in
the treatment of CFS.


Note: This is an Open Access article. The full text is available at
http://clinicaltrials.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pctr.0020019

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Date:    Sun, 27 May 2007 14:12:45 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Differentiation of thoracic outlet syndrome from treatment-resistant cervical brachial pain syndromes: development and utilization of a questionnaire, clinical examination and ultrasound evaluation

Differentiation of thoracic outlet syndrome from treatment-resistant
cervical brachial pain syndromes: development and utilization of a
questionnaire, clinical examination and ultrasound evaluation.

Pain Physician. 2007 May;10(3):441-52.

Jordan SE, Ahn SS, Gelabert HA.

Neurological Associates of West Los Angeles, Santa Monica, CA and UCLA
Department of Vascular Surgery, Los Angeles, CA.

PMID: 17525778


OBJECTIVE: The present study was undertaken to determine which factors
differentiate patients with a good outcome after treatment for Thoracic
Outlet Syndrome (TOS) from patients with a poor outcome.

METHODS: A total of 85 patients, who were examined during one year, had at
least 6 months of follow up after treatment for TOS with either surgery or
botulinum chemodenervation.

RESULTS: Socioeconomic factors of work disability or workers' compensation
claims did not differentiate treatment-responsive TOS from
treatment-resistant cases. There was no difference between the 2 groups
regarding the presence of anomalous anatomy detected by ultrasonography or
regarding the presence of subclavian artery flow acceleration or occlusion
detected by duplex sonography. Several factors were noted more frequently
in treatment-resistant patients: sensory complaints extending beyond lower
trunk dermatomes (42% vs. 10%), weakness extending beyond lower trunk
myotomes (19% vs. 2%), histories of previous non-TOS surgery of the neck or
upper limbs (50% vs.17%), comorbidities of fibromyalgia or complex regional
pain syndrome (81% vs. 12%), and depression (35% vs. 10%).
Treatment-resistant patients complained about more widespread functional
impairments on a validated Cervical Brachial Symptom Questionnaire (CBSQ)
than treatment-responsive patients. Resistant cases responded less often to
a scalene test block (38% vs. 100%), which is designed to simulate the
effects of targeted treatment.

CONCLUSION: In summary, compared to patients with a good outcome after
targeted treatment, patients with a poor outcome had more diffuse
complaints and responded less often to a scalene test block.

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Date:    Mon, 28 May 2007 16:45:25 +0100
From:    Ellen Goudsmit <ellengoudsmit HOTMAIL.COM>
Subject: ACT, RES: editorial policy undermines scientific process. 312.

The covert editorial policies of UK journals continue to interfere with the
scientific process, denying information to scientists about alternatives to
CBT, who are not able to study and offer potentially helpful treatment
programmes to patients.

I have written about the lack of rigorous peer review in relation to CFS
before. The situation is not getting better, possibly due to recent
appointment of CBT school supporters as editors and co-editors).

Here are a few more examples of comments, this time in response to a paper
on a treatment programme which is as effective as CBT and safer for those
with neurological and immunological abnormalities. Given the lack of
therapeutic options available to these patients, the rejection of papers on
the basis of arguments which are hard to justify and amount to nitpicking,
is a particularly serious matter. To emphasize, rejection on the basis of
sound arguments (bad design, inappropriate statistics, flawed outcome
measures etc) is fine. The paper, however, was not rejected for those
reasons.


"Why were people who did not fulfil the criteria included in the study?"
(They weren't).

"it could be argued that the person who stopped taking oral contraceptives
should have been retained for the data analysis." (No, as stopping the pill
resolved her symptoms, i.e. they were not due to CFS. The study was on CFS.)

"was the scale on which patients rated their overall impression of the
change in their health a standard scale?" (No, as described in the text, and
this is quite normal in trials of CBT. Often referred to as global measures
or assessments).

"There were too many primary outcomes." (This refers to the inclusion of
measures assessing somatic and cognitive symptoms, as well as fatigue,
emotional distress and functional impairment. If we applied this reasoning
to breast cancer, a paper might be rejected because it also looked at
secondary tumours, quality of life and survival, in addition to the effect
on the primary and side-effects).

"The intervention was not controlled in that participants appeared to
receive the intervention at slightly different time points." (Patients were
assessed at baseline (entry into study) and six months later. One group  had
treatment, the other was on the waiting list. The use of a waiting list
control is acceptable and has been used by the Nijmegen team, apparently
without problems).

"To what do authors attribute improvements in fatigue and functioning, if
the
programme was primarily aimed at helping patients to cope with and manage
their
condition?" (There wasn't an improvement in functioning had the referee read
the results. We gaver some reasons why.  Pacing is aimed at reducing fatigue
and that's why, we think, there was an improvement in fatigue. All the
information was covered in the discussion.)

"there is no evidence base for the advice about energy management." (This
comment ignores 30 odd years experience reported by doctors and patients,
surveys, the existence of four controlled trials, including 2 RCTs relating
to pacing, and a few references in the text.)

"While it is true that a proportion of patients do not get better the
treatment effects are not modest." (This comment relates to CBT/GET.
Measures of  effect size e.g. Cohen's delta, Hedges' g, indicate modest
treatment effects based on data for fatigue. Reviews have also been wary of
making grand claims. The recent reviews which supported the argument re
modest effects were listed. The referee did not support his/her argument
that CBT is a cure or has major effects for the majority. But they don't
have to support their opinions with references, data etc).

You get the picture? I submit that this editorial bias helps to perpetuate
the use of CBT in spite of growing evidence against it.

Ellen Goudsmit
Chartered Health Psychologist and Chartered Scientist.

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End of Co-Cure Weekly Digest of research and medical posts only - 21 May 2007 to 28 May 2007

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