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2007 Call for Congressional Action for Myalgic Encephalomyelitis/CFS

 
 
Co-Cure Group:

We are in need of a solid 2007 Call for Congressional Action because the railroad tracks of truth about Myalgic Encephalomyelitis/CFS have whole sections destroyed and therefore gaps in knowledge due to a flawed definition & criteria cobbled together by the CDC in the US in 1988.  Dr.  Jason's Jan.  2007 IACFS presentation showed the flaws of the past & present CDC criteria in actual research settings: Jason, L., Porter, N and N.  Najar.  "Evaluating the CDC criteria for an empirical case definition."

In addition, as we know, the disease Myalgic Encephalomyelitis with a fully established ICD code since 1969 in the neurological classification (ICD 9--323.9 ICD 10--G 93.3) has been totally undermined by a coined name that centers on one symptom, fatigue.

Finally, a whole section of truth has been ignored in regard to the history of epidemics of Myalgic Encephalomyelitis.  The disease M.  E.  has solid evidence from way back to 1934 in the Los Angeles epidemic outbreak of M.  E..

Norway has done a great job of reconstructing the tracks of truth, and the US needs to follow suit:

http://www.investinme.org/InfoCentre%20Norway-2007-001.htm
 

Now is our chance to follow in the footsteps of Norway--

(URLs for your use in helping with this 2007 Action are listed below)

Remember that a disbelieving general public and medical community experience fatigue firsthand most every day and recover from it quite nicely to go out and work the next day.  The truth about the CNS dysfunction which causes the fatigue in Myalgic Encephalomyelitis, among other symptoms, has been destroyed from the criteria, so much so that the CDC website states "there are no tests and there are no treatments." This false statement goes against the plethora of studies and experience of doctors such as Dr.  Byron Hyde that the neurological testing such as brain SPECT scans & PET scans are diagnostic and also show the development of the disease, Myalgic Encephalomyelitis.  Many other nonroutine tests give a definitive picture of the disease as demonstrated by Dr.  Malcolm Hooper in his lecture, "Engaging with Myalgic Encephalomyelitis."

Add to this numerous blood rheology abnormalities demonstrated by Dr.  Leslie Simpson as well as immunological abnormalities evidenced by such doctors as Dr.  Klimas.

 

Note: (References made in this post are included below under signature line below; a copy of the Call for Congressional Action is given below as well as URLs for the document in Microsoft Word, WordPerfect & PDF formats for you to print out and mail or FAX your senators and representative along with your short cover letter.  At the "How to use this Congressional Action" URL, I have a sample cover letter for you also that I am writing to my Representative.)

 

Myalgic Encephalomyelitis is a clear-cut, definitive diagnosis with tests that can show the effects of M.E.  such as: SPECT & PET Scans, Natural Killer Cell Function test, Rnase-L antiviral dysregulation, and Blood Flow.

What is needed is recovery of the clearly delineated Dr.  Melvin Ramsay criteria & focus which has been carried through by Dr.  Byron Hyde & augmented by the 2003 Consensus Criteria.  And also, it needs to be common knowledge that M.  E.  is a neurological disease like MS and has been classified as such in the ICD since 1969, no matter the denial in the US.

Ignoring a real disease, Myalgic Encephalomyelitis, and naming an illness after a common symptom in numerous other diseases is no longer viable or truthful.  And it cannot be papered over by any large publicity campaign nor a flawed CDC gene study which highlights "allostatic stress."

And we have this quote from a presentation at the latest Behavioral Medicine conference in which Dr.  Reeves from CDC was a presenter.  This is the perception that is being set forth in the trenches of US CFS research:

"This ecological study hypothesized that recall of fatigue in CFS will be related to (a) the variability of momentary (real-time) fatigue ratings and (b) the psychological variables of catastrophizing, anxiety, and depression.  In addition, it was expected that (c)catastrophizing, anxiety, and depression would be associated with the intensity of momentary fatigue."

MEMORY FOR FATIGUE IN CHRONIC FATIGUE SYNDROME:

RELATIONSHIPS TO SYMPTOM VARIABILITY, CATASTROPHIZING AND NEGATIVE AFFECT Stephanie J.  Sohl, MA1 and Fred Friedberg, PhD2

    Let's get together and get real. Congress needs to be brought back to the base of operations---Myalgic Encephalomyelitis as a neurological disease with serious CNS consequences due to brain injury with serious cardiovascular and immunological consequences.  The disease snatches the vital life out of patients on the level of other diseases like MS, AIDS, and mitochondrial myopathies.

Myalgic Encephalomyelitis/CFS can no longer be thrown into the junkpile of the diagnosis by exclusion & psychosomatic perceptual models.  The perception of the medical community & general public is the problem, which has its source in CDC misrepresentation of the disease.  Patients are trying to make it day-to-day, and we see the future clearly---willful ignorance of a real neuroimmune disease.

 

Thanks for your participation,

Steven Du Pre, Co-founder of National Alliance for Myalgic Encephalomyelitis
www.name-us.org

Lois Ventura, Co-founder of National Alliance for Myalgic Encephalomyelitis

Karen M. Campbell, Founder of CFSfacts.org

Patricia Caprio, Founder of Million Letter Campaign

 

 

URLs for printing out the document for your Congressional delegation:

 

WordPerfect: http://www.co-cure.org/2007_Request_for_Congressional_Action--New.wpd
 

Word: http://www.co-cure.org/2007_Request_for_Congressional_Action--New.doc
 

PDF: http://www.co-cure.org/2007_Request_for_Congressional_Action--New.pdf
 

 The above URLs will open documents that have text boxes of Expert Testimony in them which makes the document shorter and stronger for Congressional aides & Congressional Representatives.

In this Co-Cure post, we cannot include the text boxes, but below is the Action statement.

(It's only a total of 3 pages in the URLs for you to print out along with your cover letter, so it is very manageable, and we think with your help we can make a difference in this battle for proper recognition of a very misunderstood disease.)

And here is where you can go to learn "How to use this Congressional Action:"

www.name-us.org/AdvocacyPages/Advocacy.htm#How_to_use_this_Congressional_Action

 


 

Request for Congressional Action

Brief picture of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome situation:

 

In 20 years time, the toll has risen to over 1 million victims in the US alone & millions more worldwide.  US health agencies have not addressed this danger to public health nor sought to find the cause or remedies for the suffering.  These health agency policies have ignored past research in this disease & patients are systematically denied medical services, & US MDs are misinformed about this disease.  These policies impact the health of those disabled by ME/CFS & continue to place everyone at risk.  A principal issue must not be overlooked: Why has ME/CFS exploded into a worldwide epidemic, and what is the inordinate fear of the DHHS to recognize this and discover its cause?

 

Expert Testimony: "I have treated more than 2,000 AIDS and CFS patients in my career.  And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!" Dr.  Marc Loveless who testified under oath in testimony before Congress in 1995.

 

          All Americans would benefit by our government health agencies using their publicity contracts effectively to distinguish between idiopathic chronic fatigue of undetermined pathology and the neurological disease Myalgic Encephalomyelitis/CFS delineated in the 2003 Consensus Criteria for ME/CFS (see international consensus criteria at: http://www.mefmaction.net/documents/me_overview.pdf which supports historic worldwide M.E.  definitions.

Expert Testimony: "In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages" Dr.  Daniel L.  Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994

 

The neurological coding for Myalgic Encephalomyelitis has been in the WHO International Classification of Diseases since 1969 (first identified in 1934), but it was ignored by the CDC epidemiologists when a few notable outbreaks of the disease occurred in the late1980s, one of the outbreaks among children in Lyndonville, NY.  Instead of making use of a half-century of research & clinical information available about Myalgic Encephalomyelitis & its epidemic nature, the CDC & NIH chose to focus on the non-medical criteria "fatigue," leading to the mistaken impression both within and without the agencies that "CFS" was a psychosomatic or minor illness when ample evidence to the contrary was available (ref: Osler's Web, by Hillary Johnson).

 

The coining of the term "chronic fatigue syndrome," was a way to ignore a fully recognized international disease & instead substitute a very common symptom in many serious disorders, & a symptom healthy people recover from easily.  And there is now a public relations campaign taking place at the CDC that ignores the neurological coding & historic epidemics, & instead places the disease in the all-encompassing category of "fatiguing illnesses" which buries solid research into the clearly defined disease, Myalgic Encephalomyelitis/CFS.  The research case definition for CFS (Fukuda et al., 1994) developed by CDC encompasses a very heterogeneous population.  Dr.  Jason has requested removal of the present case definition & drafting a new one based on actual observations, rather than vague impressions, which is what the CDC committee has done.

 

Expert testimony: Dr.  Leonard Jason from DePaul University, Chicago, wrote that it is regrettable that the disorder is portrayed in such a narrow way, and that flaws in the case definitions of 'CFS' have led to "inaccurate and biased characterization of ME/CFS which incorrectly favors a psychiatric view of the illness".  He correctly pointed out "the erroneous inclusion of people with primary psychiatric conditions in ME/CFS samples will have detrimental consequences for the interpretation of treatment efficacy findings".  (This has happened, with many research patient pools mistakenly including people who have primary psychiatric conditions & do not meet the internationally-accepted Consensus Criteria for ME/CFS.)

 

For 20 yrs., CDC and NIH have not responded to many requests by ME/CFS patients, caregivers, researchers & clinicians for truth-telling & proper recognition of this serious neuroimmune disease.  Ignored by the very agencies that are charged with addressing public health issues such as this, we remain disabled, misunderstood, denied sensible treatment, & unable to return to economic productivity, a burden on our families & society as a whole.  Dr.  Leonard Jason recently showed the economic impact of ME/CFS in a community based versus tertiary based sample, estimating that the direct and indirect costs of ME/CFS in the US are $22-28.6 billion annually.

 

What can be done by Congress in this situation?

1.  What to do about CDC misinformation & mismanagement of research:

Name & Criteria & ICD Coding

CDC needs to relinquish the "fatiguing illness" construct for patients who meet the criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) & allow the development of solid criteria based on the 2003 Consensus Criteria for ME/CFS so that clear patient cohorts can be identified for research purposes.  (Note: The terms ME/CFS and ICD-CFS are used internationally to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organization's International Classification of Diseases (Re: severely debilitating organic neurological disorder Myalgic Encephalomyelitis-ICD9 CM 323.9/ICD10 CM G 93 .3) & the politically & financially motivated, all-encompassing & broadly-defined 'fatiguing' version of CFS-R53.82, a NOS code or Ill-Defined Conditions 780.71--2 entirely different problems.)

 

The CDC's coining of the phrase "chronic fatigue syndrome" was an attempt to ignore outbreaks of a real disease, Myalgic Encephalomyelitis, as well as an attempt to downgrade the condition to a stress- based psychological condition.  This misinformation continues & was part of a recent public awareness campaign about CFS by the CDC to try to distract with their latest flawed research attempting to place the blame for the disease on genetic inability to handle stress.  In contrast gene studies in the UK have shown immune system problems (Dr.  Jonathan Kerr's team has identified viruses that may perpetuate the disease, which fits with some current thinking that it results from a persistent infection.  And, in fact, the two medications shown to bring about improvement in most patients are both antivirals, thus demonstrating that the problem is viral and not psychiatric in origin.  Dr.  Kerr's gene expression studies are finding three main abnormalities in ME/CFS patients: these involve the immune system, mitochondrial function and G-protein signalling.  There are seven genes upregulated in ME/CFS - those associated with apoptosis, pesticides, mitochdonrial function, demyelination and viral binding sites.)

 

Expert Testimony: "The worst cases have both an MS-like and an AIDS-like clinical appearance.  The most difficult thing to treat is the severe pain.  Most have abnormal neurological examination.  80% of cases are unable to work or attend school.  We admit regularly to a hospital with an inability to care for self." Paul Cheney, Professor of Medicine, Capital University, USA: Testimony Before the FDA Scientific Advisory Committee, 18 February 1993

"The NK (natural killer) cell is a very critical cell in (ME)CFS because it is clearly negatively impacted.  The most compelling finding was that the NK cell cytotoxicity in (ME)CFS was as low as we have ever seen it in any disease.  This is very, very significant data.  (In (ME)CFS) the actual function was very, very low --- 9% cytotoxicity: the mean for the controls was 25, In early HIV and even well into ARC (AIDS related complex, which often precedes the fully developed condition), NK cytotoxicity might be around 13 or 14 percent.  (ME)CFS patients represent the lowest cytotoxicity of all populations we've studied." Nancy Klimas, Professor of Medicine, University of Miami School of Medicine; Director of Immunology; Director of AIDS research and Director of the Allergy Clinic at Miami.

 

The false CDC construct of "fatiguing illnesses" and their 1994 Fukuda criteria become a wide net that catches a large number of patients who experience the symptoms of burnout, thyroid problems, or other medical issues which are incorrectly mixed with the clear and identifiable criteria of the neuroimmune disease Myalgic Encephalomyelitis/CFS, i.e., muscle myopathy (loss of muscle power) diagnostically tested by means of bicycle ergometry testing, neurological diagnostic testing (brain SPECT scans, PET scans & QEEG scans) showing brain hypoperfusion, the neurocognitive abnormalities definitively identified through neurocognitive testing, and the immune system dysregulation (several tests).  In contrast, the CDC website counsels doctors that there is no definitive diagnostic testing and that the above listed tests are unnecessary.  This is an ever-present danger for patients and a disservice to medical doctors who would like to treat the disease properly.

 

Expert Testimony: "I take great issue with the current recommendations that no additional testing should ever be done.  I believe there are indications for more advanced testing" Dr.  Daniel Peterson: [a Diplomate of the American Board of Internal Medicine who first identified CFIDS during an outbreak in Incline Village, Nevada, in1984] JCFS 1995: 1:3-4:123-125).  At the Second World Congress on ME/CFS and related disorders, held in Brussels in September 1999, Peterson said he was amazed at the misconceptions that existed about ME/CFS; he said that ten years ago, he believed ME/CFS would be resolved by science; he had now changed his mind and believed it could only be resolved by politics)

 

2.  What to do about Placement of ME/ICD-CFS at the NIH:

Proper placement & recognition of neurological coding of M.  E.  & appointment of a standing committee for approval of research projects

The NIH places the disease in the area of Office of Women's Health even though 25% of patients are male.  Just as in 1950, MS patients asked Congress to have the disease MS (formerly called Faker's Disease or Hysterical Paralysis) placed in the area of Neurological Disorders, so also Myalgic Encephalomyelitis, exhibiting detrimental effects on the central nervous system, has a neurological ICD coding and should be placed in this section of the NIH and given a standing committee to approve research projects rather than an ad hoc approval committee as things now stand.  (In 1950, the MS Society persuaded Congress to establish a special section of the National Institutes of Health, now called the National Institute for Neurologic Disorders and Stroke (NINDS).

In the case of Myalgic Encephalomyelitis/CFS, there is ample evidence of neurological abnormalities: http://www.co-cure.org/neuro.pdf and also ample evidence of immunological abnormalities: http://www.co-cure.org/immuno.pdf   Thus, this disease at NIH is misplaced in the Office of Women's Health.

 

Expert Testimony: "Abnormalities of immune function, hypothalamic and pituitary function, neurotransmitter regulation and cerebral perfusion have been found in patients with (ME/CFS).  Recent research has yielded remarkable data.  The symptoms of (ME)CFS have long been viewed as a neurologic pattern, as confirmed by other names such as myalgic encephalomyelitis.  A link is being forged between the symptoms pattern of (ME)CFS and objective evidence of central nervous system dysfunction.  The view that (ME)CFS is a primary emotional illness has been undermined by recent research" Dr.  David S Bell: Instructor in Pediatrics, Harvard Medical School: Chronic Fatigue Syndrome update: Findings now point to CNS involvement: Postgraduate Medicine 1994:98:6:73-81) Dr.  Bell was the M.  D.  dealing with the epidemic of Myalgic Encephalomyelitis/ICD-CFS in Lyndonville, New York involving both children and adults.

 

3.  What immediate actions need to be taken

Require the CDC and NIH to formally adopt the 2003 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Clinical Working Case Definition Diagnostic and Treatment Protocols; A Consensus Document: (http://www.mefmaction.net/documents/me_overview.pdf) to replace the present inadequate and inaccurate 1994 Fukuda criteria (proven ineffective by Dr.  Leonard Jason in the study cited above.  At the same time, implement the internationally accepted name Myalgic Encephalomyelitis/CFS to accurately describe what is currently known about the disease.

Instruct the CDC to update the information it disseminates to reflect the World Health Organization classification (Myalgic Encephalomyelitis/CFS in the ICD-10 under the neurological classification G93.3)

 

Why doing this makes sense & Why Congress needs to intervene now

1.  Clear research cohorts can be identified in order to find the cause of the disease, and so that the small amount of research money can be used wisely and without resorting to psychiatric explanations for a biomedical condition.

 

2.  Early detection can be established rather than waiting for six months of fatigue in the CDC criteria which can result in less disability and less money lost by the country in regard to lost productivity

3.  Patients can be treated more efficiently and correctly, and MDs can be presented with clearly defined criteria so they are not in the position of disbelieving patients and being confused by CDC "fatiguing illnesses" constructs.

The 2003 Consensus Criteria can be used to clearly diagnose patients rather than the present scattershot approach of the CDC, and also three or four definitive tests can be run to clearly identify patients as Myalgic Encephalomyelitis/CFS: brain neuro SPECT or PET scan, neurocognitive testing, Natural Killer Cell Function test, and the Rnase-L antiviral dysregulation testing.

**********************************************************

 

References for information in our statement at the beginning of this post for the reasons for this Action above:

1.  Dr.  Hyde's Little red book at this site on the top.  Click on the PDF file.

http://www.investinme.org/InfoCentre%20library.htm
 

2.  Dr.  Malcolm Hooper:

http://www.satori-5.co.uk/1_severe_me/prof_hooper_dvd.html
 

3.  Dr.  Leslie Simpson studies:

** "Myagic Encephalomyelitis (ME): A Haemorheological Disorder Manifested as Impaired Capillary blood Flow." Leslie O.  Simpson, Ph.D., Journal of Orthomolecular Medicine Vol.  12, No.  2, 1997.  "The consequences of stiffened, shape-changed red cells would be to impair capillary blood flow particularly in tissues with smaller than usual mean capillary diameters.  The degree of reduction in the rates of delivery of oxygen and nutrient substrates would be related to symptom severity."

** Simpson L.  Red cells in the chronic fatigue syndrome. Med J Aust 1991;154:78.

** Simpson L.  Nondiscocytic erythrocytes in myalgic encephalomyelitis. NZ Med J 1989;102:126e127.

** Simpson LO, Shand BI, Olds RJ.  Red cell and hemorheological changes in multiple sclerosis.  Pathology 1987;19:51e55.

http://www.nrg.com.au/~nrmecfs/research.htm
 

http://cfidsreport.com/Articles/researchers/lessimpson.htm
 

4.  Dr.  Nancy Klimas & example of Natural Killer Cell Function

*Fletcher, MA, Maher, K and Klimas, NG.  Natural killer cell function in chronic fatigue syndrome.  Clin Appl Immunol Rev.  2:129-139, 2002.

**Caligiuri M, Murray C, Buchwald D, Levine H, Cheney P, Peterson D, Komaroff AL, Ritz J.  Phenotypic and functional deficiency of natural killer cells in patients with chronic fatigue syndrome.  J Immunol.  1987 Nov 15;139 (10):3306-13.

**Pross, HF.  "Abnormalities of natural killer (NK) cell numbers and function in patients with chronic fatigue immune dysfunction syndrome (CFIDS) 1993 In BM Hyde et al., eds.  The clinical and scientific basis for myalgic encephalomyelitis chronic fatigue syndrome.  Ottawa: Nightingale Research Foundation: 566-572

5.  Rnase-L dysregulation:

**Suhadolnik, R.  A., Peterson, D., Reichenbach, N., Roen, G., Metzger, M., McCahan, J., O'Brien, K., Welsch, S., Gabriel, J., Gaughan, J.  and N.  McGregor.  2004.  Clinical and biochemical characteristics differentiating chronic fatigue syndrome from major depression and healthy control populations: relation to dysfunction of the RNase L pathway.  Journal of Chronic Fatigue Syndrome 12: 5-35.

 

6.  Dr.  Melvin Ramsay criteria:

Dr.  Melvin Ramsay, pioneer UK researcher and clinician, posits this short description of Myalgic Encephalomyelitis: 1) Muscle myopathy, which Ramsay describes as a delay in muscle recovery after exercise.  2) Circulatory impairment including intolerance to temperature extremes, and exacerbated by low pressure weather systems.

3) Cerebral (brain) dysfunction including problems with memory and concentration, sleep disturbances, noise intolerance, palpitations and tachycardia.

 

Dr.  Ramsey's 1986 more complete definition:

A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash.  Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognized.

Characteristic features include:-

(1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

(2) Neurological disturbance - an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

(4) A characteristically chronic relapsing course

7.  2003 Consensus Criteria Overview:

http://www.mefmaction.net/Portals/0/docs//ME-CFS-Overview.pdf
 

 


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