Saturday, May 22, 2010

Are Social Security's Administrative Law Judges fair?

Are Social Security's Administrative Law Judges fair?

Each year, more than 434,000 disability claims are decided by the Social Security Administration's 1,300 administrative law judges in more than 140 hearing offices nationwide. Although the judges are supposed to follow the same guidelines to determine who is diasbled, they deliver rulings that are far from uniform.

The data here, covering fiscal years 2005 through 2008, can be searched three ways.
By state -- State agencies make the first decisions in disability cases. Those who are denied by their state can then appeal their case to a federal administrative law judge in a Social Security hearing office.
By hearing office -- Disability cases are considered in Social Security's hearing offices nationwide. Claimants are entitled to a face-to-face hearing, but many cases are conducted by video teleconference.
By judge -- Denial rates and workloads vary widely among the judges.

Thursday, May 20, 2010

Overlapping Conditions Alliance to fight discrimination

May 20, 2010

Launch event and Capitol Hill meetings reinforce human and financial toll of chronic pain

The following press release about the launch of the Campaign to end Chronic Pain in Women was sent to more than 1,000 media outlets across the nation yesterday after an event on Capitol Hill that attracted congressional staff
from 35 offices, leaders of women's organizations and health organizations and reporters. The event was held in cooperation with the Congressional Caucus on Women's Issues at the Capitol Visitor Center.

After the event, leaders of the CFIDS Association of America (Kim McCleary), the Endometriosis Association (Mary Lou Ballweg and Carol Drury), the TMJ Association (Terrie Cowley and Deanne Cleare) and the National Vulvodynia Association (Christin Veasley) met with staff in the offices of the Senate Majority Leader (Senator Harry Reid), the Speaker of the House (Rep. Nancy Pelosi), chairman of the Senate Health,
Education, Labor and Pensions and Appropriations Committees (Sen. Tom Harkin), chairman of the Senate Aging Committee (Sen. Herb Kohl), chairman of the House Energy and Commerce Committee (Rep. Henry Waxman) and chairman of the Health subcommittee of the House Energy and Commerce Committee (Rep. Frank Pallone) as well as other House authorizers and
appropriators. They discussed the policy recommendations in the report and gained important feedback about ways in which the campaign goals can be incorporated into new programs being implemented under the Patient Protection and Affordable Health Care Act.

Watch for more news about the Campaign to End Chronic Pain in Women in CFIDSLink, on our website and our Facebook page

PRESS RELEASE                               
For Immediate Release                        
May 19, 2010                                 

The Overlapping Conditions Alliance Launches the "Campaign to End Chronic Pain in
Women" on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare

Campaign Releases Comprehensive Report & Groundbreaking Campaign Film on Chronic Pain in Women

WASHINGTON D.C. (May 19, 2010) - The Overlapping Conditions Alliance today launched
the Campaign to End Chronic Pain in Women, an advocacy campaign fighting to end
discrimination and improve care for women suffering from chronic pain.  The Campaign
aims to improve the quality of women's lives by raising awareness about chronic
pain conditions that disproportionately impact women, as well as the neglect, dismissal
and discrimination faced by women living with chronic pain under the current U.S. healthcare system.

A representative from the office of Rep. Tammy Baldwin (D-WI), a leader of the Congressional
Caucus for Women's Issues, provided opening remarks. Congressional staffers, patients,
and other Washington D.C. area advocates for women's health issues were also in

"While healthcare reform legislation took an important first step to address chronic
pain issues, we have a lot of work ahead of us," said a representative for Caucus
Co-Chair Rep. Tammy Baldwin (D-WI). "I look forward to working closely with the Campaign to End Chronic Pain in Women to teach our healthcare system how to confront
chronic pain and ensure that no woman suffers needlessly."

At today's press conference the Campaign released a groundbreaking report, Chronic
Pain in Women: Neglect, Dismissal and Discrimination, which offers policy recommendations
that could save the government billions of dollars in wasted healthcare costs each
year.  The hour-long launch event also featured the premiere of the short film,
Through the Maze: Women and Pain, and the unveiling of the Campaign website Following the event, Campaign leaders are
scheduled to meet with targeted congressional offices to discuss key report findings
and policy recommendations.

"This campaign is about the pattern of neglect, dismissal and discrimination of
women's chronic pain conditions, which serves as the latest example of one of the
many gaps in the U.S. healthcare system that deepen human suffering," said Kim McCleary,
President & CEO, CFIDS Association of America.

Chronic Pain in Women: Neglect, Dismissal and Discrimination, which was commissioned
by the Campaign, examines the current lack of effective treatments and research
funding for chronic pain conditions that predominantly affect women, and how improvements
in research, education and access to effective treatments could contribute to improved
quality of care and cost control.

"The costs to patients go beyond dollars," said Terrie Cowley, President, TMJ Association. "Patients can lose their dreams and hopes of careers, of a family, of a quality life and even life itself.  This is why it is so important that cost effective
investments in research be made, and that a campaign is created to educate healthcare
professionals and promote public awareness of these conditions."

According to the Campaign report, in 2009 the National Institutes of Health invested
only $65 million in research into the six chronic pain conditions highlighted in the report - chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial
cystitis, temporomandibular (TMJ) disorders and vulvodynia - just two-tenths of
one percent of its total budget. That is an average of just $1.33 for every affected
woman and represents less than one-tenth of one percent of the annual estimated
cost of these conditions.

"Women in our society are oftentimes raised with the notion that it's normal to
suffer," said Mary Lou Ballweg, President & Executive Director, Endometriosis Association.
"Education of healthcare professionals and the general public is essential during
this time of reform, to ensure that women in this country no longer have to suffer in silence."

The Campaign includes volunteer leaders from four non-profit patient advocacy organizations,
including The CFIDS Association of America, The Endometriosis Association, The National
Vulvodynia Association, and The TMJ Association.

"Chronic pain doesn't just affect the sufferer - it affects each and every one of
us and every part of our society," said Christin Veasley, Associate Director, National
Vulvodynia Association. "By appropriately investing in research, educating medical
professionals and the public at large, we have a real opportunity to change the lives of millions of American women, their families, our economy, and society as a whole."

About The Campaign to End Chronic Pain in Women:
The Campaign to End Chronic Pain in Women is an advocacy campaign fighting to end
discrimination and improve care for women suffering from chronic pain. The Campaign
is made up of volunteer leaders from the CFIDS Association of America, Endometriosis
Association, National Vulvodynia Association, and The TMJ Association. Pfizer helped to offset the costs of campaign materials. For more
information, visit


Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.

Tuesday, May 18, 2010

"Learning to Trust Myself"

Note: Although the disease in this April 2010 article on patient empowerment
in More Magazine is not CFS, many parallels have been drawn both
biomedically and culturally between CFS and MS once known as "Faker's
Disease" or "Hysterical Paralysis."Learning to Trust Myself
by Leslie Egnuss

*How one woman relied on her intuition to challenge several
physicians—including her own husband.*

There was, at first, the occasional numbness, but as friends were quick to
point out, everyone gets pins and needles, right? Then there were the words
I couldn't find . . . but that happens to all of us as we age. Stranger
symptoms came and went. My speech was slurry, and then not. I was depressed,
and then not. I was confused and overwhelmed, but then moments later
clearheaded and capable.

I'm 45 now, and for years I suspected I had a biological brain illness. Yet
I was told by many medical professionals, including my own husband, that
there wasn't anything wrong with me...


Permission to Repost

Submission re: DSM-V and ME/CFS

Compiled by Professor Malcolm Hooper and Margaret Williams for submission by
The 25% ME Group

20th March 2010


The 25% ME Group for the Severely Affected is a registered UK charity
representing people who are profoundly disabled by Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Myalgic Encephalomyelitis (ME) has been classified by the World Health
Organisation (WHO) as a neurological disorder since 1969. Currently it is
listed in the International Classification of Diseases (ICD), chapter 6,
under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD,
the WHO approved the term "Chronic Fatigue Syndrome" (CFS) as a term by
which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3,
hence the composite term "ME/CFS" is often used to denote the disorder. A
synonymous term also sanctioned by the WHO is "postviral fatigue syndrome".

This submission is a public record of the charity's concern relating to the
forthcoming revision of the American Psychiatric Association (APA)'s
Diagnostic and Statistical Manual for Mental Disorders (DSM) and the
intention to create a new diagnostic category of "Complex Somatic Symptom
Disorder" (CSSD) which would combine existing categories of somatisation
disorder, undifferentiated somatoform disorder, hypochondriasis and pain
disorder (APA; Justification of Criteria - Somatic Symptoms, 1/29/10).

An influential group of American and European psychiatrists, including
British psychiatrists Professors Michael Sharpe, Peter White and Simon
Wessely (often referred to as the "Wessely School": Hansard; Lords, 9th
December 1998:1013), together with Francis Creed (since 1997, Professor of
Psychological Medicine in the Psychiatry Research Group in the Manchester
University School of Medicine; European Editor of the Journal of
Psychosomatic Research and a member of the Medical Research Council Advisory
Board) does not accept the WHO classification of ME/CFS as a neurological
disorder but assert that it is a functional somatic syndrome (ie. a mental

Although the CSSD literature currently does not specifically mention the
terms ME or CFS as proposed inclusions, the existing evidence suggests that
the DSM Somatic Symptom Disorder Work Group intends to ensure that ME/CFS
will fall within the purview of the new category of CSSD because they
believe ME/CFS to be an example of a CSSD (ie. they believe that ME/CFS
patients complain of physical symptoms that do not result from underlying
physical disease but are the consequence of abnormal illness beliefs, and
that the abnormal beliefs are responsible for the perpetuation of the
perceived disability). It seems clear that in clinical practice, these
psychiatrists would like to see the diagnosis of ME/CFS replaced by a
diagnosis of CSSD (ie. a psychiatric classification instead of an organic
one) and that they are working diligently to achieve their aim.

However, on 28th June 2001 the Classification, Assessment, Surveys and
Terminology (CAS) Measurement and Health Information Systems (MIS) section
of the WHO confirmed that it had no plans whatsoever to remove ME from the
section on Disorders of Brain and transfer it to a psychiatric
classification. The WHO provided further confirmation on 6th August 2002,
when it reconfirmed that ME will not be reclassified as a psychiatric
disorder and will remain in the neurology section of the ICD, and on 24th
March 2003 the WHO confirmed that ME/CFS cannot be known as or included with any mental or behavioural disorder, once again confirming that it will remain classified as a neurological disorder, and that the WHO has no
intention of re-classifying it as a psychiatric disorder in any forthcoming
revision of the ICD.

In the years following this confirmation, yet more evidence of neurological
pathology in ME/CFS has emerged and therefore in order to harmonise with the
ICD, the APA needs to ensure that ME/CFS does not by default fall within the
ambit of the proposed diagnostic category of CSSD that will appear in the
forthcoming DSM-V.

It is submitted that the proposed diagnostic criteria for CSSD are
conceptually flawed because they lack sufficient specificity to be
clinically meaningful. They do not define the target population and
represent a potential threat to people with a diagnosis of ME/CFS as they
are open to misapplication by clinicians who refuse to accept the
substantial evidence that ME/CFS is an organic disorder.


Evidence that the DSM CSSD Work Group believes ME/CFS to be a somatoform

UK Professors Creed and Sharpe are members of the DSM-V Somatic Symptom
Disorder Work Group and were members of Conceptual Issues in Somatoform and
Similar Disorders Project (CISSD, not to be confused with CSSD) that was
launched by Richard Sykes to stimulate dialogue about the taxonomy of
functional somatic syndromes, which the CISSD Group asserted included
irritable bowel syndrome, Chronic Fatigue Syndrome and fibromyalgia.
(Richard Sykes was formerly Director of the ME charity Westcare, now merged
with the charity Action for ME, whose brother Sir Hugh Sykes is a
non-executive Director of Action for Employment known as A4e, the largest
European provider of Welfare to Work programmes that implements a social
policy introduced in the UK in 1997 which focuses on specific groups of
people claiming benefits, including those on disability benefits). According
to Sharpe and Sykes, the CISSD Group's aim was to make the criteria for
Somatoform Disorder either "more inclusive" or to add a "lower threshold
category" (Kurt Kroenke, Michael Sharpe, Richard Sykes. Review Article:
Revising the Classification of Somatoform Disorders. Psychosomatics

The 2007 Review discusses "pseudo-neurological symptoms"; misinterpretation
of bodily symptoms"; "rumination about bodily symptoms"; "catastrophizing,
ie. fear of bad outcomes despite reassurance" and "seeking care from
multiple providers for the same symptoms", all of which exemplify the
Wessely School's description of ME/CFS patients and which form the bedrock
of the APA's new category of CSSD.

The DSM classification uses multiple axes (Axis I, referring to psychiatric
diagnoses; Axis II, referring to personality disorders, and Axis III,
referring to general medical conditions). The 2007 Review discusses whether
"these so-called functional somatic syndromes such as chronic fatigue
syndrome would properly be placed on Axis III (but) this can be seen as
inconsistent if a patient with the same symptoms seen by a psychiatrist is
diagnosed with a somatoform disorder on Axis I". An Axis I diagnosis is
required in some healthcare systems to justify financial reimbursement to a
mental health professional.

Of particular concern is the fact that a diagnosis of somatisation may
depend on a "total symptom count", which "may bypass the methodological
difficulties in arbitrating symptom aetiology", because there are over 50
recorded symptoms in ME/CFS (The Disease of a Thousand Names. David S Bell.
Pollard Publications, New York, 1991). At the Royal Society of Medicine
meeting on 28th April 2008 on CFS, Professor Peter White advised that once a
CFS patient has more than four symptoms, it was likely that s/he had a
psychiatric disorder. Such a belief cannot be objectively verified and is
not in accordance with the British Medical Association's advice on complex
medical disorders.
The Foreword to The British Medical Association Complete
Family Health Guide is clear: "The Guide is based on advice from a panel of
medical consultants chosen by the BMA, and their experience provides an
unrivalled assurance of quality and reliability". Under hyperthyroidism, the
BMA consultants list 10 symptoms; under Cushing's syndrome, 11 symptoms are
listed; under asthma, 11 symptoms are listed; under chronic kidney failure,
8 symptoms are listed; under AIDS, 13 symptoms are listed.

The unproven beliefs of the psychosocial school have no relevance to complex organic disorders such as ME/CFS.

However, these psychiatrists have variously described the discrete
neurological disorder ME/CFS as:

"medically unexplained symptoms" (referred to as MUS):

. "..MUS. This term is now used in preference to 'somatisation'.The medical
specialities employ shorthand descriptions for particular clusters of MUS,
including irritable bowel syndrome, fibromyalgia and chronic fatigue
syndrome" (L. Page, S. Wessely, JRSM 2003:96:223-227).


. in relation to ME/CFS patients' correct belief that there is viral
involvement and Wessely's chapter "Viruses and fatigue: the current status
of the chronic fatigue syndrome" in "Biological Factors and Psychiatry"
edited by Kurskak E, New York, Plenum, 1991, Wessely's colleagues emphasise
that "Wessely sees viral attribution as somatisation par excellence" (Helen
Cope, Anthony David, Anthony Mann. Journal of Psychosomatic Research
1994:38:2:89-98). (Note that the correct citation should be "Psychiatry and
Biological Factors" and that the editor's name is Kurstak E).

. Professor Sharpe argues that people with ME/CFS are not ill as a result of
any physical disease; he is on record as affirming that ME is "a
pseudo-disease diagnosis" (Occup Med 1997:47:4:217-227); his view about
ME/CFS "has long been that the issues surrounding (it) are the same as those
surrounding acceptance and management of (patients) who suffer conditions
that are not dignified by the presence of what we call disease" (J Psychosom
Res 2002:52:6:437-438) and he maintains that patients with ME/CFS choose the
"advantages" of the "sick role" and therefore should not qualify for welfare
benefits. It is also his belief that ME/CFS patients are "the undeserving
sick of our society and our health service" because they "refuse to be
placed into and accept the stigma of mental illness" (Michael Sharpe; "ME.
What do we know - real physical illness or all in the mind?"; lecture given
in October 1999 hosted by the University of Strathclyde).


. "Neurasthenia remains in the Mental and Behavioural Disorders chapter (of
ICD-10) under Other Neurotic Disorders. Neurasthenia would readily suffice
for ME" (A. David, S. Wessely, Lancet 1993:342:1247-1248).

a "functional somatic syndrome":

. "..the existence of specific somatic syndromes (in which the authors
include ME/CFS) is largely an artefact of medical specialisation..Functional
somatic syndromes.are associated with unnecessary expenditure of medical
resources" (S. Wessely, C. Nimnuan, M. Sharpe, Lancet 1999:354:936-939).

. in 2002, Michael Sharpe wrote a paper titled "Functional Symptoms and
Syndromes: Recent Developments" (published in "Trends in Health and
Disability" by the insurance company UNUMProvident:
00F8/0/CMOReport2002.pdf) in which he stated that functional somatic
syndromes have been referred to as "'hysteria', 'abnormal illness
behaviour', 'somatisation', 'somatoform disorders'..Recently, the terms MUS
and 'functional symptoms' have become popular amongst researchers". In his
table of "Common medically defined functional syndromes" Professor Sharpe
included the taxonomically separate disorders Chronic Fatigue Syndrome,
fibromyalgia (classified in ICD-10 at M79), irritable bowel syndrome and
multiple chemical sensitivity and proposed that "these conditions be
considered together as a 'general functional somatic syndrome". It is of
note that the creation of a CSSD category would represent the fulfilment of
Professor Sharpe's proposal.

. "Functional somatic syndromes..include chronic fatigue
syndrome..Perpetuating factors have particular importance in understanding
CFS.Physical deconditioning as a consequence of reduced activity may
contribute towards greater experience of symptoms" (Hyong Jin Cho, Simon
Wessely, Rev Bras Psiquiatr 2005:27:3).

a "classical psychosomatic disorder":

. "Anorexia Nervosa (AN) and chronic fatigue syndrome (CFS) are classical
psychosomatic disorders where response to social threat is expressed
somatically" (advertisement for a psychology graduate to work with ME/CFS
patients placed by the Institute of Psychiatry; the closing date for
applications was 13th July 2007 and the job reference was 07/R68. The
post-holder was to work under the direction of Professor Trudie Chalder, a
behavioural therapist who, together with Michael Sharpe and Peter White, is
one of the Principal Investigators of the MRC PACE Trial).

It is also the belief of these psychiatrists that "cognitive distortions"
(ie. aberrant or maladaptive illness beliefs) are responsible for the
perpetuation of ME/CFS, for example:

"cognitive distortions":

. "I will argue that ME is simply a belief, the belief that one has an
illness called ME" ("Microbes, Mental Illness, The Media and ME: The
Construction of Disease"; Simon Wessely; 12th May 1994; 9th Eliot Slater
Memorial Lecture, Institute of Psychiatry, London).

. "CFS is dogged by unhelpful and inaccurate illness beliefs.they include
fears and beliefs that CFS is caused by a persistent virus infection or
immune disorder" (Anthony J Cleare, Simon C Wessely; Update 1996:14th
August: 61).

. "The clinical problem we address is the assessment and management of the
patients with a belief that s/he has an illness such as CFS, CFIDS (chronic
fatigue immune dysfunction syndrome, a term used in the US) or ME..The
majority of patients seen in specialist clinics typically believe that their
symptoms are the result of an organic disease process.Many doctors believe
the converse" (Sharpe M, Chalder T, Wessely S et al. General Hospital
Psychiatry 1997:19:3:185-199).

. The MRC PACE Trial Identifier says: "CBT will be based on the illness
model of fear avoidance. There are three essential elements: (a) assessment
of illness beliefs and coping strategies, (b) structuring of daily rest,
sleep and activity, with a graduated return to normal activity, (c)
challenging of unhelpful beliefs about symptoms and activity" (Section 3.2).

. "the symptoms and disability are perpetuated predominantly by unhelpful
illness beliefs (fears) and coping behaviours (avoidance)" (MRC PACE Trial
CBT Manual for Therapists, page 18).

Since a diagnosis of CSSD requires the presence of somatic symptoms and
cognitive distortion, it can be seen that the Wessely School would consider
ME/CFS to fall within that proposed diagnostic category.

Dismissive of the WHO classification, the Wessely School asserts: "Medical
authorities are not certain that CFS is exactly the same illness as ME, but
until scientific evidence shows that they are different they have decided to
treat CFS and ME as if they are one illness"
( ) and instructs doctors involved
with the Trial that: "if a participant calls their illness ME don't attempt
to challenge this, ME or CFS is an appropriate term to use" (MRC PACE Trial;
SSMC manual for participating doctors, page 13).

Thus there can be no dispute that the Wessely School is referring to the
specific neurological disorder ME/CFS, and that their unauthorised
reclassification is not in accordance with the WHO taxonomy.

Using Professor Wessely's own material, in 2000 the neurological disorder
ME/CFS was included in a textbook for General Practitioners entitled "Guide
to Mental Health in Primary Care" that was produced by the WHO Collaborating
Centre for Mental Health at the Institute of Psychiatry, London. However, on
16th October 2001 the WHO issued a statement repudiating this unauthorised
reclassification, confirming in writing: "Postviral fatigue syndrome remains
under diseases of the nervous system as G93.3. Benign myalgic
encephalomyelitis is included within this category. Neurasthenia remains
under mental and behavioural disorders as F48.0 and fatigue syndrome is
included within this category. However, postviral fatigue syndrome is
explicitly excluded from F48.0.. It is possible that one of the several WHO
Collaborating Centres in the United Kingdom presented a view that is at
variance with WHO's position. I understand that the Collaborating Centre
concerned has now made changes to the information on its website after
speaking with WHO".

Undaunted, and rejecting the taxonomic principles employed by the WHO,
Wessely School psychiatrists then asserted that the WHO had classified the
same disorder (ME/CFS) in two places, once in the Neurological Section
(ICD-10 G93.3) and also in the Mental and Behavioural Section (ICD-10

Once again, their claims were formally repudiated in writing by the WHO; on
23rd January 2004, Andre L'Hours from the WHO headquarters in Geneva
confirmed that: "According to the taxonomic principles governing ICD-10 it
is not permitted for the same condition to be classified to more than one
rubric as this would mean that the individual categories and subcategories
were no longer mutually exclusive".

The Wessely School, however, has continued to ignore the clarification
provided by the WHO.

In his presentation at the Royal Society of Medicine's conference on Chronic
Fatigue Syndrome on 28th April 2008 Professor Peter White said: "I'm going
to try to define what Chronic Fatigue Syndrome is. By doing so, I'm going to
review the ICD-10 criteria for the illness and see if they're helpful. The
answer will be, they are not helpful.Does the ICD-10 help us? Unfortunately
not; there are at least five ways of classifying CFS using the ICD-10
criteria. What are they? We start off well: myalgic encephalomyelitis is in
the neurology chapter of ICD-10.and helpfully, "chronic fatigue syndrome,
postviral". So it starts off well. What if the viral illness is not a clear
trigger for the illness? Well, you've got alternatives: in the Mental Health
Chapter, you've got Neurasthenia.".

Despite the fact that eighteen years previously, the American Medical
Association confirmed that "chronic fatigue" is not the same as the Chronic
Fatigue Syndrome (JAMA press release, 1990, referring to the issue of 4th
July 1990), Professor White conflated "chronic fatigue" (ie. ongoing
tiredness) with "Chronic Fatigue Syndrome" (ie. a neurological disorder),
thus further demonstrating his belief that ME/CFS (ICD-10 G93.3) is the same
as psychogenic fatigue (ICD-10 F48.0). He discussed the various somatoform
classifications in the ICD-10, before saying: "the trouble with these
diagnoses is, you somehow have to guess that psychological factors have an
important role to play in their aetiology". He concluded his presentation:
"ICD-10 is not helpful and I would not suggest, as clinicians, you use
ICD-10 criteria. They really need sorting out, and they will be in due
course, God willing" ("What is Chronic Fatigue Syndrome and what is ME?";
webcast: ).

That was a clear instruction to clinicians to disregard the ICD-10
classification of ME/CFS as a neurological disorder.

Diagnostic accuracy is of vital importance in medicine: a person with a specific and complex neuro-immune disorder such as ME/CFS requires very different management and care from a person with an ill-defined state of chronic "tiredness".

It is indisputable that these psychiatrists have subsumed the nosological
disorder ME/CFS within a wide range of undifferentiated states of "medically
unexplained chronic fatigue" (ie. they have claimed it as a somatisation
disorder); that they ignore the pathognomonic feature of ME/CFS that is
measurable and reproducible (post-exertional fatigability of muscles
accompanied by intense malaise), and that they disregard the substantial
evidence-base of organic pathoaetiology published in peer-reviewed journals,
as well as the objective signs and documented symptoms (summarised at pages 98-214), focusing
instead on what they regard as the subjective complaint of "fatigue" and on
patients' supposed "cognitive distortions".

They insist that this heterogeneous group of "fatigued" people must be
uniformly managed by cognitive behavioural therapy (CBT) and graded
(aerobic) exercise therapy (GET). The aim of these psycho-behavioural
interventions is to convince patients - including those with ME/CFS -- that
they do not suffer from an organic disorder but are simply deconditioned
secondary to inactivity, "symptom focusing" and "hypervigilance to normal
bodily sensations" (asserted to be curable by cognitive "restructuring" in
order to disabuse ME/CFS patients of the "aberrant belief" that they have an
on-going physical disease), together with incremental aerobic exercise to
strengthen their "deconditioned" muscles. There is no evidence of deconditioning in ME/CFS; on the contrary, as long ago as 2001, Bazelmans et al demonstrated that deconditioning is not a factor in ME/CFS (Psychol Med 2001:31:107-114.) and this was confirmed by Sargent et al the following year (Med Sci Sports Exerc 2002:34:1:51-56).

Notwithstanding, the MRC PACE Trial, designed and executed by Professors
White, Sharpe and Wessely, is predicated on their assumption that ME/CFS
patients are decondtioned, and upon their belief that the post-exertional
incapacitating fatigability of ME/CFS falls within the continuum of normal,
everyday "tiredness". They believe this "tiredness" to be no different in
character from the fatigue experienced by otherwise healthy individuals, but
that ME/CFS patients respond to it inappropriately by resting too much,
focusing on being tired, and by attributing it to a non-existent physical
disease process.

The PACE Trial literature states explicitly that ME/CFS can be cured by the
application of cognitive behavioural therapy and/or graded exercise therapy;
Professor Michael Sharpe has stated "There is evidence that psychiatric
treatment can be curative" (British Medical Bulletin 1991:47:4:989-1005) and
Professor Peter White has asserted "recovery from CFS is possible following
CBT..Significant improvement following CBT is probable and a full recovery
is possible" (Psychother Psychosom 2007:76(3):171-176).

From their prolific publications about ME/CFS, it is clear that the UK
Wessely School, and indeed its American and Continental counterparts, have
no interest in what has been described by a leading US Professor of
Psychology who specialises in ME/CFS as "diagnostic accuracy" (Jason L et
al. JCFS 1999:5:3-33).

The AMA proposed category of CSSD for DSM-V

The APA states about the proposed CSSD category: "The hallmark of this
disorder is disproportionate or maladaptive response to somatic symptoms.In
severe cases (patients) may adopt a sick role.Some patients feel that their
medical assessment and treatment have been inadequate.The symptoms may or
may not be associated with a known medical condition.The symptoms sometimes
represent normal bodily sensations.or discomfort that does not generally
signify serious disease.or are incompatible with known pathophysiology (e.g.
seeing double with one eye closed)".

For the avoidance of doubt, seeing double with one eye closed is not
incompatible with known pathophysiology; it is known as monocular diplopia:
a false image occurs if, through misalignment, the image falls on the
periphery of the retina; it may also be attributable to axial lens
opacities, to pterygium (thickening of the conjunctiva over the cornea), or
to xerophthalmia (dry eye). It is discouraging to learn that the
psychiatrists charged with the task of accurately describing the proposed
category of CSSD ascribe recognised ocular pathology to "cognitive

For a diagnosis of CSSD to be made, there must be not only "somatic
symptoms" (criterion A) but also "cognitive distortions (criterion B)".

Although the predictive validity of most of the new diagnostic proposals has
not yet been investigated, the Work Group proposes that to meet criteria for
CSSD (a category designed to be the "interface" between medicine and
psychiatry), a person must satisfy the conditions described by criteria A, B
and C:

A. "Somatic symptoms: multiple somatic symptoms that are distressing, or one
severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and
illness: at least two of the following are required: (1) high level of
health-related anxiety (2) normal bodily symptoms are viewed as threatening
or harmful (3) a tendency to assume the worst about their health
(catastrophizing) (4) belief in the medical seriousness of their symptoms
despite evidence to the contrary (5) health concerns assume a central role
in their lives

C. Chronicity: although any one symptom may not be continuously present, the
state of being symptomatic is chronic and persistent (at least six months)".

These criteria represent a template for the Wessely School's assumptions and
assertions about the nature of ME/CFS, as can be verified by comparing them
with the 1991 Oxford criteria for CFS, whose lead author was Michael Sharpe
(JRSM 1991:84:118-121) and with the Wessely School's many claims that ME/CFS
is perpetuated by patients' "aberrant illness beliefs".

Criteria A and C are so wide and non-specific that they have little clinical
utility. These two criteria (physical symptoms and chronicity) could apply
to anyone with any long-term disease, for example, renal failure or multiple
sclerosis, thus in practice a diagnosis of CSSD becomes contingent upon a
person satisfying only criterion B.

In relation to criterion B (misattribution of symptoms), it is the Wessely School psychiatrists, not patients themselves, who misattribute the physical symptoms of ME/CFS by persistently ignoring the biomedical evidence which explains them.

Given the central importance of criterion B (of which two of its
sub-criteria must be met for a diagnosis of CSSD), it can be seen that the
text requires substantial revision because sub-criteria B (1), B (2) and B
(3) are essentially synonymous (ie. they re-state the same issue), thereby
leading to potential over-diagnosis of CSSD.

In relation to sub-criterion B (1), diagnostic accuracy is particularly
important. It is true that health-related anxiety might well be a feature of
some ME/CFS patients and this is hardly surprising given the severity of
symptoms which afflict a significant percentage of patients. There is
extensive evidence of HPA-axis under-activity in many patients and this will
inevitably impact on the output from the adrenal and thyroid glands leading
to an exaggerated stress response and the likelihood of anxiety related
signs. Appropriate medical management of patients' signs and symptoms would predictably reduce such anxieties, so they should not be regarded as
evidence of either primary or co-morbid CSSD.

The difference between high levels of health-related anxiety in ME/CFS and,
for example, patients with general medical disorders such as cancer, is that
whilst the latter will be under the expert care of an oncologist, the former
have no such specialist on whom to rely. Whilst it may be helpful for
psychiatrists to offer secondary support in any serious illness if
necessary, the experience of ME/CFS patients with liaison psychiatry is
entirely negative because Wessely School psychiatrists avoid engaging with
the underlying medical disorder. Once psychiatrists are involved, other
medical specialists disengage with the ME/CFS patient; the psychiatrists
establish a monopoly and over-claim a primary psychosomatic disorder. They
dismiss patients' concerns, thereby affording bodies such as the MRC no
incentive to seek a cure, so priorities become re-arranged.

The proposed category of CSSD seeks to expand the role of psychiatry into
the territory of general medicine and aims to increase the influence of
psychiatrists upon patients with medical disorders: "There is a paucity of
epidemiological data on somatization disorder as defined by DSM-IV, and the
impression is that this disorder is extremely rare. When different criteria
are finds very different prevalence estimates" (APA;
Justification of Criteria - Somatic Symptoms, 1/29/10). In seeking wider
acceptance of psychiatry within medicine in general, ie. by creating an
"interface between medicine and psychiatry" and by attempting to capture
"somatic symptoms that are below the diagnostic threshold of somatization
disorder" that they believe occur widely in general medical disorders,
psychiatrists whose primary interest is "somatisation" may misattribute normal responses to serious physical symptoms as a psychosomatic disorder
that they consider requires a psychiatric diagnosis and intervention, as has
happened in the case of ME/CFS.

Another aspect is that the high level of health-related anxiety in ME/CFS may well be iatrogenic: when patients with a serious medical disorder are denied appropriate investigations and medical support, when they are falsely accused of seeking secondary gain, when a doctor refuses to validate their genuine physical symptoms, when medical support for essential benefits is refused (which may result in destitution) and when there is no care or cure, then it is entirely understandable that the ME/CFS patient will experience high levels of health-related anxiety but - with the correct medical support and intervention - such anxiety can be ameliorated so should not be considered diagnostic of CSSD.

The basic point that is not addressed in sub-criterion B (1) is the
direction of causation of the health-related anxiety and no distinction is
made between the natural anxiety that accompanies any serious medical
disorder and a morbid anxiety.

In relation to sub-criteria B (2) and B (3), the symptoms of ME/CFS are far
from "normal" bodily sensations. Wessely School psychiatrists often accuse
patients with ME/CFS of holding "catastrophic illness beliefs", but they do
not address symptoms of ME/CFS other than "fatigue", such as repeated,
prolonged vertigo, frequent episodes of incapacitating chest pain of similar
intensity to a myocardial infarction, metabolic demand that is
insufficiently met by cardiac output, loss of muscle power, or the inability
to look after oneself, all of which may rightly be considered catastrophic
by the patient. Wessely School psychiatrists exclude such patients from
their studies.

In relation to sub-criteria B (4) and B (5), patients with ME/CFS rightly
believe in the "medical seriousness of their symptoms" because not only does
the biomedical research evidence show such a belief to be rational and
correct, there is no "evidence to the contrary"; furthermore, when ME/CFS
patients recurrently experience such serious symptoms, it is entirely
reasonable that "health concerns assume a central role in their lives" and
such entirely reasonable concerns should not be classed as "cognitive

Many clinicians and scientists accept M/CFS to be organic, and that patients do not have cognitive distortions

That ME/CFS is a serious medical disorder has long been accepted by informed
clinicians and researchers, for example:

. "(ME/CFS) has an organic basis; it is not a psychiatric illness. Our
Surveillance Study does not support the notion that (it) is a psychiatric
illness, and in fact, suggests that it has an organic basis" (Dr Walter
Gunn, Principal Investigator of CFS studies at the US Centres for Disease
Control: CFIDS Chronicle, February 1992, page 1).

. "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; published in JCFS 1995:1:3-4:123-125).

. In 1995, Professor Mark Loveless, Head of the AIDS and ME/CFS Clinic at
Oregon Health Sciences University said in his Congressional Briefing that an
ME/CFS patient: "feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades".

. "In comparison with other chronic illnesses such as multiple sclerosis,
end-stage renal disease and heart disease, patients with ME/CFS show
markedly higher levels of disability
" (Quality of Life and Symptom Severity
for Individuals with Chronic Fatigue Syndrome: Findings from a Randomised
Clinical Trial. RR Taylor. American Journal of Occupational Therapy

. CDC researcher Dr William Reeves, then Chief of the ME/CFS research
programme, reported that ME/CFS patients "are more sick and have greater
disability than patients with chronic obstructive lung or cardiac disease,
and researchers found that the strongest predictor of the development of
ME/CFS is the severity of the acute illness at onset, and that psychological
factors played no role'"
(Press Release: AACFS, 7 October 2004).

. In 2005, Nancy Klimas, Professor of Medicine, Division of Immunology,
University of Miami; Co-Director, E.M. Papper Laboratory of Clinical
Immunology; Professor of Microbiology and Immunology, University of Miami,
and Director of AIDS Research and Co-Director of the AIDS Clinical Research
Unit, Miami VA Medical Centre, said in her American Association for CFS
In-coming Presidential Address: "Our patients are terribly ill,
misunderstood, and suffer at the hands of a poorly informed medical
establishment and society".

. On 3rd November 2006, at the National Press Club, Washington DC, the US
Centres for Disease Control announced its "CFS Toolkit" to inform not just
the US but the whole world about the nature and severity of ME/CFS. At the
Press Conference, Dr William Reeves, then Chief of Chronic Viral Diseases
Branch at CDC, said: "We've documented, as have others, that the level of
impairment in people who suffer from ME/CFS is comparable to multiple
sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary
disease. The disability is equivalent to that of some well-known, very
severe medical conditions. We found that ME/CFS follows a pattern of
remitting and relapsing symptoms, the symptoms can change over time, and
that spontaneous recovery is rare. We found that the best predictor for
ME/CFS was intensity of the initial infectious disease. The sicker the
patient when s/he first got infected, the more likely they were to have
persisting chronic symptoms. There were no other factors, psychological or
biological, that held up under thorough analysis".

. At the same Press Conference, Professor Nancy Klimas said: "There is
evidence that the patients with this illness experience a level of
disability that is equal to that of patients with late-stage AIDS, patients
undergoing chemotherapy (and) patients with multiple sclerosis".

Symptoms of ME/CFS have long been demonstrated to result from dysfunction of
the immune, neurological, endocrine, cardiovascular, respiratory,
gastrointestinal and musculo-skeletal systems, as reviewed by Jason et al:

"ME/CFS is one of the more complex illnesses involving multiple systems
within the body...This debilitating illness can affect the immune,
neuroendocrine, autonomic and neurologic systems. Abnormal biological
findings.have included aberrant ion transport and ion channel activity,
cortisol deficiency, sympathetic nervous system hyperactivity, EEG spike
waves, left ventricular dysfunction in the heart, low natural killer cell
cytotoxicty, and a shift from Th1 to Th2 cytokines..Van Houdenhove (et al,
2009) suggest that at an early stage of the illness, a switch takes place
from HPA axis hyper- to hypo-functioning, and this observation is supported
by some animal and human data. When the HPA axis becomes downregulated,
there is not an effective Th1 response to attack viral infections (and) the
immune system may cause inflammation (explaining elevated antinuclear
antibody levels). The patient with ME/CFS now has ineffective protection
from viruses, intracellular bacteria, and inflammation.In response to
postural stress, 81% of patients with ME/CFS and no controls experienced
ejection fraction decreases (and) those who had greater ejection decreases
experienced more severe ME/CFS symptoms.The resulting low circulatory state
may make it difficult for patients to meet the demands of everyday
activity..Streeten and Bell (2000) found that the majority of patients with
ME/CFS had striking decreases in circulating blood volume.Additionally, it
appears that the blood vessels in patients with ME/CFS are constricted
dramatically..lowered cortisol production during and following exercise may
be implicated in the cardiac dysfunction seen in many patients" (LA Jason et
al. Journal of Behavioural and Neuroscience Research 2009:7:1-17).

Given the substantial evidence of organic pathology in ME/CFS, it is only
possible to attribute the symptoms to somatisation or its proposed
replacement category of CSSD by failing to heed the published biomedical

The refusal of the psycho-social school of psychiatrists to acknowledge the existence of the biomedical evidence does not constitute lack of evidence of the organic nature of ME/CFS.

For patients with ME/CFS not to be concerned about such a serious,
multi-system organic disorder would be inappropriate; indeed, in the past,
psychiatrists argued that indifference to physical symptoms indicated a
psychosomatic disorder
("la belle indifference", defined in the DSM-IV
description of conversion disorder/hysteria as being an apparent lack of
concern shown by some patients towards their symptoms. Jon Stone, Michael
Sharpe et al; Brit J Psychiat 2006:188:204-209).

However, CSSD sub-criterion B (5) posits the opposite, namely, that concern
about physical symptoms is indicative of a psychosomatic disorder. This is
not only contradictory but reductio ad absurdum (an absurdity when followed
to its logical conclusion) and leaves ME/CFS patients in diagnostic
quicksand because any attempt to articulate the serious, organic reality of
their symptoms only traps them further in the grip of the poorly designed
CSSD construct.

The APA should be troubled by the beliefs of the Wessely School and other
CSSD Work Group members

There are many published international concerns about well-known
psychiatrists' lack of scientific exactitude in relation to ME/CFS, with
urgent calls for accuracy in diagnosis, for example:

. in 1997 US expert Professor Leonard Jason (a psychologist) expressed
concern: "Many physicians minimised the seriousness of this disorder and
interpreted the syndrome as being equivalent to a psychiatric disorder.
These attitudes had negative consequences. It is crucial for CFS research to
move beyond fuzzy recapitulation of the neurasthenia concept and to
differentiate CFS from other disorders"
(Jason L et al. American
Psychologist 1997:52:9:973-983).

. Dr Alan Gurwitt, a US psychiatrist who does not subscribe to the Wessely
School beliefs about ME/CFS, has repeatedly expressed his dismay and
frustration; for example on 23rd January 2003 he noted about these
psychiatrists: "They often fail to distinguish between 'chronic fatigue' and
'chronic fatigue syndrome'. The former is a fairly common symptom in medical
clinics that does have a high linkage to already-present psychological
problems. The latter is a specific medical condition. Their sloppiness has
led to all kinds of trouble and misunderstandings"

. in 2006 Professor Mark Demitrack (a psychiatrist) encapsulated the problem
that Wessely School psychiatrists (and those they influence) decline to
address. He noted the entanglement of physical symptoms and behavioural
symptoms, and the various studies by certain psychiatrists purporting to
show that the likelihood of psychiatric disorder increased with the number
of physical symptoms. In relation to ME/CFS, he noted that dismissing it as
a somatoform disorder was inappropriate: "The observation of specific
protracted fatigue and the absence of substantial psychiatric comorbidity
argues convincingly that this is an inappropriate and overly simplistic way
of approaching this puzzling condition". Demitrack concluded: "In the face
of accumulating evidence, there is an increasing realisation that a unitary
disease model for this condition has been a theoretical and practical
impediment to real progress towards effective therapeutics for ME/CFS. Many
treatment studies have, unfortunately, neglected to thoroughly consider the
significance of patient selection (and) symptom measurement"
(Pharmacogenomics 2006:7(3):521-528).

. in 2007, referring to ME/CFS, fibromyalgia and irritable bowel syndrome,
Jason et al pointed out that "measurement that fails to capture the unique
characteristics of these illnesses might inaccurately conclude that only
distress and unwellness characterise these illnesses, thus inappropriately
supporting a unitary hypothetical construct called functional somatic
syndrome" (JCFS 2007:14(4):85-103).

Because of the Wessely School's continued use of their own much-criticised
"Oxford" criteria for CFS, British psychiatric studies of people with ME/CFS
have repeatedly failed to address the issue of how to accurately
characterise the disease. Referring to the MRC PACE Trial which uses the
superseded Oxford criteria, Professor Michael Sharpe specifically stated at
the Edinburgh International Science Festival in April 2004: "We want
broadness and heterogeneity in the trial". However, in a keynote lecture at
the ME Research UK international research conference held on 25th May 2007
in Edinburgh, Canadian psychiatrist Dr Eleanor Stein criticised the Oxford
criteria, which she said "could describe almost anybody. I do not believe
that studies which use the Oxford criteria can be generalised to patients
with ME/CFS".

A key issue is that whilst cognitive behaviour therapy and graded exercise
therapy may be of some benefit to those with somatoform disorders, there is
abundant evidence that directive CBT aimed at disabusing patients of their
correct belief that they are physically sick and incremental aerobic
exercise aimed at reversing deconditioning are contra-indicated in ME/CFS
(  pages 88-92; 111-210).

The APA also needs to consider that, whilst those with somatoform disorders
are not prohibited from donating blood, people in the UK with ME have been
permanently excluded from donating blood since at least 1989 (Guidelines for
the Blood Transfusion Service in the UK, 1989: 5.4; 5.42; 5.43; 5.44;
5.410). This was upheld by the Parliamentary Under Secretary of State, The
Lord Warner, who confirmed in writing on 11th February 2004 in a letter to
the Countess of Mar that people with ME/CFS are not permitted to be blood
donors. Lord Warner was unambiguous: "The National Blood Service guidelines
on donor selection on ME refer to those on Post Viral Fatigue Syndrome. The
Guidance is: defer from blood donation until recovery. The underlying logic
is that this condition is possibly viral and therefore the NBS cannot accept
the risk of possible transmission by blood. Since the condition is very
variable and sometimes prolonged, it could become a lifetime ban in any
particular case".

There is international concern that the proposed diagnostic category of CSSD
as it is currently defined will be used to incorrectly diagnose ME/CFS
patients with a psychiatric disorder.

It is of note that the draft of the proposed new category of CSSD states:
"Having somatic symptoms of unclear aetiology is not in itself sufficient to
make this diagnosis. Some patients, for instance with irritable bowel
syndrome or fibromyalgia would not necessarily qualify for a somatic
symptoms disorder diagnosis" (APA Somatic Symptom Disorders, 29th January
2010) but no such assurance is offered with respect to ME/CFS. This needs to
be rectified.

Finally, the Report of the UK All Party Parliamentary Group on ME ("Inquiry
into NHS Service Provision for ME/CFS", March 2010, page 15) is unequivocal:
"diagnosing the illness as psychosomatic is unprofessional, inept and
callous to the patient".

To avoid what would rightly be perceived as a damaging and regressive
development, the American Psychiatric Association must take this opportunity
to uphold diagnostic precision and ensure that the neuro-immune disorder
ME/CFS is named as an explicit exclusion from the proposed category of CSSD
in accordance with the WHO classification.

Without this clarification, the forthcoming DSM-V will signal a willingness
by the APA to endorse an approach that ignores medical science.

Failure to uphold diagnostic accuracy will lead to misdiagnosis (leading to
potential viral transmission of ME/CFS through blood products),
inappropriate treatment and further loss of confidence in the scientific
integrity of the psychiatric profession.

18th Anniversary of Awareness Day

  Greetings Boys and Girls, Ladies and Germs,

  Today is the 18th anniversary of May 12th,
  International Awareness day for CIND (Chronic
  Immunological and Neurological Diseases) We
  included ME/CFS, GWS, FMS, and MCSS that first

  Over the years we have added other CIND disorders
  as they became known including tick borne illnesses
  such as Lyme Disease, Bartonella,Babesia, and other
  viruses, bacteria, microbes, chemical insults, and
  other toxins as they are discovered like XMRV. The
  most important words in this note are the following
  two: THANK YOU!!!

  Thank YOU to one and all who crawled out of bed to
  help in any way for us to get to an 18th anniversary!
  A special thanks to Roger Burns for keeping us online
  for the first decade, and Jerome Greyson for keeping
  us online for the second decade. And to my parents,
  my friend's Michael and Patrick, and Robert who
  helped pay rent, and all those who fed me over the
  past 25 years.

  Thanks to anyone who wrote or called their local,
  regional, or national politicians. Thank you also to
  any spouse, sibling, neighbor, or friend who helped
  to care for those of us who are too sick to care for
  themselves. It might sound odd, but hand written,
  personal notes to our politicians, newsmakers, and
  editorial boards of newspapers are sometimes the
  most effective help you can give us.

  As most of you know, since the medical experts have
  not been able to isolate a single virus, bacteria, or
  chemical insult that triggers our descent into this
  *Living Hell*, most of us with diagnoses of FMS, ME,
  CFS, GWS, and MCSS, which I called Chronic
  Immunological and Neurological Disorders (CIND)
  back in 1991 have to rely on lists of symptoms to get

  For all you newbies out there, make SURE you keep
  good records of these lists. And take those lists to
  the various doctors you will see before you get a
  proper diagnosis.

  Then still keep those lists of symptoms and tests
  taken in a big box, because you will need them to
  help win a disability case.

  Sadly, at least in the USA, 90% of people who
  become disabled, are rejected the first time they
  apply for permanent disability.

  About 75% are rejected on the second application.
  And even when you go before a judge, (called the
  Administrative Law Judge or ALJ) you only have a
  50/50 chance of winning disability.

  If some of you are healthy, Please google Ms. Lennie   Copeland. She was the brains behind *Living Hell*,   the best documentary yet produced about people with ME. and CFS. She lived in the bay area of San
  Francisco, the last I heard. Her brother played drums
  in a little band by the name of the *the Police*.
  A copy of that should be put up on You tube!

  Because I am personally so ill, i have not been able
  to get it together to write up lists of things that
  have worked over the years..

  It really is stunning to hear so called *experts* of the
  Weaselly school describing various and sundry
  *somatic* symptoms that allegedly have no known
  medical cause.

  He has done the same with the so called *Gulf War
  Syndrome* (now called Gulf War Illnesses). In reality, it is the incompetence of the medical establishment and NOT our fertile imaginations that are keeping us sick.

  I have read more than 21,000 emails, letters, notes,
  treatises, medical articles, and internet postings,
  and probably met more than 1,000 *sufferers* of
  these various disorders at medical conference across
  the USA and at government meetings over the past
  25 years, and to be honest, their stories, with very
  few exceptioms, or outliers, don't vary by more than
  10%,.. 15% at the most. I believe that the great Dr.
  Melvin Ramsey wrote the best sentence ever to
  describe the misery of ME. when He said:

  *The degree of physical incapacity varies greatly,
  but the dominant clinical feature of profound
  fatigue is directly related to the length of time the
  patient persists in physical efforts after its onset:
  put in another way, those patients who are given
  a period of enforced rest from the onset have the
  best prognosis*.

  (of Course, this is exactly the opposite of what
  actually happens in the U.S. and what our
  overworked, overwhelmed, and undertrained Doctors

  When most of them are ignorant about CIND
  (Chronic Immunological and Neurological Disorders)
  such as ME., CFS, MCSS, FMS, GWS, and Tick borne
  illnesses like Lyme, Babesia, Bartonella, Brucellosis,
  Giardia, EBV, HHV6, XMRV, etc.)

  I can assure you that C.B.T. (Cognitive Behavioural
  Therapy) and G.E.T. (Graded Exercise Therapy) might
  help some people, some of the time, but they are
  NOT the answers to the vast majority of people who
  have been SO ill, that they are homebound or
  bedbound for six consecutive Months or more.

  25 years ago, we were listed as having the *Yuppie
  Flu* because many of us were hard charging types
  who spent our life savings trying to find something,
  anything that could be so vicious, that it could
  completely ruin our lives.

If you had most ANY other serious illness and waited until you were bedbound for six months, I could diagnose you in 4 simple letters. D.E.A.D!

  It is incomprehensible to me, that the medical
  establishments of the world would accept for more
  than 2 decades, such stunningly incompetent work
  product as the so-called Holmes -1988, Fukuda 1994,
  and Willy Wonka Reeves -2005 'definitions' of
  something that doesn't really exist.

  The mysterious *Chronic fatigue syndrome*. back on
  April 15, 1989, I gave my first public speech about
  *CFS*. I said that Webster's dictionary says that to
  *define is to make clear and distinct, to

  Then they proceed to list a bunch of symptoms that
  any ill person could have. If you want to look at a
  definition for the alleged *CFS*, look at the Canadian
  Consensus Definition from Carruthers, et al. And if
  you want to find an accurate definition of Myalgic
  Encephalomyelitis, then google Byron Hyde,MD, of
  the Nightingale Foundation. It was Byron who told
  me about Florence Nightingale.

  When I researched the history of our little Ms. Flo,
  she sounded like MANY of the nurses i have met with
  M.E. over the years. When i found out that her
  birthday was in the springtime in the northern
  hemisphere, and early autumn in the southern
  hemisphere, I said, *We have found our day*. Since i
  was already considered a *burr under the saddle* of
  the medical establishment, i used the words *May
  12th was chosen* and i kept my name OUT of it.

  However, Today is May 12th!

  To all who are still on the right side of the grass,
  I say Congratulations!

  Send a friend to the library and ask the librarian to
  order a copy of *Osler's Web* by the great Hillary
  Johnson. She has a new, and updated edition out.
  then Read it!

  This book details the struggle of so many of us over
  the past 25 years. The original editor of this book also edited *And the Band Played On* By Randy Shilts, a famous AIDS activist back in the 1980's.

  He said, *I never thought i would say this, but you people (meaning CFS patients) were treated worse than WE were!* (meaning AIDS patients, who were spat upon, denied medical treatment, thrown out of their homes, denied fair insurance settlements and more) UNTIL, some brilliant researchers isolated HIV, a retrovirus, that crippled, but did not kill it's victims.

  However, HIV weakened the host soo much that,
  other opportunistic infections killed the patient.

  With ME and related disorders, we are often worse
  off. Even with the discovery of XMRV, I personally do
  not believe that any one virus, bacteria or toxin is
  causing all of this misery.

  The famed virus hunter, Louis Pasteur once said,
  *The antigen is Nothing. The Terrain is everything!*

  I think we are all stuck in a case of *different insult,
  same result*. this is BAD news for insurance
  companies. If they were forced to pay fair
  settlements to all of us who are too sick to work, but
  just not quite sick enough to die, they would go

  Most of these big, multinational Insurance
  companies have gambled their clients' premiums for
  the past decade on esoteric financial instruments
  called CDO's.

  These Financial *instruments of mass destruction* as
  Warren Buffett calls them have wiped out the profits
  of the big insurance companies.

  They even wiped out the equity of AIG, one of the
  largest Insurance companies ever created.

  And Places like UNUM/Provident Insurance do not
  have the funds to pay fair disability claims for us.
  So, they try to obfuscate the truth, and delay and
  deny paying just claims. They are aided and abetted
  by incompetent and underfunded wags at the CDC
  and NIH. and We pay the price.

  Things are changing however.

  The Whittemore/Peterson Institute has ruffled the
  feathers of many in the medical establishment by
  teaming up with the renowned Cleveland Clinic, and
  some top virologists and researchers in the country. I
  do know know if XMRV is a cause, or the cause of all
  this misery, or a simple bystander. But it has woken
  up the sleeping giant.

  As i said back in 1989, at the end of my speech in
  SF, CA. *The late Sam Rayburn, chair of the Senate
  Subcommittee investigating the crimes of Watergate,
  -Any damn jackass, can kick a barn down, but it
  takes some damn fine carpenters to build one!'

  I think it is high time that we stop allowing these
  jackasses from kicking our individual barns down. We
  need to continue to unite, at least one day per year,
  and work in unison with people like the WPI, and the
  upcoming NEI Institute in New Jersey, spearheaded
  by my friend Marly Silverman, founder of
  P.A.N.D.O.R.A., and all the doctors and researchers
  who believe that we are SICK and not tired.

  These people know that we ARE tired
  of being SICK! We need to ask these
  carpenters to help rebuild our lives.

  So, Please go to our website at
  and then scroll down to the M.E. Petition. We have
  more than 8700 names on our petition. PLEASE write
  a few sentences on the petition when you sign it.

  Ask your friends and family to sign it as well. We
  need to pass the 10,000 signatures mark. Then we
  can ask some healthier people to take the petition to
  Congress, to the CFSCC, to the medical
  establishments of the world.

  Then Please download Susan Wenger's excellent and
  prescient song about M.E. and please donate some
  funds via paypal, so we can keep going for another
  18 years!

  Thank YOU ALL for your help over the years. This day
  was and is completely patient driven.

  So keep up the great work!

  but remember to take care of Numero Uno!

  Remember that the great philosopher Edwin
  Schopenhauer once said, *All truth goes through three stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident.

  Ciao for now.


  Tom Hennessy, jr.
  Creator of may 12th International Awareness
  Day for CIND.

Why Don't Doctors Listen to Women?

Congratulations and thanks to Nancy Klimas for getting a snippet about our disease out in the relative mainstream - the Ms. Magazine blog.

Mary Schweitzer
* * *
I've had doctors accuse me of things they obviously see in the sort of women who chase doctors: getting married with the primary intention of quitting my job, getting divorced with the primary intention of getting massive amounts of alimony, etc.  Things that don't work if you're married to a guy who makes minimum wage.  That a woman would want to work, that a woman would have a career she doesn't want to give up, doesn't match up to what they've seen in their own wives, therefore, it does not compute.


Monday, May 17, 2010

Letter to the Editor of Guardian (UK)

Permission to Repost

From: Professor Malcolm Hooper

To: The Guardian in response to their recent article that can be read


The Editor

The growing understanding of ME shown in the recent article (The trouble
with ME 14/05/10) by your medical correspondent, Sarah Boseley, is most
welcome. However, there are a number of significant errors and omissions in
the article.

ME is Myalgic Encephalomyelitis, which signifies muscle pain with
inflammation of the brain and spinal cord (inflammation has been shown to
occur, in three recent UK post-mortems) and the disorder has been classified
by the WHO as a neurological disorder since 1969. The correct terminology is
NOT myalgic encephalopathy, which is not classified and is a much less
specific clinical term. The alternative term Chronic Fatigue Syndrome, CFS,
was introduced in 1988. Its use is restricted by the WHO to ICD-10 G93.3 and
excluded from use elsewhere, particularly in somatoform, fatigue, chronic
fatigue, and fatigue syndromes which are classified at F48.0. The
similarities in these words used in F48.0 and in G93.3 have led to much
confusion, and some deception, by those seeking to reclassify ME as a
somatoform disorder.

The identification of people with ME relies on accurate terminology and case
definition which are essential for well designed research studies. The
CDC-Fukuda 1994 definition has been shown to be non-specific, whilst the
1991 Oxford definition developed and favoured by certain influential
psychiatrists who work for the medical insurance industry, excludes
neurological conditions. Studies with such heterogeneous cohorts of patients
cannot provide any meaningful data for interpretation. The current Medical Research Council PACE Trial on "CFS/ME" is seriously flawed in this way since it uses the Oxford definition which embraces all states of "medically unexplained fatigue" but by definition excludes those with ME, a  situation that defies logic.

The 2003 Canadian Criteria were produced by very experienced clinicians who,
between them have diagnosed and treated over 20,000 patients with ME. They
provide comprehensive clinical signs associated with ME, from which any
competent physician should be able to make a diagnosis with the use of
appropriate investigative tests many of which are restricted or proscribed
in the UK by NICE. 

Although the recent judicial review did find against the ME plaintiffs, the
decision is the subject of a legal challenge due to the alleged failure of
due legal process.

The undeclared vested interest of doctors associated with insurance
companies was critically exposed in the report by senior Parliamentarians
chaired by Dr Ian Gibson which exposed the severe difficulties experienced
by patients with ME when they seek benefits and support. This is not conspiracy theory or paranoia but a daily reality for many patients, families and carers.

Over many years it has been demonstrated that numerous viruses are
associated with ME, the most common being enteroviruses with herpes viruses
(glandular fever etc) coming second.

People do die from the illness (Jason et al. Health Care for Women
International 2006:27:615-626). The tragic story of Sophia Mirza, who died
aged 32 from ME, has been published, together with her medical records.
These demonstrate the ideological commitment of some clinicians to the
somatoform model of the illness and the ignorance and inhumanity of some
members of the medical profession, including sectioning of a very sick woman
and accusations, in this and other cases, of MSBP (Munschausen's syndrome by
proxy) with parents having only limited access to their children or even
banned from any contact.

The offer of only behavioural modification and incremental aerobic exercise
(CBT and GET, upon which the payment of benefits is contingent), which are
management techniques and in no way curative, as allegedly effective
treatments for people with a severe neurological disorder is unethical, and
a betrayal of doctor's Hippocratic oath. Many surveys by ME charities,
including the 25% ME Group for the Severely Affected that represents the
most severely ill have shown that CBT has no lasting value and that GET is
positively harmful. The most severely affected are almost totally excluded
from any research studies since they are housebound or bedbound.

The recent discovery in the US of the retrovirus, XMRV, in ME/CFS patients
emphasises the urgent need for biomedical studies. The acclamation of the
three subsequent studies that failed to find XMRV by those who subscribe to
the behavioural model of ME (which did not attempt to replicate the US
study) serve merely as vehicles to discredit any suggestion that ME/CFS is a
serious organic disease.

Following the demonstrated association of a retrovirus with ME/CFS, the
Canadian and New Zealand governments have banned patients with ME from
serving as blood donors. This accords with the current UK position that
people with ME must refrain from donating blood.

If Sarah Boseley attends the forthcoming Invest in ME conference on 24th May
at 1, Birdcage Walk, Westminster, she will hear international experts
addressing most of the above topics. She will be one of the few medical
journalists who appear willing to listen and learn in order to understand
more fully the complexities of the chronic multi-system illness that is ME.
I look forward to meeting her there.

Malcolm Hooper (Professor)