What the Heck are They Talking About: Neurological CFS

Psychology Today story has more factual errors than there are CFS and fibromyalgia advocates

Okay, so I'm joking around as usual, but the June 2005 issue of the consumer magazine Psychology Today started with the cover "Chronic Fatigue: how your mind makes you sick" and the factual errors just kept coming.

I still don't understand how people who write for a living can't figure out that a single common symptom of many diseases is not the same thing as a medically defined syndrome, which is a specific pattern or group of signs and symptoms, but then I'm a tad picky.

HMMMM. Maybe advocates should send Stedman's medical dictionary instead of letters to the editor.

For advocates who want to make sure their "Letter to the Editor is one of the golden few published the following are tips come from both members of the media and other advocacy movements.

So take a memo.

Tips on Writing Effective
Letters to the Editor

To maximize chances of getting your letter published:

Do:

    * respond directly to an article or commentary  published within the previous few days and follow the citation format  used in the target publication. For example: Re "Chronic Fatigue," Psychology Today, June 2005:

    * keep it concise and focus on the single most important point. Be sure to follow the guidelines and word count limit of the target publication (100 to 250 words is typical for a letter to the editor).

    * limit the number of points you make and stay narrowly focused (don't try to  address two separate issues in one letter).

    * use verified facts (take the time to check original sources);

    * create immediacy by indicating how readers will be affected by the issue you address whenever possible;

    * point people to a resource for more information (like the World Health Organization) or a specific action to take whenever practical;

    * pay close attention to letters by others. Note effective and ineffective approaches, style, length, etc. Be a student of persuasive writing;

Avoid:

    * overstating/exaggerating your point

    * pejoratives (insulting your opponents or other advocates)

    * jargon or acronyms (spell out any name the first time you use it,  followed by the acronym in parenthesis) Example: chronic fatigue syndrome (CFS)

    * saying "I'm writing to..." Omit needless words and use active language.

Here is an example of an advocacy letter that met the above criteria and was published by the New York Times:

    Chronic Fatigue? Have a Sugar Pill

    To the Editor:

    Re ''Placebos Fail the Test'': The article highlights the widespread misconceptions about chronic fatigue and immune dysfunction syndrome.

    While the condition is often referred to as chronic fatigue syndrome and confused with plain old fatigue, studies suggest it is strongly linked to debilitating neurological and immunological problems.

    Many doctors who do not treat it consider the condition a questionable psychological illness, which manifests as physical symptoms.

    But there was once a time when multiple sclerosis was not considered a ''real'' disorder either, and those who continue to hold to the theory that chronic fatigue syndrome is a psychological illness are perhaps equally misinformed.

    BIxxxxxx Mxxxxxxxx
    xxxxxx, N.J.

Want to learn more? Hear it from the Editor behind the "letters to the editor" at the New York Times.

Okay ready, set, go ...

Bad idea #7568 Prescription Privileges For Psychologists

Pursuit Of Prescription Privileges For Psychologists (RxP) :

My personal experience with being prescribed medication by someone other than a medical doctor:

Twice now, I have been prescribed a medication that was clearly contraindicated by my medical history had my medical files been consulted as should always be the case without exception.

And I'm the one who caught it both times: that's not my job and the medical consequences could have been severe. And a malpractice suit is no consolation to myself or my family had I died.

The lesson I learned - always run a prescribed medication past your treating doctor, aka licensed MD first. Knowing from personal experience that sufferers of ME/CFS often experience nasty side-effects with drugs, usually the one's in tiny print listed as rare, I've learned to double check and cross check my prescriptions. When I took the FDA warning in to my medical doctor the medication was discontinued immediately.

Should nonmedical personnel and professionals be allowed to prescribe powerful drugs?

I know what my vote is. What's yours?

For more information about your medications:

http://www.nlm.nih.gov/medlineplus/druginformation.html
http://www.rxlist.com/
http://www.worstpills.org/
http://www.rxcrosscheck.com/ - pay site

Common Sense and Patient Compliance

"Studies have shown that patients retain only a small percentage—less than 20%—of what they're told at the time of a visit," said Mark T. Parker, MD, an emergency medicine physician at Monadnock Community Hospital in Peterborough, N.H.

Why Don't Patients Do What You Tell Them?
American College of Physician
Always Putting Patients First

And that's patients who don't have objectively substantiated working memory problems.

Matching Research Funds

UPDATE:

In the past few months a strong fundraising effort was launched to fund testing by Dr. Natelson, who is researching a set of variables in spinal fluid which could lead to a test for ICD 10 G3.93, a neurological disorder often misdiagnosed when physicians fail to test for the specific biomedical pattern of this disorder. Mr. Bearman challenged the ME/CFS community to chip in when NIH funding proved unavailable.

"With reference to "A challenge in aid of research" we are delighted to confirm that MERGE has received £4000 of matching funding from Mr Bearman. The response to this appeal - from individual ME patients, ME Groups, and Corporate Friends - was heartening, and a great example of "energising ME research" in action. Many thanks to all who contributed or gave this appeal their support."

Co-Cure

John Sayer: Publisher publically questions accuracy of Manu book

Book review:

"The Psychopathology of Functional Somatic Syndromes: Neurobiology and Illness Behavior in Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Illness, Irritable Bowel, and Premenstrual Dysphoria" - Peter Manu, MD (Haworth Medical Press, 2004)

"We do not claim that this information is necessarily accurate by the rigid scientific and regulatory standards applied for medical treatment."
 Publishers note: Haworth Press

“...The evidence indicates pathology of the central nervous system and the immune system.  There is considerable evidence from different investigators, using different techniques and different groups of patients, of a state of chronic immune activation. In summary, there is now considerable evidence of an underlying biological process in most patients (which) is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest."

Anthony Komaroff, Assistant Professor of Medicine at Harvard
February 2000 issue of the American Journal of Medicine

Misleading language, the assumption of psychogenesis, and severe ongoing criticism by psychiatric experts of the validity, reliability, and applicability of  ‘functional’ somatoform disorders are cited as "public relations" problems in this paper.

Rethinking somatoform disorders
Journal: Current Opinion in Psychiatry. 18(1): 65-71, January 2005

I didn't have to even finish reading the Introduction before realizing what an unscientific and inadequate poor excuse for a "textbook" this promised to be.

In fact, Haworth themselves admit as much in their Publisher's Note:

"We do not claim that this information is necessarily accurate by the rigid scientific and regulatory standards applied for medical treatment."

That pretty well says it all: in other words this book is, from the point of view of accuracy and scientific and regulatory standards applied for medical treatment - worthless.

At one time, of course, this would have been the very reason for a book such as this to have been *rejected* for publication.

So why would anyone want to publish it in the first place? Where is the market? Who is the target audience?

I think I can guess. One of Manu's very first references is... something else by himself. This is the first pointer to what is a major exercise in biased referencing. In other words, Manu has drawn upon those sources, which are supportive of his theory.

It involves the old technique of a number of writers continually cross-referring one another's work, to give the appearance of there being a wide-ranging body of shared opinion on their particular subject: a mutual admiration society.

And the point? Well, everyone needs source material (and it's tempting to believe that the lengthier one's bibliography, the more learned and academic one's own work appears), so the psychologisers flood the "references" market with their confused and confusing "theories".

In fact, I've been struck by the number of times lately I've read a "research" study which has turned out to be, not actually conducted in real life by the author(s), but merely a paper analysis of information gleaned by a "search", which these days is more than likely conducted, not in libraries and archives, but on the internet.

The opportunities this affords for bias - i.e. bad research - are legion. And that's not even considering the 'hacking' possibilities.

In the electronic world of the "key word", the search engine is the key to the vault of mutually supportive source material. How many "hits" does one get by typing in "chronic fatigue"? How many compared to, say, "myalgic encephalomyelitis"? (And wouldn't it "hide" the M.E. material even further by using a corruption like "myalgic encephalopathy"?)

I think books like this one serve no better purpose than to corrupt the quality of the source material available to researchers, journalists, health workers, politicians and patients alike. (As I understand it, the only material on M.E. available in the Houses of Parliament libraries is that of a psychiatric flavor; this is certainly a charge justifiably leveled at the BMJ.)

In their Publisher's Note (a complete disclaimer: e.g. "the author, editor and publisher do not accept responsibility in the event of negative consequences incurred as a result of the information presented in this book") Haworth actually claim that "The author has exhaustively researched all available sources to ensure the accuracy and completeness of the information contained in this book."

It is not possible for any human being to have *exhaustively* researched *all* available sources. More appear every day.

This claim is pompous and grandiose, as is the tone of the book.

The Introduction begins:

"Chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, premenstrual syndrome, and Gulf War illness are common illnesses that lack demonstrable structural or biochemical abnormalities and are characterized by medically unexplained symptoms such as fatigue, myalgias, abdominal pain, difficulty with concentration, mood lability, and sleep disturbance (Manu, 1998)."

Apart from the obvious and glaring fallacy of the claim that these illnesses "lack demonstrable structural or biochemical abnormalities", a devious trick is at play here: what appears to be an authoritative statement of fact is actually only a paraphrase of the source given in brackets.

But it doesn't read that way at first glance, as it follows one of the first rules of journalism, a good example of which being "The Queen Mother is made of green cheese and drinks horse blood, says mental patient."

The very opening paragraph is founded on earlier work by the author himself. This is objective research? Oh, but I forget the Publisher's Note: "We do not claim that this information is necessarily accurate by the rigid scientific and regulatory standards applied for medical treatment."

Of course.

The Introduction continues:

"The way in which these entities have been explained has varied, and some clinicians have interpreted and managed them as physical disorders. However, most physicians have understood them to be mental illnesses (Sharpe and Carson, 2001)."

"*Most* physicians"? Has Dr. Manu conducted a survey, then? Well, this actually comes from, apparently, "Sharp and Carson, 2001" - "'Unexplained' somatic symptoms, functional syndromes, and somatization: Do we need a paradigm shift?" Annals of Internal Medicine 134(9 Part 2): 926-930. I haven't read this reference, so I don't know what it actually says. Nevertheless, it protects Dr. Manu from the accusation that he is wrong; he can claim that he was only quoting a source.

He continues his Introduction by referring to "a recent survey of 400 physicians in the South Thames area of England (Reid et al, 2001). More than half of the respondents (63 per cent) thought that the symptoms were best explained by a psychiatric disorder. An even greater proportion of this physician sample (83 per cent) believed that patients with medically unexplained symptoms have a personality disorder. Most of the respondents (93 per cent) felt that patients with such symptoms are difficult to manage. A solid majority (75 per cent) of these physicians rejected the possibility that the symptoms represented evidence of an undiagnosed physical illness."

Hard statistics! But what are they about? Actually, nothing more than the *opinions* of 400 physicians. Clearly these physicians think that chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, premenstrual syndrome, and Gulf War illness are all forms of psychiatric/personality disorders. Is this because they are psychiatrists? The answer is, ironically, no, since the Introduction continues:

"These beliefs were not related to the physicians' training in psychiatry or to the availability of mental health resources in the area they served."

So they were not only *not* psychiatrically trained - thus rendering their opinions of no more value than, say, 400 bus drivers - but also had *no access* to mental health services (just like bus drivers).

Manu's next reference is to: Reid S, Whooley D, Crayford T, Hotopf M. (2001)."Medically unexplained symptoms - GP's attitude towards their cause and management". Family Practice 18(5): 519-523.

Again, a smooth side step. The key word here is "attitude"; not concern with GPs' *research* into cause and management of illness, but merely *attitude* towards it.

Anyway, there doesn't seem much point in even reading the whole book, since "The publisher and author assume no responsibility for errors, inaccuracies, omissions or any inconsistency herein." (Publisher's Note)

To my mind, this is a gross abrogation of responsibility - but that's another story. The sort of thing the publishers probably had in mind is this choice quote (third-hand, via Reid et al) from one of the physicians in the "South Thames area of England" surveyed for their opinions of patients with "symptoms such as fatigue, myalgias, abdominal pain, difficulty with concentration, mood lability, and sleep disturbance":

"'...most of medically unexplained symptoms are related to not wanting to go back to work, and sick benefits usually help to keep away symptoms.'"

Here we have a circular argument of dismissing "medically unexplained" symptoms as being, somehow "related to not wanting to go back to work". Manu doesn't bother to explain the correlation, but then again, he doesn't need to, since he's only quoting someone else's work, which in turn quotes someone else. And we mustn't forget the publisher's claim that "The author has exhaustively researched all available sources to ensure the accuracy and completeness of the information contained in this book."

Sure.

It is no surprise, really, that Manu doesn't appear to notice the gross contradiction (let alone consider the empirical evidence to the contrary) contained in the claim that "sick benefits usually help to keep away symptoms": as any fool knows, reliance on benefits (let alone the struggle to obtain them) has the exact opposite effect, exacerbating and amplifying symptoms.

But analysis and logic, let alone plain common sense, don't appear to be Manu's strong points here.

Then again, anyone doing a "search" on the internet, having downloaded this, will probably not need to go beyond the Introduction anyway to get the whole point of the book, and can merrily then write in a newspaper column, weekend colour supplement *or official report* that "chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, premenstrual syndrome, and Gulf War illness are common illnesses that lack demonstrable structural or biochemical abnormalities... most physicians have understood them to be mental illnesses - Dr. Peter Manu, 2004."

And therein lies the tragedy.

John Sayer

Kate's comments -

Dr.Peter Manu is a board certified internist and professor of Clinical Medicine at the Albert Einstein College of Medicine New York. He is a medical consultant for a large psychiatric hospital and thus has academic appointments in Medicine and Psychiatry. He is also a consultant for Metlife Insurance Company.

Readers may also wish to read psychologist Ellen Goudsmit's thorough review of Peter Manu's previous book: Functional Somatic Syndromes. Etiology, diagnosis and treatment. Cambridge University Press. 1998.

In the dedication of his 2004 rehash, Dr. Manu notes that "the writing of the book, as well as my struggle to decipher the complexities of functional disorders, would have been much harder without the clarity brought to this field by:

1. Psychiatrist Simon Wessely - Professor of Epidemiological and Liaison Psychiatry, King’s College Hospital, London

- Dr. Wessely has attempted to revive the archaic and psychiatrically discredited notion of neurasthenia aka "women's hysteria" the chronic fatigue.  In 1991, in his major Review in the British Medical Bulletin, Wessely cited medical comments made between 1880 and 1908 on patients with neurasthenia (which he refers to as the first chronic fatigue syndrome):

"always ailing, seldom ill;  a useless, noxious element of society; purely mental cases;  laziness, weakness of mind and supersensitiveness characterizes them all;  the terror of the busy physician"  BMB 1991:47:4:919-941

Psychiatrist Michael Sharpe, formerly of King's College, with psychiatric colleagues, Simon Wessely, Peter White, Anthony David et al, created the 1991 Oxford criteria casually stripping seventy years of biological criteria and biomedical research evidence of this severe neurological disorder ME (ICD 10 G93.3) from the "diagnostic criteria" in order to boost the theory of ME/CFS as "mass hysteria."

"British investigators have put forward an alternative, less strict, operational definition which is essentially chronic fatigue in the absence of neurological signs (but) with psychiatric symptoms as common associated features"   

Anthony S. David co-author of the 1991 Oxford criteria.
 British Medical Bulletin 1991:47:4:966-988.

"...the CFS/ME issue offers opportunity to the discipline of psychiatry as it continues to strive to maintain its clinical and research scope. Chronic fatigue syndrome can be seen as a potential Trojan horse for psychiatry...."

Couper Jeremy. "Chronic fatigue syndrome and Australian psychiatry: lessons from the UK experience." Australian and New Zealand Journal of Psychiatry 2000; 34:762-769

Wayne Katon - Professor of psychiatry - University of Washington School of Medicine
and
Research partners:
Steve Straus - NIH
Mark Demitrack MD.  Eli Lilly Pharamaceutical Company (makers of Prozac)

Hyping Manu's book are fellow colleagues:

Harold G. Koenig, MD
Editor, International Journal
of Psychiatry in Medicine;
Associate Professor of Psychiatry
and Medicine,
Duke University Medical Center

Researchers are on public record as supporting psychiatric speculation that ME/CFS are "functional somatic disorders."

History of Psychiatry and medically unexplained symtoms

"How many times can a man turn his head
and pretend that he just doesn't see?"

          Bob Dylan, "Blowin' in the Wind" *

How often does medical knowledge outrun the course of disease? Hmmm, let me re-word that. How many people have died or been chronically ill waiting on a microscope to "see" germs, for diagnostic blood tests, for the invention of MRIs and CAT scans? How many illnesses have been blamed on the patient for lack of medical knowledge?

As Dr. Malcom Hooper, Emeritus Professor of Medicinal Chemistry notes, misunderstood diseases have a long history in medicine, and ME/CFS and fibromyalgia are not the first conditions for which medical science did not have an explanation and were first claimed to be psychiatric. Multiple Sclerosis (MS) used to be called hysterical paralysis; in the 1940s Parkinsons Disease was said by prominent psychiatrists of the time to be due to the desire in the moralistic man to masturbate (the intention tremor supposedly due to a conflict between “ an aggressive drive towards action and an equally strong internal pressure to inhibit action:  this conflict results in tremor;" asthma was said to be 100% psychological and before the discovery of Helicobacter in 1973, gastric ulcers used to be ascribed to an anxious personality.

The speed with which the psychiatric establishment catches on is like watching  turtles race. Some doctors are adamant that if the words fibromylagia and chronic fatigue syndrome were to remain unspoken by both doctors and the "media" these biological illnesses would literally "poof" cease to exist. I suspect they also think that if they shout loud enough and often enough no one will notice the steadily increasing biological markers and evidence. They certainly hope you will.

Others grudgingly give ground and acknowledging that there could have been a viral trigger but, go on to enumerate that symptom severity and failure to recover are based on psychogenic problems with patients; "badly behaved" patients at that.

And is perhaps human nature, the only people who do not believe ME/CFS and fibromyalgia are severe biological illnesses are people who have never experienced anything like it.

I believe that is called self-absorbtion.

* Fibromyalgia: The Answer is 'Blowin' in the Wind
KEVIN P. WHITE, MD, PhD,
Rheumatologist and Epidemiologist,
London, Ontario, Canada.

No investigations should be performed to confirm the diagnosis

fac·ti·tious adj

contrived and insincere rather than genuine
not real or natural but artificial or invented (formal)

On January 14, 2003 a meeting at The Royal Society of Medicine entitled “Chronic fatigue syndrome and factitious illness: interface between child psychiatric and paediatric services”.

Speakers include Professor Elena Garralda (a psychiatrist and one of the authors of the 1996 Joint Royal Colleges’ report CR54 on “CFS” which in its Summary directed that:

“No investigations should be performed to confirm the diagnosis (as) revealed changes are rarely substantial”  and which dismissed ME, claiming at para 13.3  “Previous studies have counted people with ME, but these studies reflect those who seek treatment rather than those who suffer the symptoms”

Ethical question: Is it appropriate for psychiatrists with a vested interest in suppressing biomedical research and tests to advocate that there be no further biomedical testing?

Sounds to me like a good way to make sure the theory of neurasthenia and functional somatic disorders in ME/CFS remains unchallenged. What say you?

<>

per·form v

   

vt to do what is stated or required
   
   vi to function, operate, or behave in a particular way or to a
   particular standard

   vi to fulfill a promise or obligation

Roll Call: Which one of dem is the “hysterical” doctor

Determining the diffence between studies and researchers that focus on the psychogenic model of Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia, and biomedical researchers whose studies are predicated on biological disease isn't all that easy.

In the good old days doctors carried these chic little black medical bags, both for identification and in some cases protection. It was a cultural sign of their station.

Wait. I think you are confusing actual medical bags with hand bag fashionistas such as Diane Von Furstenberg. So? Well it means that not everyone sporting a doctor's bag is really a doctor. Okay. Okay. Forget the bags, we'll focus on hats. 

Ahem. In formulaic Westerns, the bad guys always wore black hats and were easy to differentiate from the good guys in white hats and not just in the good old days when everything was in black and white.

What do you mean not everyone sports a ten gallon unless they are from Texas? Oh forget it. I will never get to the point if I keep being so easily distracted. LOL.

Anyway, people are rarely so easily identified or categorized as the above examples show. The number of players in the long history of unrelated neurasthenia, ME, chronic fatigue syndrome (ME/CFS), fibromyalgia, gulf war syndrome, mutiple chemical sensitivity etc. are as thick as ticks on a hound dog.

Which reminds me of the following quote.

"Thoughts, like fleas, jump from man to man, but they don't bite everybody."

Stanislaw J. Lec Polish writer (1909 - 1966)

Separating those who believe the above disorders to be psychiatric functional somatic disorders and those who base their understanding on biomedical studies isn’t as easy as asking everyone to strip in order to count tick bites.

So for those of you who shudder at the thought of blood sucking insects…

What? Mosquitoes as vectors in epidemiology? I know they suck blood, I don’t think that’s the point here. In that case you want to discuss what? Leeches? leeches are relevant to the efficacy of various medical treatments? Well, that may be bloody likely, but the “hysterical” doctors prefer attitude adjustment. Much cleaner. Now ssshhh.

...In no particular order here is a partial list of researchers, psychiatrists and institutions who espouse the idea that these disorders are mass hysteria, psychogenic (functional somatic disorders (FSS), biopsychosocial - meaning they are perpetuated by psychogenic problems, medically unexplained physical symptoms (MUPS), and chronic multisymptom illnesses (CMI):

 

Dr. Simon Wessely - psychiatrist - King's College
Dr. Michael C. Sharpe - psychiatrist - Edinborough via KC
Dr. Matthew Hotopf - psychiatrist - King's College
Dr. Daniel J. Clauw - rheumatologist
Dr. Peter D. White - psychiatrist
Dr. Nortin Hadler - rheumatologist
Dr. Harvey Marcovitch, Consultant paediatrician
Dr. George E. Ehrlich
Dr. Anthony Cleare - Kings College, London
Steve Reid
Jon Stone
Alan Carson
Don Goldenberg
Dr. Arthur J. Barsky - psychiatrist
Dr. Jonathan F. Borus
Dr. Andrew Lloyd - epidemiologist
Dr. Peter Manu - psychiatrist
Dr. Stephen E. Straus -NIH
Dr. Ian Hickie - psychiatrist
Dr. Trudie Chalder - psychiatrist - King's College
Dr. Gijs Bleijenberg - Department of Medical Psychology, Netherlands
Dr. Karen Schmaling - El Paso,Texas
Dr. Dedra Buchwald - Seattle
Dr. Susan Abbey -psychiatrist - Toronto
Dr. Donna Greenberg - psychiatrist - Massachusetts General Hospital
Dr. Russell Viner - paediatrician - King's College
Dr. Gregory E. Simon - psychiatrist - Seattle
Dr. Judith Prins - Department of Medical Psychology, Netherlands
Dr. Jos W. M. van der Meer - psychiatrist - Leiden University

J. Wiley & Sons; The Cochrane Library; The Cochrane Review; Cochrane Depression, Anxiety and Neurosis Group (London, UK); The Institute of Psychiary Kings College in London. Home of evidence-based medicine.

Massachusetts General Hospital

es·pouse vt

   to adopt or support something as a belief or cause

FYI: Psychiatrists are medical doctors (MD) who have taken additional coursework in the field of psychiatry.

Funding: What do CFS/ME and fibromyalgia have in common with psoriasis?

"Concentrate on what cannot lie. The evidence..." -- Gil Grissom 

Wow, I just read that the 2005 budget for the National Health Institute is to be doubled this year. Hazzzzaaaaaaaaaaaa! Partayyyyyy Tahhhmmm! Break out the cheese whiz, ewww green stuff, well hey, we’ll call it blue cheese and no one will know the difference…

What’s that you say? We can’t party yet? What kind of BS is this?  But, I looove a party. Pardon moi, could you please move? You are in the way of my preparations…

Let’s see, I’ll splurge and include a six-pack of Corona if someone else can afford the limes…

What? What do you mean this is only a two percent increase for NIH and that CDC funding may be cut for a second year in a row. Oh dear me.

Yeah, but, hey an increase is an increase. Thank goodness I have the party shuffle on my iTunes fully loaded, now where are those speakers? I swear I would lose my head if it weren’t screwed on. Maybe I should clear the floor for dancing. Oh yeah, forgot, dancing is a delicious memory from the past. Sigh. But, hey we can always do chair dancing for a minute or so.

We interrupt this silliness with funding reality

The National Institutes of Health (NIH) is the nation's medical research agency  according to director Elias A. Zerhouni,

Mr. Zerhouni, also states that as a leader of medical research, NIH aims to make discoveries that will help prevent, detect and treat disease and disability.

What does this mean for an estimated 800,000 plus Americans with Chronic Fatigue Syndrome (CFS/ME), as well as an estimated three to six million people with fibromyalgia, both disabling diseases?

Not much. Spit in the ocean give or take a dollar.

According to the CDC, the annual loss in productivity in the US is $9 billion and the average annual loss in family income due to CFS is $20,000. Patients are often as severely or more disabled than those with heart failure or COPD yet only a mere $131 million has been spent on “research” funding over the past 13 years. This figure includes not only the NIH budget, but the Centers for Disease Control and Prevention (CDC) budget as well.

And there are no good times ahead.

2006

The newly released Bush Administration’s 2006 budget contains a $28.8 billion budget request for the National Institutes of Health (NIH) in fiscal year (FY) 2006, a virtually flat 0.7% increase of $196 million over the current year's funding and far below the projected biomedical inflation rate of 3.5%.

If enacted, it would be the first time since 1964 that NIH received an annual increase of less than 1%. And most NIH institutes and centers wlll receive increases of less than 1%.

As Eric Umansky of MSN Slate also notes, “And that good-for-nuthin' bureaucracy known as the Centers for Disease Control and Prevention would be trimmed by about 12 percent.”

This represents a $555 million reduction in funding for Centers for Disease Control and Prevention (CDC).

Back to 2005

Crowded into the lowest funding tier of 110 NIH funded diseases, $6 million in research funds is earmarked for CFS/ME and fibromyalgia comes in at with an estimated budget of $10 million. Read on to find out why it will be even less than that.
 

CFS/ME and fibromyalgia research funds are also flat-lined along with ten other disease research areas that will also receive no additional funding for 2005.

Of the twelve, only three disorders receive less funding than CFS/ME and only psoriasis, a genetic immune-mediated chronic illness, affects as many people as CFS and fibromyalgia. Also noted is that ten of the 12 flat-lined research areas affect primarily infants and females.

In contrast, other brain disorders will receive $5023 million, other autoimmune disorders $616 million, and $398 million for other forms of arthritis.

Unfortunately, until the United States government adopts the ICD 10 G93.3 classification, correctly categorizing CFS/ME as a brain disorder, we get no
slice of those pies.

Solid biomedical research also shows that there is a autoimmune component to these biological disorders, but, we're not getting any of that pie either. And
without adequate biomedical funding autoimmune connections cannot be researched further without funds. It's called a Catch -22. That's politics people.

Wait, it gets worse. We’re double booked and bloated.

The fine print: Note that this table includes estimates for research in many diseases/conditions/research areas which are also included under other disease/conditions/research areas, because the research contributes to multiple fields of research.  The table is therefore not additive.

Translation: CDC studies overlap with NIH studies so the aggregate is less spending not more.

The NIH’s demonstrated proclivity for unethical activity continues to impact CFS/ME. The most recent problem stems from 12 misclassified studies unconnected to CFS/ME siphoning off $542 million. Which amounts to 22 percent of funding in the five years including 2003.

During that five year time frame, less than 15% of studies were for treatment - a grand total of nine with only three studies of CFS in adolescents – out of 76 studies funded.  Nearly $8.3 million or 26.3 percent was for the Cooperative Research Centers program, which was discontinued by The National Institute of Allergy and Infectious Diseases (NIAID) in 2002.

Does this mean we get a refund?

It should be noted that the 2006 National Institute of Allergy and Infectious Diseases (NIAID), which funds most of NIH's bioterrorism-related research, is once again the agency's biggest gainer at $4.5 billion, a 1.8% increase of $57 million.

And we wonder why biomedical researchers are passing the hat among patients to obtain funding?

As always, if I have misstated any facts please let me know. I kind of had to use both my fingers and toes on this one.  Gotta love that adult-onset acalculia.

Sources:

Additional commentary of the impact on health care, including Medicaid can be found at Slate.

T. Agres, "US Congress passes FY05 budgets," The Scientist, November 24, 2004.

"Budgeting for Health," The Scientist, 43 March 29, 2004.

"NIH Conflict of Interest Information and Resources" (http://www.nih.gov/about/ethics_COI.htm) "Federal Register" (http://www.archives.gov/federal_register/index.html)

"Analysis of NIH-Funded Research on Chronic Fatigue Syndrome Shows a Trend of Decreased Support: Fiscal Years 1999-2003."

NIH Estimates of Funding for Various Diseases, Conditions, Research Areas: Updated January 18, 2005

Walker skewers psychiatric cabal in "Skewed"

I first heard about this book through the grapevine in 2003 and now that it is more widely available, I am absolutely gleeful.

John Sayer, a fellow traveler from the other side of the pond, has graciously given his permission for me to post his take on "Skewed - Psychiatric hegemony and the manufacture of mental illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome" (Slingshot Publications, London, ISBN 0-9519646-4-X)

John sezs: "If you've ever wondered why M.E. (known as CFS on the U.S. side of the pond) is incessantly touted by certain parties as a "mood disorder," the explanation is contained within this thoroughly researched and documented book by Martin J Walker.

The tangled web of big business and those who perpetuate the 'psychological' myth is well and truly exposed. You will be shocked, but probably not the least bit surprised.

Essential reading for sufferers, carers, advocates and the medical profession alike."

Me again: For those of you tired of the psychiatric debate and wondering how what happens in the rest of the world, including the UK insistence that neurological CFS is nothing more than "mass hysteria," impacts us here in the good ol' U S of A, this well-documented book is a good place to start.

Martin's book is more than the documentation of a specific neurological disorder, ME, subsumed by psychiatrists into a larger, undifferentiated psychiatric mass including chronic fatigue syndrome, fibromyalgia, as well as Gulf War Syndrome where the environmental toxin connection is pretty well documented. It is a history of how a group of psychiatrists have created a cabal with insurance and industry to create the myth that illness, some of which may have environmental triggers, is shrugged off as psychiatric illness by deliberately using the stigma of psychiatric illness and the imaginary to quell the patient voice. As Walker notes,  this theory is used to dismiss anybody who has an illness which isn’t easily identifiable, doesn’t have a characteristic symptomatology and doesn’t have any clear treatment.

I'm not big on conspiracy theories but I'm too old and skeptical not to recognize the well-documented connection between big money and unethical action.

Still not sure it applies to you? The following groups are deeply impacted:

Anyone who has received a medical diagnosis based on the research criteria from the 1994 Fukada study done throught the auspices of the United States Center for Disease Control (CDC) is impacted.

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Anyone who has ever had a medical doctor tell them that this neurological disorder is "all in their head," which it is DUH, but that's not what the doctor meant, has been impacted.

Anyone who has the additional heartbreak of having a child with CFS and been told that either their child is just "lazy" or "school phobia," or that the parent themselves are trying to make the child believe  that she, and sometimes he, is actually physically sick: for their own personal gratification is impacted.

In an interview with Louise Mclean, Walker states: "There are examples ...in another of my books, Skewed, regarding ME and Chronic Fatigue Syndrome... in which... Cases are described where psychiatrists put children with ME in closed mental hospital facilities. In some cases the parents are arrested and in one case imprisoned because they were said to be inflicting false illness beliefs on their children. Some of the mothers were accused of having Munchausen’s Syndrome by Proxy.It appears that we are entering an area where abuse becomes defined by doctors, not simply in criminal terms or in terms of violence or even mental cruelty but on the grounds that the parent disagrees with orthodox medicine...

...A moratorium has been called on diagnostic testing so that there is going to be no further research, in Britain anyway, into what actually caused ME or what ME is ...

...SKEWED deals with ME, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity and Gulf War Syndrome. It uses them all as examples of how the psychiatric argument is used to cloak any research into organic aetiology."

LOL; as some vaguely remember adult used to tell me when I was a kid, "Shut your mouth sunshine, you're letting all the flies in."

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According to John, "Skewed" is available from Cygnus Books UK. (Tel. 0845-456-1577). Skewed may also be purchased from the following address:

Slingshot Publications B.M. Box 8314
London, WCIN 3XX England

12.0 Pounds U.K.
20.0 Dollars U.S.
18.0 Pounds Australian
+ shipping and handling…

A few other reviews of note:
Review of Skewed including insightful foreward by Per Dalen, MD, PhD, Associate Professor of Psychiatry, University of Gothenburg, Sweden;

Book review: 'Skewed' By Martin Walker: "Retrospect has a way of making past blunders look foolish..."

ca·bal n
1.    a group of conspirators or plotters, particularly one formed for political purposes
2.    a secret plot or conspiracy, especially a political one

vi
to form a group and plot together against somebody or something

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