What the Heck are They Talking About: Neurological CFS

"I used to be able to think..."

A brain just like mine:

Whether the assault is by car accident or viral assault - the result is brain damage: sometimes permanent. There is substantial organic research in this area, as well as the role of infectious triggers on the central nervous system and immune system specifically. The biological role of entroviruses is also substantial and connected to biomedical research clearly connecting the neurological disorder of ME/CFS (ICD 10 G93.3) with these viral triggers.

Obstacles to further research:  lack of funding, insurance politics and the repetition of unproven and tangential psychiatric speculation regarding the biopsychosocial role in "fatigue."

"He has suffered brain damage, caused by an undetermined virus that targeted his brain, but he clearly remembers his old way of thinking. He has written a book called In the Shadow of Memory, about the damage done to his brain and the process of rebuilding his life.

Skloot reads from In The Shadow of Memory: "I used to be able to think," the book begins. Now, his memory and abstract reasoning abilities are extremely diminished. He finds himself doing things like saying "blood tower" when he means "rush hour" or putting coffee beans in the carafe instead of the filter basket.

He continues reading, "Sometimes I see my brain as a scalded pudding, with fluky dark spots here and there through its dense layers, and small scoops missing. Sometimes I see it as an eviscerated old TV console, wires all disconnected and misconnected, tubes blown, dust in the crevices."

To make any sense at all, Skloot says he needs to avoid all distractions. During the interview, he has his eyes closed so he doesn't see the studio engineer, his wife, or his open book.

This need to limit outside stimuli is one of the reasons he moved from downtown Portland to the country -- he needed to be in a place where things are slow.

Skloot says his neurological condition is not all bad. It has given him a crash course in the essentials of life -- because he has no choice, he has learned to live in the moment and seek harmony, rather than mastery.

His writing process, too, has completely changed -- it took him over eight years to write the book -- but he finds he has become looser and more open to discovery, and, in many ways, he appreciates the slower pace of his life."

Floyd Skloot

Marit Haahr
The Infinite Mind: How We Think
Week of September 27, 2004

In previously published works, Floyd Skloot refers to his diagnosis of ME/CFS, however, in The Shadow of Memroy, he simply eliminated "fatigue aka the 'F' word" from the discussion. By simply reframing this neuroimmune disorder using more specific and biomedically accurate terms, gained a much wider audience garnering respect instead of curt dismissal.

See my post on using the "F" word.

Joe: on the growth of spirit

"What would I give to be rid of these horrid symptoms? TO wake up and feel normal....to have enough energy to work 8 hours, to be able to go surfing and not feel wasted. To go just a couple hours each day and not be exhausted and medicated......I'd give a lot; thats for sure.....20 years of my life? one of my limbs? I hate the fatigue in one sense because it has taken so much; I love it in another sense because the only way the spirit grows is through trial and struggle. Obviously I am feeling similar to the last entry. There are minor changes; slightly worse memory problems and feeling zonked out; but with an adjustment of medication some of the brain problems are improved, including speaking/listening and concentration from taking half-dose klonopin during the day."

Joe Tillotson - Journal entry February 2004  Previously highly athletic: medically diagnosed at age 13 with fibromyalgia more than half a life-time ago for him.

Kate's comment: As always, I have been blessed with the permission of yet another person with this DD, willing to share part of what living with this DD is like for them.

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."

The Flat Earth Society

There is a group of psychiatrists who speculate that ME/CFS is a psychiatric disorder perpetuated by dysfunctional thinking.

This is in direct contrast to more than 50 years of biomedical evidence showing ME/CFS is an organic neurological disorder. Indeed the World Health Organization classifies ME/CFS as a neurological disorder specifically barring its classification under mental health disorders.

Watching the debate between psychologizers and sufferers is like stepping back in time and having a window seat on history that allows you to view the furor in the Flat Earth Society meetings as each new bit of Round Earth evidence is introduced.

It is amazing to watch the fervor with which psychologizers defend a doomed concept. Every person who has experienced the reality of CFS/ME knows the debate is moot, the outcome is certain.

The psychologizers continued resistance to accept the reality of a phenomenon whose existence doesn't depend on their acceptance, says more about the mental state of psychologizers than any of their pronouncements or verdicts say about the mental state of those who are just relating their experience and observations of the illness.

Eratosthenes calculated the circumference of the Earth in 230 BC by measuring the shadows in a well in Syene during the summer solstice.

Over 1700 years later some people were still wondering if Columbus was going to sail off the edge of a flat Earth.

Some people can be convinced by a single piece of evidence that confirms a theory because the evidence can have no other explanation.

Others cling to the status quo by refusing to consider any evidence that endangers their beliefs.

As the pointless debate continues and more evidence accumulates, the question to psychologizers will be the same as it was for the Flat Earthers.

"How much more proof do you need?"

-Erik

Kate's note: Multiple sclerosis, ulcers, Parkinson's Disease, diabetes, migraines, and polio, as well as other organic disorders have also been listed by psychiatrists who speculated that these organic disorders were actually psychiatric disorders until the biomedical evidence was overwhelmingly accepted.

To prevent this from happening in the case of this severe organic neurological disorder, the current crop of psychiatrists are insisting that no further biomedical research in should be done regarding ME/CFS.

In the UK and the Netherlands it is nearly impossible to obtain biomedical funding as a result of psychiatric lobbying. In the United States, this severe organic neurological disorder ranks 107 out of 110 disease areas funded by the US government.

We are talking about a difference of millions upon millions of dollars in biomedical research.

The funding level is illogical in  light of CDC studies done by Dr. William C. Reeves, Director of the Viral Exanthems and Herpesvirus Branch of the CDC's National Center for Infectious Disease showing that the rate of chronic fatigue syndrome is ``25 times the rate of AIDS among women... and is considerably higher than female lung cancer... breast cancer... and hypertension.''

In a CDC study on the economic impact of ME/CFS, Dr. William Reeves and colleagues found the annual total value of lost productivity in the United States is $9.1 billion.

The annual total value of lost productivity in the United States was $9.1 billion, which represents about $20,000 per person with ME/CFS or approximately one-half of the household and labor force productivity of the average person with this syndrome. They also found  a 37% decline in household productivity and a 54% reduction in labor force productivity among people with ME/CFS.

Reeves and colleagues concluded that lost productivity due to CFS is substantial both on an individual basis and relative to national estimates for other major illnesses.

According to the 2004 study, CFS results in a national productivity loss comparable to such losses from diseases of the digestive, immune and nervous systems, and from skin disorders. The extent of the burden indicates that continued research to determine the cause and potential therapies for CFS could provide substantial benefit both for individual patients and for the nation.