Saturday, December 15, 2007

Learned incompetence

Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. 

                                                   -- Byron Hyde, MD 2003

Dr. Hyde's comments reflect the experience of many patients: CFS is a convenient label to avoid having to figure out what's really wrong with the patient.  As a support group leader, I see too many patients who've received the CFS label but have no idea what we're talking about when we start discussing the common neurologic symptoms of CFS; obviously, they've been misdiagnosed.  (See Jodi's article, posted yesterday, containing numerous other possible diagnoses that might explain the symptoms.) 

Dr. Bell noted in his book that calling a fatigued patient "depressed" satisfied the need to put a diagnosis in the records and obviated the necessity of doing research to find out the true cause of their symptoms.  It didn't help the patient, but it got the doctor off the hook.

As Dr. Bell calls it, Game Show Medicine, as if the point were to be the first person to buzz in with a diagnosis, any diagnosis, instead of getting it right.  Part of that is the fault of HMOs allowing only 7 minutes for a doctor appointment; part of it is that a lot of doctors were always the brightest kid in their class and it's in their nature to be the first to answer a question.

Dr. Elizabeth Dowsett observes "[ME/CFS researchers] should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously!"  Coincidentally (or maybe not) it was in 1988 when CDC caused ME to vanish and replaced it with the notion of CFS.  It wasn't politic to have another disabling viral epidemic so close on the heels of AIDS, so ME (and its apparent viral connections to polio) simply disappeared, and silly little CFS took its place, along with false assertions that there was no virus, no contagion, it spread via mass hysteria (which doesn't explain how people who'd never heard of the Incline Village epidemic were describing exactly the same symptoms).

As my fellow activist Steve frequently points out, because no one has been working on a vaccine, the CFS virus could attack anyone, anywhere.  YOU could be next.

In fact, it's my experience that karma has a warped sense of humor; the thing I always hated most was being stuck in bed, and of all the disabilities that I could've gotten (e.g., blindness, deafness, losing a hand), the one I wound up with was the one I couldn't just take in stride, I had to take to my bed for weeks on end because I was too weak to stand.  Since karma does have such a warped sense of humor, I wouldn't be surprised if some of the loudest CFS detractors and verbal abusers eventually wind up with the disease they made fun of.  (It should be noted that the 1934 Los Angeles epidemic, the 1955 Royal Free Hospital epidemic, and the 1974 Mercy San Juan Hospital epidemic all affected numerous doctors and nurses; a surefire way to convince the medical community that the disease is real is to let them see their respected colleagues succumb to it.) 

The problems with having to hire work done

For months, I've been looking for the scrub brush that belongs in the drawer in the bathroom.  I have, in fact, torn apart every drawer and cupboard in that room without finding it.

Today I found it in the kitchen.  Since the only thing I ever use it for is the bathtub, apparently someone else used it and left it where it doesn't belong instead of saying "hey, I got this from the bathroom, I will at least return it to that room even if I don't remember exactly where in that room I got it from."

This happens a lot. 

I have a good-sized collection of tools in the basement.  My handyman will take the time to go down to rummage for something he needs, rather than going home to get his, but when he's done with it, he can't be bothered to go back to the basement to put it away.  He just sets it down wherever he was using it.  As a result, I've found what used to be expensive tools in pristine condition sitting on the porch, rusting away.  He doesn't even make the effort to carry it the extra few feet to put it in the house where it won't get wet ... just assumes that I will see that he left it among the other clutter that has accumulated over years of hired people being asked to carry things to the basement and deciding that it was easier to toss it out on the porch.  If they weren't scheduled to come back anyway, what difference did it make if I discovered the deception after they were gone?  They got paid regardless of whether they did a good job or a bad job.

While it might seem to some people that I'm fortunate to have an excuse not to do my own housework, these are precisely the reasons why I hate having to hire someone else: work is not done to my standards, and things don't get put where they belong.  With the expensive stuff, I'm never sure if it's been stolen or simply put where I can't find it because it's not where it belongs (or even where I'd think of looking for it).  I would give my eyeteeth for someone who understands that my kitchen is organized my way, and she shouldn't put things where she keeps them in her kitchen ... putting like with like, not "this is where I keep my stuff, so I'm going to mix pots and canned goods rather than ask where you keep them".  (I've had people come in and rearrange my kitchen for their convenience, because they can't understand that I have to organize things differently because of my health problems.  They're convinced their way is the best way and any other way is just plain wrong.)

Having my expensive things properly taken care of and being able to find what I already own instead of constantly buying replacements are two of the reasons I have been badgering doctors for 7+ years to give me the medications that I know will get me on the road back to good health. 

Unfortunately, since the death of my beloved Dr. Dawn shortly after realizing this was not the flu, it was relapse, I've been dealing with male doctors who just don't get it that not all women are like their wives who happily let someone else do the cleaning; some of us prefer to do it ourselves so that it's done to our higher standards.  Some of them thought that my saying "I can't do the housework" was simply a request for them to sign a form to get me a free government-paid cleaner because I was too lazy to clean and too cheap to pay.

(In point of fact, In-Home Support Services -- government-paid cleaners -- are available ONLY if you are over 65 or are receiving Disability benefits; I am neither.  It's not as simple as asking a doctor to sign a form and you magically get free help.)

Although certain people would like you to believe that I don't want to pay for housecleaning, the simple truth is that I've shelled out thousands of dollars for cleaning services since spring 2000.  The agency girls show up with a brochure informing me that the worker's comp insurance will not allow them to do the following chores -- which are the ones I need the help with.  The independent ones quickly prove that they're not working for an agency because they couldn't pass the test-clean.  I have to turn to friends to do the things I can't and the agency girls won't; it's not a matter of being willing to pay, it's a matter of finding someone willing to do what needs doing.  I always compensate people who help me, whether with a meal, cash, or free room and board.  Unfortunately, even friends who are being compensated can't be relied on to do the job right.

There's a reason they say "if you want something done right, do it yourself".  I only wish I could!

Friday, December 14, 2007

Potential Drugs for Improving CFS

Potential Drugs for Improving Chronic Fatigue Syndrome

Journal: J Neuropsychiatry Clin Neurosci 19:472, November 2007
doi: 10.1176/appi.neuropsych.19.4.472

Authors: Sayed Shahabuddin Hoseini, Faculty of Medicine, Medical
Sciences/Tehran University, Tehran, Iran and Shahriar Gharibzadeh,

Affiliation: Neuromuscular Systems Laboratory, Faculty of Biomedical
Engineering, Amirkabir University of Technology, Tehran, Iran

NLM Citation: PMID: 18070856

Chronic fatigue syndrome (CFS) is the current name for a disorder
Characterized by debilitating fatigue and several associated
physical, constitutional, and neuropsychological complaints. Specific
symptoms reported by CFS patients are fatigue, difficult
concentration, headache, sore throat, tender lymph node, muscle ache,
joint ache, feverishness, and allergies.

There are several hypotheses about its etiology, including
postinfectious, immunological, neuroendocrine, neurological, and
psychological ones. A CNS dysfunction brought about by abnormal
cytokine release in response to antigenic challenge has been
described.1 Substantial evidences show a pivotal role for
proinflammatory Cytokines (e.g., interleukin1, interleukin6, and
tumor necrosis factor-{alpha}) in induction of CNS mediated responses
such as fever, somnolence, and sickness behavior in acute infections.
A significant elevation in serum levels of interleukin-1, and tumor
necrosis factor-{alpha} in the patient with chronic fatigue syndrome
have been reported.2

Recently, biological agents that bind and neutralize the tumor
necrosis factor have become available:

1) Etanercept, a tumor necrosis factor type 2 receptor fused to IgG1,
is assessed to be effective in psoriasis.3

2) Infliximab, a chimeric mouse-human monoclonal antibody to the
tumor necrosis factor, has shown successful trials for treating
inflammatory bowel disease.

3) Adalimumab, a fully human antibody to the tumor necrosis factor,
is used in cutaneous sarcoidosis.

4) Thalidomide has immunomodulatory and anti-inflammatory effects
including inhibition of synthesis of the tumor necrosis factor
{alpha}. It is effective for treating Behçets syndrome.4

We suggest that these drugs, which are approved by FDA for some of
the aforementioned diseases, can be usefulin treating patients with
chronic fatigue syndrome. Even modest improvement in symptoms can
make an important difference in the patient's degree of
self-sufficiency and ability to appreciate life's pleasures.
5 Surely,
clinical trials should be done to assess the efficacy versus side
effects of these drugs on affected patients.


    1. Mihrshahi R, Beirman R: Etiology and pathogenesis of chronic
fatigue syndrome: a review. N Z Med J 2005; 118:U1780
    2. Tomoda A, Joudoi T, Rabab el-M, et al: Cytokine production and
modulation: comparison of patients with chronic fatigue syndrome and
normal controls. Psychiatry Res 2005; 134:101104[CrossRef][Medline]
    3. Bos JD, de Korte J: Effects of etanercept on quality of life,
fatigue, and depression in psoriasis. Lancet 2006; 367:67[CrossRef][Medline]
    4. Sayarlioglu M, Kotan MC, Topcu N, et al: Treatment of
recurrent perforating intestinal ulcers with thalidomide in Behcet's
disease. Ann Pharmacother 2004; 38:808811.[Abstract/Free Full Text]
    5. Straus SE: Chronic fatigue syndrome, in Harrison's Textbook of
Internal Medicine, 16th ed. New York, McGraw-Hill, 2005, pp 2545-2547

© 2007 American Psychiatric Publishing, Inc.

* * *

For some mildly-affected patients, as little as 10% improvement is enough to get them back to work.  On the other end of the spectrum, a 10% gain might allow a bedridden patient to brush her own teeth and feed herself instead of being totally reliant on others.

Getting the right pills stopped me from deteriorating further.  That alone was a big help; I was getting so bad that I was making calls to nursing homes.  After finding something that helped me sleep more than 2 hours at a time, I was able to start doing some things I liked, instead of waking up every morning and going through a long list of "nope, not up to doing that" and finally winding up with the only option being my least favorite thing, to once again lie in bed watching TV all day.

A childhood friend commented a few months ago that she was starting to see the old me again.  Some of the old sparkle was back because a couple days that week, I had been able to do what I really wanted to do, instead of settling for the only thing within my physical limitations and spending the day resenting this damn disease and incompetent doctors for sentencing me to a life without those little pleasures.  After years of being denied the ability to leave home except for absolute essentials, I had finally been able to go out and do something enjoyable instead of just grocery/pharmacy/doctor.  I still can't manage an excursion every day, but at least I've improved enough to occasionally go out to meet people, attend a free concert at the library, etc.

And although I still can't do a complete housecleaning by myself, I'm no longer having to set aside a full week to do a single load of laundry; on a really good day, I can manage start-to-finish in one day, though mostly it's a two-day project. 

CFS MISdiagnosis


'Where to after a CFS (mis)diagnosis' is the first paper I've created - not for people with M.E. - but instead for everyone (mis)diagnosed with CFS who does *not* have M.E.

(This paper is reproduced in full below.)

I am primarily a M.E. advocate, but for years I've gotten almost as many emails from people misdiagnosed with 'CFS' who don't have M.E. as I do people who do have M.E., and they're often just as desperate for help and have just as sad and tragic stories to tell. This paper is an attempt to help all those people misdiagnosed with 'CFS' who don't have M.E. I wrote it so that I would have something to send to these people that might be helpful (and that I don't have to type from scratch each time).

I hope this is to be the first of a series of papers aimed NOT at people with M.E. but at those patients who have been lumped into a 'CFS' misdiagnosis who have other illnesses for which they do not yet have an accurate diagnosis, and who are also harmed immeasurably by the creation of the fictional disease category of 'CFS' and so on.

Needless suffering and death is needless suffering and death. Enough said.

Please repost this paper as widely as possible.


Where to after a CFS (mis)diagnosis?

By Jodi Bassett December 2007

The paper The misdiagnosis of CFS explained why the fact that a person qualifies for a diagnosis of Oxford Chronic Fatigue Syndrome (CFS), Fukuda (CDC) CFS, or either of the Australian CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named 'CFS.' In other words, why a diagnosis of CFS - based on these or any of the other CFS definitions - can only ever be a misdiagnosis.

So where does that leave you if you have been misdiagnosed with CFS, or you have diagnosed yourself with CFS? What should you do if CFS is the only diagnosis you have?

It is far easier said than done, but what your number one priority needs to be is getting a correct diagnosis. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for improved quality of life or recovery - including YOU - and this process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won.

So wheredo I start?

Before you can get a new diagnosis, you must first be willing to let go of your 'CFS' misdiagnosis. This is easy for some, but understandably somewhat harder for others who have become deeply involved in the CFS community (perhaps even for many years or decades) or who have had to fight or work very hard for a long time just to get a CFS (mis)diagnosis. It might even feel better (or less scary) to cling to this wrong diagnosis, than to have no diagnosis at all for a period of time.

This is understandable, but it is truly NOT in your long-term best interests (despite popular opinion). You deserve better than to be thrown into the 'CFS' wastebasket and left there without any real appropriate medical support or help, and subject to all sorts of abuse, inappropriate interventions and unfounded accusations of malingering.

Make no mistake, there really is no distinct disease called 'CFS.' There is no disease that is defined by prolonged fatigue, is extremely variable from one case to the next, is very 'mysterious' and 'medically unexplained' and that can be caused by any number of different viral or bacterial infections, stress, trauma, chemical exposure or vaccinations (or numerous other things) and which first appeared in the 1980s. The vague and hard to diagnose fatiguing illness described by the various 'CFS' definitions, a large body of flawed 'CFS' research and many different 'CFS' websites, books and 'advocacy' groups simply doesn't exist as a discrete entity.

The bogus disease category of 'CFS' is made up of people with all sorts of different and unrelated conditions, both psychological and non- psychological, that have been unscientifically lumped together due to the vague and inclusive 'CFS' diagnostic criteria. Despite the fact that the new name and definition of CFS were created in a response to an outbreak of what was unmistakably M.E., this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process which did not, and could not exist (Hooper et al. 2001, [Online]) (Dowsett n.d.a, [Online]) (Hyde 2007, [Online]). As Dr Byron Hyde MD explains:

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis/glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes (2006, [Online]).

This is why being diagnosed with any of the definitions of CFS is not a meaningful or useful diagnosis and why a diagnosis of CFS should never be accepted - by doctor or by patient - as an end point of the process of diagnosis. Each of the patient groups involved must be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group. People with M.E. must be diagnosed with M.E. and treated for M.E. Patients with depression must be diagnosed with depression and treated for depression. Patients with Fibromyalgia must be diagnosed with and treated for Fibromyalgia. Patients with cancer should be treated for cancer, and so on. Lumping these disparate patient groups together under a vague and meaningless category of 'fatiguing illnesses' or 'CFS' only hinders each of the patient groups involved in their battle to regain their health (Dowsett 2001b. [Online]) (Hooper 2006, [Online]) (Hyde 2003, [Online]).

What a diagnosis of 'CFS' actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease; the patient has:

a. Missed cardiac disease,

b. Missed malignancy,

c. Missed vascular disease,

d. Missed brain lesion either of a vascular or space occupying lesion,

e. Missed test positive rheumatologic disease,

f. Missed test negative rheumatologic disease,

g. Missed endocrine disease,

h. Missed physiological disease,

i. Missed genetic disease,

j. Missed chronic infectious disease,

k. Missed pharmacological or immunization induced disease,

l. Missed social disease,

m. Missed drug use disease or habituation,

n. Missed dietary dysfunction diseases,

o. Missed psychiatric disease. (Hyde 2006, [Online])

Some of the illnesses commonly misdiagnosed as 'CFS' (or even as CFS/ME, ME/CFS, CFIDS or M.E. depending on the physician) include:

a. Various post-viral fatigue states/post-viral fatigue syndromes (eg. following glandular fever/mononucleosis, hepatitis, Q fever, flu, measles, chickenpox, herpes and many other infections)

b. Fibromyalgia

c. Candida

d. Athlete over-training syndrome

e. 'Burnout'

f. Multiple chemical sensitivity syndrome (MCSS)

g. Multiple Sclerosis

h. Thyroid illness

i. Adrenal insufficiency

j. Localised and metastatic malignancies

k. Brain tumours, including astrocytomas and gliomas

l. Transverse Myelitis

m. Myopathic illnesses including: myasthenia gravis, mitochondrial myopathies, post-infectious polymyositis

n. Vitamin B12 deficiency disorders: pernicious anaemia, intentional dietary deprivation, intestinal disease

o. Rheumatoid illness or lupus (SLE)

p. Sarcoma

q. Renal or liver disease

r. Infectious illnesses including: Toxoplasmosis, AIDS, Lyme disease (Borrelia burgdorferi), Tuberculosis and Brucellosis

s. Various psychiatric and social psychiatric states including: anxiety neurosis, uncomplicated endogenous or reactive depression, clinical depression, psychopathic personality disorder, post-traumatic stress disorder (PTSD), Schizophrenia and other psychiatric disease (Ramsay 1986, [Online]) (Hyde 1992, p 22) (Dowsett n.d.a, [Online]) (Hooper et al. 2001, [Online]) (Hyde 2003, [Online]) (Hyde 2006, [Online])

This is of course not a comprehensive list. It should also be remembered that although none of the CFS definitions define M.E., the majority of M.E. patients will unfortunately be given a CFS misdiagnosis by default (due to the ignorance surrounding M.E., and the confusion between M.E. and 'CFS'). Therefore the possibility that a patient misdiagnosed with CFS has authentic Myalgic Encephalomyelitis should also be investigated, along with these myriad other possibilities. (See Testing for Myalgic Encephalomyelitis for more information).

What is the good news and the bad news about trying again to get an accurate diagnosis?

Learning that you don't actually have CFS (because there is no such disease/s as 'CFS') is good and bad news. It's good because you might be about to finally get a correct diagnosis, and the correct treatment AND the enormous (or at least significant) improvement in your condition which comes with that or you might even be about to get a CURE for your illness. These are all real possibilities.

The bad news is that getting a correct diagnosis can be difficult, and this task may well feel even more overwhelming when you thought you'd already dealt with the issue of diagnosis once and for all. It can be really hard to find a good doctor that is willing to carefully listen to you and to examine you and do what it takes to find out what is really wrong with you, unfortunately (as many of you will know only too well).

But the potential for good really does outweigh the bad here. The other good news about rejecting your 'CFS' misdiagnosis is that you'll also be able to leave behind all the propaganda, psychobabble and mistreatment that is so inextricably linked with 'CFS.' All the nonsense about malingering, or about 'CFS' being somatisation or being able to be cured by 'positive thinking' or exercise or simple supplements, the false accusations of psychological or behavioural illness, and all the claims that there is no proof that you are ill, or that you are supposedly 'enjoying the sick role.' You'll be able to leave behind forever the lack of respect, ridicule, bad treatment and abuse that comes with a 'CFS' misdiagnosis - something that can only be positive, in many different ways.

(To clarify, even that percentage of you that do actually have a serious psychological condition misdiagnosed as 'CFS' do not deserve to be subjected to the sort of mistreatment and abuse commonly thrown at people with 'CFS,' of course. Nobody does. People with any disabling illness deserve to be treated humanely and based on the facts - and not treated unfairly or blamed for an illness that is not in any way under their control. Serious psychiatric illnesses are every bit as biological as multiple sclerosis or cancer; they can't be cured by mere positive thinking no matter how hard you try, and of course people with these conditions deserve at least as much respect and medical help as anyone else.

People with a 'CFS' diagnosis are NOT just mistakenly treated as if they had a psychological illness however; that is not what is happening here. It is far worse than that. They're treated as if they were deviants, as if they were beneath contempt and not worthy of even basic respect or consideration or medical care, or even any level of kindness or compassion. People with a 'CFS' misdiagnosis are often persecuted and vilified, discriminated against and lied about. and their physical suffering is very often ridiculed, trivialised and made fun of. like no other patient group I'm aware of. The level of abuse ands neglect is sometimes so high that it has actually resulted in a number of deaths. (This high level of potentially life-destroying or fatal abuse seems to be on the increase; see What is M.E.? for more information.) It is not in the best interest of any of us to stay in this 'CFS' nightmare voluntarily, which is exactly what so many of us are doing. Any diagnosis, so long as it is accurate, is far better than keeping a 'CFS' misdiagnosis. Mental illnesses are just illnesses like any other. What is important is that we get a correct diagnosis and the appropriate treatment, whatever that may be.)

What other reasons are there to reject a CFS misdiagnosis?

Without trying to scare you unnecessarily, some of you will have very serious and life-threatening conditions causing your illness. Many serious illnesses, including various cancers, cause significant fatigue and are commonly misdiagnosed as 'CFS.' Every month you delay getting diagnosed and treated could really make an enormous difference to your long term health, or even to your survival. How quickly you reject your CFS misdiagnosis could literally be a matter of life and death for you. People have actually DIED because they had cancer and got no treatment for it because they were absolutely certain that they had a classic case of 'CFS' for example. Such misdiagnoses are not uncommon. This is not scaremongering; it's a fact, unfortunately.

Many of you will also have conditions that are very negatively affecting your quality of life - but that may be very easily treated once you've been correctly diagnosed. Many people who have had vitamin deficiencies or dietary issues that were causing their symptoms that once diagnosed and treated completely resolved (or at least greatly improved) their illness. What an absolute waste for all those people out there who have something that is very treatable but who don't get this treatment because of their 'CFS' misdiagnosis. Many of you may well be suffering needlessly, perhaps even for many long months or years.

There will also be some of you in-between these two extremes. You may not get a curewith your correct diagnosis and it may not be exactly a matter of life and death, but you may well find there are treatments out there for your condition - once it is correctly diagnosed - which can significantly improve your quality of life. (For example; antibiotics for sufferers of Lyme disease, and certain drugs developed to treat the symptoms of MS.) What all this means is that it is not just vital that you get rid of your 'CFS' misdiagnosis and get an accurate diagnosis, but that it is very important you do so AS SOON AS POSSIBLE. It really could be a matter of life or death, or of prolonging your high level of suffering and reducing your quality of life needlessly.

In conclusion

The only groups which gain from the 'CFS' confusion - the 'CFS' insurance scam - are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government. People with Myalgic Encephalomyelitis have a real fight on their hands to have the name and historically and scientifically correct definition of M.E. renewed - and to have M.E. separated once and for all from the bogus disease category of 'CFS.' But everyone who has been misdiagnosed as CFS who doesn't have M.E. is also harmed just as much by the man-made 'CFS' disease category.

The only logical way forward for every patient group involved is that the fictional disease category of 'CFS' must be abandoned. We all need to work together to stop this 'CFS' scam continuing any longer (Hooper 2006, [Online]). These vested interest groups have made ENOUGH extra millions of dollars for themselves at our expense.

Every diagnosis of 'CFS' - based on any of the CFS definitions - is a misdiagnosis. Everyone misdiagnosed with 'CFS' must stand up and refuse this wastebasket diagnosis starting now. This isn't just about politics, or semantics, or terminology. It isn't about who is sicker or more important than anyone else, or about one patient group trying to sneakily gain advantages for itself at the cost of another. It is about big business manipulating science and REALITY to suit their own vested political and financial interests with a blatant disregard for ethical concerns or the violation of basic human rights; no matter what the enormous cost to some of our most ill and vulnerable members of society. It is about preventing needless suffering, abuse, neglect and countless needless deaths of hundreds of thousands of children and adults with M.E. and all those millions of people misdiagnosed with 'CFS' who have other illnesses. Needless suffering and death is needless suffering and death. We need to work together to stop this happening for the benefit of all of us. Nobody is going to do it for us, unfortunately.

There is a bigger picture that you are a part of, but at the same time, even if only for your own sake - please don't be apathetic or complacent about rejecting 'CFS' and getting a correct diagnosis, and don't delay the process unnecessarily either. A 'CFS' misdiagnosis can only hinder your efforts to get some or all of your health back. If you think that there really is something seriously wrong with you physically, you are very probably right. Trust your instincts. Don't take 'I don't know' or 'I don't know but I think you maybe have CFS' or 'there is nothing wrong with you' for an answer. Keep pushing and pushing until you get the answers you need. If you come up against a brick wall; get a second opinion, or a third, or a fourth - or as many as it takes until you find a doctor that understands and practices the age-old medical principals of correct diagnosis: (a) taking a full and careful history, (b) detailed physical examination and (c) appropriate investigation and testing (Hyde 2006, [Online]). You need and deserve a correct diagnosis and appropriate medical care and a chance at improved health just as much as anyone else.

Again, a correct diagnosis is half the battle won.

All the best to you all with obtaining a correct diagnosis as quickly - and as painlessly - as possible. (Far easier said than done though such a task is.) Hopefully your correct diagnosis will be one of the less scary prospects listed here too; but even if it isn't, the only thing worse than having a serious or life-threatening disease is having a serious or life-threatening disease and not getting the appropriate diagnosis or any of the correct treatment for it.

Best wishes and the very best of luck - and medical care - to you all.


This text is avilable to be viewed or downloaded in a printer-friendly Word or PDF version at:

This page also includes an extra 'For more information' section' plus and additional in-depth 'Questions and answers on this text' section.

Questions answered in this 11 page section include the following:

a. Some groups are working on renaming, redefining or sub-grouping CFS. Won't this fix the problem? Isn't that at least a step in the right direction?

b. How can I assist my doctor in giving me a correct diagnosis?

c. Point by point, what is the difference between M.E. and CFS? I'm still not entirely sure.

d. Are M.E. advocates saying that 'CFS' is made up of people who have M.E. and people who are - as Wessely, Sharpe, Lloyd and the CDC and others say - malingering, 'enjoying the sick role' or exaggerating their symptoms and so on? That we either have M.E. or else we fit the psychological or behavioural model of CFS?

e. How and why did this mess start? Why was CFS created?

f. There is a lot of information out there about people with M.E. being harmed and suffering abuse because of the confusion between M.E. and CFS, and so on. Are people misdiagnosed with 'CFS' but who don't have M.E. affected by this too?

g. I'm worried.what if I have tests done, and M.E. is ruled out?

h. What about all those 'CFS' (and 'CFIDS' 'ME/CFS' and Myalgic 'Encephalopathy' etc.) advocacy groups out there, why haven't they been telling me this information? Why haven't they told me that CFS is a misdiagnosis?

i. I'm still confused about terminology, what are the correct terms to use?

j. Are M.E. advocates saying that every single article or piece of research which uses the term 'CFS' is completely irrelevant with regard to authentic M.E. patients?

k. M.E. advocates have an interest in the actions of CFS groups and people misdiagnosed with CFS and so on; they're affected by our actions to some extent. Is the information here (and in similar papers) designed to gain advantages for people with M.E. at the expense of people misdiagnosed with CFS who don't have M.E.?

l. I seem to fit the 2003 Canadian definition of 'ME/CFS' does this mean that I definitely have M.E.?

m. I have a post-viral fatigue syndrome, that's basically the same thing as M.E. isn't it?

n. But don't 'CFS' and M.E. at least have severe fatigue in common?

o. I'm absolutely appalled by this 'CFS' scam and all the abuse and neglect of so many very ill people. What else can I do to help improve things?


Permission is given for these documents to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author's attribution) is reproduced in full and without alteration. Please redistribute this text widely to every 'CFS' group and sufferer you can. This information must become widely known.

If you would like to link to this paper, please do so by using the links to my site provided rather than a reposting of this text on a third-party website as only the version on my site has live links and will continue to be updated.

This paper is designed to be read together with 'The misdiagnosis of 'CFS'' which is available at:

Monday, December 10, 2007

My formal response to the NY Times article

There would not be such a backlog of disability cases if qualified applicants were approved without having to appeal again and again.  And again.  And again.  Once a doctor and a vocational rehabilitationist have concurred that a patient is disabled, there should be no further appeals necessary.
I have been in the system for more than 7 years and still have not been approved.  The vocational rehabilitation experts have been unanimous that the evidence shows I cannot work.  The judge disregards their testimony, misconstrues evidence, and deems everyone (including his own experts!) who says that I have objective impairments as "not credible".  The "off the charts" blood test result is never mentioned in his opinions.
Several other cases could have been cleared out of the backlog if I had been approved when I first applied, instead of repeatedly going up to the Appeals Council and being sent back down to the local judge to correct his errors and back up to the Appeals Council and back down to the local judge. 
The decision is supposed to be made on one thing, and one thing only: the applicant's functional capacity.  But no one has ever sent me for a functional capacity evaluation (and after being out of work nearly 8 years, I cannot afford to pay for it myself, nor would I waste the money knowing that it would also be deemed "not credible" by the judge).  When I self-reported that I lasted only 3 days in a part-time job, getting steadily sicker each day, before I completely collapsed, that, too, was deemed "not credible". 
A former employee of State VocRehab who observes me first-hand several times a month says that if I were to ask VocRehab to find me a job, they would not be able to place me because I'm too limited; his professional opinion was similarly deemed "not credible" by the judge, who has stated that any employer should be thrilled to hire someone with my experience and qualifications.  If I were healthy, they would be, but I have a long list of doctor-issued restrictions that multiple VocRehab experts say make me unemployable.  
In summer 2004, a respected local specialist opined that I would never work full-time again and, while I might eventually recuperate enough to work half-time, even that was more than I could do at that time.  This is not a "borderline" case and never was (at the point I applied, it took me 3 weeks to do an 8-hour freelance assignment because I was so sick).  It's a concerted effort to make me give up and go away; unfortunately, I have no spouse/children/siblings to turn to for financial support, so I'm going to keep appealing until I'm approved.

Disability Cases Last Longer as Backlog Rises

December 10, 2007

Disability Cases Last Longer as Backlog Rises

RALEIGH, N.C. — Steadily lengthening delays in the resolution of Social Security disability claims have left hundreds of thousands of people in a kind of purgatory, now waiting as long as three years for a decision.

Two-thirds of those who appeal an initial rejection eventually win their cases.

But in the meantime, more and more people have lost their homes, declared bankruptcy or even died while awaiting an appeals hearing, say lawyers representing claimants and officials of the Social Security Administration, which administers disability benefits for those judged unable to work or who face terminal illness.

The agency’s new plan to hire at least 150 new appeals judges to whittle down the backlog, which has soared to 755,000 from 311,000 in 2000, will require $100 million more than the president requested this year and still more in the future. The plan has been delayed by the standoff between Congress and the White House over domestic appropriations.

There are 1,025 judges currently at work, and the wait for an appeals hearing averages more than 500 days, compared with 258 in 2000. Without new hirings, federal officials predict even longer waits and more of the personal tragedies that can result from years of painful uncertainty.

Progress against the backlog, if it happens, cannot undo the three years that Belinda Virgil of Fayetteville, N.C., has worried about her future since her initial application was turned down.

Tethered to an oxygen tank 24 hours a day because of emphysema and life-threatening sleep apnea, Ms. Virgil lost her apartment and has alternated between a sofa in her daughter’s crowded house and a friend’s place as she waits for an answer to her appeal.

“It’s been hell,” said Ms. Virgil, 44, who finally got her hearing in November and is awaiting the outcome. “I’ve got no money for Christmas, I move from house to house, and I’m getting really depressed.”

The disability process is complex, and the standard for approval has, from the inception of the program in the 1950s, been intentionally strict to prevent malingering and drains on the treasury. But it is also inevitably subjective in some cases, like those involving mental illness or pain that cannot be tested.

In a standard tougher than those of most private plans, recipients must prove that because of physical or mental disabilities they are unable to do “any kind of substantial work” for at least 12 months — if an engineer could not do his job but could work as a clerk, he would not qualify — or prove that an illness is expected “to result in death.”

In a recent interview, the commissioner of Social Security, Michael J. Astrue, said that outright fraud was rare but that many cases on appeal were borderline. In addition, widely publicized charges in the 1970s that money had been wasted on recipients whose conditions improved led to tighter scrutiny.

Of the roughly 2.5 million disability applicants each year now, about two-thirds are turned down initially by state agencies, which make decisions with federal oversight based on paper records but no face-to-face interview. Most of those who are refused give up at that point or after a failed request for local reconsideration.

But of the more than 575,000 who go on to file appeals — putting them in the vast line for a hearing before a special federal judge — two-thirds eventually win a reversal.

Mr. Astrue and other officials attribute the high number of reversals to several causes. Those who file appeals tend to be those with stronger cases and lawyers who help them gather persuasive medical data. During the extended waiting period, a person’s condition may worsen, strengthening the case. The judges see applicants in person and have more discretion to grant benefits in borderline cases.

Requiring face-to-face interviews at the initial stage could reduce the number of appeals, Mr. Astrue said, “but given the huge volume of cases coming through, it would be incredibly costly, and the Congress is not willing to fund that.”

The growing delays in the appeal process over the last decade resulted in part from litigation and financing shortages that prevented the hiring of new administrative law judges. In addition, the number of applications is rising as baby boomers reach their 50s and 60s.

“Once the system got overloaded, it fell farther and farther behind,” said Rick Warsinsky, legislative director of the National Council of Social Security Management Associations, which represents managers from the agency.

If approved, those who have paid into Social Security receive income comparable to retirement benefits, averaging more than $1,000 a month and potentially more. The poor, and severely disabled children, receive Supplemental Security Income checks that will be $637 a month in 2008.

Charles T. Hall’s law firm in Raleigh has the state’s largest disability practice, with six lawyers representing some 2,500 clients, usually working on contingency and collecting 25 percent of back payments, to a limit of $5,300. Mr. Hall said that about one client a month died while awaiting a hearing. Far more clients, he said, run out of money and are evicted from rental units or lose their homes.

In the past, said Walter Patterson, a disability lawyer in Charlotte, N.C., clients who received a foreclosure warning were pushed up the waiting list for quicker hearings. But as the hearing offices have become overwhelmed, he said, they now expedite cases only after seeing an actual eviction notice — usually too late to help.

Thomas Airington, 48, who formerly ran a car-emissions testing business, was told his appeal, filed last spring, would be expedited when he showed officials an eviction notice. In the meantime he lost the house, which his parents had bequeathed him. A hearing date has still not been set.

“If I’d been approved in time, I could have saved my house,” said Mr. Airington, who is staying with a brother near Raleigh.

Mr. Airington has pins in his spine from a car accident in 1992, shattered a knee when he fell 30 feet in 2005, has nerve damage in his feet and chronic arthritis and depression. The rejection letter he is appealing said, “We have determined that the condition is not severe enough to preclude work.”

Mr. Airington said he tried a desk job but found he could not sit for long, and tried working as a stocker in a grocery store but could not reach for shelves. Whatever the outcome, he, like many applicants, is in limbo while he waits.

The extended delays can also mean extra burdens for state welfare agencies. In New York State, about half the 38,000 people now waiting on disability appeals, for an average of 21 months, are receiving cash assistance from the state, said Michael Hayes, spokesman for the Office of Temporary and Disability Assistance.

Mr. Astrue, the latest of several Social Security commissioners to promise speedier decisions, said the agency had already taken steps to ensure quicker initial approval for those most clearly eligible and was holding more hearings by video.

But by all accounts, a major increase in money, judges and support staff will be needed to have a significant impact.

Mr. Astrue said that if the budget impasse continued for too long, leaving the agency budget at its current level, “not only will we not do any hiring, we’re looking at furloughs.”

A first step of raising the number of judges to 1,200 will require at least $100 million extra for the agency beyond the $9.6 billion that President Bush has proposed for the 2008 fiscal year, Mr. Astrue said. Within a wide-ranging, $151 billion health, education and labor bill passed in November, the Democratic-controlled Congress voted for a $275 million increase for the agency. But Mr. Bush vetoed the bill, calling it profligate.

If the stalemate continues, the government will probably operate on the basis of continuing resolutions, which will keep agency spending at last year’s level and doom the plan to add judges.

Richard and Vicki Wild and their adult son Mark, of Hillsborough, N.C., were mystified that Mark’s case would ever require a judge.

Hospitalized with increasing frequency since his severe diabetes was discovered at age 19, when he was found unconscious in a bus station, Mark Wild was eager to work as a chef. But over 15 years, he tried and lost jobs as a waiter and a cook. He had to drop out of culinary school because he was hospitalized so often, his parents said.

“We had 10 years’ worth of hospital records and unanimous opinions from the doctors,” said Richard Wild, 62, who until recently was a computer analyst. But his son’s initial application was turned down in 2003.

The family had sunk into debt because of medical bills, nearly losing their house of 30 years, but found a lawyer to file an appeal. The son, by then in his mid-30s, had to wait two more years to get a hearing scheduled, with no income and little life outside his parents’ home and the hospital.

As his hearing date in October 2006 approached, Mark Wild told his parents that he feared another rejection. “It was his last chance at any dignity, and he said if they turned him down it would be too much to take,” recalled Mrs. Wild, a nurse.

On Tuesday, Oct. 17, 2006, just a few days before the hearing, Mrs. Wild woke up to find her son gone. On his desk lay his watch, his ring and a bullet.

On that Thursday, Mrs. Wild, 55, got a call at work from their lawyer. “I just wanted to give you the good news,” she said he told her. “Somehow the judge has already approved the disability, it’s a done deal, Mark’s got it.”

Two hours later, a deputy sheriff and a chaplain arrived to say that hunters had found Mark Wild’s body in the woods, dead of a self-inflicted gunshot wound.

“No one can say for sure, but we’re convinced that his despondency and fear about the disability decision contributed to his death,” said Mrs. Wild, who wears a pinch of her son’s ashes in a small tube on a necklace.

Mr. Wild has tried to go back to work, but says he is so depressed he cannot do his job. He is applying for disability, but knows that he cannot expect an answer anytime soon.

* * *

I've been in the system for 7 years and apparently no closer to approval than I was in 2000; the judge dismisses as "not credible" any testimony that I can't work.  He's even ignored his own experts or called them incompetent when they disagree with his assessment that I "don't look sick" and therefore could work.  He accuses me of lying, but the real lies are in his opinions, where he invents a husband and restates the opinion of every doctor, including the one who said I would NEVER work more than half-time, as "what he meant to say was she's faking".

The primary California case on CFS disability, Reddick v. Chater, took 10 years to get from application to benefits.


Sunday, December 9, 2007

Medical Arrogance

Doctor Arrogance Deforms Profession
One Click Note: Below the Minette Marrin/Sunday Times piece, please click on the One Click link to the extraordinary extract from bestseller Confessions Of A Medical Heretic by Robert S. Mendelsohn, M.D. An eye opener for all.


The Sunday Times
December 9, 2007
Your attitude will be the death of us, doctor
Minette Marrin

Of the many strange sayings of President Bush, my favourite is, “The trouble with the French is that they have no word for entrepreneur.” In his inimitable way, Bush both disproved the point he was making and demonstrated that the French do indeed have some wonderful expressions that we lack. English would be much poorer without borrowed phrases such as je ne sais quoi, savoir faire and countless others.

One that sprang to mind last week, as I read about the paediatrician struck off by the General Medical Council for serious professional misconduct, was déformation professionelle. There isn’t an equivalent here. It is the slow process of deformity brought about by a demanding trade or profession, of its nature, rather as a ballerina’s toes are slowly distorted and damaged by her art.

In many cases professional deformation goes with an excess of zeal. Hairdressers are all too inclined to cut hair, whether it’s necessary or not, because haircutting is what they are trained to do. If one exists to solve a particular problem, one tends (and needs) to see that problem everywhere. So occupational bias often goes with zealotry. When it does it can be destructive, as in the case of the disgraced Dr David Southall.

The déformation professionelle of doctors is arrogance and sometimes unfeeling arrogance as in Southall’s astonishing case. I am not one of those people with a prejudice against doctors. There are doctors in my close family and among my friends.

All the same, given their power over life and death, and in Southall’s case, over parenthood, and given the superiority of their knowledge (real or imagined) over people in their power, it would hardly be surprising if some of them were to drift into arrogance. By arrogance I mean a loss of that modesty in the face of life’s great complexity and one’s own shortcomings that is an essential part of wisdom.

In medicine another hazard is emotional coldness.
From the earliest stages of their training, doctors are confronted with other people’s fear, pain, grief and death. I can never forget my brother’s accounts of his distress as a young doctor. One of the ways doctors deal with this is to distance themselves from people’s feelings and repress their own. Otherwise they could not function. There must be a balance between professional distance and acquired insensitivity, to say nothing of doctors who arrive at medical school insensitive and arrogant by nature. Any natural deformity will be made worse by the profession.

Southall is a man whose arrogance seems breathtaking.
In 2000 he felt able, after watching a Channel 4 programme about Sally Clark, then wrongly in prison for murdering her two baby sons, to ring the police and tell them he suspected the father was the murderer and might harm the remaining child in his care. Southall came to this conclusion without seeing any medical or postmortem records. His accusation was based on his expertise, whatever that can mean in such a context.

To accuse a bereaved father, whose wife is in prison for murdering their babies, of committing the crimes himself, with a view to having his remaining child taken away; to do so without the most carefully examined evidence; to intrude in the case without a professional invitation and worst of all to do so when he was prohibited from intervening in such cases because he had been suspended; and to fail to apologise to the Clarks, strikes me as déformation professionelle at its most monstrous.

The General Medical Council found Southall guilty at the time of serious misconduct and banned him from child protection work for three years. Three years later, last Tuesday, the GMC struck him off the medical register for other reasons. Complaints had been made to the GMC about Southall, including the removal of nearly 4,500 hospital case notes to his own files. The panel spoke of his “multiple failings over an extended period” and his “deep-seated attitudinal problems”, but what finally got him struck off, among other things, was his treatment of a woman whose 10-year-old son had hanged himself.

Southall accused this mother, to her great distress, of drugging and hanging the boy herself; this was in front of a senior social worker who was considering removing her other child. He also brought up with this unhappy woman another possibility, only to dismiss it, that her 10-year-old had died in an autoerotic sexual experiment. The scene as Southall himself described on Radio 4 sounded almost insanely insensitive and improper and would have been so even had the mother been guilty, which she wasn’t.

What is disturbing is that many paediatricians and other doctors support Southall. They claim that he is being hounded by a determined campaign to deny the existence of child abuse. This is nonsense. The country is obsessed with child abuse. So far from denying it, we all suspect it or are encouraged to suspect it everywhere. What Southall is guilty of, and what parents everywhere hate and fear, is extreme arrogance, insensitivity and a general indifference to rules, combined with astonishing power. That is bad in anyone but it is completely unacceptable in a paediatrician dealing with other people’s babies and parents’ rights to keep them.

Paediatricians such as Southall, and social workers, have impossibly difficult jobs. With the best of intentions they might accuse an innocent parent or be tricked by a guilty one. They may often be wrong for the right reasons, or for reasons that though wrong are conventionally accepted.

There may often be telltale signs of abuse when, in fact, there is no tale to tell. Later scientific research may suggest other explanations. Southall’s mistakes may be just that. His real crime is his attitude: his insensitivity and his overconfidence, wrong though he has often been, in what he keeps coolly calling his expertise, as if there were any objective expertise in such cases. Other paediatricians should not try to protect him. If they do, they will bring themselves and child protection into disrepute. And they may be suspected of another déformation professionelle – a tendency in doctors to close ranks, right or wrong.

- ends -


For Further Information:

By Robert S. Mendelsohn, M.D, Contemporary Books, ISBN Number 0-8092-4131-5

Chapter 7
pp. 123-140
The Devil’s Priests
News Archives No. 1051

Known to millions through his nationally syndicated column as “The People’s Doctor”, Mendelsohn was the national medical director of Project Head Start and chairman of the Medical Licensure Committee for the state of Illinois, USA. Among the many faculty and hospital posts he held, he was an associate professor at the University of Illinois Medical School and a director of Chicago’s Michael Reese Hospital. Dr. Mendelsohn, world-famous physician and patient advocate, was a pioneer in the movement toward truth in the medical profession.