Peter White/Barts - comments on draft NICE guidelines - insight into their views

This might be what you want Mark. It has just been released.

Mary Schwietzer was a university lecturer until she became ill and writes very incisive essays.

She says what I believe so much better than I could.

Mithriel

Playing NICE: circle time is over

Thanks tomk, Mithriel, cjbrennan for your great posts. Allow me to expand on this NICE theme.

In my view, discussion of CBT/GET as primary treatment for ME/CFS is as irrelevant to the XMRV finding - and to the scientific pursuit of an ME/CFS patient getting better - as one can get. And before anyone shoots me down for my transgression, I'm speaking not only as a decade-long, PCR/immunohistochemistry biopsy-confirmed case of persistent parvovirus B19 and ME/CFS, but also as a former medical professional with double degrees in Rehabilitation Medicine.

Allow me to qualify this: CBT as a coping strategy, while the big boys (i.e. molecular biologists, retrovirologists, hematologists, oncologists, cardiologists, exercise physiologists, etc) do their work to treat this biological illness? Sure. GET as a pick-me-up after, say, all chance of exercise-induced cytokine storms and aberrant auto-immune response etc. has been eliminated with antiretrovirals, immunomodulators, and targeted antiviral therapy for opportunistic infections? Sure.

Any physiotherapist/ occupational therapist/ physiatrist (and even psychiatrist - there are a few stellar ones researching ME/CFS) worth their salt would be jumping through hoops in enthusiasm, to learn more about post-exertional malaise and VO2Max abnormalities (eg. U of Pacific), mitochondrial dysfunction, opportunistic infections, RNase-L dysfunction, genetic signatures, etc. And of course XMRV. So indeed it's no surprise that Ivy League university Cornell has just joined the illustrious WPI team. Or that there's a veritable international race to replicate WPI's findings. Or that 75 of America's top virologists/retrovirologists dropped everything to meet at the Cleveland Clinic to fast-track XMRV research.

Please heaven, give us a break with this unscientific CBT/GET-as-treatment-drivel. Rest assured, as a good rehab professional I've been there, desperately trying to toe the party line. Done that. Made me profoundly worse - not just once, but many times, because I was so sure that I could judiciously exercise my way out of this beast. And no, I'm not just a sample size of 1. If the CBT/GET lobby were to come down from its lofty perch and care to listen to ME/CFS patients with classic post-exertional malaise (particularly those with Canadian or Fukuda classified ME/CFS), the verdict is unanimous. Graded exercise - much less ANY exercise - can be and is poison, particularly to people with PEM and who can't do basic activities of daily living (ADL).

Frankly, I'd be grateful if avid proponents of CBT/GET-as-treatment-for-ME/CFS could conduct this vapid marketing elsewhere, or on a dedicated marketing thread, where respondents want a monotonous, single-theme infomercial rooted in narcissism, rather than intelligent discourse on diverse matters that deeply affect our health. My observation is that the vast majority of people on this forum want to LEARN, and most importantly, want to GET BETTER!!! CBT/GET as a core strategy in our ME/CFS community's pursuit of health is illogical, unscientific, and downright bizarre.

It does raise the issue of moral hazard however, and the MBA in me gets it that a veritable multi-million $/ CBT/GET industry built on the lives of patients suffering from a retrovirus and known opportunistic persistent viral infections is understandably loath to relinquish its cash cow.

Additionally, I am reminded of the research finding a disproportionately high rate of Narcissistic Personality Disorder in the medical profession. Self-selection in action. Think: someone who despite the facts continues to propagate his/her skewed view of reality. Someone who will stop at nothing to get his/her way. Someone who is clinically incapable of empathy. To my fellow ME/CFS patients. Look up Narcissistic Personality Disorder (NPD) I know you guys are beautifully internet literate, and thank heavens for the power this gives us. I will eat my Canadian Winter Olympics hat if key personalities in the CBT/GET saga dont have NPD. But then again, NPDers are clinically devoid of insight they will never get the grievous damage they have foisted on this patient group. And they won't stop unless we stop them. Thankfully WPI is doing just that.

Those of us who are fighting to get our lives back from this devastating illness and the chorus is resounding on this forum are not deaf or blind to the CBT/GET lobbys thinly-veiled malice, and concerted effort to show us - and the world - the error of our misguided ways. To the CBT/GET lobby, please do not mistake our silent observing of your obfuscations for meek agreement with your flat-earth exhortations.

Weve got science on our side. Which, not coincidentally, underscores that the symptoms we've been describing to our docs for the past several decades are quite simply the unvarnished TRUTH. As for the inevitably crumbling CBT/GET lobby?

Its a tale told by an idiot.
Full of sound and fury.
Signifying nothing.

Haven't watched it in a while but perhaps the Sleepydust video might be of some value?

Sleepydust - About M.E. / Chronic Fatigue Syndrome
http://www.youtube.com/watch?v=r0w9-eQ_fKQ

This video has a procession of photos of people with severe/very severe M.E. - in effect, it is like lots of people saying it destroyed their life:
Raising awareness of severe M.E.
http://www.youtube.com/watch?v=r0w9-eQ_fKQ

You could start a thread in this forum with heading: "looking for internet material to direct family and friends to" and then post what you are looking for and see what comes forward. This particular thread is quite a special interest thread so probably won't get as many responses as you could by posting it here.

Glad we have you on our side, parvofighter.

Fingers crossed that it is crumbling. For the 15 years I've been diagnosed and severely affected, they have been hampering progress into the illness and spreading misinformation as you alude to. And in some countries in particular (e.g. the UK, the Netherlands, Belgium), they have pretty much taken over.

By the way, what is that quote from? It sounds familiar. Is it by one of the World War One poets (wild guess)?

There might also be books that might suit.

Parvofighter, your post says it all so well.

I became ill in 1968 and was finally diagnosed with ME in 1984. My OH is a microbiologist who read Eleanor Bell's wonderful paper which showed that ME existed as sporadic cases as well as epidemics and that cases were there if anyone looked for them. I am trying to find a copy of it as no one mentions it any more.

She finished by saying that she feared hospital waiting rooms were full of very sick undiagnosed patients who were being treated with disdain by doctors who were failing them. Almost thirty years later the situation is worse than ever.

For a few brief years ME was taken seriously and we had hope, then came the CDC and Wessely with their CFS .....

I hope this is a new dawn.

Mithriel

Thanks tomk

You have put a great deal of work into this thread and gone a long way to highlighting the carp we have to go through here in the UK.
Further to your excellent points I would like it known that the other chief architect pertaining to the NICE guidelines is Simon Wessely.

I want to make this very clear; Simon Wessely has stated ( this is on public record ) that using these guidelines 'one third of M.E patients went on to make a full recovery, two thirds make a significant recovery and the rest we can't do anything for'.
Underpinning this diaspora, this 'corollary' of propagandist egregiousness is the fact that Peter White has said that we are 'the least deserving sick in society', that we suffer from 'abnormal illness beliefs' in that we are responsible for pertuating symptoms hitherto of our own making.
There are no words to describe these crimes.

Kind regards, Mark

25 years of hurt

We have become part of a lost generation. I pray that we will all find our way back one day.

Kind regards, Mark

The quote is from Shakespeare -- Macbeth, I think.

ETA I think the Phoenix Rising site that Cort has put together is a very good place to direct friends and family who want to dig down into the facts and it's getting more comprehensive all of the time.

Thanks - makes sense as that is one of the Shakespeare plays we studied in school (along with Henry IV part 1).

Thanks for that, Mark.

BTW, KCL where Simon Wessely/Trudie Chalder have been based also sent in some critical comments of the draft NICE guidelines along similar lines to Peter White/Barts but they didn't send in as much. But they've written more than their fair share of this sort of stuff over the years.

One-stop-shopping for ME info; Media ideas

@tomk & mithriel, I do indeed believe that we are witnessing the very beginning of the crumbling of the CBT/GET lobby. This barbaric approach to a biological disease that ruins lives MUST be shouted from the rooftops. Not just because we are fellow sufferers with ME/CFS. But because we are citizens of this world. I thought I had it bad, fighting here in Canada for diagnosis and treatment for 11 years. Losing my health. My sense of character. My ability to be a deeply involved parent & spouse. My life-long friends. My company. My career. My exuberant sports hobbies (skiing, windsurfing, backpacking, rollerblading, canoe portaging...). Then I read about the CBT/GET lobby. I read about Bell's "Munchausen-by-proxy" ME/CFS children, ripped from their families. About UK/EU patients categorically denied biologically-based medical care, committed to psychiatric institutions for "faulty illness beliefs". This MUST be stopped.

@Quilip, we ARE a lost generation - and so are our kids. The ripple effects of the disdain and criminal neglect ME/CFS patients have endured from the medical profession - much less from the CBT/GET psych lobby - are the stuff of blockbuster movies. Tom Hanks (Philadelphia Story), Michael Moore(his documentaries), Stephen Spielberg (Schindler's List). We NEED some big Hollywood/Cannes names to see this story for what it is: a riveting, nauseating, head-shaking expos of how terrifyingly barbaric humans can be to each other; and how capricious medical care can be. This is a perfect example of the banality of evil, and it is extraordinarily telegenic. And the clincher: this could happen to anyone! We just need to catch the eye of the media/book/film world - and quickly - before more ME/CFS'ers lose their lives. FYI Anyone can submit a story idea to: Michael Moore @ http://www.michaelmoore.com/submit Not sure about Spielberg and Hanks

@cjbrennan. You're right. The quote is from Shakespeare's Macbeth, Act 5, Scene 5:. It's Macbeth's Tomorrow and Tomorrow and Tomorrow soliloquy. Geez, that guy could write. Too bad he isn't around to provide his profound commentary now. But then again, he still is, in the genius of his writing. Shakespeare so GOT the blackest depths of human nature.

Tomorrow, and tomorrow, and tomorrow,
Creeps in this petty pace from day to day
To the last syllable of recorded time,
And all our yesterdays have lighted fools
The way to dusty death. Out, out, brief candle!
Life's but a walking shadow, a poor player
That struts and frets his hour upon the stage
And then is heard no more: it is a tale
Told by an idiot, full of sound and fury,
Signifying nothing.

@cjbrennan - Good idea. I also agree that the Phoenix Rising site is a great one-stop shop to direct friends & family to. I wonder if Cort might do a "ME/CFS for dummies" summary that has all the research meat in it & the debunking of the "ME/CFS is imaginary" myth, in one concise article, hotlinked to the details in his site? I also love how this diagram summarizes the Canadian/Fukuda/ criteria vs CBT/GET lobby's self-serving, empire-building "criteria":

I have found links to the papers published in 1983. They would make you weep when you see how little progress we have made from this promising start.

Myalgic encephalomyelitis, report of an epidemic Behan and Bell 1983

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1972867/

Sporadic myalgic encephalomyelitis in a rural practice Keighley and Bell 1983

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1972871

Mithriel

Yes, it is depressing.

One slightly positive thing was that I remember Dr. Chia saying he found the work of UK researchers on the area (of Coxsackie viruses in the illness) useful when he was learning about the area - if there wasn't that research in the UK in the 80s and 90s, he might have given up and possibly never done the work he has.

@ parvo, I'm totally with you. I continue to be just absolutely...horrified, appalled, etc. etc. - with what is happening in the UK. It seems to me to go beyond medical malpractice and into a human rights abuse. The banality of evil is exactly right, everybody "just doing their jobs".

I've wondered, looking at Levi's "Unexplained Illnesses" Joint Resolution thread, if all this might be something to bring up with the United Nations or some human rights org (Amnesty International?). It does seem like a human rights violation to presume insanity in the case of unexplained illness. Doesn't it??

A new Human Rights Advocacy string?

@fresh eyes - brilliant idea re: human rights issue. UN. Amnesty International. World Health Organization. Medcins sans Frontiers/Doctors without Borders. What do you think of starting up a new string on this?

I"m going to be out of commission for a couple of days, but will check back.

Human Rights



Just a thought .......could the European Bill of Human Rights help us? I took a copy of it along to an appeal tribunal, placed it conspicuously on the table in front of the panel of folk who were to decide my fate . and I won! Dunno where my copy is now....

Human rights?

They will say it's neurosis, not insanity. And doctors make that diagnosis all the time...

xan

I thought people might be interested in this piece by Peter White (and a colleague, Anthony Clare - who is dead now) in a medical text book that is very widely used in the UK, and has been translated into other languages.

The index entry for ME directs the reader to the entry for CFS. There is a very small entry in the infectious diseases seciton under the heading Postviral/Chronic Fatigue Syndrome, which states "Studies have suggested that two-thirds of patients with a symptom duration of more than 6 months have an underlying psychiatric disorder".

As CFS wouid normally not be diagnosed within this timeframe, that means basically most of us have a psychiatric reason for our symptoms (according to them).


This section (and the index entry on CFS) then directs then reader to the CFS piece in Section 22 (Psychological Medicine), where CFS/ME is listed nder "Functional or Psychsomatic Disorders: Medically Unexplained Symptoms".

Anyway this is the text below and the details of the book.

Kumar and Clark - Clinical Medicine

By Parveen Kumar, CBE, BSc, MD, FRCP, FRCP (Edin), Professor of
Clinical Medical Education, Barts and The London, Queen Mary's School
of Medicine and Dentistry, University of London, and Honorary
Consultant Physician and Gastroenterologist, Barts and The London NHS
Trust, London, UK; and Michael Clark, MD, FRCP, Honorary Senior
Lecturer, Barts and The London, Queen Mary's School of Medicine and
Denistry, University of London, UK

ISBN 0702027634 Paperback 1528 Pages 1283 Illustrations
Saunders Published August 2005


----------------

Contributors include:

----------------

Anthony W Clare MD FRCPI FRCP FRCPsych MPhil
Professor of Clinical Psychiatry
Trinity College, Dublin;
Medical Director
St Patrick's Hospital, Dublin, Ireland

---------------------------------

Peter D White MD FRCP FRCPsych
Senior Lecturer in Psychological Medicine, Honorary Consultant in
Liaison Psychiatry
Barts and The London, Queen Mary's School of Medicine and Dentistry,
University of London, UK

-----------------------------------

<>

We all have illness behaviour when we choose what to do about a
symptom. Going to see a doctor is generally more likely with more
severe and more numerous symptoms and greater distress. It is also
more likely in introspective individuals who focus on their health.

Abnormal illness behaviour occurs when there is a discrepancy between
the objective somatic pathology present and the patient's response to
it, in spite of adequate medical investigation arid explanation.

FUNCTIONAL OR PSYCHOSOMATIC DISORDERS: MEDICALLY UNEXPLAINED SYMPTOMS

`Functional' disorders are illnesses in which there is no obvious
pathology or anatomical change in an organ (thus in contrast
to `organic and there is a presumed dysfunction in an organ or
system. The word psycho-somatic has had several meanings, including
psychogenic, `all in the mind'; imaginary and malingering. The modern
meaning is that psychosomatic disorders are syndromes of unknown
aetiology in which both physical and psychological factors are likely
to be causative, The psychiatric classification of these disorders
would be somatoform disorders, but they do not fit easily within
either medical or psychiatric classification systems, since they
occupy the hinterland between them. Medically unexplained symptoms
and syndromes are very common in both primary care and the general
hospital (over half the outpatients in gastroenterology and neurology
clinics have these syndromes). Because orthodox medicine has not been
particularly effective in treating or understanding these disorders,
many patients perceive their doctors as unsympathetic and seek out
complementary treatments of uncertain efficacy. Examples of
functional disorders are shown in Table 22.4.

Because epidemiological studies suggest that having one of these
syndromes significantly increases the risk of having another, some
doctors believe that these syndromes represent different
manifestations in time of `one functional syndrome', which is
indicative of a somatization process. Functional disorders also have
a significant association with psychiatric disorders, especially
depressive and panic disorders as well as phobias. Against this view
is the evidence that the majority of primary care patients with most
of these disorders do not have either a psychiatric disorder or other
functional disorders.

Table 224

Functional or psychosomatic syndromes (medically unexplained symptoms)

`Tension' headaches
Atypical facial pain
Atypical chest pain
Fibromyalgia (chronic
widespread pain)
Other chronic pain syndromes
Chronic or post-viral fatigue syndrome
Multiple chemical sensitMty
Premenstrual syndrome
Irritable or functional bowel syndrome
Irritable bladder syndrome

It also seems that it requires a major stress or a psychiatric
disorder in order for such sufferers to attend their doctor for help,
which might explain why doctors are so impressed with the
associations with stress and psychiatric disorders. Doctors have
historically tended to diagnose `stress' or `psychosomatic disorders'
in patients with symptoms that they cannot explain. History is full
of such disorders being reclassified as research clarifies the
pathology. A recent example is writer's cramp (p. 1233) which most
neurologists now agree is a dystonia rather than a neurosis.

Chronic fatigue syndrome (CFS)

There has probably been more controversy over the existence and
aetiology of CFS than any other functional syndrome in recent years.
This is reflected in its uncertain classification as neurasthenia in
the psychiatric classification and myalgic encephalomyelitis (ME)
under neurological disorders. There is good evidence for this
syndrome, although the diagnosis is made clinically and by exclusion
of other fatiguing disorders. Its prevalence is 0.5% in the UK,
although abnormal fatigue as a symptom occurs in 10-20%. It occurs
most commonly in women between the ages of 20 and 50 years old, The
cardinal symptom is chronic fatigue made worse by minimal exertion.
The fatigue is usually both physical and mental, with associated poor
concentration, impaired registration of memory, irritability,
alteration in sleep pattern (either insomnia or hypersomnia), and
muscular pain. The name myalgic encephalomyelitis (ME) is
decreasingly used within medicine because it implies a pathology for
which there is no evidence.

Aetiology


Functional disorders often have aetiological factors in common with
each other (see Table 22.5), as well as more specific aetiologies.
For instance, CFS can be triggered by certain infections, such as
infectious mononucleosis and viral hepatitis. About 10% of patients
with infectious mononucleosis have CFS 6 months after the infectious
onset, yet there is no evidence of persistent infection in these
patients. Those fatigue states which clearly do follow on a viral
infection can be classified as post-viral fatigue syndromes. Other
aetiological factors include physical inactivity arid sleep
difficulties. immune and endocrine abnormalities noted in CFS may be
secondary to the inactivity or sleep disturbance commonly seen in
patients. Mood disorders are present in a large minority of patients,
and can cause problems in diagnosis because of the large overlap in
symptoms. These mood disorders may be secondary, independent (co-
morbid), or primary with a misdiagnosis of CFS. The role of stress is
uncertain, with some indication that the influence of stress is
mediated through consequent psychiatric disorders exacerbating
fatigue, rather than any direct effect.

Management

The general principles of the management of functional disorders are
given in Box 22.7. Specific management of CFS should include a
mutually agreed and supervised programme of gradual increasing
activity However, few patients regard themselves as cured after
treatment. It is sometimes difficult to persuade a patient to accept
what are inappropriately perceived as psychological therapies' for
such a physically manifested condition. Antidepressants do not work
in the absence of a mood disorder or insomnia.

Prognosis

This is poor without treatment, with less than 10% ot hospital
attenders recovered after 1 year Outcome is worse with increasing
age. co-morbid mood disorder, and the conviction that the illness is
entirely physical.

Table 22.5 Aetiological factors commonly seen in functional disorders

Predisposing

Perfectionist obsessional and introspective personality
Childhood traumas (physical and sexual abuse)
Similar illnesses in first-degree relatives

Precipitating (triggering)

Infections
Chronic fatigue syndrome (CFS)
irritable bowel syndrome (IBS)
Psychologically traumatic events (especially accidents)
Physical Injuries ('fibromyalgia and other chronic pain syndromes)
Life events that precipitate changed behaviours (e.g. going off sick)
Incidents where the patient believes others are responsible

Perpetuating ( maintaining)


Inactivity with consequent physiological adaptation (CFS
and 'fibromyalgia').
Avoidant behaviours multiple chemical sensitivities (MCS) CFS
Maladaptive illness beliefs (that maintain maladaptive behaviours)
(CFS)
Excessive dietary restrictions (`food allergies')
Stimulant drugs
Sleep disturbance
Mood disorders.
Somatization disorder
Unresolved anger or guilt
Unresolved compensation

Box 22.7 Management of functional disorders

The first principles is the identification and treatment of
maintaining factors (e.g. dysfunctional beliefs and behaviours mood
and sleep disorders)

Communication

Explanation of ill-health, including diagnosis and causes
Education about management (including self-help leaflets) .
Stopping drugs (e. g. caffeine causing insomnia, analgesics causing
dependence)

Rehabilitative therapies

Cognitive behaviour therapy (to challenge unhelpful beliefs and
change coping strategies)
Supervised and graded exercise therapy for approximately 3 months (to
reduce inactivity and improve fitness)

Pharmacotherapies

Specific antidepressants for mood disorders,analgesia and sleep
disturbance .
Symptomatic medicines (e.g. appropriate analgesia, taken only when
necessary)

-------------------------------------------------

Grounds for legal/human rights action

@Orla, thanks for posting this. One would think it was written in the Middle Ages, rather than in 2007. I would LOVE to hear what some medico-legal minds think about this. Reading through it, I just kept thinking: medical malpractice; incompetence; wilful ignoring of viral etiology; class action lawsuits. And a patient population swimming not only against incompetent medical practice, but also against institutionally entrenched financial interests in CBT/GET. Anyone have contacts in the medical malpractice/human rights field? Let's get this party started...

Here are some take-aways on the inherent contradictions in this document:
1)Lack of evidence of "adequate medical investigation and explanation", particularly related to post-viral symptoms.

The diagnosis of abnormal illness behavior, somatization, hypochondria etc. depends on the flawed assumption that adequate medical investigation has been performed. Where is the discussion for example that ME/CFS viruses such as parvovirus B19 and Human Herpes-6 are sometimes absent on PCR in blood, but found in tissue? Where is the guidance on how to ensure that "adequate medical investigation" has indeed been done? This treatise on Medically Unexplained Symptoms devotes all its energy to so-called abnormal illness behavior, and completely glosses over "adequate medical investigation and explanation", which I believe is our medicolegal wild card, the Achilles Heel of the CBT/GET lobby. I am reminded of an immunologist who refused to conduct parvovirus B19 tests on me - and refused to see me - as soon as he heard that I had ME/CFS symptoms. Yup, got it in writing.

2) Patient reports of continuing pathology - despite subjective medical claims that they have been appropriately treated.

3) Evidence of incompetence: inaccurate/misleading assertions of absence of objective physical signs of pathology, particularly related to viral etiology.

On the contrary, competent physicians know how/where to look for evidence of viral reactivation & persistent viral infection. A great summary of this is the letter to the CFSAC by Dr Ablashi, Scientific Director of the HHV-6 Foundation@ http://www.hhs.gov/advcomcfs/meetings/presentations/ablashi_1009.pdf

"It is imperative that the CDC study biopsy samples from the gut, and brain as well as heart tissues,
and that they look at spinal fluid. Most of the studies done by the CDC have been on serum.
However, many pathogens cannot be found in the serum because they
do not circulate in the peripheral blood after the initial infection."

4) Evidence that these physicians/psychiatrists are abundantly aware of the viral connection with ME/CFS. Given this knowledge, so nicely profiled here, the adequacy of their medical investigation can be raked over the coals.

Infections are #1 on their list of precipitating factors. It is no great mystery - even to the CBT/GET lobby - that ME/CFS is connected with viruses. The perps knowingly disregarded the viral etiology.

5) Documentation that patients get worse, particularly when we keep insisting that the biological causes of ME/CFS are not being addressed.

In summary
ME/CFS, is the GET/CBT lobby's poster-child for Medically Unexplained Symptoms:

Now the ME/CFS community is the poster child for how patients with Medically Unexplained Symptoms are abused by a negligent and capricious medical system. I found myself reminded of WB Yeats' poem, "The Second Coming":

Turning and turning in the widening gyre
The falcon cannot hear the falconer;
Things fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world,
The blood-dimmed tide (XMRV) is loosed, and everywhere
The ceremony of innocence (CBT/GET) is drowned

WB Yeats

Can't help thinking this is how the CBT/GET lobby sees recent XMRV events. Ceremony of innocence, indeed.