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

Dolphin

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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)

-------------------------------------------------
I think this post may have led to this March 9 blog post:
 

Leopardtail

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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.:D 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":

Frankly,

A movie about our systematic abuse at the hands of 'medicine' is exactly what we need. The group organising this would make a fine plot for a bond movie in which they got their 'just desserts'.

This does seem very much like the stuff of a Tom Hanks movie, in which the harm done to an amiable character by GET is highlighted.

I have been thinking for some time that we need a different kinda of media involvement in which our story is told in a direct and personal way.

Great idea, now we just need a movie mogul with CFS/ME to make it happen.

Leo.
 

peggy-sue

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I have just noticed this amongst PW's list of "somatoform disorders" on Dolphin's post.

Premenstrual syndrome.:jaw-drop:

Silly wummen again, you know.
Nothing at all to do with raging, real, physical, molecular, organic hormones.:rolleyes:
 

alex3619

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I have just noticed this amongst PW's list of "somatoform disorders" on Dolphin's post.

Premenstrual syndrome.:jaw-drop:

Silly wummen again, you know.
Nothing at all to do with raging, real, physical, molecular, organic hormones.:rolleyes:
There has been a move to classify at least some PMS as psychiatric since I think DSM-III.

These people play with words. Its semantic sophistry. Based on functional disease not having obvious structural change, it follows that PMS must be functional. Yet at that point the slight of hand is done: if its functional, it must be psychiatric. The only evidence of functional disorders I have ever seen is biochemical. Many genetic diseases are functional by this definition, so are many diseases considered to be physical.

Here is another kicker though: changes in physical structure at the molecular level do not, somehow, count as structural changes. The only thing that counts is gross structural change, like a blocked artery or something.

Biochemical changes must not be real. Gross physical changes (eg. vasodilation) do not count, they are not structural changes. This is semantic sophistry, extreme denial of the physical.

As more and more "psychiatric" disorders are shown to be due to other factors including pathogens and auto-immmune disease, where can they retreat to? To the nebulous and mythical, because nobody can prove that snarks and boojums do not exist.
 

peggy-sue

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I've been diagnosed with a "functional" one leg a lot shorter than the other. :p
There is a difference in my height from 5' to 5'2", depending on which leg I stand on.
(as measured by a nurse a fortnight ago)

However, the chap at the biomechanical clinic laid me down on a couch and measured my legs, and said they were the same.

I did explain that I had sciatica (which was why I was in the clinic) and that I felt the problem was actually in my hips or lower back, I went through the change some time ago, my bones could be crumbling a bit.

No investigations into my hips or lower back, no scans no x-rays.

I just have a "functionally" short leg. :mad:
 

Valentijn

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His research has helped to establish the independent existence of CFS, its heterogeneity, and relationship with other functional somatic syndromes, the place of infections and exercise intolerance in causing and maintaining CFS, and the role of rehabilitative treatments such as cognitive behaviour therapy and graded exercise therapy in improving health.
:vomit:
 

Dolphin

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Maybe this has been mentioned somewhere before but Peter White has been involved in the creation of Dept of Work and Pensions (DWP) guidance for disability assessments (in the UK).

See:
https://www.whatdotheyknow.com/requ...D S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf.html
or
here:
https://www.whatdotheyknow.com/requ.../2/MED S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf
Acknowledgement from version 1
“The author and Medical Services gratefully acknowledge the contribution of the authors (Professor S Wessely, Professor P D White and Professor M Aylward) of the enclosed articles and their kind permission to reproduce them in this module. In addition the author would like to express his gratitude to Dr P Dewis for his helpful comments and suggestions.”
Chronic Fatigue Syndrome - Guidelines for the Disability Analyst
Version 5 Final
Reference: MED/S2/CMEP~0017
Background information is available here:
https://www.whatdotheyknow.com/request/training_briefing_and_knowledge#incoming-289774

---
The recent update doesn't have their names on it, although it has been suggested to me that doesn't mean they were not involved with it (I haven't been following it too closely).
 

chipmunk1

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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
Have they ever seen a patient in real life?

i think this happens when a bunch of incompetent and clueless people fools sit at their desks fantasizing about illnesses instead of listening to patients in real life.

But no it must be the evil "gluten free" foods and the meth addiction that are causing the CFS.

The name myalgic encephalomyelitis (ME) is decreasingly used within medicine because it implies a pathology for which there is no evidence.
One might add here: the name functional disorder is increasingly used within medicine because it implies a pathology for which there is no evidence needed.
 
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Leopardtail

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Maybe this has been mentioned somewhere before but Peter White has been involved in the creation of Dept of Work and Pensions (DWP) guidance for disability assessments (in the UK).

See:
https://www.whatdotheyknow.com/request/100910/response/289774/attach/html/2/MED S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf.html
or
here:
https://www.whatdotheyknow.com/request/100910/response/289774/attach/2/MED S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf


Background information is available here:
https://www.whatdotheyknow.com/request/training_briefing_and_knowledge#incoming-289774

---
The recent update doesn't have their names on it, although it has been suggested to me that doesn't mean they were not involved with it (I haven't been following it too closely).
Given that three of the references are by Wessley, and all but one are completely Psychological - it's not hard to work out who wrote this is it? The "Fatigue being of central origin" also kinda jumps out.

There is no wonder we are treat so badly by the DWP.
 

Dolphin

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From an article by Peter White http://www.eastlondon.nhs.uk/Resear...ewsletters---docs/RDNewsletter,Summer2011.pdf (thanks to @Maxwhd on Twitter alerting me to this)

Chronic fatigue syndrome (CFS) is a chronic disabling condition of unknown cause and no certain treatment. Some 250,000 to 500,000 people suffer from it in the United Kingdom, the difference in prevalence depending on how it is defined. Some differentiate myalgic encephalomyelitis (ME) from CFS, whereas others think it is the same condition. This difficulty in defining it is but one of the controversies that affect CFS, the others being what causes it and how to treat it. The controversy has in the past led to demonstrations to the Department of Health, petitions to government and debates in parliament. Patient organisations complain that the National Health Service does not take CFS seriously, does not provide appropriate health services, and that patients are denied benefits to which they are entitled, leading to poverty and hardship.
Note that the Barts CFS service led by Peter White generally won't provide letters to support their patients applications for benefits. Also, I've heard services linked to the Barts service e.g. in Essex, similarly don't provide such letter, citing advice/direction from the Barts service.

I'm not aware that this policy has changed despite the fact that the 5-million pound trial he led, which was partly funded by the Dept. of Work and Pensions, found neither CBT or GET led to decreased numbers receiving benefits (in fact the numbers, like with APT and no individual therapy, increased).
 
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Leopardtail

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From an article by Peter White http://www.eastlondon.nhs.uk/Resear...ewsletters---docs/RDNewsletter,Summer2011.pdf (thanks to @Maxwhd on Twitter alerting me to this)


Note that the Barts CFS service led by Peter White generally won't provide letters to support their patients applications for benefits. Also, I've heard services linked to the Barts service e.g. in Essex, similarly don't provide such letter, citing advice/direction from the Barts service.

I'm not aware that this policy has changed despite the fact that the 5-million pound trial he led, which was partly funded by the Dept. of Work and Pensions, found neither CBT or GET led to decreased numbers receiving benefits (in fact the numbers, like with APT and no individual therapy, increased).
Just wondering here whether they are breaking Human right law there.... and whether anything could be done about them.....
 

ukxmrv

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Just wondering here whether they are breaking Human right law there.... and whether anything could be done about them.....
Not unless we can find a lawyer interested in this. I did a sweep of "human rights" lawyers a few years ago and there was no interest.

After the NICE Guidelines Judicial Review I'd be very careful taking legal actions. Also that experience may have turned a lot of lawyers off sadly.
 

Leopardtail

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Not unless we can find a lawyer interested in this. I did a sweep of "human rights" lawyers a few years ago and there was no interest.

After the NICE Guidelines Judicial Review I'd be very careful taking legal actions. Also that experience may have turned a lot of lawyers off sadly.
I am not in the area, so couldn't do it. In this case the challenge would not be the medicine but discrimination by imhibting access to disabled benefits.

The NICE challenge fell down primarily on a technicality, the two people who mounted it 'entrapped' a person from NICE and thereby messed their case up. The issue as you say would be finding a lawyer though, most of them are terrified of taking on ME cases.
 

Dolphin

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Tweets on talks on CFS by Peter White, Julia Newton & Alastair Miller
http://forums.phoenixrising.me/inde...ter-white-julia-newton-alastair-miller.33231/
Ooops - cortisol!!! #GAP2014


White: CBT normalises cortical response in CFS. CBT is also a physical treatment - mind/body #GAP2014


White: advice: do not pace- CBT more effective for CFS. .....i disagree! #GAP2014


White: 40% ppl who attend CFS clinic do not have CFS #GAP2014


I get so tired that i cant go out to buy food or make it, therefore i dont eat! #GAP2014


White: states that all ppl with CFS can feed themselves. If they loose weight they have an eating disorder..... Yeah right!!! #GAP2014


White: only treatments that have bn successful for CFS derive from psychiatry/psychology #GAP2014


White: puts case forwards for psychiatry in the treatment of CFS #GAP2014
 

Research 1st

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It fascinates me watching the fundamentalists talk about patients being mentally ill (CFS and ME aren't mental health conditions!) and sticking to this myth like an entrenched religious belief, irrespective of advances in science now spanning thousands of published research papers long.

It reminds me of being a voyeur into a strange sect, maybe like something from the film 'Omega Man'.

People with entrenched views, will stop at absolutely nothing to get their way. This is the danger of these people having so much power, and so much financial backing. Perhaps history really never does learn?

When the pathogen and/or autoimmune cause is found, the patients will have spent their whole lives being kept away from society, because of a ruse, because of a rumour. It was that easy. Pure conjecture, no actual fact.

I can't think of anything worse in a democracy. What patients are experiencing, is a form of state sponsored discrimination, based not on science, but on control.

If the patients are de legitimised through non science, then science need never be started. What a tragedy for those who are labelled with ME CFS, their loved ones, and carers. All needless too, and that is the most wicked thing.

Thank God for people like Dr Montoya who are dedicating themselves to biomedical research, infection and immunity and trying to develop a biomarker so there is so hope these dinosaurs will go back to their caves and start nibbling the tundra rather than spouting what is tantamount to disability hatred, but one that is rubber stamped.
 

Research 1st

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Not unless we can find a lawyer interested in this. I did a sweep of "human rights" lawyers a few years ago and there was no interest.

After the NICE Guidelines Judicial Review I'd be very careful taking legal actions. Also that experience may have turned a lot of lawyers off sadly.
Good question.

I would say only if you have evidence of what are classed as proven harm.
E.g. because of doctor X, harm Y occurred to you and here is the subsequent diagnosis....

To prove this, you would need evidence in your medical file (in the UK at least) of psychological or physical events caused by others neglect or lies. Not difficult to prove per se, but you'd need money to start legal action.

What ME CFS patients really need is group legal action, what used to be called a class action law-suit.This takes organisation, money, the will to go through with it, and also health to cope with the stress.

Is this possible? I would imagine paradoxically those with the most evidence of damage (in order to sue) are the most psychologically and physically harmed by the fundamentalists. :thumbdown:

Personally I think unless you find a like minded group of people, all with incredible resilience to all the factors needed to 'win', I doubt it's going to happen any time soon due to the ease in which the suffers sufferance can and will be mocked and doubted as 'real'.(The press would be used against the patients taking legal action). We know who controls the 'science' behind the press of ME CFS.

Yet further down the road, maybe 5 or 10 years once the pathogen is proven, I think patients will come out of the closet and have far less fear of being targeted by the press, the authorities and the medical profession.

LGBT and racial social movements can teach ME CFS patients a lot about how to stick together, and how not to feel shame for a label that is (at the time) perfectly legal for nasty people to slur and defame disabled minorities with, as ME CFS suffers currently experience.

Are there groups of ME CFS patients who have irrefutable evidence in which to take legal action? Perhaps if a trustworthy person, e.g. a famous person offered to be the ring leader for abused patients to put their faith in. Potentially then these poor people would come out of the wood work and expose the extremists who deny their suffering as genuine.

I would definitely agree that denying mental or physical suffering of accepted medical conditions, to the point a person can prove harm, must be against their human rights.

Recently, disabled people are afforded more rights, that they were in the past, so this is a start.
 
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