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

currer

Senior Member
Messages
1,409
Incapacity benefit used to be the basic benefit for disability that led to inability to work.

Those with insufficient working tax credits would need to claim a means tested benefit - Incapacity benefit as it used to be.

Only those very disabled by ME could attempt to claim the extra money provided by DLA. It is a difficult benefit to get. You would need to be pretty much housebound.

6X more on IB than DLA sounds about right to me.
 

Dolphin

Senior Member
Messages
17,567
In the AfME/AYME survey published May 2008, these were the figures:
Welfare benefits
1683 of the 2763 respondents were in receipt
of at least one of the benefits listed (Incapacity
Benefit, Severe Disablement Allowance, Income
Support and Disability Living Allowance).

1080 people did not answer this question, so it
is possible that 1080 are not on benefits.

However, only 861 ticked no to all four
though so this figure is inconclusive.

Of those who were receiving benefit, some
were receiving more than one.

1133 people were receiving Incapacity Benefit
(IB)
, just over 106 were receiving Severe
Disablement Allowance, 320 were receiving
Income Support and 1015 were receiving
Disability Living Allowance (DLA)
.

http://www.actionforme.org.uk/Resou...ments/get-informed/ME 2008 What progress.pdf
 

oceanblue

Guest
Messages
1,383
Location
UK
In the AfME/AYME survey published May 2008, these were the figures:
Thanks, that's really helpful.

A couple of caveats:
1. As with local groups, members of AfME and AYME are likely to be more severely affected than average
2. 21% had onset aged 17 or under and a further 14% were aged under 25 at onset; those under 17 won't be eligible for IB having never worked, and a good proportion of those under 25 eg students might never have worked, or not worked long enough at onset to qualify for IB.

Even so, I still think the survey results make the 6x figure unlikely.

Also, ME is predominantly a female illness and more women than men don't work, particularly because of child care (69% in that survey were aged 40 or under at onset), which would also be expected to reduce the proportion eligilbe to IB relative to DLA.
 

Dolphin

Senior Member
Messages
17,567
PDW & co tend to make out that if GET done the right way, aka the way they do it in Barts, it is completely safe. Thus, this tweet is interesting.

@RichardCann76

I personally know one ME patient who has been severely affected for 10 years after being put on an exercise....program at barts. I'd imagine there are many others.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
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.
The last thing we need to do, is to sling their own shit back at them. You can't fight psychobabble with psychobabble.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Dolphin,

Plus the comments that appeared (I think in the Guardian) online after PACE from participants

Barts use AFME feed to feed that propaganda that this treatment is safe when done "properly" in response to the patient surveys that show harm done.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
White is staring another trial:

http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=12053
GETSET
Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome/myalgic encephalomyelitis: a randomised controlled trial in secondary care

I think this has been reported before so doesn't warrant a new thread, but this is a proposal site with details. He specifically addresses advocacy opposition to his claims.
 

Dolphin

Senior Member
Messages
17,567
Peter White speaking at the Royal Society of Medicine in 2008.
He talks about these slides at around 26:30-27:30 in his presentation: http://www.rsm.ac.uk/academ/video.php

He has used the ME Essential slide (and probably the other slide - I have been paying less attention) in several other talks since then.

I've copied a transcript below

PeterWhiteSlide1of2_zpsf97b51e0.jpg


PeterWhiteSlide_zpsa729a530.jpg


"...what message -- and they also said at that conference - emphatically - this an organic - what's that word mean? - incurable - neurological disease - OK - now - it may be right - it may be wrong - but what message does this give our patients - now - here is the latest edition you've seen outside - of ME Essential - there are two levels to understand this picture - ONE - brave attempt of a woman to cope with a severe disabling incurable disease - OK - trying to lead a normal life in spite of being ill - but what message does that give our patients when we say to them - you have incurable - neurological - disease - is it more useful - a message for our patient - to say that -- or to say - Graded Exercise Therapy is a safe and effective treatment if it's done properly - because the two statements cannot be - this moment - joined together .."

It is interesting that if he thinks ME is not incurable because of GET, why won't he publish the "recovery" outcome measure, one of the predefined secondary outcome measures, from the £5m PACE Trial.

http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
The information you have requested is not held. The requested data​
relating to the recovery rates and positive outcomes do not exist. That is​
to say that such analyses have not been done and there is no intention to​
do so. The reason for this is that the analysis strategy has changed from​
the original protocol as described below.​
 

Dolphin

Senior Member
Messages
17,567

biophile

Places I'd rather be.
Messages
8,977
Does this mean that Peter White has undeclared COI?

Or is this just an example of the COI he already declared in the PACE papers?
 

Dolphin

Senior Member
Messages
17,567
Does this mean that Peter White has undeclared COI?

Or is this just an example of the COI he already declared in the PACE papers?

One could say it's already covered by the PACE Trial declarations.
However, not every doctor who has been paid by insurance companies would make such a recommendation in with such data, I would guess.
(also with many doctors, if they have said they have done paid work for insurance, it would only refer to seeing a patient for an appointment I would think).
------
With some conflict of interest declarations, one has to quantify the money obtained. It might be interesting to see such figures for PDW over a number of years.
 

biophile

Places I'd rather be.
Messages
8,977
A mere Declaration of COI does not automatically mean that COIs are being kept under proper scrutiny and control.

Here is a blog on the paper (which is about DSM COI):

http://www.drbriffa.com/2012/04/27/...-of-interest-make-make-bias-worse-not-better/

The piece cites arguments from ‘decision scientist’ George Loewenstein and his colleagues which apparently show that “disclosure can actually lead doctors to give biased advice, either through strategic exaggeration (whereby more biased advice is provided to counteract anticipated discounting), or “moral licensing” such that advice is legitimized because advisees “have been warned” (that is, caveat emptor or “buyer beware”).”

According to their experiments, bias is considerably greater when conflicts of interest are disclosed. In addition, it turns out that patients think their doctors would never intentionally mislead them and tend not to discount advice in light of conflicts. In this way, it is claimed, “disclosure policies will never be the solution and are very likely exacerbating the problem of bias in medicine.”

Perhaps the real remedy here is to make it mandatory for panel members to be free of conflicts of interest. It is sometimes claimed that this would not work, as such people with appropriate experience would be difficult to find. If this is true, it speaks volumes as to how effective the pharmaceutical industry is at identifying potential ‘key opinion leaders’ and striking deals with them.

I doubt the insurance industry is much better. How common is working for the insurance companies? Is it just mere coincidence that all 3 of the PACE Trial PI's have officially declared COI relating to the insurance industry?
 

Dolphin

Senior Member
Messages
17,567
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)

-------------------------------------------------
Maarten Maartensz has critiqued this here:
http://www.maartensz.org/me/RESOURCES/SCIENCE/MM/NL100129a.htm

It's a bit ranty perhaps so took me a few goes to finish reading it.

But the material deserves a rant/to be criticised!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Maarten Maartensz has critiqued this here:
http://www.maartensz.org/me/RESOURCES/SCIENCE/MM/NL100129a.htm

It's a bit ranty perhaps so took me a few goes to finish reading it.

But the material deserves a rant/to be criticised!

I am making many of the same points. I wish I had read this back in 2010. I do draw the line at making conclusions about others mental states, I think most of the points on irrationality can be made purely objectively. The objective evidence is enough in itself.

However I think the discussion of medical sadism might be satirical, pointing out the failure they make in reasoning. What do others think about that?

This piece by Maarten exemplifies what I am aiming at in section two of my book, with section one being on pseudoscience. However the following sections will be based on much broader analyses, and it will be followed by sections on possible solutions.
 
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