Who was it that said being in support groups leads to poor outcome?

[chrisb]

As the above response suggests that the quotation may have a wider significance it is probably best for the paragraph to be quoted in full, since the original is not widely available and I would not wish to be accused of unreasonable selective quoting.

"The link between physical activity and well-being has been studied extensively. Hughes et al (1984) found a correlation between fatigue and physical inactivity independent of physical health and fitness, whilst Stephens (1988) concluded that the positive correlation between physical activity, better mental health and lower levels of anxiety and depression (and hence fatigue) occurred independently of physical health status. In an eight-year follow-up study of nearly 200 healthy adults it was shown that lack of activity was independently associated with a two-fold increase in the risk of depressive illness (Farmer et al 1988). Looking at coping strategies, Montgomery,(1983) studied fatigue in a student population. He found significant differences in response to the question "when tired, what do you typically do?". For tired subjects the sensations of fatigue serve as stimulus to reduce their level of activity, acting as a cue to slow down or stop, whilst non-tired subjects tend to ignore similar sensation. Finally, in pain patients' rest is a potent reinforcer of both symptoms and disability (Keefe and Gil, 1986). Inactivity can, and does, cause fatigue. Nevertheless, with the occasional exception (Edwards, 1986; Dobkin,1989), patients with PVFS are usually told from a variety of sources that lack of activity is invariably and permanently a consequence of fatigue. Such advice may be both inaccurate and counterproductive, and may serve to perpetuate the very disability that it is intended to minimise.

………....Any suggestion that the explanations advanced in this chapter seek to blame the patient for his or her predicament are without foundation."

 

[Trish]

Thank you for that quote, @chrisb. It does illustrate why context for quotes is important. It demonstrates in this case that Wessely was falling into the trap of assuming that observations made on physically healthy people about the effects of fatigue can be applied to pwME.

I think it illustrates just how damaging the name CFS has been for us. He completely misses the point that pwME do not have physiologically healthy 'fatigue', we have something physiologically wrong that produces abnormal muscle fatiguability and prolonged recovery. This makes his attempt to extrapolate from healthy people to pwME scientific nonsense and dangerous.

 

[Lucibee]

patients with PVFS are usually told from a variety of sources that lack of activity is invariably and permanently a consequence of fatigue.

I think it's the "invariably and permanently" bit he is objecting to here. But one of those sources is his own. See this figure on the VERY NEXT PAGE:


What does fatigue lead to?

 

[James Morris-Lent]

Based on this logic it seems like you could cure just about any disease, or at least all of the symptoms, with exercise and CBT. Effective medications are valuable only insofar as they are more convenient.

 

[Lucibee]

While we're on Wessely's chapter, I'll note down a few things that stood out (sorry, this is a bit long!).

First was the link with depression/mood disorder:

(p308) Assuming that recovery from viral illness follows a normal distribution from the rapid to the prolonged, the combination of this prolonged, albeit non-pathological, recovery with early vigorous exercise may cause unexpected severe delayed myalgia, and set in motion the rest of the cognitive behavioural cycle we describe later. However, neither too early activity, nor physical deconditioning, is a complete explanation of the myalgia/fatigue experienced in PVFS, since it cannot explain the evidence for central disorder (Lloyd et al., 1988; Stokes et al., 1988; Wessely and Powell, 1989). It is probably that delayed recovery coinciding with a liability to mood disorder is the most likely beginning to PVFS.
This introduces a second cause of pathological myalgia: affective disorder.

There are lots of assumptions in there.

The next bit was on blame (my explanations, taken from preceding paragraph, in square brackets):

(p309) The consequence of such overlap [confusion between symptoms of acute viral infection, mood disorder, and CFS symptoms] may be that the patient (and doctor) blames all ills on the continuing viral infection, unaware of other competing influences. The word 'blame' is used deliberately, as issues of guilt, blame and responsibility affect both patients with PVFS and doctors making the diagnosis.
Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity. It is simple, frequent, and easily accepted. Attributing ill-health to external causes is the 'norm' (Pill and Stott, 1982), whilst those who attribute somatically based symptoms to internal, psychological causes may be unnecessarily disturbed by them (Watts, 1982). It is also beneficial to self-esteem by protecting the individual from guilt and blame. 'The germ has its own volition and cannot be controlled by the host. The victim of a germ infection is therefore blameless. The cardinal attribute of germs is external... There is no malevolence or 'maleficium' involved' (Helman, 1978).
The situation becomes more complex and less clear-cut in a chronic condition. Continuing to attribute symptoms to an external cause continues to maintain self-esteem, and avoids guilt and self-blame (Powell et al., 1990). However, there is a price to pay. The simple explanation may be misleading, and if uncritically accepted may ensure that potentially treatable mood disorder is missed, with disastrous consequences...

There is no doubt in my mind that he sees this as a psychological disorder that has been triggered by an infection (circumstantially), but that the blame lies squarely with the patient (and maybe their doctor).

The next paragraph triggered me to write "wtf?" in the margin (I think I quoted it earlier):

(p310) These issues are raised because orthodox medicine has hitherto been unable to offer an explanatory model for PVFS. Into this vacuum have come a variety of 'alternative' theories - many taking preliminary or dubious laboratory theories and embellishing upon them. The demoralised patient naturally finds comfort in these 'explanatory systems', and may be reluctant to consider comparatively mundane mechanisms such as those raised in this contribution.

Next section on Cognitions goes further:

(p311) We therefore propose that cognitive factors (in this case beliefs about health and illness) play an important part in perpetuating disability. These so-called 'dysfunctional beliefs' act as mediators of dysfunction, as has again been observed in chronic pain - the belief that pain invariably implies disability is a better prediction of the severity of impairment than subjective measurements of the severity of pain (Riley et al., 1988). These dysfunctional attitudes concerning the interaction between rest, exercise and health also affect treatment outcome (Riley et al., 1988).

Further on, he starts polarising:

(p316) As regards practical advice, the mainstay of treatment remains rest, and to wait either for remission or a medical cure. This has been appropriately described as 'therapeutic nihilism' (Bayliss, 1988).

This quote comes from a CIBA Foundation symposium discussion in 1988.

I'll continue in another post - the next section deals with the phrase "all in the mind".

 

[Lucibee]

(p317) Engagement and offer of treatment
At present the approach we favour is usually provided by professionals whose training and background is in mental health [...] the exceptions being general practitioners. There is no doubt that many PVFS patients are hostile to such an approach, seeing it as a denigration of their illness, and, no matter how politely phrased, a way of saying 'it is all in the mind'. No treatment can proceed before this hurdle is overcome.

Un-%^&*-believable! Note that they never say, "we are not saying that it is 'all in the mind'" as they have more recently tried to say - although usually in the context of rejecting cartesian dualism.

One of the many paradoxes of dealing with PVFS is that the 'all in the mind' view is indeed held by many physicians, and may be the reason for referral in the first place. Many doctors, especially those in hospital practice, continue to see those illnesses which they are unfamiliar with, unable to treat, or even unable to find a pathological process for, as 'psychiatric'. They may adopt a punitive attitude towards the patient they have been unable to help. Kirmayer (1988) has pointed out 'if the norms for illness behaviour are contravened or pathophysiological explanations evaded, the patient may be blamed for diagnostic or treatment failures'. Many doctors are also intimidated by patients who have 'researched' their own illness and/or made their own diagnosis. The consequence is, all too often, a psychiatric referral. The patient may have appreciated these motives, and probably shares the common assumptions. It is an understatement to say this is not a propitious beginning to any therapy. Even if the patient does not accept the referral, it may be with the sole intention of demonstrating that they are not mad after all.

He does however say,

We also openly discuss (and reject) allegations, spoken or unspoken, of hysteria, malingering etc.

But dotted throughout this chapter and others (I'll try to track them down) is the implication that PVFS is neither a proper chronic medical condition nor even a proper psychiatric one. Third-class disorder. [I am aware that this may be only my perception - but if I take that implication away, I know others will have done the same.]

Next: Treatment offer

Many will remain wary of any treatment that is called 'psychological'. Before making an offer of treatment it is hence necessary to spend time discussing many of the principles outlined above. [...]
A related problem is that of unreal expectations. Some patients have been told that the only prospect lies in a medical breakthrough, exemplified by the quote 'The hope is that one day a breakthrough will come, and that some substance will be isolated which has the power to zap the ME virus' (Hodgkinson, Women's Journal 1988). Such expectations are not only unrealistic, but also may obstruct real improvements, even if they fall short of 'cure'. A physical analogy is very helpful here. One physician discussing the management of these conditions advocated a pragmatic approach, writing that 'a surgeon can deal with a fracture without making inquiry into the details of the automobile accident during which it occurred' (Allan, 1945). We continue the analogy of being involved in an accident, and that pursuing the car to read the number plate will bring no benefit, as a way of emphasising the importance of the here and now, and that further investigations will serve little purpose. We also acknowledge that although patients usually wish to know why this has happened to them ('Why me?'), definitive answers cannot always be given.

This is the worst analogy I have seen, and shows a stark lack of understanding of why knowledge of the causative agent, and the potential biochemical pathways affected, might be useful. A better analogy would be that your car has broken down, but you are unable to tell the mechanic what is wrong. They will have to work it out for themselves. If someone went to their doctor having drunk an unknown poisonous liquid, it would be essential for the doctor to find out what that liquid was before they could act. If a surgeon is removing a kidney, it is essential for him/her to be told which one to remove.

It is clear that they have decided that even if PVFS was triggered by a viral infection, that that infection plays no further part in perpetuation of the condition, and that all perpetuating factors must therefore be psychological.

 

[Trish]

Thank you for finding those quotes, @Lucibee. I read them with horrified fascination.

But dotted throughout this chapter and others (I'll try to track them down) is the implication that PVFS is neither a proper chronic medical condition nor even a proper psychiatric one. Third-class disorder. [I am aware that this may be only my perception - but if I take that implication away, I know others will have done the same.]

That's my conclusion too. They say it's not a psychiatric illness, it's not a physical illness, it's something different that is both real but not real. It's kind of surprising they don't just come out with it and use the word 'psychosomatic' which is hovering between the lines in everything he writes.
Your term 'third class disorder' is sadly very apt.

 

[NelliePledge]

according to this thread about the Norwegian M E survey the BPS still very much have a downer on ME organisations https://www.s4me.info/threads/the-n...ehabilitation-services-2-300-responders.5293/

 

[chrisb]

There has been a somewhat unexpected development in the matter, discussed earlier in the thread, of Greenberg's suggestion that "patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the "ME Society", which advocates total rest". I said that I had never heard of such an organisation and set out what appeared to be Dr David Smith's view of exercise, which most certainly did not include total rest, and which was effectively "pacing".

Thanks to an observation by @NelliePledge on another thread it seems that the ME Association is also registered under the name the ME Society. It therefore seems entirely possible that Greenberg was referring to the MEA, although it is odd that he would have known of this name, when members did not. If my memory on this is incorrect, it seems that so is that of @Mithriel who appears to be in agreement that total rest was never part of the general advice. I suppose the possibility cannot be discounted that members raised the question from time to time, as members will, or that it was advised as a short term expedient or necessity at the acute stage.

I suppose the answer to Greenberg is that there must have been many thousands of us who did not pursue a policy of total rest, whether or not advocated by the MEA or ME Society, but who are nevertheless ill. It is difficult to understand this apparent mischaracterisation of the situation.

 

[Snow Leopard]

I suppose the answer to Greenberg is that there must have been many thousands of us who did not pursue a policy of total rest, whether or not advocated by the MEA or ME Society, but who are nevertheless ill. It is difficult to understand this apparent mischaracterisation of the situation.

Quite right. A lack of specificity of an association means it is likely not to be causitive. I mean you can't blame total resting, continuing to do the same amount, and everything in between as a specific prognostic factor.

 

[Lucibee]

I now have a copy of Ciba Foundation Symposium 173 for a short while...

Page 248 – The social stigma of psychiatry
The early reports of psychiatric disorders in patients with CFS met with derision by patient support groups (Wessely 1990). In noting the aversion of CFS and ME groups to psychiatry, Wessely (1989) commented that the psychiatrist is frequently portrayed as the villain; the only ‘good psychiatrist is the one who returns the patient to the internist or family doctor saying, “This is not my field: there is nothing I can do”’. While there is ongoing aversion to psychiatry and to any attempts to identify a subset of patients presenting with chronic fatigue syndrome as misdiagnosed primary psychopathology, there has been some move towards accepting the findings as evidence of central nervous system dysfunction.

Wessely. Old wine in new bottles: neurasthenia and ‘ME’. Psychol Med 1990; 20:35-53.
Wessely. What your patients may be reading: ME. BMJ 1989; 298: 1532-33.

 

[Inara]

I now have a copy of Ciba Foundation Symposium 173 for a short while...

Psychiatry doesn't have a negative stigma due to nothing. There are almost 200 years of history. This is not restricted to a subgroup of ME/CFS patients (not all reject Psychiatry). Psychiatry is well aware of this fact, that's why they're constantly choosing new names and words that they know sound nicer and more acceptable. So they keep to their manipulative manner.

 

[alex3619]

Why is it t

that's why they're constantly choosing new names and words that they know sound nicer and more acceptable.

Yes. New bottles, same snake oil.

 

[Dx Revision Watch]

I have a question;

In 1969 (or whenever the WHO classified ME as neurological) were there any ME lobby groups to lobby them to do so?

History of PVFS, BME and CFS in ICD:

https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf

A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases

Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, CDC archive document, March 2001.

This document provides a summary of the classification of Chronic Fatigue Syndrome in the International Classification of Diseases, ninth and tenth revisions, and their clinical modifications.

 

[Dx Revision Watch]

I have a question;

In 1969 (or whenever the WHO classified ME as neurological) were there any ME lobby groups to lobby them to do so?

The WHO did not classify Benign myalgic encephalomyelitis under the Diseases of the nervous system chapter [Edited for clarification: in the Tabular List] until the release of ICD-10. ICD-10 was endorsed in May 1990.

Page 2 of:

A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases

Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, CDC archive document, March 2001.

"ICD-10 WHO published ICD-10 in 1992 and included many modifications, among them relocation of some diagnoses to different chapters within the classification. WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3. The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar."


The ME Association was founded in 1976.

Action for M.E. was founded in 1987 and originally known as "The M.E. Action Campaign". The name was changed to "Action for M.E." in 1993.


So when ICD-9 was being revised for ICD-10, both The MEA and the organization later known as "Action for M.E." were in existence.

When ICD-10 was in development, this would not have been undertaken as a public process, as ICD-11 has (to an extent) been. Also, the ICD-10 online browser is a relatively new entity. Prior to the online browser for viewing the ICD-10 Tabular List, stakeholders would have needed access to a print edition of the Tabular List. (Likewise the ICD Alphabetical Index, which is still not made available, online, by the WHO.)

So there would not have been the degree of public stakeholder awareness, interest in and participation in the revision of ICD-9 to ICD-10, as there has been for the revision of ICD-10 for ICD-11.

I did not become involved in ME advocacy until 2002, at which point, ICD-10 had been in use in the UK since 1994 and I don't know what, if any, involvement either the MEA or what was then known as "The M.E. Action Campaign" had in relation to the development of ICD-10 or what involvement any U.S. or other international ME orgs might have had in its development. And for the U.S., they continued to use ICD-9-CM up until October 2015.

 

[Wonko]

Thank you @Dx Revision Watch - but I was sure I had seen 1969 quoted, and I had

A simple google ("myalgic encephalomyelitis who 1969") found this as the first result

https://www.ncbi.nlm.nih.gov/pubmed/23480562

Abstract
INTRODUCTION:
The World Health Organization has classified myalgic encephalomyelitis (ME) as a neurological disease since 1969 .........

ME.pedia also states 1969
https://me-pedia.org/wiki/Myalgic_encephalomyelitis

Myalgic Encephalomyelitis (ME) is a chronic, inflammatory, primarily neurological disease that is multi-systemic. Frequently triggered by a viral infection, it affects the central nervous system (CNS), immune system, cardiovascular system, endocrine system, and musculoskeletal system.[1][2] It has been classified by the World Health Organization (WHO) as a neurological disease since 1969[3][4]

ETA

Wikipedia states it was introduced in ICD-8
https://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-8

ICD-8[edit]
Since its introduction into the eighth edition of the WHO ICD-8 in 1969 (code 323), (Benign) myalgic encephalomyelitis has been classified as a disease of the central nervous system.[52]

and the reference [52] is given as

International Classification of Diseases. I. World Health Organization. 1969. pp. 158, (vol 2, pp. 173).

I have no idea what is correct, I am merely explaining why I thought 1969 when you are saying decades later.

 

[Dx Revision Watch]

Thank you @Dx Revision Watch - I was sure I had seen 1969 quoted...

BME was not classified in the Tabular List until ICD-10 (1990).

CFS was not classified in the ICD-10 Tabular List. It is included only as an Index term, in ICD-10, and remains an Index term for ICD-10:


CDC document:

https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf


"ICD-9 The International Classification of Diseases, ninth revision (ICD-9), was published by the World Health Organization (WHO) in 1975. WHO did not make revisions to the classification between major updates, which usually occurred every ten years. The term “chronic fatigue syndrome” did not have a specific code in ICD-9 nor did the term appear in the alphabetic index of ICD-9. The only entry in the alphabetic index of the ICD-9 was “Syndrome, fatigue” and referenced code 300.5, Neurasthenia, a condition classified in Chapter V, Mental disorders. The term “benign myalgic encephalomyelitis” appears in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions. It should be noted that while many terms are listed in the alphabetic index, all of the terms may not appear in the tabular list of the classification. This is a standard convention of the ICD.

"ICD-10 WHO published ICD-10 in 1992 and included many modifications, among them relocation of some diagnoses to different chapters within the classification. WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3. The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar."

"ICD-9-CM For morbidity data the United States uses the International Classification of Diseases, ninth revision, clinical modification (ICD-9-CM), a clinical modification of ICD-9. ICD-9-CM has been used in the United States since 1979 and has an annual update process that has been in place since 1985. The update process begins with the convening of the public forum, ICD-9-CM Coordination and Maintenance Committee. Proposals to modify the classification are presented and discussed during these public meetings. Information about future meetings of the ICD-9-CM Coordination and Maintenance Committee may be found on the NCHS website at http://www.cdc.gov/nchs/about/otheract/icd9/maint/maint.htm.

"In 1990, a recommendation to create a specific code for chronic fatigue syndrome was presented. At that time, there was no consensus about the etiology of the syndrome, which is needed to accurately classify a condition in the ICD. A new code could not be created because of this problem; however, a modification to the alphabetic index was made to direct users of the classification to code 780.7, Malaise and fatigue. This is the same code used to identify cases of postviral syndrome. This change became effective October 1, 1991. In 1998, subcategory 780.7 was expanded to include new five-digit codes. The new codes created included code 780.71, Chronic fatigue syndrome. The placement of this condition in this category was consistent with the WHO version of ICD-9 and with its placement within ICD-9-CM."

 

[Dx Revision Watch]

From the Prof Hooper document:

"Benign myalgic encephalomyelitis (ME) has been classified in the International Classification of Diseases (ICD) as a neurological disorder since 1969, when it was include in ICD-8 at Volume I: code 323: page 158 and in Volume II (the Code Index) on page 173. (ICD-8 was approved in 1965 and published in 1969)."​

However, code 323 in the ICD-8 Volume 1: Tabular List was:

323 Encephalitis, myelitis and encephalomyelitis

not Benign myalgic encephalomyelitis.


You'll need to pull up the cached version.

http://moira.meccahosting.com/~a000849d/DefintionsPages/DefinitionsArticles/Hoopersdescription.pdf

The Terminology of ME & CFS

By

Professor Malcolm Hooper

(...)

"Benign myalgic encephalomyelitis (ME) has been classified in the International Classification of Diseases (ICD) as a neurological disorder since 1969, when it was included in ICD-8 at Volume I: code 323: page 158 and in Volume II (the Code Index) on page 173. (ICD-8 was approved in 1965 and published in 1969).

Prior to 1969, the term benign myalgic encephalomyelitis (ME) did not appear in the ICD, but non-specific states of chronic fatigue were classified with neurasthenia under Mental and Behavioural Disorders.

Benign myalgic encephalomyelitis (ME) was included in ICD-9 (1975) and is listed in Volume II on page 182.

The term "Chronic Fatigue Syndrome" was not introduced by Holmes et al until 1988 and therefore did not appear in the ICD until 1992*, when it was listed as an alternative term for benign myalgic encephalomyelitis (ME). Another alternative term listed is Post-Viral Fatigue Syndrome."

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

*Ed: In the ICD-10 Index.

You will see references on Wikipedia to CFS having been added to ICD-9. But also discussion on the Talk Page, that this was for the U.S. adaptation of ICD-9 (ie, not added to the WHO's unmodified ICD-9.)

 

[Dx Revision Watch]

Can anyone show me a listing for Benign myalgic encephalomyelitis or Myalgic encephalomyelitis in the WHO's unmodified ICD-8, either Tabular List or Index, that isn't:

323 Encephalitis, myelitis and encephalomyelitis

and that is not a Wikipedia reference or MEpedia referencing Wikpedia?

Note the Wikpedia reference is

International Classification of Diseases. I. World Health Organization. 1969. pp. 158, (vol 2, pp. 173).

which does not pull up a copy of ICD-8 where the listing can actually be viewed.

I doubt whether MEpedia has been able to access a copy of the unmodified ICD-8 to check the Wikipedia reference.

 

[Wonko]

@Dx Revision Watch

I am not saying you are wrong, I was merely explaining why I posted 1969 in my post you quoted, in that every source I have seen, other than what you have posted today, says 1969 for ME WHO neurological, including the BMJ. For all I know they are ALL using the same source which could well be, and seems as if it may be, wrong.