Psychiatrist Peter White at the Royal Society of Medicine 2008 - Defining CFS/ME

There are highly puzzling aspects to this. He essentially presents himself, as a generalisation, as a splitter, as opposed to the lumpers, Wessely and Sharpe.

Yet he was one of the chief architects of the Oxford criteria meeting-at least he is credited in the paper with having assisted with funding. Arguably it was the lumping, if not lumpen, philosophy of those criteria which did most to set back meaningful work.

The PACE trial might have presented an opportunity to investigate treatment on diverse groups, but again it was merely a lumped assortment.

There is something in his approach that needs explaining.
 
The confusion of criteria. White says he is a “splitter”, but still argue that one should use criteria that lump all together. The Canada criteria are useless to White, actually specifying don’t secure homogeneity, but the opposite. That is at best a questionable statement. White himself advice use of vague criteria and end up with an even worse result, a catastrophic result. You may catch all fatigued people “in the world” the White-way of doing things, but that is exactly not the point, when wanting to differ ME from CF(S).

In lack of clinical biological markers the question is, how can we diagnose as correct as possible? Should one try to make a diagnose after strict criteria’s or vague, both with some possible margins of error. If you acknowledge or have some curiosity and/or an open mind that ME is something very different from CF(S) the answer is a given, but if not, well there is the seed to decades of scientific and human frustration.

There is a lot not to understand here, a lot to discuss and disagree about, but the deliberate unwillingness to even try to diagnose properly, that is something I personally never will understand.
 
He is SO 'authoritative' so slick in delivery with SO much innuendo and suggestibility.
He actually reminded me of David Irving in the David Hare written drama documentary 'Denial' screened two days ago and worth watching.
It seems Irving was of a similar personality and had a similar persuasive rhetoric!
I found the court scenes riveting and Irving's come up-ance at the end a cause for hope that Tuller et al will dispatch the BPS in a similar fashion.
 
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Interesting bit about ME and the 1978 conference:
"What is ME? It was first described in 1956 by [Inaudible] Acheson in a Lancet editorial. And he was describing a different thing that what I've just been talking about. He was describing epidemics of fatigue with [Inaudible] neurological signs and symptoms, something he later regretted he did because he thought he confused them [Inaudble]. He probably did. So let's give you a bit of Melvin Ramsay. This is the royal free epidemic of 1955. This is Ramsay: "74% showed objective evidence of involvement of the central nervous system." I'm not giving you the whole picture, just a flavor. Heavy involvement of the cranial nerves, objective evidence of the brain stem and spinal cord involvement, paralysis, not just the fact but other areas, in just under 20%.

In other words, this is a different illness. This is not the same. do you see your patients with facial paralysis? Do you make a diagnosis of CFS if your patient has facial paralysis? So I'm suggesting that the original definition of ME is different from what I've just been talking about.

How did this happen? I'm afraid we're responsible. There it is. 30 years ago this very month, I think it was in this building it didn't look like this in those days, we did it. We transmogrified, we changed, we transposed epidemic ME into endemic ME. So we actually got a definition of a different illness that we transposed onto this illness. So I think this is where our problem comes from."
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I think there's some truth into this. I've always found it helpful to think of 3 types of ME.

1) The first one is the one described in the epidemics, which had a more obvious infectious onset and neurological signs.

2) The second one is the mostly endemic form of ME, as described by Ramsay in his little book and the London criteria. It's ME we're most familiar with and the version that started the patient organizations.

3) The third one is the ME described by the international consensus criteria in 2011. This seems quite different from the older descriptions of ME and seems influenced by 20 years of research into CFS.
 
Interesting video.

For me it breaks into three parts.

In the first White talks about mental and physical and gets the whole thing back to front. Psychiatric disease is not disease caused by 'psychological factors', it is disease that affects thoughts. And we have every reason t think it is physical. White states clearly the back to front approach to Descartes. He is the Cartesian - saying that mind and body interact.

The second part is about criteria and I think White is pretty good on this. Basically he is saying that ME/CFS should be defined by disabling fatigue and PEM. We should forget all the other symptoms because there is no good reason to think they help. People like them because they suggest the illness is 'more physical' or more neurological or more immunological. But none of this is relevant to actually deciding who has the illness. If people with more of these symptoms are more likely to have psychiatric problems as well then it doesn't help.

He says the NICE criteria are a good place to start in making a diagnosis and that seems fair to me - they are supposed to be where to start considering ME/CFS. They are not defining criteria and nor should they be.

The third part is about different physiological subtypes with autonomic or HPA axis changes. This is where I think White wanders into pseudo physiology and soft data. He is pandering to the desire for physical explanations without being critical enough about whether the data mean anything.
 
Sly Saint said:
eta2:
transcript of first 6 minutes by Suzy Chapman
https://dxrevisionwatch.files.wordpress.com/2015/11/rsmpeterwhitetranscript5.pdf
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Note that in 2008, White says:

"5:40 But actually, if you are more neutral - you don't know whether it's physical or mental, you want to use a more neutral term - well you have got something you can use in ICD10, in the "R Chapter" - "Chronic fatigue, unspecified" which helpfully includes [R53.82] Chronic fatigue syndrome NOS."


Not so.

There is no "R53.82 Chronic fatigue, unspecified" or "R53.82 Chronic fatigue syndrome NOS" in the WHO's ICD-10 - which is the version used in the UK.

There is only R53 Malaise and fatigue, which has exclusions for fatigue syndrome (F48.0) and fatigue syndrome postviral (G93.3).


The entities:

R53.82 Chronic fatigue, unspecified

and its inclusion:

Chronic fatigue syndrome NOS

Excludes1: postviral fatigue syndrome (G93.3)


are exclusive to ICD-10-CM, the US specific, clinical modification of the WHO's ICD-10.


In 2008, when White gave this presentation, the proposed content of the much modified ICD-10-CM was still in draft and had yet to reach the federal rule making stage. The content of ICD-10-CM was not implemented until October 2015.

So these two terms that White offers as more "neutral" terms had not even been implemented in 2008.

Either he had mistaken a copy of the draft release of the Tabular List for ICD-10-CM for the WHO's ICD-10 Tabular List or he was scratching around to support his case and chose to overlook that these two terms were from the US clinical modification - which a) wasn't applicable to the UK and b) had yet to be adopted and implemented by the US.


He also says:

"If not, one of these three: if you think that somehow, psychological factors have some role to play in your patient's diagnosis or in their illness, should you use one of these diagnoses, including some beautiful, historical, interesting syndromes such as Effort syndrome, Da Costa syndrome, whatever "Neurocirculatory asthenia" was in those days..."


Prof, Sir David Goldberg (now in his mid 80s) was still using the term "effort syndrome" (an ICD-10 index term coded to F45.3 Somatoform autonomic dysfunction but not included in ICD-11) in WHO ICD-11 field study protocols, as late as 2012/13 [1].

1 MASTER PROTOCOL Depression, Anxiety and Somatic Symptoms in Global Primary Care Settings: A Field Study for the ICD-11-PHC Version 2 for WHO, Research Ethics Review Committee (Amended per ERC Review Summary 14/3/2012) Approved 11 April 2013 Protocol ID RPC 565
http://www.psychiatryresearchtrust.co.uk/protocols/Master%20Protocol_ICD_11_PHC_Field_Study_2.pdf

Extract:

"Patients with conditions such as fibromyalgia, irritable bowel syndrome and effort syndrome ARE eligible for this part of the study, as are patients without any such label for their symptoms."
 
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Thanks Suzy .It is very helpful to have the resources linked . The first of those rather confirms my view that too much may be made of the obvious neurological features for distinguishing epidemic from sporadic cases:

In a minority of cases frank neurological signs can be detected by careful clinical examination: there may be nystagmus, diplopia, myoclonus, bulbar weakness, motor weakness, increased or decreased tendon reflexes, disturbances of the sphincters, and extensor plantar responses.27 Fasciculations, cranial nerve lesions, and extrapyramidal signs have also been reported.

The cases covered a spectrum. It is not at all clear that some of the cases within epidemics did not resemble sporadic cases, which themselves cover a broad spectrum
 
Attempts to discredit the 1978 conclusions started long before PDW. There was a supposed epidemic in Southampton in 1979 written up in 1980 which looked to have very little to do with ME. All bar one of the patients were supposedly recovered within two months. The other was found to have a known treatable condition. The four authors expressly attempted to rebut the 1978 conclusions. They blamed heightened anxiety in a suggestible population, and altered medical perception, following a few viral cases. This appeared to be a deliberate attempt to muddy the waters.
I will restrict criticism to authors of the paper and (pace @Jonathan Edwards) not those otherwise associated with it.

May PGR, Donnan SPR, Ashton JR, et al. Personality and
medical perception in benign myalgic encephalomyelitis.
Lancet 1980; 2: 1122-1124

EDIT
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(80)92552-0/fulltext
In an outbreak of benign myalgic encephalomyelitis in a girls' school all the residential pupils, both those affected and those unaffected, were investigated. Special virological tests were essentially negative, but it seemed that a few girls had had a viral infection. Psychological testing showed that among younger girls the patients were more neurotic than the others. Girls with various disorders were found to have been classified as having the same disorder, because of what has been called altered medical perception. The conclusions of an international symposium on this condition were not substantiated.

(The cryptic comment is due to the fact that thanks are proffered to inter alia Dr J Edwards of Colindale Public Health Laboratory)
 
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chrisb said:
In a minority of cases frank neurological signs can be detected by careful clinical examination: there may be nystagmus, diplopia, myoclonus, bulbar weakness, motor weakness, increased or decreased tendon reflexes, disturbances of the sphincters, and extensor plantar responses. Fasciculations, cranial nerve lesions, and extrapyramidal signs have also been reported.
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I have had all these symptoms despite being a sporadic case. I can't be the only one here. For instance, the bulbar weakness with thick speech would come on when I was exhausted. After a period when this was happening almost daily I developed a slight droop to the left hand side of my face which is more obvious when I am in a flare. It meant I could no longer play my flute.

I thought that when I saw a neurologist these things would be taken seriously but I had a terrible experience (that left me with mild PTSD) If they were taken seriously at all it was to dismiss me as FND.

The problem may be that they were not continuous - the double vision would come and go but to me this goes along with most ME symptoms - worse after exertion.

Remember, the people in the epidemics had medical access that most of us did not get in the early stages of disease.
 
@Mithriel I think you may have misunderstood my point. I may not have been clear. I do not for a moment doubt the existence of these symptoms in some cases, both epidemic and sporadic. My point was that the absence of these features does not rule out the diagnosis and their absence in many modern patients is not, in itself, indicative that the disease has changed. The epidemics contained a spectrum of illness, not all, in all probability, described in the currently available literature.
 
The doctors who were there at the epidemics were very knowledgeable about enteroviral disease. The key to understanding polio was that many people were infected with the virus but only some developed the complication of polio. ME was seen as a similar complication of an enteroviral infection.

Previous exposure, inoculation to polio, different living conditions, may all impact the expression of the disease.

Though I think that neurological involvement is seriously underdiagnosed nowadays.
 
I would like to go back to the comment by PDW that the epidemic cases were different to the modern sporadic cases and that the problem started with the 1978 meeting.

It could be said that it is essential for the BPS followers to assert the distinction. Wessely, Hotopf and Sharpe are on record as saying of the LA and Royal Free cases that: "Jenkin's conclusion seems the most reasonable 'the majority of cases were a hysterical reaction to a small number of poliomyelitis cases among the staff' ". (Chronic Fatigue and its Syndromes 1997 @p129) The fact that this was not Jenkin's conclusion, at least in the document cited, which is all there is to go on, has been discussed elsewhere, and is not relevant to the matter in hand.

It is one thing to say of the dead that their illness was hysterical in nature. It is something else to say it to the living, who may well hold strong views on the subject. The argument that, ME was mass hysteria, you are not hysterical, you nevertheless have ME, is somewhat fraught. Having argued for the one it was inevitable that they should seek to distinguish the cases.

The dismissal of the epidemic cases seems premature. An epidemic is an artificial construct, in effect both a collective noun to lump together a number of cases, and also an assumption as to similarity and aetiology of those cases. The word may perhaps fulfil other roles. There needs to be analysis of the use of the term epidemic before the cases can be dismissed.
 
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