Oxford criteria - should papers using it be excluded

This is a subject that has been raised a lot, so I thought it might be good to have a thread.

I only recently started looking into it a bit further than the basic diagnostic criteria.
see https://www.s4me.info/threads/main-diagnostic-criteria-and-guidelines.189/

The actual
"Report of a consensus meeting held at Green College,Oxford 23 March 1990"

ie A report--chronic fatigue syndrome: guidelines for research.
Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, Edwards RH, Hawton KE, Lambert HP, Lane RJ, et al
J R Soc Med.
1991
Link to article

raises a lot of questions.

A few things (apart from the obvious omission of PEM, and the contributors including Sharpe, Wessely and White)

"
Aims: The aim of the meeting was to seek agreement amongst research workers
on recommendations for the conduct and reporting of future studies of patients
with chronic fatigue."

"
Chronic fatigue syndrome(CFS)
(a)A syndrome characterized by fatigue as the principal symptom.
(b)A syndrome of definite onset that is not life long."

The introduction of PIFS (post-infectious fatigue syndrome):
"
In reporting studies it should be clearly stated which of these two syndromes is
being studied. "

(Is PIFS included anywhere else as a subtype of CFS?)

I have tried to find studies that specify they are on PIFs but have only found this one
surprisingly from last year (I think there is a thread on it) :
http://www.meresearch.org.uk/news/experiences-of-pifs/
http://www.meresearch.org.uk/news/the-real-experience-of-fatigue/

and this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4662830/

Need to go and read some more

(I think Keith Geraghty has been looking at this issue(?)).

 

Your highlighting of the "not lifelong" is interesting. On its own it could mean a condition not present at birth, but, when an onset is specified, it must mean that the disease is cured before death. This being the era of evidence based medicine it would be interesting to see the evidence.

 

It is interesting to note the date of the meeting-23 March 1990, which is earlier than I had imagined. Given that papers had been in circulation between participants, preparations must have been ongoing since at least mid 1989. Just the time that the minds of Wessely and White had turned to neurasthenia.

 

I always took the not life long to mean it developed at some point and wasn't present at birth.

I think it is also the case that not all the people at that meeting or involved in the guidelines were of the opinion that ME is psychosomatic.

 

In terms of excluding Oxford criteria papers. I'm not sure the case is clear in fact I think I'm against it.

The studies using Oxford tend to be poor quality and hence have better results on subjective outcomes but the argument should be about the methodology not the inclusion criteria. If we were to down grade the reliability of the subjective outcomes or use the more objective ones then the Oxford studies wouldn't be positive.

I think there is a valid argument what we are unsure about what patients they are studying but I'm thinking it is irrelevant given the poor other pieces of poor methodology and results once spin and outcome switching is removed.

I would be in favour of removing any study outcomes using the CFQ because it is so bad I believe any measures on it are meaningless!

 

They have had positive objective outcomes using Oxford, involving CPET scores. Hence Oxford itself is a substantial problem.

 

My point was for trials like PACE which basically had poor results and a meaningless methodology gives a more obvious reason to dismiss results than a discussion over criteria which will always remain somewhat subjective because we have no understanding of disease mechanism.

Do they? Does that work have a solid methodology. If it does I think it is interesting in terms of understanding differences with other CPET work. The question comes to mind is are the results different for a given subset of patients and what is it that characterised the differences in terms of criteria. If the stats show some differences then the people finding them should put the effort in to try to work out why. In this case that would give more information about the different criteria.

 

No major flaws that would be easy to attack, from what I recall.

 

I thought I'd post this from the BMJ on the development of Oxford:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1662608/pdf/bmj00172-0013.pdf

I wonder who this unnamed psychiatrist was?

I often see Wessely praising Clare.

 

I had often wondered about the degree of consensus. There does not look to have been much.

This Wessely paper from 1989 is also worth reading to understand the background better

https://www.researchgate.net/public..._encephalomyelitis_A_warning_discussion_paper

EDIT This paper is most informative as it makes explicit the reasons for the lumping process.

 

The link isn't working at the moment @chrisb

 

https://www.researchgate.net/public..._encephalomyelitis_A_warning_discussion_paper

 

I agree the CFQ could be the 'weakest link' http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-4#post-828462

9 of the 21 who attended were in psychiatry or psychology, 6 were research scientists, there were few non-psychiatric clinicians in attendance, who spend at least half of their working day with M.E./CFS patients. Another 6 did not attend the meeting although it does say they 'contributed'.

This reminds me of the advice given to Steven Holgate (CMRC? or MEGA) by Simon Wessely about the 'sprinkling' a few biomedical researchers to add credence.

Two other concerns:
Inclusion of
"
Other psychiatric disorders (including depressive illness, anxiety disorders, and hyper-ventilation
syndrome) are not necessarily reasons for exclusion."

and the whole PIFS thing; PVFS already existed(?) and was regarded as almost a precursor to a lot of people getting ME so why 'exclude' them.

SW:
"
poor research design may significantly lessen the validity and usefulness of potentially exciting discoveries."

eta:
from IinME "neurological symptoms of the illness disqualify patients from being included"

Article in independent "but they exclude people with physical signs of organic brain disease or neuromuscular disease: precisely the sort of symptoms found in people with a neurological disease such as CFS/ME."

eta2:
"Estimates of the numbers of cases of CFS/ME in the population vary according to the criteria used. The liberal 1994 Oxford criteria produced an estimate of 2.6% of primary care attendees, but this figure almost certainly includes many patients who were also
either anxious or depressed.30 Conversely, the 1988 "excessively restrictive" criteria(these criteria excluded psychiatric disorders) produced an estimate of 0.1%.31"
https://www.google.co.uk/url?sa=t&r...RP98-107.pdf&usg=AOvVaw1UERIc9GFoED1IEYYkTSn5

 

I especially liked that bit.

 

I think James Mowbray was on the list and as I understand it he believed ME was a viral infection but I don't really know what was going on then as I wasn't involved. Yes I think it was trying to include a few others and I wondered if the PIFS thing was to keep them happy. But its history I suspect we will never know.

 

Having read that Discussion Paper by Wessely the answer to the original question is a definitive "yes". I had not before quite understood the extent to which the admixing of PVFS patients with those with psychiatric diagnoses was a deliberate act , done with eyes wide open, purely on the supposition that as both groups could use the same word to describe part of their symptoms, therefore they must have the same condition.

I am appalled at the apparent pusillanimity of the physiological specialists at the conference. Parish and Shelokov had the balls to resign from the CDC charade.

 

I actually know someone who was involved with some of the high up talks about ME/CFS back in the day.

They removed themselves from the situation because the direction things were taking became very obvious. This person felt their voice was largely being ignored and didn't want their name used to help "rubberstamp" the conclusions.

ETA : interestingly the same person once remarked that, although SW saw patients with the same diagnosis, SW's description of his patients/patient group were completely at odds with my acquaintance's patients. They reckoned it was hard to believe they were patients with the same diagnosis.

 

This is slightly off topic as it is not directly related to the Oxford criteria per se, but........
"Letters to the Editor
CFIDS Chronicle Summer 1994:77-79 Simon Wessely Follow-up(to article in CFIDS Chronicle Spring 1994 “The Views of Dr. Simon Wessely on M.E.:Scientific Misconduct in the Selection and Presentation of Available Evidence?”)"

http://www.meactionuk.org.uk/MW/1994/cfids-chronicle-summer-1994-wessely-response.pdf

"
On 12 May 1994, Dr. Wessely gave a lecture at The Institute of Psychiatry called “Microbes, mental illness, the media and ME: the construction of disease.” Some of Wessely’s comments, which clearly express his views on ME, follow:

“I am going to talk not about an illness, but about an idea ... I will argue that ME is simply a belief that one has an illness called ME. ... The label [ME/CFIDS] spread with even greater alacrity in the States and it is now firmly established. Why?”...“What lies behind all this talk of viruses and immunity?... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... these links are made entirely explicitly in the States.” ... “Does it really matter if the 5-HT neurotransmission is enhanced (that’s CFS) or suppressed(that’s major depression) ..
. what’s a little up-or down-regulation among friends?” ... “Depression is not the only
threat facing the self-esteem of the ME patient ... there is another condition with which ME might easily be confused, and it is hysteria.”

eta: also not directly relevant but still of interest, back in the day when the Lancet were not so easily swayed:

"Frustrating Survey of Chronic Fatigue Lancet vol 348 12 Oct 1996 p971

Last week, three UK Royal Colleges of medicine produced a report entitled Chronic Fatigue Syndrome (available from the Royal College of Physicians). The condition shall now be called chronic fatigue syndrome (CFS) and not myalgic encephalomyelitis (ME), the report decrees. ME is an unsuitable name because it implies a pathological condition that is not there, it implies a single disease entity, and it ignores the psychological dimension. The Royal Colleges set to work after a request from the government's Chief Medical Officer.

The committee's estimate of the prevalence of CFS sparked a furious onslaught from the ME/CFS charities. The expert committee took US data of 0·1–0·9% and UK data up to 2·6% to arrive at a figure of 1·2%, equivalent to a maximum of about 40 cases on the average general practitioner's list or to half to one million cases in the UK."

"Psychiatry has won the day for now. A decade hence, when an organic cause for at least some cases of CFS may have emerged, it would be tempting to ask the committee to reconvene. We believe that the report was haphazardly set-up, biased, and inconclusive, and is of little help to patients or their physicians. Or as the Department of Health weakly put it, the report will “provide a further contribution to the ongoing debate”. Incidentally, the Department still talks about CFS/ME."
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)64917-3/fulltext

 

I have been thinking about all those who put their names to this report, or allowed their names to be put to it. Some of them are surprising.

There is one organisation which might be able to influence such a diverse group of researchers, and make them conform in an unexpected way. Has there ever been any suggestion of lobbying by the MRC? There is some evidence of their hostility to physiological explanations at around that time.

 

What is MRC?