Oxford criteria

Medical Research Council

 

taken from recent article by Mary Dimmock:
"
According to the US Agency for Healthcare Research and Quality (AHRQ), the use of an overly broad definition (the Oxford definition) in many of these studies resulted in the inclusion of “patients who may have an alternate fatiguing illness.”

The 2016 AHRQ report also noted that studies using more specific definitions
requiring hallmark symptoms of ME such as an abnormal response to exertion were
“blatantly missing.”

After excluding Oxford studies from its analysis, AHRQ found no
evidence of effectiveness for GET and barely any for CBT. This raises serious questions
about the validity of applying CBT and GET recommendations to people with ME."

 

Given the predominance of psychiatrists amongst the names appended to the 1991 paper, I thought it would be interesting to look at them a little closer. They are: Sharpe, Clare, David, Hawton, McDonald, Wessely and White. In addition there was a psychologist AP Smith. It should have been instructive to see what the others, apart from David, White and Wessely, had published on ME in or before 1990.

Sharpe seems to have two publications:

Chronic Fatigue Syndrome: can the psychiatrist help?
Sharpe M 1990 Dilemmas and difficulties in the treatment of psychiatric patients.231-240

and with Hawton K
Liaison psychiatry and psychological sequelae of physical disorders https://journals.lww.com/co-psychia...ychiatry_and_psychological_sequelae_of.5.aspx

I could find nothing else for Hawton, or for McDonald or Smith.

Of Anthony Clare, his obituary in the BMJ http://europepmc.org/articles/PMC2078634 states that he had a particular interest in the treatment of chronic fatigue syndrome, but I have found no papers in or before 1990. It is perhaps the views expressed by Wessely and White in the Guardian obituary https://www.theguardian.com/news/2007/oct/31/guardianobituaries.obituaries2 which are most instructive as to the common basis of their beliefs.

I must declare a bias. On the rare occasions on which I listened to Clare's radio programmes,I thought them manipulative and exploitative to an objectionable extent. But the BBC liked them.

The most instructive paper I have come across is one by Mountstephen and Sharpe, although it is from 1997.

https://www.researchgate.net/publication/13987173_Chronic_fatigue_syndrome_and_occupational_health

"At present a sensible approach is to qualify a diagnosis of CFS by any co-existing psychiatric syndromes. According to such a scheme CFS would be subclassified into CFS/depression, CFS/anxiety, and CFS without depression or anxiety disorder. THIS LAST CATEGORY IS EQUIVALENT TO ICD-10 NEURASTHENIA." (My capitalisation.)

This seems to expand on what we know of the views of Wessely and White. They seemed to leave uncertain the classification of those without psychiatric disorder. I think that we always believed that it was in this area that clear ME cases were to be found. We now learn, from the man who wrote the report, that it was in precisely this area that their concept of neurasthenia was to be found. One wonders to what extent this was made clear to the others attending the Oxford meeting. This must have been "music to the ears" of those who employed the occupational therapists addressed by the paper.

It would be interesting to know more of the steering committee for this conference and those who set the agenda, framed the questions, edited the responses, and chaired the meeting. In fact we know that Clare chaired the meeting.

 

@Inara

The Medical Research Council is a publicly funded government agency responsible for co-ordinating and funding medical research in the United Kingdom.

Wiki definition.

 

It may be that of the potential scribes for this conference Sharpe was the worst possible choice for people with ME.

Here is a further offering of a collaboration with Hawton. https://www.sciencedirect.com/science/article/pii/000579679400077W

Chronic Fatigue Syndrome: a cognitive approach

"On the basis of these observations a cognitive theory of the aetiology of CFS is proposed."

Wessely and White would not have written anything so.... well.......crass.

 

What is with all the patients that present with PEM? I mean, if you don't know what you have you don't go to the doctor and say "I have CFS" or "I have chronic fatigue" (unless of course you feel chronically fatigued - whatever fstigue is, I don't undrrstand it entirely). You say what your problems are. If I tell doctors my main problems are PEM (I use different words of course) and that the muscles burn instantly, there's nearly always a blank look. No talk of tiredness or fatigue from my side..Since most doctors don't know what to do with it some invent their own story that feels much more familiar.

So the BPS folk don't talk about ME, they talk about fatigue - they said that themselves, right? How could it happen that ME and fatigue are equated?

 

I know people with mild(er) ME and they happily describe themselves as fatigued.

In fact one person became quite verbally aggressive towards me when I explained that I didn't consider fatigue to be a primary symptom in my own case. In her opinion it was no wonder the disease wasn't taken seriously if I denied being "tired".

People have some funny ideas....

 

Some people's behavior really is...unpleasant, @Invisible Woman.

So this person feels tired. Ok.

Still, others present with other symptoms.

Before my health got much worse I felt tired, partly it was a heavy tiredness. But I had no problems with it. I worked, I exercised, I went to parties... And I never went to a doctor to complain about the tiredness although it wasn't pleasant. Do some people here know a fatigue that is disabling? (Fatigue, not exhaustion, weakness...)

 

Yes - but only when my thyroid meds need to be adjusted/increased or when I'm anaemic. Completely different feeling, I think.

ETA - as far as I know I would be excluded from the Oxford criteria due to neuro symptoms

 

I'm the same if my thyroid level gets too low, I get extreme tiredness to the point of sleeping up to 15 hours a day, and then having to force myself to get up as I still want to sleep for longer. Then I am also tired (sleepy) for the rest of the day.

I've had ME 27 years and I didn't have this sort of tiredness before becoming hypothyroid several years ago. I sleep more during ME relapses, but I didn't ever feel sleepy during the day time, or at night!

Maybe some people use the word tired to describe the lack of energy, or rapid loss of energy following exertion? We just don't have words that adequately describe this lack of energy, fatigue comes nowhere near describing how it feels. if I really over do it I feel like I'm going to die and even breathing becomes laboured, I get palpitations, my face goes white then grey and I literally collapse. But I still don't feel tired!

 

That's it @Jan .

We need new vocabulary.

 

Taken from http://www.investinme.org/Article422 Grey Information about ME CFS.htm

"Professor Michael Sharpe, recently responded to criticism of the PACE Trial (doi:10.1016/j.jpsychores.2011.03.003) by attempting to justify the use of the Oxford criteria (of which he was lead author) stating:

“While we excluded people with generally accepted organic brain diseases…we did not exclude people who described their symptoms as those of ME”,

yet ME is a WHO-classified neurological disorder, so Sharpe’s argument is intellectually inconsistent. His position itself is intellectually inconsistent because he bases it on “CFS/ME” being “disabling longstanding fatigue” and gives no credence to the presence of the symptoms that distinguish ME/CFS from chronic fatigue."

 

I don't think that this is a particularly strong point when we're lacking any sort of clear neurological test showing someone has ME. It makes sense to exclude those with brain tumors from a CFS trial:

"In fact, while we excluded people
with generally accepted organic brain diseases such as
cerebral tumors, we did not exclude people who described
their symptoms as those of ME."

That they excluded people who did not describe their primary symptom as being fatigue is more likely to be an issue.

I've forgotten the details of any testing done in PACE. Were there specific tests that were thought would exclude people with ME?

That same paper from Sharpe did include this funny bit:

"The main criticism of the trial from patient organizations
is that a neurological condition would not get better with
‘psychological’ treatments such as CBT or GET. Therefore
we must have either misreported the results of the trial or
included mainly patients with mental illness."

http://sci-hub.la/https://doi.org/10.1016/j.jpsychores.2011.03.003

No Sharpe, the main criticism was that you misreported the results of the trial, as can be seen from the recent release of some of the trial's data.

 

The Oxford criteria are presented as the product of a consensus meeting. Recent reading suggests that there might have been less consensus than one might be led to expect.

The consensus meeting in Oxford (Sharpe et., 1990) attempted to set out the minimal set of findings which should be recorded in future studies of chronic fatigue syndromes. Many of these are of a very general nature, and are not applicable specifically to a particular fatigue syndrome with a well defined set of symptoms, such as ME. Nevertheless there must be specific criteria for patient selection, for measurement of associated laboratory findings, and for assessment of disease severity. Whether the effect of a possible treatment is being studied, or the natural history of the condition followed, the basic epidemiological data are necessary.

Mowbray J Directions for future research in Post-viral Fatigue Syndrome eds Jenkins/Mowbray 1991 p436

In Great Britain, proposals for a consensus of minimum requirements for diagnosis so that further research can be carried out into chronic fatigue syndrome (CFS) and PVFS, show uncertainty. Guidelines from the MRC may also be unhelpful, since they suggest that CFS is a better term than postviral fatigue syndrome. In our opinion, however ,the lack of a precise definition for CFS leaves everything to be desired.

PO Behan, AMO Bakheit Clinical spectrum of postviral fatigue syndrome in British Medical Bulletin (1991) vol 47 no 4 p794

This appears to tell us something about the conduct of the meeting, or the meaning of consensus. One or the other.

 

My understanding is that Behan was involved in these discussions but he was not present at final meeting. Since he diagnosed me with ‘myalgic encephalomyelitis/severe postviral fatigue syndrome’ in early 1984 and treated me with experimental immunotherapy and plasmapheresis it is most likely he would have disagreed with this ‘consensus’ of Sharpe et al.

 

I think that is right. I think there is an indication in the report that he was party to the initial circulation of documents but was unable to attend the conference. In such circumstances it would have been expected that his views would have been taken into account. The above comment might lead one to suppose that they were not, or that he considered that they were not.

 

This MEA article is about the London Criteria; I'm a little confused (OK more than usual) about the use of the modified version of the London Criteria, in the PACE trial.

(Includes a brief interjection from EG about its validity)

"
Dr Charles Shepherd February 22, 2011 at 9:40 am


I am only trying to be helpful here because I have been asked about how ME is defined in the (1993) London Criteria, as published on pages 96 – 98 in the 1994 Task Force Report, and the way this was later modified for use in the PACE trial – where 329 people met with the modified criteria.

Researchers are free to use whatever diagnostic criteria they want but have to take various factors into account – including the fact that funders and scientific journals may not want to be co-operative if the trial involves a research definition that has not been properly validated. The same problem applies to the Canadian Clinical Definition.

The Oxford criteria for CFS, along with the post-infectious sub-type, is a very wide brush – so it can include people with both Fukuda defined CFS and London Criteria defined ME, or Ramsay described ME. Incidentally, as a doctor who has ME, which was diagnosed by Dr Melvin Ramsay, I also meet with Oxford defined CFS (post-infectious sub-type) – as do many of the ME patients that I have seen over the past 30 years."

https://www.meassociation.org.uk/2011/02/london-criteria-for-m-e/

 

From 2017
Chronic fatigue syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study

https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1353578?journalCode=rftg20

 

Article from 2014 on the subject
The Oxford Problem
Posted on December 8, 2014 by Jennie Spotila
Today, I’m very pleased to share this guest post by Chris Heppner.
http://occupyme.net/2014/12/08/the-oxford-problem/

some interesting exchanges in the comments

eta:

An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome requires strict Clinical Case definitions and Objective Test Methods
Frank NM Twisk* 2017
https://www.omicsonline.org/open-ac...of-me-and-cfs-2168-9784-1000249.php?aid=90313

 

There’s a difference between fatigueability and fatigue. Many mild-moderate will have periods of not feeling tired until they do something where they raPidly exhaust. They may not feel well though. I intensely dislike the confusion with chronic fatigue and I don’t really understand the point above by Dr Charles Shepherd that Most people will meet oxford when oxford just requires mental and physical fatigue when the point is that few with oxford criteria will meet the much more stringent requirements of say ICC requiring PEM and additional symptoms. So oxford fatigue isn’t ME , doesn’t help understand ME as much as otther criteria and shoukdnt be being used alone in CFS or ME named research. I heard no criticism by mea of the pariante fatigue study when it’s basis was understood,