The use of the labels ME, CFS, ME/CFS

I believe that Strauss also said the Incline Village outbreak on which CFS criteria were based on was hysteria.

Edited to add

Correction, it was Williams Reeves of the CDC who said to a reporter on a US tv Show in 1996 called Prime Time Live that was reporting on the Incline Village outbreak that it was hysteria.

In the same programme at around 7 minutes, 15 seconds in the reporter mentions that the NIH after ruling out the Incline Village was caused by their hypothetical ‘chronic mono syndrome’ kept to their favourite explanation of it being all in the mind. It then cuts to Strauss saying the condition was v subjective and anything you give to the patient seems to work indicating he thought once his chronic mono theory didn’t pan out it was in the mind as he erroneously believed ME was from reading the McEvedy and Beard paper.

Hillary Johnson in her book Osler’s Web makes it clear that from the inception of CFS CDC and NIH treated it as a joke and almost definitely in the mind. I think that NIH and CDC treated ME and their construct CFS similarly viewing them both as probably psychosomatic and one and the same ultimately.

Clip of show, Reeves quoted at around 10 mins 45 sec.

https://www.youtube.com/watch?v=AW0x9_Q8qbo

 

Ramsay in his 1986 book said ME could happen in epidemic and endemic form.

 

I probably shouldn’t even bother writing this, but I have to point out that my early experiences with this disease were very different from what people seem to think that the US experience was at the time that I was diagnosed.

I was diagnosed by a psychiatrist here in Atlanta, very shortly after the CDC meeting that created the Holmes criteria and the horrible name CFS. Everyone hated the name, but it was not treated as a wastebasket diagnosis. The psychiatrist who diagnosed me was adamant that depression was not my problem and sent me to an infectious disease doctor who was involved in the CDC’s process.

While there were undoubtedly people at CDC who were contemptuous of those of us with this disease, the good doctors here did not treat this disease as a wastebasket diagnosis. They treated as a very serious condition that they didn’t know how to treat.

The infectious disease doctor who diagnosed me sent me to a support group - probably the best thing that he could have done. CDC did a dreadful job of investigating this disease, but the people who were involved in defining what was going on with us here in the US were not just the CDC folks. There were doctors who seriously wanted to help but didn’t know how.

The people in my support group were defined not by depression or even fatigue, but mostly by cognitive disruption and what we now call PEM. It fact, I think that it was a more distinct cohort than I see on the internet now.

All of this is to say that, although I and anyone else who has good sense really hates the name CFS, it wasn’t initially dealt with here the way that it was in Great Britain. You guys had the name ME and a set of criteria that were hijacked by Wessely & Co. We didn’t have the name ME; we mostly had a bunch of baffled doctors. And even the best of our doctors didn’t use ME; they called it CFS or, preferably, CFIDS.

Some of the leaders of our health agencies, after finding no easy answers, teamed up with the GB guys and tried to turn this into a psychiatric disorder. Others were trying to prove that this was a physical disease. It was a colossal mess. The criteria got muddier.

The criteria need to be cleaned up for all of us. But when people say “CFS is not ME”, they are ignoring a lot of history and selecting out particular sets of criteria for ME and CFS to compare. In reality there are a bunch of criteria for each name and they all need clearing up. That’s one of the major things addressed in the ME Action petition. If we don’t clean up the criteria, the research can’t be as sound as it should be.

Meanwhile my point of view is pretty much the same as it was in 1988. If your brain stopped working and if simple exertion of any kind can put you in bed for weeks, I think that we have the same disease, whatever name you choose to use.

 

Thanks for sharing this information. If I look back at the Holmes criteria I dont see a wastebasket for unexplained chronic fatigue, it seems more like an attempt by researchers to define a new and devastating illness.

What you wrote is important but I don't think many patients will find the info in this thread. So perhaps its worth trying to write it into a blog or something?

 

It is not entirely clear to me how pointing out details in historical documents, which cast light on the opinions of those instrumental in redefining the condition, can be construed as "ignoring a lot of history".

Any evidence which sheds light on matters with which we are concerned is a proper subject for debate, especially when the evidence is published in the formal "scientific" literature. There is plenty of understanding of the US position and of the UK position, but very little of how they have interacted and affected each other, which they clearly did.

Part of our difficulty in understanding Wessely was that some of his early influences seem to have been from the US and gone unrecognised. Who in the UK had come across Imboden et al? Even neurasthenia, for which Wessely is infamous, was introduced in that Strauss paper. No doubt he took it from elsewhere... it probably would not take long to guess where. Fortunately that other paper quoted by Strauss on Ego strength as a factor in recovery seems never to have made it across the pond. There are, apparently, limits.

It is worth mentioning that whilst Strauss was indicating hysteria as a cause of ME, Wessely was, that same month, indicating that opinions had moved on and "abnormal illness behaviour" better described the condition.

 

Strays was horrible. I met him. He was a terrible scientist. At CDC, Reeves was horrible. We intensely disliked each other. But they do not make up the whole story. Many involved with this illness, even with the name and definition, were good scientists trying to understand what was going on. The whole history is far more complex than CFS v. ME.

 

That is certainly what I have come to think. Both terms have been used and abused.

 

No-one ever said it was easy. I don't know how the impression could have been gained that they did.

 

Post copied from
BMJ Management of post-acute Covid-19 in primary care, 2020, Greenhalgh et al
A large number of subsequent posts have been moved from that thread.

Two more Rapid Reponses

One of interest (first two paragraphs) from Diane O'Leary

https://www.bmj.com/content/370/bmj.m3026/rapid-responses

 

However much many of us might dislike the term "chronic fatigue syndrome" and would like to see it deprecated, it remains the fact that NHS England mandates the use of SNOMED CT terminology system and ICD-10 classification and codes for its Data Sets.

1 SNOMED CT, the mandatory terminology system for use across NHS England primary and secondary care settings, at the point of care, uses "Chronic fatigue syndrome" as the "Fully Specified Name" and "Preferred" term and cross maps Concept code SCTID 52702003 | Chronic fatigue syndrome and all the terms listed under Synonyms, to ICD-10 G93.3:

SNOMED CT UK Edition:




2 The annual publication: NHS Digital National Clinical Coding Standards ICD-10 has included this note for coders for a number of years:



3 The WHO's statement (published November 19, 2018) regarding classification for the forthcoming ICD-11 of 8E49 Postviral fatigue syndrome and its inclusions: 8E49 Benign myalgic encephalomyelitis and 8E49 Chronic fatigue syndrome:




4 8E49 Postviral fatigue syndrome and its inclusions 8E49 Benign myalgic encephalomyelitis: and 8E49 Chronic fatigue syndrome for ICD-11:





5 In one of her recent papers, O'Leary has referenced that the WHO recently accepted and implemented my proposal that all three terms:

8E49 Postviral fatigue syndrome;
8E49 Benign myalgic encephalomyelitis;
8E49 Chronic fatigue syndrome

should be specified as Exclusions under ICD-11's Chapter 06 Mental, behavioural or neurodevelopmental disorders category: 6C20 Bodily distress disorder.


The convention for both SNOMED CT terminology system and for ICD is not to classify conjoined terms, eg "CFS/ME" or "ME/CFS".

Both systems classify a "Fully Specified Name/Preferred term" (in the case of SNOMED CT) and a "Concept Title" term (in the case of ICD), under which alternative terms are listed as Synonyms terms or as Specified Inclusion terms. (Or in the case of Chronic fatigue syndrome in the international edition of ICD-10, included in the Index and indexed to the target code, G93.3).

Therefore, whatever terminology the clinician, coder or admin staff enters manually into the primary care patient electronic medical record (EMR) system or into the secondary care EMR, all three discrete terms will be recognised and all cross mapped or coded to ICD-10 G93.3 (or to 8E49, when ICD-11 has been implemented).

And that will be the case with "Chronic fatigue syndrome", whichever acronym NICE might decide to take forward for use in its forthcoming revised guideline.

Please consider how helpful it is to have Dr O'Leary asserting:

So no, I don't find it of interest; I find it unhelpful and potentially confusing to clinicians and coders working in NHS England primary care and secondary care who will continue to code patients in electronic medical records and will continue submitting data to local NHS Trusts, to NHS Digital, NHS England and the WHO, using two mandatory terminology and classification systems that map and code all three terms to ICD-10 G93.3 in the Diseases of the nervous system chapter, and in the case of the mandatory SNOMED CT UK Edition, specifies Concept code SCTID 52702003 | Chronic fatigue syndrome as the "Fully Specified Name/Preferred term".


Edited to add:

Three more Rapid Responses to the BMJ Practice Pointer: Management of post-acute covid-19 in primary care that refer to CFS, CFS/ME, ME/CFS, ME, PVFS, classification and coding:

From Andrea D Martell, 28 August 2020:
https://www.bmj.com/content/370/bmj.m3026/rr-5

Dear Editor, I would like to object to Dr. O'Leary categorizing Chronic Fatigue Syndrome as a psychiatric condition...



From Arvind Joshi, Physician (Medicine and Therapeutics), Mumbai, 14 August 2020
https://bmj.com/content/370/bmj.m3026/rr-1


From Colin D Watt, Retired, North Berwick, Scotland, 14 August 2020
https://bmj.com/content/370/bmj.m3026/rr-0

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

Edited to add:

Proposal and rationale submitted to ICD-11 Proposal Platform by Chapman & Dimmock, March 27, 2017: http://bit.ly/2mQxWTS

Our proposal recommended creating a new Concept Title code for Benign myalgic encephalomyelitis and a new Concept Title code for Chronic fatigue syndrome, and assigning discrete sequential codes for each new Concept Title.

Assigning discrete codes for these two terms was rejected by the WHO in November 2018.

Extract p2:





Download my August 2020 report:

Update on classification and coding of PVFS, ME and CFS for ICD-11 here:

https://dxrevisionwatch.files.wordp...ion-of-pvfs-me-cfs-for-icd-11-august-2020.pdf

 

Sorry I'm not following your reasoning. Seems like you're saying that because people have been conflating the disease with a psych condition for years, we should all keep doing that? Of course you're right that lots of systems use the terms as if they're synonymous, but that in no way supports the idea that we should keep doing it.

There is a reason why NICE changed from CFS to ME/CFS as they got closer to releasing the new guideline. That reflected awareness of the AHRQ report that led all US health organizations to stop conflating the psych construct of CFS with the disease construct of ME/CFS. We see that same awareness in unanimous use of ME/CFS among biological researchers, in NIHR's decision to fund DecodeME, in Anthony Fauci's discussions of long Covid.

If you allow clinicians to use "CFS" in cases of long Covid, you allow them to be vague about whether patients suffer from psych problems or postviral disease. That's bad for long Covid patients and it's bad for ME patients. If clinicians instead adopt the same conventions now used in research and health policy, drs will be forced to be clear and honest about whether they're making a psych dx or a disease dx. That's a big win, and you're right on the cusp of it.

 

That's a great point, though I haven't actually said it's valid. Nothing in the BMJ letter says or implies that, though I do appreciate that it's jarring and uncomfortable to see that definition right there at the beginning. It just says the construct is researched and managed in psychiatry, as a matter of fact. Mostly when researchers and organizations decide the CFS construct is just not credible - and that trend is now very powerful - they just stop using the term. I'm inclined to think that works. Don't think you're ever going to get Wessely and Sharpe to revamp the construct. Better to just make a new one that ignores them. Anyway, regardless of what I think, it seems this is what's actually happening.

Your thoughts on the ones who "look like CFS/MUS" are really important. That problem is monumental. My sense is that it's much more severe when we let clinicians use the same terms for a psych dx as for a disease dx. The only way to get them to own up to the psych dx is to force them to use a different term for it than they use for disease.

 

Any additional responses from me in respect of this BMJ Practice Pointer article and the responses it has generated will be made via the BMJ Rapid Response platform.

 

The confusion was imposed on us when the biomedical disease ME was renamed Chronic fatigue syndrome by psychiatrists who chose not to believe ME existed (as a result of ideology, not researched evidence) From the beginning they characterised it as a strange disease which "occupied the middle ground between physical and psychological" They were paving the way for physical symptoms to be diagnosed as psychological based on a belief in hysteria and needed a group who were not already claimed by specialists political enough to defend their turf. From that point CFS was treated as behavioural and psychological when it wasn't outright malingering. They also believe that fatigue is a direct axis from not tired to tired all the time and CFS is just a mark at a fixed point.

When patients continued to insist their disease was biomedical and called ME the BPS people just said it was a "name for CFS which patients preferred because it sounded more scientific" stated in such a way that listeners got the impression that it was something new not the original.

The malign influence that gave CFS prevalence and caused countries to use that instead of ME succeeded in making CFS sound like a synonym for ME and led to CFS/ME used as a sop to patients. In the US the fact that all patients had been called CFS meant that patients who obviously had a biomedical disease and the researchers in that disease then used the term ME/CFS.

Many people in the early years wanted a clear division between CFS where fatigue was predominant and ME where exercise intolerance was the key feature so that people who were diagnosed with CFS but had, let's call it PEM, were rediagnosed as ME but over forty years of deliberate confusion and obfuscation has left us with the mess we have now.

CFS is being used as a term for all fatigue over a certain amount so it is right that a sharp distinction is made between that and ME/CFS which should only be used for people with the energy system abnormalities so that doctors can stop saying that people with MS, Parkinson's, liver disease and all those diseases which traditionally have been known to have fatigue as part of them are not now being told they have ME as part of their symptoms.

Being diagnosed with CFS while having PEM is just a sign of ignorance on the part of the doctor and just as bad as being told you have an upset stomach when you have cancer.

 

I heard that chronic fatigue syndrome was originally sold as purely a term for research purposes and that it wasn't going to be used as a diagnosis. But that was the usual BPS, pants on fire, maneuvering.

 

I think that when it first emerged that they talked about the limitations of it, but those seemed to be quickly forgotten. I can't remember the details now. Maybe that was in the initial publication?

It's a pain to copy/paste from the pdf, but in the 1991 Oxford paper they talk about the importance of noting when patients suffer from the post-infectious form of CFS, saying :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

 

In the US, the original criteria for CFS were the criteria for long term EBV with all the references to EBV removed because some of the patients did not have the virus. When they had a meeting to find a name, the ME specialists walked out in protest which is never a good move as ME was then just ignored.

Paul Cheney, one of the Tahoe physicians who called in the CDC said that they agreed to the name CFS in the interim as all the patients did claim to be fatigued and they were assured the actual viral cause would be discovered in a few months and the name changed. Then the CDC never looked for a virus and Strauss toured the US telling doctors it was a disease of B class women with A class aspirations.

In the UK people were treated like fearmongerers when they said that Chronic Fatigue Syndrome would be confused with chronic fatigue but that was treated as maligning professionals who would never be so ignorant as to do a thing like that ....

Wesseley's stated intention was to make ME disappear and he has succeeded to a large extent.

 

covered in this thread
https://www.s4me.info/threads/oxford-criteria-should-papers-using-it-be-excluded.2218/#post-40204