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

[Mithriel]

Moderator note: This post has been copied and subsequent posts moved from this thread:
Concerns about craniocervical instability surgery in ME/CFS
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Chronic Fatigue Syndrome is a such a vague diagnosis that it can cover many things since fatigue is such a common symptom but ME is a specific diagnosis. It is only when it is used as a synonym of CFS that there is confusion. The effects of exertion we experience are not seen in any other disease. ME is a disease of energy metabolism.

The Workwell institute work has shown that our aerobic system does not work properly and we rely heavily on anaerobic respiration for our energy. This is a useful explanation for our symptoms and matches what people with ME have claimed to experience for years.

What I cannot see is why fixing a mechanical problem could relieve the post exertional problems we experience. If it is the sole cause of someone's symptoms then where is the energy problem of ME? If someone has true PEM then this must remain after the operation so they could still end up bedridden. In fact the relief of some symptoms could lead someone to do too much and we have seen how many people end up worse than they started when an improvement means they do too much.

 

[duncan]

Chronic Fatigue Syndrome is a such a vague diagnosis that it can cover many things since fatigue is such a common symptom but ME is a specific diagnosis.

This is not quite fair to all those patients who had no recourse to a ME diagnosis for many years. It was only CFS. PEM does also help narrow the diagnosis now that it is more widely acknowledged as a major component of ME/CFS.

Of course, there is more than one type of encephalomyelitis as well.

 

[Mithriel]

This is not quite fair to all those patients who had no recourse to a ME diagnosis for many years. It was only CFS. PEM does also help narrow the diagnosis now that it is more widely acknowledged as a major component of ME/CFS.

Of course, there is more than one type of encephalomyelitis as well.

Myalgic encephalomyelitis was a specific disease. When the CDC sent a team to investigate the outbreak at Lake Tahoe they ignored those doctors who recognised it as ME and made up their own new disease CFS where something that came in an outbreak was defined as 6 months of unexplained fatigue and the connection with an abnormal response to exercise, along with all previous research and expertise was lost.

Being diagnosed with CFS says nothing about whether you have ME (or depression or CJD) I was not diagnosed for 17 years but it did not mean I didn't have ME for those 17 years.

Other diseases experience post viral fatigue and their symptoms are exacerbated but in ME there is an abnormal response which is often delayed,is excessive and takes an unusual length of time to resolve. In other diseases the symptoms are related to the exertion but not so in ME. Walking can lead to an inability to hold a pen, writing can lead to being unable to speak. In fact it is so counter intuitive it is one of the reasons we are disbelieved.

 

[duncan]

Myalgic encephalomyelitis was a specific disease. When the CDC sent a team to investigate the outbreak at Lake Tahoe they ignored those doctors who recognised it as ME and made up their own new disease CFS where something that came in an outbreak was defined as 6 months of unexplained fatigue and the connection with an abnormal response to exercise, along with all previous research and expertise was lost.

Right. The take away is that in the US, EIS people - or later their CDC superiors - replaced ME with CFS. CFS WAS more vague, but that doesn't mean ME wasn't folded into it. Yet by default, most US victims had only a CFS diagnosis to cling to, and accordingly sometimes earned the disdain of European counterparts through no fault of their own. In the US, if you have ME, you are diagnosed with CFS, or at least were.

Being diagnosed with CFS says nothing about whether you have ME (or depression or CJD) I was not diagnosed for 17 years but it did not mean I didn't have ME for those 17 years.

Understood. You are agreeing with me, at least your second obsrevation does. Your first sentence merely frames perfectly my earlier comment about disdain for US ME patients who were forced into a CFS diagnosis. I appreciate the distinction in an absolute sense, but for US patients, it is meaningless.

Other diseases experience post viral fatigue and their symptoms are exacerbated but in ME there is an abnormal response which is often delayed,is excessive and takes an unusual length of time to resolve. In other diseases the symptoms are related to the exertion but not so in ME. Walking can lead to an inability to hold a pen, writing can lead to being unable to speak. In fact it is so counter intuitive it is one of the reasons we are disbelieved.

I see this all the time in channelopathies. We are not alone.

 

[chrisb]

Myalgic encephalomyelitis was a specific disease.

Until very recently I had not appreciated that in 1987 the semi-official US view of Royal Free disease was that it was hysteria, as identified by McEvedy and Beard. It would be interesting to know what worm had been in the ears of certain people. (I wish to make it clear that this was before SW or MS had any influence and they could not have been responsible.) It is strange that Strauss was able to dismiss the condition in a couple of lines in a way which could never have been done in the UK.

 

[Mithriel]

The paper, which was a PhD dissertation, was discussed in Time magazine a short time after it was published. That could not have happened without some high level input. There had not been time for word of mouth to have spread it, it suited someone's interests.

I think we can't really understand how frightening polio and other microbiological diseases were. there was a polio epidemic where I lived when I was 5 and I queued for vaccination outside in the snow for over an hour.

By the early 60s they were fast becoming a thing of the past but ME was still there, hitting without warning so it was much better to believe it was a group of hysterical women. There was nothing like it again until the AIDS panic.

I still can't understand why people do not fear ME for their children. It can only be because of the framing of it as a disease only weak inadequate people get.

 

[Mithriel]

Secondly, unfortunately, this thread is also bringing out the "ME versus CFS" people.

As mentioned earlier....

If you keep dividing this disease until the only people who really have "it" are the people who have had enteroviral infections, then I wish you good luck with your fundraising efforts.

I just spent some time on twitter and the "ME vs. CFS" thing is popping up again, where of course, anyone doesn't have the classic "ME", is a wastebasket. The larger you make your "wastebasket", the more political support you will engender.

CFS is a wastebasket diagnosis. There are no wastebasket patients. Before CFS became a big thing in the UK people were told they had depression, then it was CFS, now you are as likely to be told you have FND and the situation is worse for children.

Sorting out what patients really have is important. The antidepressants for people told they had depression did not work, children diagnosed with Munchhausen's by proxy do not get better when taken into care. Knowing what is going wrong is the key to treating and curing any disease.

ME was a specific thing which involved infections. There may be very few of us with ME like that, it could be we share an illness which was a consequence of epidemics but can be caused in lots of ways, maybe there will be a treatment which helps many people here but the rest of us will have something else and not be helped. ME will still be a specific thing that came in epidemics and outbreaks if we all have a similar sort of brain damage that is caused many ways only some sorts of that brain damage can be called ME.

CCI may well help a lot of people who think they have or have been diagnosed with CFS or ME and good for them but that does not mean that ME is synonymous with having CCI

I also hope we can move on from the way it used to be when every time we said we did not have depression someone would say that we were insulting people who had depression.

 

[duncan]

CFS is a wastebasket diagnosis.

Yes, it is, but not as bad as it used to be. Still treated as such, though. But adding PEM to the mix helps enormously.

There may be very few of us with ME like that, it could be we share an illness which was a consequence of epidemics but can be caused in lots of ways, maybe there will be a treatment which helps many people here but the rest of us will have something else and not be helped. ME will still be a specific thing that came in epidemics and outbreaks if we all have a similar sort of brain damage that is caused many ways only some sorts of that brain damage can be called ME.

I think this is incorrect in that it specifies a condition has to be epidemic. I can match ME with a different encephalomyelitis that does not manifest in epidemics.

I also hope we can move on from the way it used to be when every time we said we did not have depression someone would say that we were insulting people who had depression.

The problem with this wish is that it fails to account for the ME patients who were labeled CFS due to geography and politics. In the US, that means practically all ME patients who, up to very recently, carried a CFS diagnosis strapped to their backs, and those diagnoses pretty much remain. So when you say CFS is not ME (I know that is a paraphrase), you do a disservice to those individuals, albeit inadvertently.

 

[Trish]

The problem with this wish is that it fails to account for the ME patients who were labeled CFS due to geography and politics.

Not just in the USA. I was diagnosed in the UK with ME by a GP in 1990. My medical records glimpsed on a GP's computer screen say I have CFS. I don't know when or why it was changed.

 

[duncan]

Not just in the USA. I was diagnosed with ME by a GP in 1990. My medical records glimpsed on a GP's computer screen say I have CFS. I don't know when or why it was changed.

It is frustrating to the nth degree.

 

[Guest 102]

CFS is a wastebasket diagnosis. There are no wastebasket patients. Before CFS became a big thing in the UK people were told they had depression, then it was CFS, now you are as likely to be told you have FND and the situation is worse for children.

Sorting out what patients really have is important. The antidepressants for people told they had depression did not work, children diagnosed with Munchhausen's by proxy do not get better when taken into care. Knowing what is going wrong is the key to treating and curing any disease.

ME was a specific thing which involved infections. There may be very few of us with ME like that, it could be we share an illness which was a consequence of epidemics but can be caused in lots of ways, maybe there will be a treatment which helps many people here but the rest of us will have something else and not be helped. ME will still be a specific thing that came in epidemics and outbreaks if we all have a similar sort of brain damage that is caused many ways only some sorts of that brain damage can be called ME.

CCI may well help a lot of people who think they have or have been diagnosed with CFS or ME and good for them but that does not mean that ME is synonymous with having CCI

I also hope we can move on from the way it used to be when every time we said we did not have depression someone would say that we were insulting people who had depression.

Absolutely - and I think not everyone appreciates how ME was hijacked and reframed as CFS in UK in late eighties/early nineties. I often point out had I been diagnosed ten years later, in early-mid nineties, instead of 1983, I most likely would have received a CFS diagnosis too, as ME was being wilfully disappeared by UK psychiatrists.

Still, it is indisputable that ME, the clinical entity as described/observed by Acheson and Ramsay in 1950s was originally a post-viral illness, mostly enterovirus, but not always, seen in epidemics but also sporadically. It is absolutely not belittling anyone with a CFS diagnosis/label to point this out. I am sure many now who suffer from ME have a 'CFS' diagnosis. And I know from longterm USA advocates who are also my friends that there were doctors like Straus in 1980s who v much pushed the CFS label. So in USA you would have been very unlikely to get a diagnosis of ME, even if that is what you had/have.

But it does not help to pretend there is not a difference between RamsayME/ICCME and, for example, Oxford CFS. ME is not idiopathic 'chronic fatigue'. Leonard Jason has done great work on criteria case definitions and the problems of conflation.

Yes, when we denied we were depressed, that was used as a stick to beat us with by those who suffer from primary depression - pwME were in denial, we were further stigmatising mental illness by not accepting a diagnosis of depression. So very offensive to suggest this. (Please note I am not speaking about secondary depression/anxiety that many pwME may experience.)

So while I can see that CCI is worth exploring, I can also be sure it will not help patients like myself, ill now for almost forty years. I was diagnosed by criteria of a specific decade/geography, but those criteria v much describe what I still suffer from today. It would be bizarre for me to doing cartwheels (metaphorically) because CCI is now a finding in a minority of patients with an ME diagnosis, though it is, of course, welcome news when anyone recovers their health.

 

[Dx Revision Watch]

Not just in the USA. I was diagnosed in the UK with ME by a GP in 1990. My medical records glimpsed on a GP's computer screen say I have CFS. I don't know when or why it was changed.

The Read Code clinical terminology system (CTV3) was used in primary care. The Read Code system has been retired and the mandatory terminology system for NHS Primary Care is now SNOMED CT UK Edition.

Under the Read Code (CTV3) Clinical Terminology, the "Preferred Name" was:

Preferred Name
Chronic fatigue syndrome

Read Code: Xa01F

Synonyms
Myalgic encephalomyelitis syndrome

altLabel
Myalgic encephalomyelitis syndrome
ME - Myalgic encephalomyelitis
Myalgic encephalomyelitis
PVFS - Postviral fatigue syndrome
Postviral fatigue syndrome
CFS - Chronic fatigue syndrome


For SNOMED CT International Edition and UK Edition the "Preferred Term" is also Chronic fatigue syndrome

SNOMED CT Concept SCTID: 52702003: Chronic fatigue syndrome Preferred

Synonyms terms
Benign myalgic encephalomyelitis Acceptable
CFS - Chronic fatigue syndrome Acceptable
Iceland disease Acceptable
ME - Myalgic encephalomyelitis Acceptable
Myalgic encephalitis Acceptable
Myalgic encephalomyelitis Acceptable
Myalgic encephalomyelitis syndrome Acceptable
Myalgic encephalopathy Acceptable

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

So if your GP is using Chronic fatigue syndrome in the patient record, they are possibly doing so since this was the "Preferred Term" under the Read Code Clinical Terminology system.

Or if the patient records have already been converted to SNOMED CT (patient records coded under the Read Code system are in the process of transitioning to SNOMED CT codes), because Chronic fatigue syndrome is the Preferred Term in SNOMED CT.


SNOMED CT is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings and can be embedded to work in the background to the GP practice's electronic patient record system (EMR), for example work in the background to SystmOne.

Since April 2018, SNOMED CT has been the mandatory terminology system for use in NHS primary care at the point of contact and forms an integral part of the electronic patient record (EPR).

SNOMED CT terminology system is already used in some NHS secondary care settings but is planned to be implemented across all NHS secondary care, acute care, mental health, community systems, dentistry and other systems used in direct patient care by April 2020.


SNOMED CT terminology system and clinical classifications, like ICD-10, work together to fulfil different needs:

Slide source: Presentation: NHS Digital: Clinical Coding for non coders – Overview of clinical coding, how ICD-10 and SNOMED CT work together, and the role of the Clinical Classifications Service.

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For updates and discussion on ICD-10, ICD-11, SNOMED CT etc please see dedicated thread:

Updates on status of ICD-11 and changes to other classification and terminology systems:
https://www.s4me.info/threads/updat...-terminology-systems.3912/page-16#post-213044

 

[Mithriel]

So when you say CFS is not ME (I know that is a paraphrase), you do a disservice to those individuals, albeit inadvertently.

That is not a paraphrase, that is the complete opposite of what I am saying so I want to make that very clear. (My GP only has one code for ME and so I am down as having CFS which label does not describe my disease or anyone elses's)

I am literally bewildered by why I am doing anyone a disservice. I am not talking about what patients have, I am talking about the wastebasket diagnosis, all things to all people, fits almost anyone with any illness, rubbish distortion of a disease category that we have had imposed on us to our detriment for almost 40 years.

It was designed to trivialise our suffering by a horrible misogynistic man and our dear friend Michael to protect the interests of themselves, business and the insurance industry. The incidental harm done to us was irrelevant to them.

If your doctor (or mine) tells you you have CFS they are unwittingly or otherwise complicit in this travesty of medicine.

I hope I have made myself clear.

 

[duncan]

I'm glad I misunderstood, but not surprised; I'm almost getting used to misreading and mis-writing. Not quite, though.

 

[Dx Revision Watch]

That is not a paraphrase, that is the complete opposite of what I am saying so I want to make that very clear. (My GP only has one code for ME and so I am down as having CFS which label does not describe my disease or anyone elses's)...

Indeed.

Irrespective of how a patient's diagnosis may have originally been termed, under the Read Codes Primary Care Terminology System and under ICD-10, CFS, ME, and (B)ME are all coded or indexed to the same code, respectively, Xa01F (Read CTV3); G93.3 (ICD-10); and 8E49 (ICD-11).

The exception is SNOMED CT, which in 2015, assigned Postviral fatigue syndrome to a separate Concept code (it had previously been a Child under SCTID: 52702003 Chronic fatigue syndrome).

So for SNOMED CT, CFS and ME, BME and all the other "Acceptable" terms listed under Synonym terms to Preferred Concept: 52702003 all take the 52702003 Chronic fatigue syndrome code and are all mapped to ICD-10's G93.3.

But Postviral fatigue syndrome has the SNOMED CT code SCTID: 51771007 (though this is still mapped to ICD-10's G93.3 Postviral fatigue syndrome).

[But I'll say no more on this topic as we have a dedicated thread for classification and terminology systems/coding etc.]

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Edited to add clarification re a variance in the SNOMED CT U.S. Edition:

For the SNOMED CT U.S. Edition, Concept SCTID: 52702003 Chronic fatigue syndrome maps to a choice of either G93.3 or ICD-10-CM R53.82, as BME and Chronic fatigue syndrome (as Chronic fatigue syndrome NOS) are coded under different chapters in the U.S's ICD-10-CM.

 

[JES]

If your doctor (or mine) tells you you have CFS they are unwittingly or otherwise complicit in this travesty of medicine.

Not my experience at all. CFS and ME are almost always used interchangeably in my country, but usually it's just referred to as CFS, probably at least in part because ME doesn't translate well and is difficult to pronounce. Patient organizations use the term ME/CFS.

If a doctor diagnoses CFS e.g. with code G93.3, but he doesn't spell out "ME", I don't see how he is complicit in travesty, as it doesn't make any practical difference, at least not over here in Europe.

More importantly, the knowledge of ME/CFS among doctors has improved significantly over the last couple of years. I'd say a large part of them understand CFS as not a wastebasket diagnosis and not simply a fatiguing disease. Both CFS, ME and ME/CFS are described as chronic multisystem diseases with no psychiatric origin. If you get any of those diagnoses over here, you are much better off than having a functional or somatization disorder diagnosis, which is the new alternative being pushed. Basically the debate between CFS and ME no longer exists over here since it has little practical impact.

 

[Jonathan Edwards]

Basically the debate between CFS and ME no longer exists over here since it has little practical impact.

I am not sure where over here is but I would agree that within the medical and scientific research community internationally the distinction between ME and CFS essentially no longer exists. In general people talk of ME/CFS. Everyone accepts the importance of PEM, which means that the two terms are conceptually the same - a syndrome with a specific pattern rather than just fatigue.

 

[Guest 102]

I am not sure where over here is but I would agree that within the medical and scientific research community internationally the distinction between ME and CFS essentially no longer exists. In general people talk of ME/CFS. Everyone accepts the importance of PEM, which means that the two terms are conceptually the same - a syndrome with a specific pattern rather than just fatigue.

I agree that within the medical and scientific community ME/CFS increasingly used to mean ME, and that fatigabilty and PEM are now considered as crucial - along with symptoms like orthostatic intolerance. And I realise that CFS is the term still often used in the research world (by decent researchers).

Still, the PACE scientists cheerfully conflated ME and fatigue for decades. If Oxford criteria for CFS had not been coined, and ME effectively 'disappeared’, the PACEtrial would simply not have been ‘viable’ for ME. And we would not have a legacy of CFS clinics in UK where ME patients are being harmed by GET. Wessely and co happily muddled ME and idiopathic chronic fatigue, which has been a catastrophe for pwME.

Our friend Michael has admitted ME and (Oxford) CFS not same, though he and his buddies have been happy with the conflation, it has suited them very well. So it is still not easy to feel happy about subsuming ME under ME/CFS labelling, especially for patients like myself. CFS did not exist as a concept when I got ill. And the conflation has done immeasurable harm. I hope that is all behind us with stricter criteria, but I am not so sure. For example, the surgeons embracing fusion surgery as 'curative' for CFS - which criteria are they using for CFS?

 

[chrisb]

I don't wish to take this thread too far off topic but feel the need to point out the complexity of the ME or CFS question. The same month that the Holmes criteria were published Strauss published a paper on Chronic Mononucleosis Syndrome in which he stated:

Reassessment of some outbreaks of epidemic neuromyasthenia indicated a very high prevalence of neurosis in affected individuals. In one of the most famous such epidemics, occurring among staff of the Royal Free Hospital in London, England in 1955, the progression of the outbreak was argued plausibly to resemble mass hysteria [27, 28].

Straus, S. E. (1988). The Chronic Mononucleosis Syndrome. Journal of Infectious Diseases, 157(3), 405–412. doi:10.1093/infdis/157.3.405
url to share this paper:
sci-hub.se/10.1093/infdis/157.3.4

It would seem reasonable to infer that they thought ME was hysteria whereas CFS was something else, a set of symptoms of unknown cause whether somatic or psychosomatic.

CFS was never meant to include ME, and they seem never to have taken the trouble to discover the best views as to what ME was... despite the efforts of Parrish.

 

[Mithriel]

Sadly, in the UK especially under the FND work but elsewhere as well CFS and fibromyalgia are being used more and more as simply symptoms. if you have fatigue you have CFS, if you have pain you have fibro. Maddening.