Diagnosis of ME and the use of the labels ME and CFS.

I think the two situations are probably different. My fatigue is not secondary or a result of insomnia, since I don't have insomnia but hypersomnia/somnolence. I get enough sleep, way more than enough actually (which is then never enough actually...). This extreme fatigue is part of my PEM, without any particular explanation.

 

I'm very careful not to describe my PEM as fatigue. I don't feel fatigued during PEM, I feel sick and can't sit or stand for very long.

 

With our current knowledge the debate on naming our condition is potentially endless until we have a better medical understanding. Also because both the two preferred names have been used for quite a few years both are part of many individual patients’, researchers’ and medical professionals’ sense of their own identity, meaning for some the advocacy for any name other than their preferred choice feels like a personal attack.

Also because there is no universally agreed definition of ME and/or CFS it is possible for individuals with varying degrees of justification to believe that ME and CFS are synonyms for one condition, that they are a cluster of overlapping conditions or that they are two very distinct separate entities. This is confused by the fact that research criteria are developed to distinguish patients as much as possible whereas clinical definitions are sometimes used to be as inclusive as possible. (Though this is yet further confused by many BPS researchers’ historical conflation of the symptom of chronic fatigue and chronic fatigue syndrome and who now seem to be energetically proliferating new diagnostic terms and seem to want research carried out on ever broader clinical categories such as MUS, where there is potentially no symptom overlap at all between the individuals so labelled.)

Such as FND or MUS could be seen to as an attempt to bypass the issue altogether by denying the existence of ME and/or CFS as meaningful clinical entity. Personally I see it as very dangerous placing clinicians’/researchers’ subjective judgements over any consideration of the presenting symptoms.

Other attempts to bypass the controversy altogether by introducing a new ‘unambiguously’ defined name with no historical baggage, as the American SEID, seem to have met with little enthusiasm. But the ME/CFS or CFS/ME umbrella term seems less provocative, allowing people to push their personal preference by which of the two acronyms they put first without totally excluding the other camp. Also this compromise tacitly accepts the current limits to our understanding of the condition.

I was initially diagnosed nearly thirty years ago by my GP, who took an interest in the topic, as having CFS, because he believed there was no evidence for any underlying neuro-inflammation as implied by ME and he felt that CFS was totally neutral as to any aetiology. I am not sure if I totally agree with this position, especially as some use CFS to imply a psychogenic origin, but since my initial diagnosis I have been variously rediagnosed as CFS, ME and CFS/ME by the various GPs, consultants, researchers and the specialist CFS/ME service that have passed by with little impact on the course of my ill health.

It is perhaps depressing as to how little progress has been made in the intervening time since my initial diagnosis, even though my then very young GP who had then just had his first child could now have grandchildren entering their teens.

Personally I have for most of that time not felt particularly strongly one way or another about the naming of our condition, in English I have used both ME and CFS to describe myself and in German I have tended to settle on an awkward phrase along the lines of persistent Drüsenfieber (glandular fever/mononucleosis), sort of ‘long haul EBV’ in today’s terms, as that seemed to leave people most satisfied.

However, more recently I have wondered if I have been copping out and that, in terms of advocating for our condition, the best stance is to insist on ME. This name is most likely to generate discussion and debate, either because others disagree with the term or because in terms of the general public they have no idea what it means. Also it challenges the harmful confusion between the symptom of chronic fatigue, the condition of idiopathic chronic fatigue (which may or may not exist and is often the lay and even for some medical understanding of CFS) and Chronic Fatigue Syndrome, the synonym for ME. I personally see people not knowing what ME is and asking as infinitely preferable to people wrongly thinking they understand CFS and therefor not asking. (This is not intended to devalue the position of people who use CFS as that is what they have been diagnosed with. With our current knowledge people are perfectly justified in making a personal choice, and you could argue it is misleading to use a diagnostic label in relation to yourself that you have not formally been diagnosed as having.)

Having said that I am not always very good at being militant and have virtually no face to face contact with anyone I have not known for years, so have tended to slip into using ME in relation to myself and ME/CFS in relation to research or service provision when commenting on line.

With other suffers who obviously feel very strongly about one name or the other, I suspect there is little to be gained by entering into debate, as I am unlikely to alter embedded ideas and am only likely cause distress for little or no gain. Ultimately it is not that I think further debate on what we are called is pointless, I think it is potentially very useful, but that with our current level of knowledge allowing that debate to become too heated is unhelpful.

[corrected some typos]

 

Thank you @Peter Trewhitt

Yes, I am very passionate about the term CFS being disagreeable to me. Having been very mistreated by several who hear that term, has made me abhor it. Early on, very early on I had no idea this term would generate such downright nastiness and disdain from others. Even loved ones. I was innocent to what consequences a CFS diagnosis would have for me, as regards social and medical interactions.

Decades ago I was diagnosed with CFS, later confirmed as ME by a specialist in this field.

I don't know if this is the case for others, but the CFS case definitions exclude a significant number of my symptoms. Early on, recounting these "outlying" symptoms, such as neurogical and cognitive problems, were received with polite puzzlement, but seemingly nothing more.

Others may be more accepting of the term CFS, and I don't aim to change their minds. However, having run the gamut of friends', family, colleagues' and the medical profession's negative reactions to CFS, I would really like to see this dropped.

We also know that "CFS" has impeded research and likely medical education about it. Researchers are discouraged from investigating this field, funding is in short supply, and medical personnel learn little about it in their training. A perpetual circle of disdain and neglect.

I don't mean to cause a great argument here about this term, but I have had far too many negative experiences because of this name to be happy using it to describe my illness. Many people only have time to read the headlines and not delve further. CFS is a headline I would prefer not to have.

 

I no longer tell anyone what dx I have after 30 years of illness. It has never made any difference in my care. I only needed a dx for disability pension purposes.

I've never been taken more seriously if I said I have ME, which doesn't really describe what I have anyways.

 

As someone who got Ramsay-definition ME in 1983 when it was still considered a physical disease, and NOT about tiredness (it was described as 'flu-like', not 'fatigue'), the psychs had not yet barged in and taken over, and 'CFS' had not yet been invented, I can confirm that that's exactly what happened. I saw the name-change and the redefinition as 'fatigue' all unfold, and it was horrible.

I do wish a better name could be devised - after all, it was allowed to be changed once just on the say-so of one random panel in America, so why not again? Can't see what's stopping it being renamed to something more appropriately descriptive (except politics, of course).


(ETA: Edited to correct spelling typo!)

 

@EzzieD

Exactly!

 

Like Systemic Exertion Intolerance Disease?

 

I understand that the British perspective is that you had a perfectly good name - ME - that was arbitrarily changed by a committee in the US to a terrible name - CFS. As someone in the US who became ill in 1983, I have to point out that we were not being diagnosed with ME. My doctors were very kind, but they had no name at all for what was happening to me.

When CDC came up with the terrible name of CFS, it was a mixed blessing. The name was horrible and I have only met one person in the past 30+ years who liked it and she was a bit strange. But at that point we were able to be diagnosed and our symptoms could be treated. And equally importantly, we were able to find each other and organize for support and advocacy.

We all hate the name and early on, the community primarily used CFIDS. The medical community has said for years that the science doesn’t justify ME. There have been more name change polls and committees than I can count, but no one has come up with a name acceptable to everyone.

Like it or not, almost every diagnosed person in the US with this disease is diagnosed with CFS. When I have posted on FB about ME, people who were diagnosed years ago think that I am talking about another disease. I’m good with ME/CFS so that we don’t lose all of the people with a CFS diagnosis. I’m okay with a big tent until the science takes is to firmer ground.

 

You can indicate that a term is alleged or "so-called" by placing it in quotation marks - so maybe ME/"CFS" (or better: ME/"CFS") as an intermediary step to hasten its demise?

 

I've had abuse because of ME. I've had abuse because of CFS. Are either strictly accurate for what I personally suffer from? No, not to the best of my knowledge.

The name is a problem because of how I'm treated. I can call it what I like but if doctors still call it what they call it and that's what's written in notes and referral letters either by name or via ICD codes, there's not a thing I can do about that.

Even if I could rename it with the public, a few smear articles orchestrated by the SMC or whoever and it's back to square one.

We need research and better treatment, hopefully that will move us forward.

I think we do need to fight to ensure the boundaries aren't widened further but I don't see the point in opening rifts with fellow patients when we need each other.

I refer to it as ME (1 less character to type if nothing else) but if someone else wants to call it CFS then that's in my notes too as ME/CFS.

As long as no patient is left behind when we do start moving forward. I would love to see our battle be at least the beginning of the end of discrimination by diagnosis.

 

I've seen people suggest 'Ramsay's Disease' and that could be good because it doesn't specify a particular symptom that might not be provable (such as brain & spinal cord inflammation a la ME), but apparently diseases aren't named after people anymore for some reason. Just something that isn't focused solely on 'fatigue' like CFS is, would be nice, though.

 

Yes, "cfs".

 

Definitely, extremely important to not abuse or neglect people more. It would be terrible to leave people behind. This is already a leave behind disease.

 

I try to avoid using the term ME. Don't want to get into explanations about it. I would guess this is the same for many with other diseases too.

I don't know if people take the term ME seriously. Only use it with medical people. Most don't ask me anything about it. Sometimes I never include it in patient questionnaires. But I'm conflicted either way: leaving it out could be a problem; including it could be too.

 

They say that, but the thing is, though, the science doesn't justify fatigue either.

Yet the medical community chose to fixate on just that one vague symptom. The original Ramsay definition didn't even include fatigue, except for a specific and unique type of muscle fatiguability, not the same thing as general fatigue.

I remember there was an interesting letter from then-CDC director ETA Correction: not CDC director, was Chief of Laboratory of Clinical Investigation at National Institute of Allergy and Infectious Diseases Strauss to Dr Fukuda, which I can't find a full copy of now but there's the pertinent excerpt from it here:

https://twitter.com/user/status/922175279522607104


He 'felt', he 'predicted', he 'considered', no mention of actual scientific proof of any of it. Sounds like it was all about convenience and making things easy for themselves, rather than the welfare of the patients. Really rotten.

 

but that also applies to the names of some 'well-recognised' diseases and I don't see them making the same objection.
eg osteo arthritis (the 'itis' bit, there is no inflammation in osteo version)

interesting read on wikipedia
List of eponymous diseases:
"An eponymous disease is a disease, disorder, condition, or syndrome named after a person: usually the physician or other health care professional who first identified the disease; less commonly, a patient who suffered from the disease; rarely, a fictional character who exhibited signs of the disease; and, in some few instances, after an actor or the subject of a literary allusion, because characteristics associated with them were suggestive of symptoms observed in a particular disorder."

https://en.wikipedia.org/wiki/List_of_eponymous_diseases

also interesting
List of medical roots, suffixes and prefixes
https://en.wikipedia.org/wiki/List_of_medical_roots,_suffixes_and_prefixes

 

My feeling is that if/when they figure out the pathophysiology of PEM, they can name our illness after that? I personally don't have 'neuroinflammation', autoimmune, pain, insomnia etc

We have a complex chronic illness, and suffer from different symptoms, but we all have PEM in common. The dx could also include autonomic dysfunctions, which adds significant physical restrictions that determines the impact to our disability.

I think the new title of our illness would be very long though

I would like fatigue, exertion, brain fog and all those vague common symptoms left out of it.

 

we could keep the ME and have it stand for Mitochondrial Exhaustion

 

Older names are “grandfathered” in. In the US, going from CFS to ME is a name change. Just like they no longer allow diseases to be named after people - no “Ramsay’s Disease”.

And I do think that most of the people seen back in the ‘80s did say that fatigue was a major symptom. Probably depends on your definition of fatigue- whether you call being too drained to move as fatigue. It’s a horrible name - no argument. We all hate it, but until the medical community agrees on something else, we’re stuck.

And, yes, Straus was horrible. He’s been dead for a long time, but a lot of his damage lives on. He believed initially that this disease was a form of depression and, when his hypothesis was disproved by his own research, he went off the deep end. A really bad scientist. He suppressed his own research until the researchers who worked under him threatened to go over his head and release it. I don’t think that he ever recovered from being wrong.