Resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended.

Yann04

Yann04

Senior Member (Voting Rights)
As the title suggests I’m looking for resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended.

Specifically I’m in contact with multiple people and communities that use the terminology “CFS” or “CFS/ME” and I would like to share with them a convincing document or webpage on why they should employ ME or ME/CFS.

I found this lovely piece in this forum’s library but it is a little too descriptive for my purposes and relies on the reader having a general knowledge of the field (such as recognising the BPS acronym) which I don’t assume the people I want to inform have.
 
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Wikipedia has a short summary in the Naming section:
Many individuals with ME/CFS object to the term "chronic fatigue syndrome". They consider the term simplistic and trivialising, which in turn prevents the illness from being taken seriously. At the same time, there are also issues with the use of "myalgic encephalomyelitis" (myalgia means muscle pain and encephalomyelitis means brain and spinal cord inflammation), as there is only limited evidence of brain inflammation implied by the name.  The umbrella term ME/CFS would retain the better-known phrase CFS without trivialising the disease, but some people object to this name too, as they see CFS and ME as distinct illnesses.
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Or if you're okay with just sending them what an AI said, I think this came out decent, and it also provided some references that might have something good:
The term "Chronic Fatigue Syndrome" (CFS) is considered problematic by many patients and experts for several reasons, which is why the terms "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (ME/CFS) or simply "Myalgic Encephalomyelitis" (ME) are preferred:

1. The name "Chronic Fatigue Syndrome" trivializes and misrepresents the severity of the illness, reducing it to just being tired or fatigued, when in reality it involves a complex array of symptoms affecting multiple body systems[1][4].

2. The term "fatigue" fails to capture the severity and disabling nature of the condition, which can leave patients bedridden or housebound[1]. Symptoms go far beyond just feeling fatigued.

3. The term "syndrome" implies the illness is just a cluster of symptoms without an identifiable cause, when research suggests there are underlying biological abnormalities and potential triggers like viral infections[1][3][4].

4. The name CFS was originally meant to be a temporary placeholder, but it became entrenched despite efforts to rename it to something more accurate and acceptable to patients[4].

5. Many patients feel the term ME better captures the neurological, immunological, and multi-systemic nature of the illness, with "encephalomyelitis" referring to inflammation of the brain and spinal cord[1][4].

6. Surveys show the majority of patients prefer the term ME or ME/CFS over just CFS, finding the latter name stigmatizing, misleading, and inappropriate[4].

In summary, ME/CFS or ME are preferred because they better reflect the complexity, severity, and physiological underpinnings of this debilitating multi-system disease, whereas "Chronic Fatigue Syndrome" is viewed as an inaccurate and inappropriate name by many patients and experts[1][3][4].

Citations:
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8150911/
[2] https://virology.ws/2022/01/28/tria...-worry-says-new-study-from-professor-chalder/
[3] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734915/
[4] https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02455-0
[5] https://medlineplus.gov/myalgicencephalomyelitischronicfatiguesyndrome.html
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Yann04 said:
Specifically I’m in contact with multiple people and communities that use the terminology “CFS” or “CFS/ME” and I would like to share with them a convincing document or webpage on why they should employ ME or ME/CFS.
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I don't actually think you should not try to do that because it isn't justified by anything useful.

Medical terms are always less than ideal. Chronic fatigue syndrome isn't that bad. It describes a syndrome - which is what ME/CFS is - and fatigue is the simplest commonly used word to label it. The term may have become problematic because it was used by psychiatrists but in fact that tended to prefer chronic fatigue without further specifying.

ME is a very problematic term because it is often used to imply some specific neurological disease typified by the Royal Free epidemic which led to the term being invented. The apparently neurological features of the acute illness in that epidemic really have nothing much to do with ME/CFS as we now understand it. When McEvedy and Beard claimed that neurological signs were psychiatric they were referring to the notes of patients during an acute illness, not the long term syndrome that followed. People with ME/CFS do not have neurological signs and symptoms of that sort, or at least if they do it probably has nothing much to do with their ME/CFS.

To me, the advantage of ME/CFS, or equally CFS/ME is that it implies that the user is aware of the confusion over the historic terms and appreciates that what is being described is a syndrome that includes something most easily described as fatigue but which also has specific features that Melcin Ramsay did identify as long term sequelae after the RFH epidemic.

I think Wikipedia get it wrong because ME/CFS or CFS/ME is not an umbrella term at all. Chronic fatigue was the umbrella term that we are well shot of. The combined term indicates an appreciation of complexity and specificity. The AI version quoted is just full of errors so I would steer well clear.
 
Thank you for the answer. Maybe i am getting a knee-jerk reaction against CFS and CFS/ME because I associate these terms with research and people who have continually downplayed and psychologised the illness.

Personally fatigue (not including brain fog and muscles not responding to input which sometimes makes me feel paralysed) is a relatively minor symptom for me and doesn’t define my illness in any major way. Although it is still present and I fit all major diagnostic criteria. I think this biases me against CFS as a term, but again it is not like myalgia defines my illness either.

I like the “ME/CFS” compromise, or atleast hate it less than the alternatives, but as you mentioned, maybe it is not worth spending energy to try to popularise it.

Also as someone with no medical background who suffers from very severe ME/CFS, the term CFS just “feels” wrong in that I’m embarrassed to say the reason I have abandoned all my life’s dreams and passions and am unable to properly communicate with friends and family is due to “Chronic Fatigue Syndrome”. Therefore “ME” sounds a lot more medical and “serious” to my medically uneducated self, but that doesn’t mean it is medically correct which I realise is a serious issue.
 
This is probably not much help to the aim of this thread, but for me the biggest concern about CFS is that people generally think they understand what it means when they don’t, so they don’t look further, whereas they usually don’t understand ME or ME/CFS so they ask.
 
When SEID was first suggested patients were largely against it. So it never caught on.

(I was one of those for it, but that view did not win the day. I think it too late now to be changing the name again until we have a much clearer handle on the basic nature of the disease.)
 
Peter Trewhitt said:
This is probably not much help to the aim of this thread, but for me the biggest concern about CFS is that people generally think they understand what it means when they don’t, so they don’t look further, whereas they usually don’t understand ME or ME/CFS so they ask.
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100% agree that this point is more important than people give it credit for. Will continue this in a mo, next post.

DO need to note that of recent times I've been hearing @Jonathan Edwards note of 'we should all be using ME/CFS' in my head a lot more recently just because we do ourselves no favour as a community by allowing confusion to be sewn. If we want the actual features of the condition to be heard then we need to start banding together to nail what we want people to hear and making it consistent across all of us and at least that as a term is what is on the new guideline so we have a chance. The issue is the excuses keeping SNOMED and anythign on medical records still being CFS so making it irrelevant if we are grown up 'dropping ME'.

Maybe things are less bad in any other country than the UK, but fatigue has been so deliberately distorted as a term by certain individuals for the sake of strange career aims we have no chance of controlling perceptions even if we could control how CFS was used.
 
forestglip said:
It seems to have hallucinated the "placeholder" reason as that's not in the cited source.
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It's not actually citing any of the sources directly, it's just generating text that looks as if it does, because those sources are somewhere in the training data that gives it its probabilities for each word following the previous one. That's why it lists five "citations" but only 1, 3 and 4 are "referenced".
 
Sean said:
When SEID was first suggested patients were largely against it. So it never caught on.

(I was one of those for it, but that view did not win the day. I think it too late now to be changing the name again until we have a much clearer handle on the basic nature of the disease.)
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I thought it was technically much better. However, I also sadly am close enough to seeing the dark side of human beings that the 'exertion intolerance' part struck me as something that would just be twisted and taken the mickey out of

Like BACME (and other horrid idiots) trying to twist Noise or moving pictures or light etc absolutely sapping our energy and making us ill into 'sensitivity issues' and using terms like hypersensitive that then get suggested as being 'improved by exposure'
 
bobbler said:
@Sean I thought it was technically much better. However, I also sadly am close enough to seeing the dark side of human beings that the 'exertion intolerance' part struck me as something that would just be twisted and taken the mickey out of

Like BACME (and other horrid idiots) trying to twist Noise or moving pictures or light etc absolutely sapping our energy and making us ill into 'sensitivity issues' and using terms like hypersensitive that then get suggested as being 'improved by exposure'
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As a wild card, just to ask the question:

WOuld changing to 'Chronic Fatiguability Syndrome' - if done with enough of a campaign about it - be a short term solution to solving one of the major issues

And would there be some arguing that was somehow inaccurate? Because I didn't realise until recent years but what I always thought was 'fatigue' is actually 'fatiguability'

So whilst it doesn't solve the 'we are ill and it is far more than that' issue. It would perhaps need something added to underline the Workwell Foundation finding/emphasis/research that we are not 'unfit' however of course (given the layman's meaning of that term some might take from it)

At least if, and only if, it was used as an interim measure to emphasise the opportunity that all those in the medical world need educating on it being fatiguability ie don't give us nonsense about 'suggestions to boost or manage your levels' because it is 'a limit/envelope' that would/could be a step change.

I'm currently feeling like this is the issue I next need to gently emphasise with HCPs I might be in contact with, who 'get it' from reading the eg physiosforme stuff, then you get a sense the misinformation that must be absolute constant bombardment in the allied professions in particular just tips them back off onto a tilted direction... and they have no idea how harmful and 'not a small change' that deliberate twist they've been encouraged into is.
 
Yann04 said:
As the title suggests I’m looking for resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended.

Specifically I’m in contact with multiple people and communities that use the terminology “CFS” or “CFS/ME” and I would like to share with them a convincing document or webpage on why they should employ ME or ME/CFS.
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When talking with folks in the USA I often mention that the reason I use ME/CFS vs. other alternatives is that this is the term used by the CDC, NIH, and several other government entities.

I realize that this reasoning might not work for your situation, but I'm posting it here for others who might find it helpful.
 
NelliePledge said:
Yes even the NHS and Department of Heath use ME/CFS officially.
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well.... I use ME/CFS because the new Nice Guideline is ME/CFS (where the old one is CFS/ME) if the HCP I'm meeting is going to google it etc.

But I still find that due to the notes and letters and drop-downs only using CFS that even though I state this isn't me 'being pedantic' but because the old guideline was the opposite and harmful (so if they google it the wrong way around, or the old one is still there) I'm not particularly sure most of them are really listening on that front.

I would like to think that ME/CFS means something specific and that will finally be taken on board by those who matter, but I think we probably need a concerted effort asking/expecting that change to take place because my experience and guess is that it is 'potato, potato... I already think I know etc'
 
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