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

[Perrier]

I agree. A proper criteria for defining our illness should include the phenomenon currently called PEM.

Those (like myself) who know their illness as CFS experience PEM that's just as real as those whose people whose national naming preferences lead them call this illness ME do. The only difference is the name that's applied. After many decades it is frankly a real drag to deal with this.

ME/CFS is a compromise naming solution. Arguing over the nomenclature is a waste of energy IMO. Especially when ME is a medically dubious descriptor if one attaches meaning to the Latin.

The term "post-exertional malaise" isn't free of its own issues, but we understand what it describes and that facilitates communication.

Rather than squabbling over national naming preferences, I wish we kept our eyes on the prize.

I'm as frustrated as anyone with the lack of progress. Trust me on that one.

Bill

I haven't followed the whole thread, but isn't this the reason why Dr Ron Davis wanted this illness called Systemic Exertion Intolerance Disease SEID?

And yes, Bill, I agree, the frustration is really building due to the lack of progress. And yes, best to keep our eyes on the prize. Personally, after watching this illness for so long, I would say that exertion intolerance brings on all the nightmares: the flu feeling, the sick feeling, the nausea, the horror of PEM. I'm not sure how the GI issues fit in though, but these are acute too.

 

[Bill]

I haven't followed the whole thread, but isn't this the reason why Dr Ron Davis wanted this illness called Systemic Exertion Intolerance Disease SEID?

And yes, Bill, I agree, the frustration is really building due to the lack of progress. And yes, best to keep our eyes on the prize. Personally, after watching this illness for so long, I would say that exertion intolerance brings on all the nightmares: the flu feeling, the sick feeling, the nausea, the horror of PEM. I'm not sure how the GI issues fit in though, but these are acute too.

Yes, SEID is one of a number of alternative names that have been floated and advocated for over the years. It never caught on. To my ears "exertion intolerance" has a strange ring. Seems to have been an widely unpopular choice.

A rose by any other name is just as thorny (apologies the Bard).

Bill

 

[Woolie]

The problem is when you get people with only chronic fatigue (and no exertion intolerance) claiming that they have ME, it devalues and trivializes the illnesses that genuine ME patients have. The use of loose criteria can render research meaningless and waste money. Also this can cause harm to genuine ME patients as it has in my case. I've been told by health professionals that severe ME is where you can work a full time job.

I totally agree that people should not confound tiredness during a tough period or a stressful job with ME/CFS. And I do agree that the CFS label increases the chances of this happening amongst patients - it leads to people incorrectly concluding they have this disease when in fact they are just tired and will recover with some rest. And that's one reason why so many of us hate the name.

But when it comes to the formal diagnosis of ME/CFS - as it is used in research - pretty much ALL the currently used diagnostic criteria, even the ones we like the least, eliminate most of those cases:

- most include a 50% reduction in functioning - this can include both work and outside activities, so it means you might still hold down a FT job, but only if you're unable to do anything much at all outside of work. (so that you exclude you severe cases with FT jobs right there)

- most require the fatigue to be of at least six months' standing, which excludes people who are having a hard time at work.

- many specify that the fatigue is not alleviated by rest.

I'm not saying I like the current diagnostic criteria, and I do think PEM is useful to include (although I have less confidence than others here in its specificity). But when we talk about the names, I sometimes feel that we are overstating the degree of the problem, that somehow if we don't use a narrow enough definition for research, all these depressives and workaholics will get caught up into the net. I have seen no evidence of that, even from the PACE data. In that study, making the selection criteria narrower did not change the way participants responded to the treatments (nobody responded, whichever criteria they met).

 

[Saz94]

I have seen no evidence of that, even from the PACE data. In that study, making the selection criteria narrower did not change the way participants responded to the treatments (nobody responded, whichever criteria they met).

Well tbh, I wouldn't expect GET to help with depression or work-stress either. CBT maybe, but not the sort of CBT used in the PACE trial.

 

[Mithriel]

That isn't what CFS means--now, or ever.

CFS is ME.

Bill

The CDC investigated an epidemic in Incline Village. Experts told them it was another ME epidemic but they ignored that and it was never mentioned in the discussions. They said it was a new disease that was defined as having 6 months of fatigue such that you could only do less than half of what you could do before.

In the UK, Simon Wessley and friends had a meeting and introduced CFS in the UK and said it was neurasthenia. For many years his website declared that neurasthenia had disappeared during much of the 20th century, completely ignoring the epidemics. He also said his ambition was to make ME disappear as a disease category as he saw them as episodes of mass hysteria.

He was willing to concede that there could be many triggers but CFS was when the body became deconditioned and patients believed they were ill but were not. That is the point of CBT and GET.

In other words CFS is fatigue that is caused by an emotional and behavioural response to having once been ill.

ME on the other hand was a disease believed to be caused by damage to the body by an initial viral attack or a continuing infection.

The fact that the words became used interchangeably was a deliberate ploy to destroy ME as a separate disease.

CFS being used to mean the symptom of fatigue rather than a separate disease is just taking it all one step further.

When the MRC gave money to research ME it went to people looking at fatigue in liver disease and things like that. Very little went to looking at the actual disease of ME.

It is all a mess but you can't understand what is happening in the BPS world unless you know where their thinking comes from.

I do not mean that anyone who is told they have ME does not have it or that there are not ME researchers who use CFS but the BPS people use CFS to mean fatigue and a lot of doctors think you have fatigue if you have ME which is not the case and it is certainly not the only or even the main symptom in people who are fatigued.

 

[Wyva]

It is all a mess but you can't understand what is happening in the BPS world unless you know where their thinking comes from.

I do not mean that anyone who is told they have ME does not have it or that there are not ME researchers who use CFS but the BPS people use CFS to mean fatigue and a lot of doctors think you have fatigue if you have ME which is not the case and it is certainly not the only or even the main symptom in people who are fatigued.

The next International Classification of Diseases by WHO will list all three under the same code, as a neurological disease. So it looks to me that instead of psychologizing the term CFS and that affecting ME, maybe it is the other way around now, CFS is becoming a synonym to the actual medical disease. Baby steps, but to me the direction looks more like this.

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

 

[Bill]

The CDC investigated an epidemic in Incline Village. Experts told them it was another ME epidemic but they ignored that and it was never mentioned in the discussions. They said it was a new disease that was defined as having 6 months of fatigue such that you could only do less than half of what you could do before.

In the UK, Simon Wessley and friends had a meeting and introduced CFS in the UK and said it was neurasthenia. For many years his website declared that neurasthenia had disappeared during much of the 20th century, completely ignoring the epidemics. He also said his ambition was to make ME disappear as a disease category as he saw them as episodes of mass hysteria.

He was willing to concede that there could be many triggers but CFS was when the body became deconditioned and patients believed they were ill but were not. That is the point of CBT and GET.

In other words CFS is fatigue that is caused by an emotional and behavioural response to having once been ill.

ME on the other hand was a disease believed to be caused by damage to the body by an initial viral attack or a continuing infection.

The fact that the words became used interchangeably was a deliberate ploy to destroy ME as a separate disease.

CFS being used to mean the symptom of fatigue rather than a separate disease is just taking it all one step further.

When the MRC gave money to research ME it went to people looking at fatigue in liver disease and things like that. Very little went to looking at the actual disease of ME.

It is all a mess but you can't understand what is happening in the BPS world unless you know where their thinking comes from.

I do not mean that anyone who is told they have ME does not have it or that there are not ME researchers who use CFS but the BPS people use CFS to mean fatigue and a lot of doctors think you have fatigue if you have ME which is not the case and it is certainly not the only or even the main symptom in people who are fatigued.

With due respect, to refight old battles over the name and to claim that CFS is just fatigue reopens old wounds for those of us who live in places where CFS is the dominant name used to describe our illness.

I do not agree that the name choice of CFS is a "deliberate ploy" to destroy ME as a separate disease, nor do i I think ME is a very accurate name to describe our condition.

The UK and the USA have different preferences for what we call this illness. Beyond the preferences there are no established differences.

As a compromise the illness is generally called ME/CFS in international circles.

The BPS people don't think ME is any more real than CFS. When CFS is conflated with simple fatigue it repeats the offense that BPS people caused in the UK.

Bill

 

[Woolie]

The UK and the USA have different preferences for what we call this illness. Beyond the preferences there are no established differences.
Bill

Just a reminder that lots of us on here are not in the UK or the US.

As I understand it, CFS is the dominant name that appears on almost everybody's diagnosis, whatever country you're from. Its not a special US thing. It's certainly the name I was given when diagnosed decades ago in Australia. Likewise in Europe, where many of our members come from, CFS (or equivalent translation) is the dominant name used in diagnosis.

 

[Bill]

Just a reminder that lots of us on here are not in the UK or the US.

As I understand it, CFS is the dominant name that appears on almost everybody's diagnosis, whatever country you're from. Its not a special US thing. It's certainly the name I was given when diagnosed decades ago in Australia. Likewise in Europe, where many of our members come from, CFS (or equivalent translation) is the dominant name used in diagnosis.

Yes, of course, this is an international forum which includes many places that have different histories with the illness and the terms used to describe it. The point I was attempting to make is that CFS is the term used in my little corner world for many decades prior to my having ever hearing the term "myalgic encephalomyelitis." I believe that I--like many people in my country--have different associations with the name CFS than some in people in the UK might have. That's all.

To me it felt like a godsend to have the CDC put a name on what was a mystery illness (as far as I was aware) at the time.

Bill

 

[Hutan]

If a person with ME/CFS or a researcher uses the illness name 'CFS', many people active in the ME/CFS community will assess the chances of that person either not being aware of ME/CFS politics, or holding BPS views as higher than if they used 'ME/CFS'. That's not necessarily right, but it does happen. Of course, there isn't a tight correlation between the name chosen and views held, and a proper assessment of a person, or a paper, should not be based on what term they use for an illness.

And of course, there are circumstances when CFS is certainly the most appropriate or most accurate term. Situations requiring compliance with medical coding systems that use CFS can be one. The Fukuda criteria were for CFS, whereas the Canadian consensus Criteria were for ME/CFS, so different terms are appropriate when discussing research that used different criteria. Sometimes use of CFS is necessary when your audience would not recognise ME/CFS. And people from particular countries or regions might tend to use CFS rather than ME/CFS.

So yes, absolutely, people should be free to use whatever name they want to refer to their illness in whatever situation, but it's good if they are aware of what others might assume when they do so. We all adjust our language to suit our audience, to minimise misunderstanding and and get our message across. And the meaning that words carry can change over time. This forum can help us understand how words relevant to ME/CFS are understood around the world.

However, I don't think there is such a UK/USA/other countries divide on the name chosen as has been suggested.
The US patient charity Solve M.E. does not mention CFS in their name.

To me it felt like a godsend to have the CDC put a name on what was a mystery illness (as far as I was aware) at the time.

. Yes, but the CDC now uses the term ME/CFS. The NIH uses ME/CFS. OMF uses ME/CFS. Maureen Hanson uses ME/CFS and has the Cornell ME/CFS Collaborative Research Center.

In my country, the patient charity ANZMES has ME in the name and refers to both ME and ME/CFS. ME Awareness NZ uses ME.

Esther Crawley uses CFS/ME here. Jo Daniels of the shopping bag fame used CFS here. Wessely uses CFS.

 

[Woolie]

Its funny when you compare how strict some of these researchers are in their approach to naming our illness against the constantly changing names they're using in the wider field of unexplained illness. There, it seems these folks can't wait to make up yet another name that helps to obscure their true meaning.

We've had "somatic symptom disorder", "bodily distress disorder" (which itself replaced somatisation disorder), and more recently, "persistent physical symptoms" and the wonderfully obscure "medically unexplained symptoms" (love the use of the word "medically" there, to imply that they can still be explained non-medically, and we all know what that means). Then there's "functional neurological disorder", the new replacement for psychogenic movement disorders and conversion disorder. And "dissociative non epileptic seizures" to replace "psychogenic seizures".

So much of a big deal made about whether "ME" is accurate, but none of the above names are accurate either, and no-one seems to care. "Functional neurological disorder" literally means an abnormality in function, but it doesn't include epilepsy, does it? Even though its a disorder of function. That's because there's a non-psychological explanation for epilepsy. So what they mean by "functional" turns to be "psychological" really. And "dissociative nonepileptic seizures" isn't accurate either. Epileptic seizures are often dissociative - they are accompanied by the experienced of dissociation (very common in epilepsy). That's not what they mean, though, is it - they mean "psychological" or "emotional" or "hysterical".

 

[Daisybell]

I tend to use CFS because if I say ME to people, they look at me blankly. That happened last week with the oral surgeon. He had no idea what I was talking about until I said “Chronic fatigue syndrome” - and even then he wasn’t much the wiser. I would love a better/different label altogether.

 

[Bill]

If a person with ME/CFS or a researcher uses the illness name 'CFS', many people active in the ME/CFS community will assess the chances of that person either not being aware of ME/CFS politics, or holding BPS views as higher than if they used 'ME/CFS'. That's not necessarily right, but it is true. Of course, there isn't a tight correlation between the name chosen and views held, and a proper assessment of a person, or a paper, should not be based on what term they use for an illness.

And of course, there are circumstances when CFS is certainly the most appropriate or most accurate term. Situations requiring compliance with medical coding systems that use CFS can be one. The Fukuda criteria were for CFS, whereas the Canadian consensus Criteria were for ME/CFS, so different terms are appropriate when discussing research that used different criteria. Sometimes use of CFS is necessary when your audience would not recognise ME/CFS. And people from particular countries or regions might tend to use CFS rather than ME/CFS.

So yes, absolutely people should be free to use whatever name they want to refer to their illness in whatever situation, but it's good if they are aware of what others might assume when they do so. We all adjust our language to suit our audience, to minimise misunderstanding and and get our message across. And the meaning that words carry can change over time. This forum can help us understand how words relevant to ME/CFS are understood around the world.

However, I don't think there is such a UK/USA/other countries divide on the name chosen as has been suggested.
The US patient charity Solve M.E. does not mention CFS in their name.

. Yes, but the CDC now uses the term ME/CFS. The NIH uses ME/CFS. OMF uses ME/CFS. Maureen Hanson uses ME/CFS and has the Cornell ME/CFS Collaborative Research Center.

In my country, the patient charity ANZMES has ME in the name and refers to both ME and ME/CFS. ME Awareness NZ uses ME.

Esther Crawley uses CFS/ME here. Jo Daniels of the shopping bag fame used CFS here. Wessely uses CFS.

As to your point that the CDC "now" uses the term ME/CFS as opposed to CFS that is correct and that's why I used the qualifier "at the time." Prior to the adoption of CFS in the United States we who were ill with this illness had no commonly available term to describe our illness. It was a mystery. So recognition by the CDC was viewed by many like myself as a huge positive.

I've said it before--and it might seem unfathomable--but I was encouraged when I first read about "yuppie flu" in the media. It was the first time I understood that other people were experiencing the same thing I seemed to be going through. Not my vote for a term of choice, but the coverage made me feel less alone.

I'd witnessed something similar in the late 70s while living near San Francisco (while attending UC Berkeley) when people--especially gay men--began dying of an illness that no one understood or had a name for. I knew quite a few people who perished in that first wave of this mystery illness. I'm sure no gay man loved the terms like the gay flu or the gay plague, but it was critical to everyone that there was news and attention about what was going on. IYKWIM.

As to the CDC and other organizations using ME/CFS as a term of choice today, I applaud those moves. It is inclusive and respectful in my estimation. Divisions over the name we call this illness are total distractions and a supreme waste of energy as I see it.

We are far better off being united front that's supportive of people regardless of their naming preferences for this illness. 100%.

Bill

 

[Bill]

However, I don't think there is such a UK/USA/other countries divide on the name chosen as has been suggested.
The US patient charity Solve M.E. does not mention CFS in their name.

I missed this point earlier. In my experience the term ME is virtually unknown and unused in the general US population and it is not that much different among people who have "CFS." ME seems to be mostly embraced by a subset of people who consider themselves activists, but it has not been the common term used here in my experience outside activist circles and especially those involved in international outreach efforts. Not a common term on the streets.

As people become more aware, ME/CFS is becoming more and more common. I don't get the sense that people wish to be divided over the term and don't sense a passion about the naming issues generally speaking.

Bill

 

[Hoopoe]

I may have said it already but in Italy the term ME is generally not used. CFS still seen as a syndrome of fatigue (instead of a syndrome of exertion intolerance). Fatigue however appears to be more socially acceptable than in other countries.

The desire to avoid having the illness associated with the symptom of fatigue because it would invite derision and contempt in a society where fatigue is confused with a character flaw may be a reason why patients want to distance themselves from CFS.

 

[Jonathan Edwards]

At least until the lockdown I would normally almost every day be talking to someone new and bring up the fact that I had an interest in ME/CFS. I quickly came to realise that it was no good saying I was interested in ME because most people were not sure that I was referring to myalgic encephalomyelitis - the disabling illness - or something else they were unfamiliar with, because ME does not crop up very often. Saying myalgic encephalomyelitis was also no good because again a lot of people would not be sure whether that was what the papers called 'ME' or some other rare illness. So like others above, I found ME no good simply because people were not familiar with it.

On the other hand saying I was interested in chronic fatigue syndrome might sound a bit like saying I am interested in rehabilitation or some other practical boring aspect of medicine. But I think it has advantages as long as I use the s for syndrome, which I do. A syndrome sounds like something accepted by the medical mainstream as a reality. It is by definition a description of some real people who have a type of problem, even if it turns out to be a less than ideal way of ring fencing a particular group.

But there is a danger with both ME and CFS that the listener will just interpret it as 'those people who are tired all the time'. It works both ways, as I think Wessely's comment highlights. For Wessely CFS meant those people who really were ill with fatigue and ME meant people who just thought they were. His friends then showed that they thought the people really ill with fatigue just thought they were.

I then tried saying I was interested in ME/chronic fatigue syndrome and I found this worked much better. The double name already implies that people (including me) have thought a bit about what it is they are wanting to define and acknowledge uncertainty. It implies something one might try to understand that is a topic of debate rather than either some category of medical drudgery or alternatively something that might not really exist. The combination also means that the term ME, which is a bit off-target in itself, can be used without people being puzzled and to emphasise that I am not just talking about people who are fatigued. It also implies, before any sceptical comment comes back, that as far as I am concerned when someone says they have ME they should be taken seriously.

 

[Hoopoe]

In Italy and many other countries society doesn't appear to have this derisive contempt towards ME/CFS that's seen in English speaking countries. Instead the main problem appears to be a lack of recognition and indifference. In the UK people in a way the topic gets more attention, more research and society is not as indifferent. That's my impression at least.

 

[Bill]

In Italy and many other countries society doesn't appear to have this derisive contempt towards ME/CFS that's seen in English speaking countries. Instead the main problem appears to be a lack of recognition and indifference. In the UK people in a way the topic gets more attention and people aren't so extremely indifferent.

I never experienced "contempt" towards ME/CFS. I did keep my condition quiet in my work life, but that's because I was in a highly competitive field where one needed to be able to perform, but that's different than feeling I'd be subjected to derisive contempt as a result of having ME/CFS. I can't say I've every had anyone treat me badly as a result of knowing I was sick with this illness. I've largely experienced kindness and appreciation.

I've been harder on myself than anyone else has, to be honest.

Bill

 

[Sid]

In online communication I use the compromise term ME/CFS to acknowledge the uncertainty and politics surrounding the name but also because I believe that ME and CFS are the same illness.

I don't accept the prevailing narrative in some circles that all was well and we were cruising until evil CDC and evil cabal of British psychiatrists came along and hijacked 'true ME' and submerged it into a CFS or CF wastebasket diagnosis.

I also don't think that there is such a thing as psychological fatigue or that the Oxford case definition selects for people with 'just' mental health problems. Where fatigue occurs in the context of a psychiatric disorder (depression or PTSD for instance), it must also caused by a biological mechanism. The null results of the PACE trial imply that even if Oxford definition doesn't select for true ME/CFS, it's still defining a serious and disabling whatever, given that these people did not improve after intensive psychological intervention.

I find the name controversy unproductive at this point. Years ago when this issue came up I felt that abandoning both terms and going with some aetiology-neutral name like Ramsay's disease or syndrome would be better because both ME and CFS names are bad but then I was informed that naming diseases after people has fallen out of favour. ME is just plain wrong and makes neurologists abuse us even more when we bring it up whereas CFS can sound trivialising and has a stigma attached to it in some countries.

 

[Sly Saint]

The battle rages on with strong, even passionate, feelings on every side of this issue. The one thing just about every patient agrees on is that there should be more emphasis on research into the cause and cure than on a name. This debate will continue until a universally accepted name and diagnostic criteria can be agreed upon.

https://www.mesupport.co.uk/m-e-information/a-short-history-of-m-e