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

[wigglethemouse]

The US patient charity Solve M.E. does not mention CFS in their name.

FYI - for clarification for those coming across this thread

Solve M.E. has recently started to use "Solve M.E." as their name in communications. However their official name is "Solve ME/CFS Initiative"
Source : https://solvecfs.org/about-us/

Founded in 1987 and incorporated in North Carolina in 1990 as The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, the Solve ME/CFS Initiative (Solve M.E.) relocated to Los Angeles, CA and officially changed our name in 2014. Solve M.E. is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy, and patient support. Solve M.E. is the foundational ME/CFS organization, steadily broadening strategic, collaborative relationships with patients, researchers, government officials and other ME organizations across the globe.

Their website, email, and social media all use CFS as a component
Website : https://solvecfs.org/
Email Communications : solvecfs@solvecfs.org
Facebook : www.Facebook.com/SolveMECFSInitiative
Twitter : www.twitter.com/plzsolvecfs
YouTube Channel : www.youtube.com/solvecfs
Instagram : www.instagram.com/solve_cfs
Quarterly Newsletter : The Solve ME/CFS Chronicle

 

[Perrier]

The first doctor who looked at our family member, (an infectious diseases doctor well aware of CFS and ME) put on the medical summary: post viral syndrome (in French). We used that for a bit. (That also met with stares.) After that we used CFIDS for a long while--and I would enunciate it to doctors: chronic fatigue immune dysfunction syndrome. Primarily because every single time we said CFS we were met with such preposterous derision and humiliation that I, as a parent, could no longer stomach it. I saw the symptoms at home, I saw a myriad symptoms and fatigue was not primary--that came after exertion attempts!

I could not endure being dismissed, diminished, time and again. "Oh, said one resident. You're tired all the time. Gosh, you should see how tired I am!" This went on non stop. And then the other question: "Is there mental illness in your family."

So, I embraced the term ME, and began enunciating that. However, now I tend to use CFS/ME because the researchers are also doing that. And we carry around a folder of literature about the illness, and I am always the doting old mother hen saying: it's not about fatigue....and then I go on to list symptoms and make references to researchers.

Folks, this ain't fun!

And it ain't any fun not knowing when there will be a treatment.

 

[Bill]

@Perrier it certainly isn't fun not knowing when there will be a treatment.

I was a young man when i fell ill. Now I'm an old man. Not sure how much time I have left. Not only no treatment, but no dispositive biomarker, or irrefutable understanding of what is going on to make us so ill.

Bill

 

[Perrier]

@Perrier it certainly isn't fun not knowing when there will be a treatment.

I was a young man when i fell ill. Now I'm an old man. Not sure how much time I have left. Not only no treatment, but no dispositive biomarker, or irrefutable understanding of what is going on to make us so ill.

Bill

We may off topic, but you have my deepest understanding. I am so furious I could bash a wall with an axe. Why can't they sort this out? There are a handful of brilliant minds on this, but clearly not enough at all, just not enough at all, not for such a serious disease. Best wishes Bill.

 

[Mithriel]

While I do not think the name Chronic Fatigue Syndrome has done us any favours at least it is better than Exploding Head Syndrome which sounds like a Monty Python sketch or, even worse, Nutcracker Syndrome which is

a rare vein compression disorder. It occurs when arteries, most often the abdomen's aorta and superior mesenteric artery, squeeze the left renal (kidney) vein. It can cause many symptoms in both children and adults, such as flank pain and blood in the urine.

Do doctors not consider how these names will affect patients? It makes you nostalgic for good old latin and greek.

 

[Adrian]

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 would agree there. I think it is useful to talk of chronic fatigue as a symptom which comes from many different illnesses. Whether it is the same in all I think is an interesting question worthy of research and that could potentially provide clues. For example would it be interesting to do a GWAS study with people who have chronic fatigue from RA or Lupus and compare with ME/CFS to see if there are some common and different genes which may indicate something about common vs different mechanisms.

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.

I think the naming issue is unfortunate especially when some talk about the 'true' ME - it feels like energy spent in the wrong place. We don't really have a clue about anything (cause, core symtoms etc) so can't separate and we don't know anything about cause either! So we should respect peoples choices for what they want to use and respect differences in symptoms (with perhaps the issue being if the symptoms are really suggesting something else (e.g. MS patients can be initially diagnosed with ME/CFS) A neutral sounding name like Ramsay's disease would be good (especially if it isn't a mouthful like MECFS and a better search term than ME). I'm not convinced stigma comes from a name it comes from the way people use the name - so the BPS croud use language intended to dismiss patients and talk down symptoms - they would do this what ever the name.

I'm of the view that patients should be able to choose the name they want to use ME, CFS, ME/CFS, SIED and doctors should use the patients prefered name (although they would never remember!).

One of the interesting separations that we have talked about on a different thread is around recovery in the first couple of years and whether that is the same disease/cause or similar symptoms with some overlapping mechanism. But until recovery can we distinguish.

 

[Invisible Woman]

I'm of the view that patients should be able to choose the name they want to use ME, CFS, ME/CFS, SIED and doctors should use the patients prefered name (although they would never remember!).

When I was first diagnosed my consultant told me I had ME but he went on to also use the term CFS. He said if he didn't then others - my GP, employers etc, might not take what he said seriously or be dismissive of what he wrote in reports because he called it ME and they didn't recognize ME but might pay more heed to his reports if he also used CFS.

This is where the problem lies. No matter what I call it, what the doctors treating me call it matters. Especially, if they are sharing information with each other.

so the BPS croud use language intended to dismiss patients and talk down symptoms - they would do this what ever the name.

This is the crux of the matter. No matter what it was called the BPS crew would have continued to trivialize it. I also believe they would also have focussed on the symptom of fatigue no matter if the name had the word "fatigue" in it or not. The fact it did just made it easier.

Unlike pain which has all sorts of descriptors fatigue is assumed to be generic. It is assumed the fatigue a cancer patient feels is the same as the fatigue an MS patient feels. I am not convinced this is the case. In my own case, I feel the fatigue thanks to too little daily levothyroxine feels different to the fatigue caused by anaemia.

Patients, especially new patients, don't always have the vocabulary or feel well enough to very accurately describe quite complex symptoms and can have vocabulary and ideas forced on them even by well intended physicians trying to understand symptoms. I have experienced this myself with doctors who are very well intended.

 

[Adrian]

This is where the problem lies. No matter what I call it, what the doctors treating me call it matters. Especially, if they are sharing information with each other.

I think the point I am trying to make is that is the wrong way around. I don't know how it would ever change but if we really believe in patient centered healthcare why shouldn't the medical profession respect the patients choice over name. Its not ambigious [edit - as in what someone is suffering from is obvious from a small selection of possible names].

 

[Invisible Woman]

I think the point I am trying to make is that is the wrong way around. I don't know how it would ever change but if we really believe in patient centered healthcare why shouldn't the medical profession respect the patients choice over name. Its not ambigious [edit - as in what someone is suffering from is obvious from a small selection of possible names].

I can see what you mean and I agree it would be nice. I don't think it's realistic though.

It would be more appropriate to educate healthcare professionals to be alert to the stigma and bias they themselves have about certain conditions. That there's lots they don't know and that it is entirely inappropriate to make judgements about patient's character, temperament, and subconscious motivations based on a diagnosis or label whatever that may be.

Even when treating a patient for an apparent mental health problem that affects how they behave and think, it would be wrong to judge the patient for that health problem, not least because it could be triggered by some imbalance in a biological process.

Why not routinely use multiple names? That might be fine with say a GP. However when a GP is referring you on to a gastroenterologist or endocrinologist he needs to be sure that they interpret the term in precisely the way it's intended. In a poorly understood disease that's hard enough with one name but with several the opportunity for confusion thrives.

Especially when you also add that most health services are multicultural and therefore you may be dealing with someone else whose first language is not English.

Then you have the whole issue of ICD codes.

 

[Adrian]

It would be more appropriate to educate healthcare professionals to be alert to the stigma and bias they themselves have about certain conditions. That there's lots they don't know and that it is entirely inappropriate to make judgements about patient's character, temperament, and subconscious motivations based on a diagnosis or label whatever that may be.

I think that is a really good point - currently there is a move to do unconsious bias training in companies (generally around race and sexism but some disability) So perhaps there is an argument for doing some equivalent more directly for healthcare professionals when dealing with patients.

 

[Sly Saint]

Merged thread

Article: Let’s drop ‘Chronic Fatigue Syndrome’

Last week I wrote a tweet as I do probably once a day sometimes more. The tweet read: “I’d like ‘Chronic Fatigue Syndrome’ (CFS) to be dropped as a term’. The tweet went viral and I felt like Piers Morgan

It came following the BBC Coronavirus special discussed Long Covid and the parallels that I’ve alluded to for the last 12 months. “I know, I know science me”. I believe the time has come to drop Chronic Fatigue Syndrome because other long term health conditions do not have such names and until this is dropped doctors, employers, family and friends will continue to see this as a made up condition. Myalgic Encephalomyelitis (ME), is one of the only chronic illness that has two definitions. Multiple Sclerosis (MS), is known as MS. Diabetes, is known as Diabetes. Irritable Bowel Syndrome (IBS) is what is says on the tin. Nobody, says to someone mid IBS cycle, yes you have ‘chronic gut ache syndrome’ or ‘chronic dialarhoea syndrome’ or even ‘chronic constipation syndrome’.

https://westenglandbylines.co.uk/lets-drop-chronic-fatigue-syndrome/

 

[Trish]

It looks like it's in a West of England local news site. I think it's a fair attempt to explain from a personal perspective some of the problems people experience with the name CFS in the UK.

 

[Ariel]

I really hope we are able to drop "fatigue" altogether sometime. It causes so much damage in perception by the public and medics.

 

[Andy]

"is one of the only chronic illness that has two definitions"

So what exactly are the two definitions?

And if ME and CFS are the two separate definitions, what is meant to happen with all of those patients who have received a CFS diagnosis if the use of CFS is dropped?

While I understand how undesirable the term "chronic fatigue syndrome" is, dropping it completely will cause issues that advocates for this action either don't consider or refuse to acknowledge would be problematic. And claiming that they are separate definitions is also problematic, as it leads to claims that people who have a diagnosis of CFS have something other than ME. And that's before we starting asking how many people diagnosed with ME have had tests showing inflammation of the brain and spinal cord?

In my opinion it's best parking the name issue at ME/CFS and then waiting for science to show us what it should actually be called; it's not a perfect solution but I consider it to be the least worse option.

 

[Trish]

I think she means 2 names, not 2 definitions.

 

[Perrier]

"is one of the only chronic illness that has two definitions"

So what exactly are the two definitions?

And if ME and CFS are the two separate definitions, what is meant to happen with all of those patients who have received a CFS diagnosis if the use of CFS is dropped?

While I understand how undesirable the term "chronic fatigue syndrome" is, dropping it completely will cause issues that advocates for this action either don't consider or refuse to acknowledge would be problematic. And claiming that they are separate definitions is also problematic, as it leads to claims that people who have a diagnosis of CFS have something other than ME. And that's before we starting asking how many people diagnosed with ME have had tests showing inflammation of the brain and spinal cord?

In my opinion it's best parking the name issue at ME/CFS and then waiting for science to show us what it should actually be called; it's not a perfect solution but I consider it to be the least worse option.

My 2 cents: I agree entirely with Andy. Let's just call it ME/CFS for now until the scientists can figure this out. Whitney wrote a long item in Facebook about this 'war.' I really just want help and treatment for a beloved beautiful family member. I despise the word 'fatigue' included in the name, but I will put up with it until there is something more concrete, which I trust has to be very soon....

 

[Art Vandelay]

I really hope we are able to drop "fatigue" altogether sometime. It causes so much damage in perception by the public and medics.

Spot on. It's time for it to go.

I've never once used the word 'fatigue' to describe my symptoms in 23 years with this illness. I feel sick, not tired.


ETA: a number of moronic, incompetent doctors have said to me "you can't possibly have insomnia with CFS" because they believed that people with ME/CFS were simply "tired all the time" which meant that I should be sleeping all day and night.

 

[Wyva]

Spot on. It's time for it to go.

I've never once used the word 'fatigue' to describe my symptoms in 23 years with this illness. I feel sick, not tired.

I think it's due to the large variation in symptoms. I do have the extreme fatigue, it is one of my most debilitating symptoms along with cognitive dysfunction. I remember @Bill had it too. It is very abnormal, more comparable to a feeling of being sedated with something than to anything else, so I wouldn't call it "just fatigue" either (and I also have hypersomnia/somnolence on top of that).

So I understand that this is not present in everyone at all, unlike the name suggests, but to some of us it is a major symptom, so I think instead of getting rid of it altogether, it would be better to downgrade it to one of the optional symptoms, like orthostatic intolerance or thermostatic instability, or tender lymph nodes in the CCC.

But I'm sorry that maybe due to patients like me this symptom was projected onto everyone else too. I absolutely hear that.

 

[Snowdrop]

I do have the extreme fatigue, it is one of my most debilitating symptoms along with cognitive dysfunction.

I have fatigue at times along with illness symptoms. How I think about this though is that fatigue for me is secondary to the fact that I don't sleep well / have insomnia. So it's this (I don't know is insomnia a symptom?) that is the focus of how I feel.

When viewed that way it focuses on what is wrong rather than one pronounced and debilitating symptom.

 

[DokaGirl]

I understand @Andy where you're coming from with your opinion on this. If the term CFS is dropped then what do these people have? But if science comes up with a new term, then maybe everyone will need to be re-diagnosed anyways.

The combined term ME/CFS is confusing. One half sounds dire, and the other half makes people laugh, sneer, lecture, withdraw support, and generally boot around the pwME/CFS.

Chronic Fatigue is a symptom, not the entire disease.

The term Chronic Fatigue Syndrome is loathesome. Hearing the term CFS gives anyone and everyone permission to treat the person with this illness as sub human. Everyone, even those without a shred of medical training think they know what's wrong with the person with CFS. And, they tell them.

I was dismayed to see that supportive medical personnel started combining the 2 terms. I had hoped this would gradually morph into just ME. I understood this might be the thinking.

My understanding, which won't be everyone's, is that ME was used in the 1950s, but during the mid 1980s this terrible disease was downgraded by using a new name, Chronic Fatigue Syndrome, along with a simplified case definition that left out important symptoms Dr. Ramsey et al., had studied and included in the ME definition.

I would welcome a new term if and when science is able to pin point what is going on for us. Sooner rather than later would be preferable.