NIH meeting follow up: Let’s drop the “CFS” from ME / CFS

[Hoosierfans]

Watched the entire NIH ME / CFS & Long COVID symposium the past two days and there was a lot of great information and avenues of research being pursued.

But one thing stuck with me…at the end of Day 2, either Nancy Klimas or Maureen Hanson (or maybe it was both…sorry…brain fog) said that it’s “time to drop the ‘chronic fatigue syndrome’ from ‘ME / CFS’” because (a) as the symposium showed, there is ample evidence this is a neuro inflammatory and energy production disease thus “myalgic encephalomyelitis” alone is more appropriate; and (b) the term “chronic fatigue syndrome” woefully misdescribes the disease in a way that is harmful to patients and the level of suffering and disability they experience. 👏🏼👏🏼👏🏼👏🏼👏🏼. They encouraged all researchers, scientists and clinicians there to drop “CFS” from publications, etc.

I’d love to hear others thoughts on this proposition. It got me so fired up, I’m ready to draft a change.org petition! 😃

 

[BrightCandle]

I largely don't care. The name isn't the issue it's the training that has gone with it to doctors. Research has to ascertain what is the root wrong in our bodies and find therapies and most research is already under ME/CFS. The time to rename it is when the root cause is understood and you can give it the right name. It's an irrelevant distraction, the far more pressing concern for the NIH is putting up the funding to beat it.

 

[forestglip]

Myself having never been formally tested or diagnosed, I would feel weird referring to myself as having myalgic encephalomyelitis. That sounds like a term where people would think you're a hypochondriac that self-diagnosed some wild condition off webmd and have no place saying you have a specific brain condition.

While chronic fatigue syndrome basically says exactly what it is. I'm chronically fatigued. I'm not sure what the underlying factors are, whether brain inflammation or whatnot, but it's much harder to argue with someone self-diagnosing CFS. Cause I'm frickin tired, and I know it.

Of course, it does sound more like a made up syndrome, or "all in your head" than the more clinical term.

 

[JES]

This has been debated forever. Five years ago Ron Davis et al. suggested the name should be changed to SEID. Nothing became of it and I don't even think it was an improvement.

If the name is changed it must be done everywhere in the world to be consistent. If that's not realistic I'm fine with the current name even though it's not precise, but influenza also means you are under some kind of influence (of the stars) if you take it literally.

 

[Blue Jay]

The name isn't what concerns me. I do feel chronically fatigued plus experiencing a load of neurological symptoms which worsen when I don't pace properly so the fatigue is one piece in the jigsaw.

 

[ruben]

For the time being at least, the most appropriate name for my predicament is to call it "long glandular fever"

 

[Viala]

CFS is way too confusing and everyone including most doctors assume it is a usual fatigue. It sounds like being tired after a whole day of work only every day and that's it.

ME is better although still not perfect. While it points to possible causes, it is too difficult to pronounce and too easy to forget, it is a medical term and I think something simpler would be better. As abbreviation it sounds too mild.

Regarding public relations CFS is better because it is easy too google, on the other hand ME for someone who doesn't remember the whole name would be difficult to find online.

 

[Wishful]

I agree that the "fatigue" part should be dropped, because what we experience is fatigue-like rather than normal fatigue (which is still poorly defined). I don't think it's worth significant effort to officially change the name, but the CFS part has bad history attached to it, so just drop it.

 

[Rufous McKinney]

the name should be changed to SEID

I am one of three known individual with this diagnosis......

(LOL)

 

[Rufous McKinney]

An extramural committee at CDC came up with this working term CFS in 1988. (I just read)

I have a chronic Eppstein Barr Virus condition, my doctors said.

so I don't know what this CFS is?

 

[Rufous McKinney]

Chronic Eppstein Barr virus is what my doctors told me, also called "impossible" mononucleosis. (thats exactly what they told me)

for my predicament is to call it "long glandular fever"

 

[lenora]

I just wish we could settle on something. Our basic problem began around the time of the AIDS epidemic and no, our U.S. govt. did not want two immune deficiency syndromes. One alone was a nightmare....and good for the gay community for getting as far as it did.

Our biggest problem was that our diagnosis was referred to as The Yuppie Flu in an article by Time or Newsweek....from then on, we were never taken seriously. No retraction of the article, no acknowledgment of the harm done, but suddenly everyone in a certain range in the U.S. became "fatigued." And yes, people do get fatigue, but not like this.

The next problem we had was getting research from the AIDS Research Community and the Multiple Sclerosis Foundation. Both are known to be immune malfunctioning and that research may have helped us. This all goes back to the early days of this particular outbreak of the illness.

If you read the history of the illness, it actually goes back centuries. Stress has to play a part in it, I don't think most of us would deny that....but it may take the wind out of the sails of the medical community if we actually admitted it. I firmly believe in a mind/body connection as well as vitamins, etc., and modern medicine. Admitting that our illness gets worse with stress is not different than most other illnesses. Viruses of different sorts, not just one or two and still no biomarker. How long, Lord, how long? A cure won't be found until the researchers have something to work with.

This is a multi-faceted illness....too multi-faceted. Long Haul Syndrome is so much like what many of us suffer. It will be most interesting to see how these patients do long term. Yours, Lenora

 

[Hoosierfans]

I just wish we could settle on something. Our basic problem began around the time of the AIDS epidemic and no, our U.S. govt. did not want two immune deficiency syndromes. One alone was a nightmare....and good for the gay community for getting as far as it did.

Our biggest problem was that our diagnosis was referred to as The Yuppie Flu in an article by Time or Newsweek....from then on, we were never taken seriously. No retraction of the article, no acknowledgment of the harm done, but suddenly everyone in a certain range in the U.S. became "fatigued." And yes, people do get fatigue, but not like this.

The next problem we had was getting research from the AIDS Research Community and the Multiple Sclerosis Foundation. Both are known to be immune malfunctioning and that research may have helped us. This all goes back to the early days of this particular outbreak of the illness.

If you read the history of the illness, it actually goes back centuries. Stress has to play a part in it, I don't think most of us would deny that....but it may take the wind out of the sails of the medical community if we actually admitted it. I firmly believe in a mind/body connection as well as vitamins, etc., and modern medicine. Admitting that our illness gets worse with stress is not different than most other illnesses. Viruses of different sorts, not just one or two and still no biomarker. How long, Lord, how long? A cure won't be found until the researchers have something to work with.

This is a multi-faceted illness....too multi-faceted. Long Haul Syndrome is so much like what many of us suffer. It will be most interesting to see how these patients do long term. Yours, Lenora

Thanks all for the comments above. Really appreciate the different perspectives.

@lenora to your point, Dr Hanson really took the NIH and general funding sources to task when she pointed out exactly what you mentioned regarding AIDS / HIV. I screenshotted her slide. Her talk was very passionate…both on the funding aspect and her research area of enteroviruses which she and several of the other presenters pushed as a necessary area od research.

 

[lenora]

Hello @Hoosierfans. Good for Dr. Hanson as I still think, this is important information that we should have had. Of course everyone was so busy making fun of us that I think we just shut our mouths and sat back. Big mistake. Still, the internet hadn't taken off and most of the work was by telephone or newsletters. It's probably hard to imagine that, but we're talking at least 30=35 years ago.

I can distinctly remember when AIDS came on the scene....and then we started complaining. (After the article, complaints were kind of, sort of types.) Oh, I get tired of treading over the same reasons. Foolish of me.

Thanks for going to the conference and reporting back. Yours, Lenora

 

[LaurelW]

Amen to that. The term CFS has been the bane of our existence and there is no way to rehabilitate that name. ME at least sounds like a real serious illness.

 

[Rufous McKinney]

I am so grateful to Dr. Hanson. Because the "Man" really hates it when you bring up things like Money or comparing X and Y.

She;'s venturing out of her lane. To advocate for us.

It's too bad medical research is somehow, political. How do we get funding? through a political body.....thats the only way, unless its just private foundations.

 

[Andryr]

ME at least sounds like a real serious illness

ME literally means 'brain and spinal cord inflammation causing pain in muscles'. Please correct me if I am wrong.
This name may be as far from the truth as CFS. I can see no reason to prefer one over another.

 

[lenora]

Yes, and what happened to Fibromyalgia (FM), which many of us do suffer from. Personally, I'm used to CFS and a certain part of me will probably miss it. Where did FM go? Are we all cured but don't realize it?

I don't know that ME is the answer.....just too much of a mouthful. Will doctors be better about patients who have it....I can't speak for them, but I doubt it. In this country it will still be thought of as CFS. At least "The Yuppie Flu" is no longer used. As a matter of fact, even the word "Yuppie" seems to have disappeared.

The bigger point is that Dr. Hanson is truly trying to do something. I'll go along with whatever she decides. Yours, Lenora

 

[Viala]

Yes, that's important too, dropping CFS and using only ME could lead to exlusion of people who do not have ME but have all the symptoms of so called ME/CFS. We still do not know if this is truly 'ME' by definition. This could cause further confusion in the future leaving once again some people behind and we don't know how many, it could be the most of us.

I am afraid we need to think 20 steps ahead because governments will happily take on any change to continue to wash their hands of it and avoid taking responsibility.

I think we should work out a name that is not related to any possible cause and to prevent 'CFS' confusing term, then when we find the cause we can rename it again, but only when the diagnosis would be applicable to ALL the people having PEM and ME/CFS symptoms.

There is no easy way out of misnomers here unfortunately. What could work would be using a new name not related to the cause and using it with already known names, if everyone would use it. NEW previously called ME/CFS including FM or LC.

 

[Alvin2]

CFS is better known but easy to misinterpret and the name suggests its just fatigue. Calling it ME or SEID works for me.

Maybe it needs to be renamed to Living Death Disease.