Suggested new name for ME/CFS

[N.A.Wright]

I wonder what the cons would be in calling it Ramey's Disease?

GG

Given the likely problems over agreeing specificity, there may well be resistance to using Ramsay because any current list of criteria or signs would be at variance with what Ramsay himself described. Anyone wanting to put serious thought into this probably should start from here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962844/ and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962881/

 

[justinreilly]

Another option would be to make ME a so-called "orphan initialism." This is an initialism that no longer officially stands for any string of words. ME would stand for ME and nothing else.

KFC no longer stands for "Kentucky Fried Chicken."

I think this would really hurt us. I think there are several interrelated negatives:

(1) I think a lot of people think orphan initialism is seen as meaningless, soulless naming by committee and almost (but not totally) as hollow corporate doublespeak. For example, I think people, especially when it was first adopted, saw "KFC" not standing for Kentucky Fried Chicken as seeming weak and fake. The discussions and thoughts from the public were like
"Why drop Kentucky Fried Chicken but keep KFC, it doesn't mean anything, it stands for nothing?"
"They are trying to deny what they are and where they came from because it is now a financial liability to be associated with "fried" but the corporation wants to retain the asset value of economic 'goodwill' associated with the letters KFC."

I think being seen as standing for nothing would be a huge liability especially for us who already are already seen by some as having a made up illness.

(2) then the focus is on ME in the sense of "me" as a self-centered person, whining about nothing and wanting to "medicalize" myself into a disease.

(3) It would give the impression that Myalgia and Encephalitis and Myelitis do not exist in the disease. The psychs will seize on this and promote the hell out of it and go further saying that the intitialism is because the supposed pathophysiology was DISPROVED. This wouldn't be true, but we have seen them get away with this type of thing over and over.

Further, there IS scientific basis to use ME. In the 2011 ICC, they called it solely ME and stated that now there is sufficient scientific basis to use that name alone.

And when and if we do get even more evidence of the pathology to support ME, it will continue to be dismissed by the psychs who will perpetuate the idea that the pathology has been disproven.

(4) we would be stuck with the internet search problem (including with hashtags which is a problem both for ME AND M.E.)

 

[justinreilly]

No government or scientific body will name it ME. Whether you call it Myalgic Encephalomyelitis or Encephalopathy. There is insufficient proof. The reason that the ME/CFS name was used for the CCC, rather than just ME as it had been called in Canada up to that point, was for that very reason. No proof for the encephalomyelitis. One of the doctors who created the CCC told me this. If they couldn't accept it, who will?

ICC did in 2011. WHO did in 1968 and still does. I believe Scotland also does. USA SSA appears to be recognizing ME as a discrete disease in its latest ruling on "CFS." Every branch of HHS (and the President) is using ME/CFS as the default term except for CDC, but Unger used ME or ME/CFS at the IoM meeting.

(CAA, though not a govt agency, also is using ME/CFS a lot now and they had said only about a year ago that they would not change from straight "CFS" until after CDC did).

This is a pivotal point where we can make the transition from ME/CFS and "CFS" to ME. I think we need to seize it.

 

[Kati]

I tweeted a question as part of the incoming #bioethx tweet chat on #mecfs: what would happen if tuberculosis was renamed 'chronic cough syndrome'?

Words matter.

 

[Delia]

The IoM may appear to be asking us for a name but this no better than a bully in the schoolyard holding up your books over your head, to watch you struggle in pain.

Don't fall for this trap guys.

Since when has any patient cohort been Able to name a disease/condition, let alone be asked to name it.

Hell, if *we* named it that would automatically put it into/keep it in all-made-up/never take serious territory. Forever and ever. And that accomplishes the real goal (see below) only makes it us who puts the nail in the coffin on our collective disease, currently known as ME/CFS. And it would wash their hands of the responsibility so it won't come back to them, as the gulf war study has!!!!


is this opening up the naming to us a result of the Gulf War fiasco?

They clearly had the new name in mind from the get go, clearly had marching orders to fold us into the Gulf War Illness chronic multi-system illness name to give both grand exercises of bullshit legitimacy as well as keep us out of costing anyone money, ever, forever. Ask yourself Why are they changing now? What has happened to the IoM politically?


(Or to mix metaphors: Do not take candy from strangers! Especially ones in the windowless IoM van.)


I say don't do this useless swatting at books. The name really shouldn't come before the research. So that should say something. We've been denied so much in research for fifty years since Ramsey and M.E.

We should make that our point:

We don't have a name because we've been denied adequate research for fifty years, and thirty years ago they obscured the condition by renaming without research to back up the name change. (thats a real polite way to put that history!)

Don't play their game. Don't fight amongst ourselves. Don't scramble around flailing our arms at what we need but they are holding up out of reach.

Call it what the CCC calls it for now, and fund the research equal to our numbers and let the research guide any new naming efforts later.

 

[SOC]

I understand the problem with searching me. That is why we need to spell it M.E. all the time.
M.E. is really the natural, easiest transition from ME/CFS. It makes the most sense for right now. As most have stated, there is no ideal answer that everyone is comfortable with. Do we want to be stuck with a name that describes a symptom for another 30 years?

M.E. still doesn't work well in search engines, so it's not going to be the best accepted name in the long run. M.S. has the same problem. Because both names are historical, they'll probably remain. However, if name change is up for discussion, any scientific person worth their salt is going to advise a new name that is easily found with a search engine.

 

[alex3619]

If the recent (last seven years) findings in pathophysiology start tying together, then we may see a new name very quickly. We cannot rush the name. The main focus is still research, research funding, and research priority.

 

[Min]

We already have a name, myalgic encephalomyelitis. Or we could go back to calling it non paralytic polio. The name CFS trivialises a devastating neurological illnesses.

 

[rosie26]

I agree ME is suitable for now and always has been in my view until research proves otherwise.

 

[SOC]

It looks like the most common thinking here is that "CFS" needs to be abandoned ASAP and ME will do as a placeholder until we have a better handle on the pathophysiology of the illness.

I have some reservations about the use of "ME" in countries where even that name has already been besmirched by the BPS idiots. Granted, the name itself is okay, but the amount of work required to undo the damage done by untruths (aka LIES) told by certain (so-called) scientists, politicians, and the media in those countries would be incredible.

Once we know more about the illness, perhaps a logical name will become apparent -- one that is accurate, meaningful, searchable, and above all, not demeaning.

 

[alex3619]

Accurately describing key pathophysiology is key. Any doctor who hears the name should have a good idea what is going on, just from the name. Yet for now we lack a coherent integrated picture of the pathophysiology, its all in pieces.

 

[Forbin]

It would give the impression that Myalgia and Encephalitis and Myelitis do not exist in the disease. The psychs will seize on this and promote the hell out of it and go further saying that the intitialism is because the supposed pathophysiology was DISPROVED. This wouldn't be true, but we have seen them get away with this type of thing over and over.

I don't disagree with your critiques about using an initialism, but I would suggest that the use of the term myalgic encephalomyelitis, while it no doubt conveys a sense of real disease to lay people, has perhaps been less effective in swaying the opinion of medical professionals.

Consider this bit from the opening paragraph of a recent article by SW...

‘I can’t understand why they think it’s an encephalomyelitis,’ one neurologist told me. He was a world expert on encephalomyelitis, an extremely rare and usually fatal inflammation of the brain. He then referred a patient to me with a note: ‘Dear Simon, please see this patient. There is nothing wrong with her.’

http://www.spectator.co.uk/features/7190703/mind-the-gap-3/

As near as I can figure, the article as a whole seeks to argue that some unknown neurological condition may be provoking largely illusory manifestations of "somatic" symptoms which would thus make ME some kind of intersection between psychiatry and neurology. I don't agree with that, but that's beside the point I'm trying to make.

It's the quote by the neurologist dismissing the concept of encephalomyelitis in ME that is of concern.

As Dr. Komaroff mentioned in his closing statement at the recent conference, M.D.'s have been trained to think that encephalitis is a fulminant, obvious and dire condition. Until it can be proved (and disseminated) that the brain can also experience chronic, low grade inflammation, I fear the name M.E. is going to continue to be brushed aside by a good number of professionals.

I've been looking, so far without success, for a Latin/Greek word which means 'low grade encephalitis" or even just "low grade inflammation." If something can be found, perhaps that is a route worth perusing.

[P.S. The quote attributed to me atop message #26 is actually from post #13 by Nielk.]

 

[Min]

Imaging Tracks Inflammation in Brains of CFS Patients
March 31, 2014



The symptoms experienced by those who suffer from chronic fatigue may be related to acute inflammation in the brain, according to a PET study published March 24 in the Journal of Nuclear Medicine.

Yasuhito Nakatomi, MD, from the department of metabolism, endocrinology and molecular medicine at Osaka City University Graduate School of Medicine in Osaka, Japan, and colleagues wanted to confirm suspected neuroinflammation in the pathophysiology of patients with chronic fatigue/myalgic encephalomyelitis (CFS/ME). They evaluated a small group of subjects with the disorder with a biomarker targeting activated migroglia or astrocytes, a hallmark of neuroinflammation. The imaging agent used in this study is able to capture activated microglia or astrocytes by narrowing in on a translocator protein expressed when these are activated.

http://www.snmmi.org/NewsPublications/NewsDetail.aspx?ItemNumber=11204

 

[Forbin]

RE: Imaging Tracks Inflammation in Brains of CFS Patients

Yes, that is great news!

I'm just playing devil's advocate here because there was a 2005 study by James Baraniuk, et al. (see below) which Dr. Komaroff characterized in 2010 as showing...

"...a low grade inflammation going on in the brain. There is something in the brain that the immune system doesn't like, doesn't want to be there and wants to get rid of - and that's being reflected in these proteins in the spinal fluid."

[The quote is at 3:48]

I had hoped that those results would be the basis for a convincing argument that the disease was, in fact, related to brain inflammation, but I haven't seen much evidence of that taking hold in the nine years since those results were first published.

I don't know how many studies it will take, but I'm not expecting the skeptics to slap their foreheads any time soon and say "My God! It was encephalomyelitis all along!"

Reality may be on our side, but we also need to find a way to move the ball when it comes to perception. It took more than a decade before Marshall and Warren's findings on ulcers and H. pylori were fully recognized by the medical community - and they had a causative agent wriggling under a microscope.

But, perhaps I am wrong and we are on the cusp of a great change in attitudes. I certainly hope so.


A Chronic Fatigue Syndrome–Related Proteome in Human Cerebrospinal Fluid
James N Baraniuk, Begona Casado, Hilda Maibach, Daniel J Clauw,
Lewis K Pannell and Sonja Hess
http://www.biomedcentral.com/content/pdf/1471-2377-5-22.pd=

 

[alex3619]

@Forbin, why do we need a fancy Greek or Latin term for low grade encephalitis? Why not do what you and @SOC are suggesting and propose Myalgic Encephalitis? It is however very similar to Myalgic Encephalopathy, and when enough science is done any new name will be superseded. I think that might be this decade.

 

[taniaaust1]

Another option would be to make ME a so-called "orphan initialism." This is an initialism that no longer officially stands for any string of words. ME would stand for ME and nothing else. It becomes a name/label rather than a descriptor like myalgic encephalomyelitis.

This would end the debate over weather the name M.E. correctly defines the disease. "ME" would instead be defined by the agreed upon case definition. You keep the name's historical context but you drop the debate over its accuracy.

[Ironically, it seems as though myalgic encephalomyelitis may eventually turn out to be pretty accurate, but in the meantime, it might be the better part of valor to go with ME standing for ME and declare the name issue moot.]

At first, you'd need to make this clear in text: e.g. "The disease known as ME (which once stood for Myalgic Encephalomyelitis) has a history dating back to at least 1934." Over time the explanation becomes unnecessary.


This sometimes happens in the corporate world:

SAT no longer stands for "Scholastic Aptitude Test."
AT&T no longer stands for "American Telephone and Telegraph."
KFC no longer stands for "Kentucky Fried Chicken."

Technically, ME would be an initialism and not an acronym because it would be pronounced "M.E." and not "me."

This would be very bad as M.E. isnt searchable and of cause any illness needs to be internet searchable. Try doing a search on M.E. and you will see nothing on the illness ME comes up as the goggle search doesnt consider you added the dots and hence its just searching for the word "me" . The ME needs to stand for something if we want to be able to search for this illness.

 

[taniaaust1]

Well, there's the problem that the powers that be have decided not to name illnesses after people anymore. It doesn't add clarity to the nature of the illness and tends to cause more confusion than understanding. And it causes fights among scientists and advocates about who is worthy of the "honor" of having something named after them. This is actually true across all science now -- we name things for what they are, not after people. Hennessy's Disease simply won't fly.

That isn't to say we don't need a better name. That's a given, as far as I'm concerned.

If ME ends up not being acceptable.. and they cant name it after a person due to that rule (I wouldnt mind Ramsey disease if the ME name had to be changed) and there isnt enough good science to name it after an actual testable abnormality, maybe it then would be best named after a place eg "Tahoe Disease" (Lake Tahoe was where the most well known outbreak happened, Tahoe is already familar for anyone who knows ME history and would be easy for those already diagnosed to remember).

This would also have the bonus of whenever someone asked how this disease got named.. then they would be told about that it was named after an outbreak.. so adds more to making this disease sound like a serious one.

I think if they gave things a new name some things have to really be considered.

1/ The name needs to consider the patient group and such needs be pronounable for most of us (ME the full name, I cant even pronounce most of the time).

2/ The name needs to be easy for us to spell (how many of us spent years struggling to spell the whole ME name?)

3/ The name needs to be internet searchable (so simply M.E. without that having any meaning of what the letters mean, wont do)

4/ The name cant belittle our illness at all!

5/ The name needs to be one in which wont cause conflict or disputes eg calling it something like "Cheney disease", naming it after someone who is currently living would be a bad idea even if it was possible.

6/ The name should not misrepresent the illness in any way

 

[Cheesus]

I do not have the same in depth understanding as others. However, I think my position as a relative newbie offers, at the very least, a diversity of perspective.

In my opinion, ME is a good name. Many people here will have gone through long trials and tribulations fighting to get the disease recognised as a real organic issue - something I have fortunately not had much first hand experience of dealing with. Now those efforts are coming to fruition. I can tell people I have ME and I talk opening about it on facebook, and the responses are generally those you would expect of people who have just heard you have a devastating physiological disease. Amongst younger generations, at least, there is very little stigma attached to the name.

I think renaming it now will just throw it into confusion again for a long while. A name change won't be popular knowledge and we will be explaining to people what we have all over again. ME is becoming understood, and people are willing to understand it.

Moreover, the recent finding that we do indeed have neural inflammation supports the name as an accurate portrayal of the disease (at least to my lay understanding of the issue). If we are going to have a name change, can it not be to something that describes exactly the pathophysiology of the disease? Hennessy's Disease doesn't describe anything.

 

[SOC]

... maybe it then would be best named after a place eg "Tahoe Disease" (Lake Tahoe was where the most well known outbreak happened, Tahoe is already familar for anyone who knows ME history and would be easy for those already diagnosed to remember).

Nice idea, but the same rule applies. The name has to relate to what the thing is, not be some kind of "honor" to a person or place. It makes sense, but does become complicated when you don't know for certain what the thing (illness in this case) really is.

 

[taniaaust1]

Our doctors and the IOM committee have pretty much come out and said "We want to rename it. We just don't have any great ideas. Tell us what you want it to be called." So if we can find something we can accept, they likely will as well.

I do not want IOM naming anything esp if they are missing ME up with CFS and then slamming a name ontop that mess. I do not want CFS to be renamed ME as many who have CFS do not have ME.

I do thou want to keep the ME name until more is known about this illness as I dont want this name to be changed time and time again. (at which time maybe we could be given a name which we can pronounce and spell!!). What's the point of having a name when most of the ones with it cant say or spell it.

Anyway.. my top 2 current choices for ME (not for CFS) are
1/ M.E. (with this being the abreviation for the common used longer words, Im just not saying it as I cant spell it)
2/ Ramsey Disease
3/ Tahoe Disease