What do you think of the IOM's new name for ME/CFS? VOTE!

[CBS]

This was my first waking thought today.

That "said," I'm more fond of the report than either the name or the dumded down diagnostic criteria.

 

[Iquitos]

I haven't yet had time to read this IOM report in any detail - so it's possible that these comments may be a bit too critical of what is being proposed regarding nomenclature.

CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfullness syndrome. So CFS needs to be dumped into a medical dustbin as soon as possible.

But I'm not feeling very excited about what is being proposed today by the IOM.

If the international medical community now wants to put a thick red line through the name ME/myalgic encephalomyelitis (due to the probable pathological inaccuracy of the E in ME) I would suggest that we could have another go at promoting the term ME/myalgic encephalopathy - which is consistent with the structural and functional neurological abnormalities that have been reported in the medical literature and cannot be seriosuly challenged.

If the docs won't accept ME in either format, I would far prefer a new name that emphasises the neurological and immunological components of ME/CFS - perhaps something along the lines of chronic neuroimmune dysfunction disease.

My gut feeling is that this IOM proposal is not going to gain sufficient support from either the international patient community, or the international medical community.

SEID is not therefore going to be the solution regarding nomenclature that we desperatelyneed.

These are rapid personal opinions - I have not yet had time to discuss this report with MEA trustees.

Maybe CFIDS with the "S" replaced by another "D." CFIDD. Chronic Fatigue Immune Dysfunction DISEASE.

I certainly agree the neuroimmune aspect needs to be emphasized.

 

[Marco]

Sorry. I'm not keeping up with these threads and what I'm saying may have already been said so apologies for that.

This morning when I first came across the proposal I quite liked it. I find few grounds to continue with ME while pain isn't ubiquitous or a major symptom in many cases and while there are some indications that encephalopathy may be appropriate we aren't there yet (sorry @charles shepherd).

I liked defining the key problem as an inability to tolerate/exacerbation of symptoms in response exertion of various types but 'intolerance' is rather vague and open to interpretation/spin and its not clear how this differs (if indeed it does) from 'exertion' intolerance seen in other conditions.

'Systemic' sounds good but what does it really mean in context. We know we have 'multi-system' symptoms but that's not what this means and what is 'non-systemic' in this context? It seems pretty arbitrary and redundant unless they clarify what they mean by it.

Finally 'disease'. The one thing I had hoped might come out of this process was objectivity free from previous biases from all sides for better or for worse. Unfortunately using disease just strikes me as a crowd pleasing sop as there's no disease process identified to warrant the term and a strong likelihood as discussed here often that the ME/CFS symptom umbrella covers a number of diseases. In the absence of any identified pathological process syndrome is appropriate whether we like it or not.

So better than the status quo and I didn't envy their task - post-exertional multi-system exacerbation of symptoms syndrome (PEMESS) doesn't exactly trip off the tongue either.

All that said I don't think the proposed name should be as important as the substantive content of the report but we all know how these things stick and the average attention span of the average GP. At least its due for review in five years time.

 

[MEsupport8]

Maybe CFIDS with the "S" replaced by another "D." CFIDD. Chronic Fatigue Immune Dysfunction DISEASE.

I certainly agree the neuroimmune aspect needs to be emphasized.

I will not use anything with "Chronic Fatigue" in the title. I never have, since I became ill 5.5 years ago, and I never will. It is not a meaningful symptom, it is not measurable, and it is not distinguishable from other diseases. Moreover, it has a long-established and very negative association in the United States that encourages disrespect, dismissal, misdiagnosis, and misunderstanding. For this reason, I have always used M.E. and never CFIDS or anything associated. Any name that contains the letters "CF" in it are both worthless medically, and disrespectful to the patient community, in my opinion.

I still strongly believe that the name should have reference to both Autonomic and Immune dysfunction in the title, and ABSOLUTELY in the diagnosis criteria. I cannot even believe the report relies so heavily on self-reported symptoms when there are clear measurable criteria available, which repeats the same problem from before. I feel like this would have been an appropriate name and criteria 20 years ago, but it is hardly cutting edge. But it is still absolutely wonderful for this to be talked about, and established as a disease by an entity seen as credible in the US medical establishment, however backwards and behind the times that US medical community is with regard to any chronic illness.

 

[MeSci]

And this reminds me that another omission in the name (and in the criteria?) is the existence of constant moderate-to-severe pain, which I think is also rather a hallmark for the majority of patients, is it not?

Not according to this poll:

http://forums.phoenixrising.me/index.php?threads/poll-do-you-have-significant-pain.32651/

 

[MeSci]

Not sure if serious.
A part of me would quite enjoy Wessely's Disease.

I wish it were his and not mine...

 

[Sasha]

Not according to this poll:

http://forums.phoenixrising.me/index.php?threads/poll-do-you-have-significant-pain.32651/

But the title of that poll is 'Do you have significant pain?' which I suspect is going to lead to those who do being selectively attracted to it.

I have zero pain, fortunately (and yet have ICC/CCC ME, complete with PEM).

 

[MeSci]

I wish it were his and not mine...

Actually, as it is so complex and variable, maybe it would be best to name it after someone - someone who defined it correctly a long time ago.

As @Sean suggested here - Ramsay's disease. (I think others have too.) That gets my vote, I think.

 

[MEsupport8]

Not according to this poll:

http://forums.phoenixrising.me/index.php?threads/poll-do-you-have-significant-pain.32651/

But that means nothing. The "patient community" in the poll are self-reporting, without any formalized study or requirement to show diagnosis, nor to have uniform diagnostic criteria. It is already clear that people lumped into the US category of "CFS" have multiple diseases, which have been cited by some of our top specialists as perhaps 8 or 12 distinct groups.

It is very clear that there is a distinguishable group of patients who have immune dysfunction, pain, autonomic dysfunction, gastrointestinal/vitamin absorption/endocrine dysfunction, and cognitive dysfunction all simultaneously in common. There is no reason to keep forcing a single name for multiple groups where individual groups are distinguishable. The point here is not to find a name that fits 100% of the population thrown into this wastebasket category, but to begin distinguishing pathology where possible so we can make progress. We all have some overlapping symptom, but we do not all have the same disease, and there is no reason to continue to give us all one name where some people have mercury poisoning, some have a hormonal imbalance, some have a viral activation, some actually have Fibromyalgia and none of the other symptoms, etc. It does us no good to keep defining a whole enormous group of people by random symptoms that we have in common like severe fatigue.

I'm happy for us all to continue to work under one umbrella, but we can't do that to the point that we ignore that there are very distinct diseases or at the least subgroups of disease present. Pain is a MAJOR hallmark for so many people, and those people deserve to have that symptom and whatever messed up pathology is behind it recognized, because it is one of the most debilitating parts of their daily experience, and a major reason their sleep is unrefreshing, they can't move anywhere or think clearly, etc. There is more going on under the surface than just pain of course, but my point is we can't just pretend it is not significant that a very clear group suffers greatly with this symptom - and I suspect the population of diagnosed people in the US have a far higher percentage of pain than in the informal poll cited here, which is a website with a lot of self-diagnosed people as well as a large international presence. Fibromyalgia for instance is often noted as a major co-morbidity of ME/CFS in the US, with some 50% of patients having that additional diagnosis.

 

[MeSci]

But the title of that poll is 'Do you have significant pain?' which I suspect is going to lead to those who do being selectively attracted to it.

I have zero pain, fortunately (and yet have ICC/CCC ME, complete with PEM).

Only about 50% of respondents have said 'All the time/most of the time' or 'Every day'. About 10% have said 'Never'.

 

[Sidereal]

I heard Cheney say 5% of his patients don't have pain but I don't remember where I saw this.

 

[cfsStevew]

I haven't yet had time to read this IOM report in any detail - so it's possible that these comments may be a bit too critical of what is being proposed regarding nomenclature.

CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfullness syndrome. So CFS needs to be dumped into a medical dustbin as soon as possible.

But I'm not feeling very excited about what is being proposed today by the IOM.

If the international medical community now wants to put a thick red line through the name ME/myalgic encephalomyelitis (due to the probable pathological inaccuracy of the E in ME) I would suggest that we could have another go at promoting the term ME/myalgic encephalopathy - which is consistent with the structural and functional neurological abnormalities that have been reported in the medical literature and cannot be seriosuly challenged.

If the docs won't accept ME in either format, I would far prefer a new name that emphasises the neurological and immunological components of ME/CFS - perhaps something along the lines of chronic neuroimmune dysfunction disease.

My gut feeling is that this IOM proposal is not going to gain sufficient support from either the international patient community, or the international medical community.

SEID is not therefore going to be the solution regarding nomenclature that we desperatelyneed.

These are rapid personal opinions - I have not yet had time to discuss this report with MEA trustees.

Hi Dr Shepherd

Thanks for your response on this. I saw your piece in the ME Association site. I noted your comments about no robust evidence for inflammation. Is this because the japanese study is too small? Or were you suggesting that the inflammation seen there may be due to other factors? Im curious about the number of abnormalities we've seen in research - but why its not regarded as strong enough. When neurologists reject there being inflammation in ME patients - how significant does the encephalitis need to be for it to be taken seriously in medical circles? Is it always easy to track down these sorts of inflammations? They team at the IOM seemed to review a lot of literature. Im trying to understand why when I as a ME patient and undergraduate having studied neuroscience, neuropharmacology etc sees the research it appears to me a fairly strong indication of chronic low grade neuro-inflammation and other endocrine dysfunctions - but there seems to be a disparity in how it appears to me and the rest of the medical world...

I guess my question is how clear does the pathology have to be in order to get a clear pathological name?

I very much would support your name suggestion of Myalgic Encephalopathy for example...over a symptom focussed name...but it seems a retrograde step when we are just on the cusp of hopefully replicating and discovering more brain inflammation - to then get rid of that name...?

 

[Sasha]

Only about 50% of respondents have said 'All the time/most of the time' or 'Every day'. About 10% have said 'Never'.

I know, but bias isn't absolute - and this is a small sample. I don't think we can conclude anything from it.

 

[SOC]

A part of me would quite enjoy Wessely's Disease.

Isn't that already taken for arrogant sociopathy combined with extreme paranoia? No, wait, not yet....

 

[Simon]

Results one day on

By the magic of mental arithmetic (unreliable magic in my case), I can declare the initial results of this poll of patients' views of the new name are:

- cue unnecessarily long pause and melodramatic music -​

At least partly positive: 52.5%
Better than the status quo:
- and patients should get behind this: 20.2%
- but I wouldn't endorse it myself 19.2%
- but I'm unsure at this time whether I would endorse it myself: 10.1%

Not impressed: 47.5%%
- No better than the status quo: 13.1%
- A waste of time: 37.4%

So pretty-even, though only one in five would positively get behind the new name.

=================================​

I can't help thinking that a bit of consultation would have produced a better and more popular name, as many have pointed out, even without changing the essential idea. "SEID"?

Personally, I do like the idea of focusing on the cardinal symptom, rather than the stll-to-be-nailed pathology, but I started this thread because I really wanted to know what other patients think. Plenth of diversity out there, and good ideas: I'm personally very keen on involving patients as partners in research (not just as participants, and not as something 'nice to do' but because it makes for better research) and think involving patients could have added something to the naming process too

Not that there's any chance of a name that everyone will like...

 

[Tammy]

Actually, as it is so complex and variable, maybe it would be best to name it after someone - someone who defined it correctly a long time ago.

As @Sean suggested here - Ramsay's disease. (I think others have too.) That gets my vote, I think.

The more I think about it, I've just about come to the conclusion that this is the best way to go too. ....................at least no one could jump to a conclusion based on how the name is described..............and it is more easily remembered..........Ramsay's disease gets my vote also (for now)

 

[peggy-sue]

I'm not sure about it yet, but I do think it is rather too similar to SIDS (Sudden Infant Death Syndrome) as a working acronym.

 

[MeSci]

Too much focus on the name, that name change will come later. The most critical change, the most poigniant pointt is stating that it is a biomedical disease. This fact alone undermines the entire hypothesis, theory on ME/CFS as a 'false sickness belief', a psychogenic, psychosomatic somatization by Wessely and his ivory tower cohorts It puts him on the defensive as it undermines the PaceTrail without any replication, CBT and GET for treatment modalities which makes the condition worse. It makes him out as a Quack especial with his 'fear avoidance' theory. They recieve funding from the NIH so they must play by the NIH rules. Wessely will be on the defensive. Wait for his barge of information coming out from the SMC.

The best attack is to ridicule his statements to show the public how outlandish they are. Mocking is a very effective tool to change entrenched public perceptions.

Might the quacks not try to 'psychologise' the 'intolerance' by 'proving' that it is due to fear? I am having trouble finding the new diagnostic criteria in this thread, BTW - I'm sure I saw them somewhere!

 

[MeSci]

I will not use anything with "Chronic Fatigue" in the title. I never have, since I became ill 5.5 years ago, and I never will. It is not a meaningful symptom, it is not measurable, and it is not distinguishable from other diseases. Moreover, it has a long-established and very negative association in the United States that encourages disrespect, dismissal, misdiagnosis, and misunderstanding. For this reason, I have always used M.E. and never CFIDS or anything associated. Any name that contains the letters "CF" in it are both worthless medically, and disrespectful to the patient community, in my opinion.

For me a reason to avoid 'chronic fatigue' is that the media lazily and repeatedly just use that - 'Chronic Fatigue' - without even the word 'Syndrome' - in headlines, and then go on to confuse the term with CFS and ME in their articles.

 

[WillowTree]

I think the proposed name is terrible and sets us up for more derision. I thought I would never in my life say this: but I think I prefer Chronic Fatigue Syndrome to Systemic Exertion Intolerance Disease. That just sounds unbelievable to me and, frankly, I am embarrassed to say that to my family, friends, and doctors. We just substituted one symptom focus for another when I believe the focus should be on neuro-endocrine-immune dysfunction. There is nothing wrong with the disease's original name, myalgic encephalomyelitis. If they didn't want to go with the "it is" part due to insufficient lack of research on brain and spinal cord inflammation, then they certainly could have gone with myalgic encephalopathy. That is so much better. I could live with that, and I would certainly have welcomed it. Right now, I am just cringing.