Survey Results: Evaluating a Proposed Name to Replace "ME/CFS

[Nielk]

A new two-part blog post summarizing the results of the recent survey on the idea of choosing a new name for the illness category that the government is currently calling "ME/CFS." = by Lisa Petrison

A 526-page detailed report is linked in the blogs.

A total of 1,146 people were surveyed. Thanks so much to all who participated in or helped out!

Part 1 (general results):

http://paradigmchange.me/wp/name-results/

Part 2 (implications of results on choosing a name):

http://paradigmchange.me/wp/moving-forward/

(Note: Part 3 focusing on the specific expressed opinions of those who said that they had ME - rather than just ME/CFS or CFS - will be released soon.)

 

[Sean]

1.
I don't agree with everything said in those two posts Neilk linked to, but I think they make some good points and are worth reading, particularly the second one, which is a good summary of a lot of the issues with the name.

A lot of work went into those posts, which I appreciate. I particularly note the following in the name question:

This is just to get a sense of what people are thinking and to generate ideas, not to try to determine what the final name should be.

I agree that these kind of surveys are more a means to get discussion going, than to get a definitive final result.


2.
One thing I do agree about with the critics, (and the one thing I think the IOM got seriously wrong), is the way the IOM handled the name issue.

What they should have done was put forward their reasonings on the different names, the pros and cons, added SEID to the list as a possible replacement, and said to the patient community, and the medical community: What do you think about all this?

I think that would have worked okay.

In fairness to the IOM and the authors, they had a specific remit, part of which was to recommend a new name. We can hardly blame them for then doing so. The fault lies with the original remit.


3.
From the second link:

A current conflict in the patient and advocacy community thus seems to be between those individuals favoring the unqualified support of the IOM...

Unqualified? Hardly.


4.
Regarding the name itself:

A particularly interesting result in the above survey is the good showing of Ramsays Disease (RD), coming third as both first choice and total mentions. Given it has not been a widely used name, and so is coming from behind, it might even be a better result for it than the immediate numbers suggest.

Ramsays has the following advantages in the name game:

i) Compared to ME and CFS it is relatively uncontroversial and carries minimal historical baggage, (far as I know).

ii) It makes no technical claim (about symptoms or pathology); and hence

iii) is free from a major source of disagreement – technical accuracy – that plagues all other names under serious consideration; and

iv) does not need to be changed as our technical understanding of the disease improves and changes.

But perhaps most importantly,

v) it may be the only name that could get widespread agreement and support from the patient community.​

The only serious objection to RD I have heard so far is that the WHO discourages eponymous names (naming diseases after people or places), which is a fair point to make, and one we have to deal with.

But to be blunt, the WHO and the general medical authorities can get stuffed on this, they don't have to live with the definitely non-trivial consequences of a zoo of shitty names and the whole ongoing debate over it all.

I support the general principle that it is better to name diseases after their basic technical features. But that requires that those features are well characterised. When they are not, then eponymous names have a legitimate, even necessary, role as a placeholder.


Best I can summarise, the basic facts we are dealing with on the name issue are:

CFS has to go.

ME & CFS (and ME v. CFS) have too much historical baggage, including that there is too much long-standing resistance within the medical profession for any form of ME.

Technically based names have real problems in this kind of situation. (Proof: ME & CFS. Enough said.)

As far as I know, CFIDS and NEID have remained localised mostly to north America and not used much elsewhere as primary names, either by patients or in the formal scientific literature. They are also both technical names.

SEID is not selling as well with patients as might be necessary to make it work. It is also a technical name, (though about as good a technical name as we will get at this point, IMO).

Whatever name is chosen has to stick (which means no serious controversy, or revisions required), and obviously it also has to be relevant.​

Which, by my simplistic reckoning, means that Ramsays is the one left standing.

With Ramsay-Gilliams (or Gilliam-Ramsays) Disease as possible variations, if we want a more international flavour.


If the patient community can present a (more-or-less) united front behind one of the Ramsay based names, then I think we have a good chance of bringing the medicos along with us, which we have to do, whether we like it or not.

One thing is for sure, if we continue to be so divided amongst ourselves on the name issue, the various authorities will not pay much attention to our views on it, and we will lose this very rare chance to have a say. This is an issue we patients must deal with and put to bed. It is costing us far too much time, energy, goodwill between ourselves, political capital with the rest of the world, and opportunities to get other stuff done.

 

[Ember]

In fairness to the IOM and the authors, they had a specific remit, part of which was to recommend a new name. We can hardly blame them for then doing so. The fault lies with the original remit.

The IOM Committee was originally asked to "recommend whether new terminology for ME/CFS should be adopted."

 

[Sidereal]

If the patient community can present a (more-or-less) united front behind one of the Ramsay based names, then I think we have a good chance of bringing the medicos along with us, which we have to do, whether we like it or not.

One thing is for sure, if we continue to be so divided amongst ourselves on the name issue, the various authorities will not pay much attention to our views on it, and we will lose this very rare chance to have a say. This is an issue we patients must deal with and put to bed. It is costing us far too much time, energy, goodwill between ourselves, political capital with the rest of the world, and opportunities to get other stuff done.

So Ramsay's disease came in third.

First choice was ME-itis which will never be accepted by any medical organisation anywhere. I think even ME-opathy would be a hard sell. I read a textbook of neurology recently where the existence of an encephalopathy in CFS was explicitly rejected. Imagine what they'd say if they knew people in the UK and a few other places referred to it as an encephalomyelitis.

Second choice was NEID (neuroimmune disease) which is a non-runner because it's so non-specific it could apply to many conditions including fibromyalgia, Gulf war syndrome, autism, schizophrenia etc.

 

[Wildcat]

.
@Sidereal wrote:
"First choice was ME-itis which will never be accepted by any medical organisation anywhere."


A wildly sweeping statment that is simply wrong. There was enough evidence for the The World Health Organisation ICD to accept the name and disease Myalgic Encephalomyelitis, and classify it as a Neurological Disease way back in 1969.

Myalgic Encephalomyelitis has been in the International Classification of Diseases continuously for 46 years!

.

 

[Sidereal]

Hi @Wildcat, yes it has been in the ICD since 1969 but what good does that do when the vast majority of doctors do not use that diagnosis?

 

[Sasha]

In all this questioning about whether people would prefer different names to SEID, I haven't seen a poll on this question: 'What is more important: having the ideal name or having the IOM report accepted?'

To those who reject the IOM report wholesale, I can understand that that distinction may not matter. But to those who think that the benefits of the IOM report far outweigh its problems, it's an important issue.

If I were an organisation such as the HHS that has a history of uselessness and obstruction in relation to ME/CFS, I'd want to squash a report that offered a big improvement over the 'CFS' name and the Fukuda criteria, and that recommended a huge increase in funding,

And if a group of patients, even if they weren't representative, were calling for the SEID name to be rejected and their own choice to be imposed, I'd think, 'Great: we can reject the report and present it as the wishes of the patients. And we'll go back to CFS and Fukuda and bury the call for greater funding.'

The community has been campaigning for adoption of ME and the CCC for years and it hasn't succeeded. It's clear that we simply don't have enough control over the process to get exactly what we want. Also, patients don't agree on what they want (which the last five weeks has proved).

The new name isn't perfect and the criteria aren't perfect (no criteria will be, at this point) but CFS and the Fukuda were appalling. The risk - the huge, damaging risk - is that some patients will torpedo the progress that the IOM report represents because it's not exactly what they want.

I've seen the perfect be the enemy of the good every single day in the five or more years I've spent on this forum. Every single day. We can't afford that mindset if we want to make real progress.

There are ways to engage constructively with this and I hope Lenny Jason will take the lead but any serious, responsible campaign to get changes to the recommendations without sending us back to the Stone Age has got to be very, very, very careful.

 

[Wildcat]

.
@Sidereal wrote:
"First choice was ME-itis which will never be accepted by any medical organisation anywhere."


In the UK, up till the late 1980's, the name/diagnosis of Myalgic Encephalomyelitis was used. There were ME-its specialists with clinics, and ME-its bioresearch. Not many, but the ME experts were very experienced, some from the time of the Royal Free Disease outbreak in 1955.

All that changed in 1988 with the CFS fatigue construct, the Holmes criteria, then compounded by Oxford and Fukuda. . The ME specialists lost their clinics, their funding was stopped, the research funding was stopped, as psychiatrists took over ME and reconstructed it as vague fatigue, with CFS being classed by the psychosocial school as a 'Functional somatic syndrome', the tricky new term for hysteria/psychosomatic.
.

 

[Wildcat]

.

Sasha wrote: "...The risk - the huge, damaging risk - is that some patients will torpedo the progress that the IOM report represents because it's not exactly what they want."


What the majority of patients wanted was the HHS to adopt the CCC/ICC as a matter of urgency, as stated in the 50 Experts Letter, and supported by the 147 Advocates Letter.

For years we had been wanting our ME experts to get together and publicly speak out for us in no uncertain terms.
They did precisely that with the 50 Experts Letter.

Its amazing how quickly that unity of ME patients together with ME experts, has been all forgotten about, in the rush to accept and endorse what is an over hasty IOM process, and an inadequate, weak criteria, and weak name.
.

 

[Sidereal]

.
@Sidereal wrote:
"First choice was ME-itis which will never be accepted by any medical organisation anywhere."


In the UK, up till the late 1980's, the name/diagnosis of Myalgic Encephalomyelitis was used. There were ME-its specialists with clinics, and ME-its bioresearch. Not many, but the ME experts were very experienced, some from the time of the Royal Free Disease outbreak in 1955.

All that changed in 1988 with the CFS fatigue construct, the Holmes criteria, then compounded by Oxford and Fukuda. . The ME specialists lost their clinics, their funding was stopped, the research funding was stopped, as psychiatrists took over ME and reconstructed it as vague fatigue, with CFS being classed by the psychosocial school as a 'Functional somatic syndrome', the tricky new term for hysteria/psychosomatic.
.

@Wildcat, if there were physical evidence of encephalomyelitis in ME, how could the psychosocial school have been able to hijack our illness?

 

[Wildcat]

.
@Sidereal wrote: "if there were physical evidence of encephalomyelitis in ME, how could the psychosocial school have been able to hijack our illness?"

By spin and more spin. 'Evidence' for the psychosocial school, consists of whatever they themselves assert.
That's how they managed to convince the world that the farcical pig's ear of a trial they call PACE, is a superlative shining example of rigorous research of the highest standard, for just one of endless examples.
.

 

[Sidereal]

.
@Sidereal wrote: "if there were physical evidence of encephalomyelitis in ME, how could the psychosocial school have been able to hijack our illness?"

By spin and more spin. 'Evidence' for the psychosocial school, consists of whatever they themselves assert.
That's how they managed to convince the world that the farcical pig's ear of a trial they call PACE, is a superlative shining example of rigorous research of the highest standard, for just one of endless examples.
.

Well, no doubt the PACE trial is disgusting quackery but I'm still unclear as to how they could have suppressed evidence of encephalomyelitis if such evidence were available.

 

[Sasha]

.

Sasha wrote: "...The risk - the huge, damaging risk - is that some patients will torpedo the progress that the IOM report represents because it's not exactly what they want."

What the majority of patients wanted was the HHS to adopt the CCC/ICC as a matter of urgency, as stated in the 50 Experts Letter, and supported by the 147 Advocates Letter.

For years we had been wanting our ME experts to get together and publicly speak out for us in no uncertain terms.
They did precisely that with the 50 Experts Letter.

And we all saw that fail to work. I was among those disappointed.

What concerns me now is that we don't seem to have learned the lesson of what limited influence we really have. We've already done a lot of unified shouting about exactly what we wanted. And the result was, that we didn't get it.

Its amazing how quickly that unity of ME patients and experts has been all forgotten about, in the rush to accept and endorse what is an over hasty IOM process, and an inadequate, weak criteria, and weak name..

Why do you think anyone has forgotten that we were unified at that point? I certainly haven't, and I see no evidence that anyone else has.

But what I see now is a failure on the part of some people to recognise that things have changed since the IOM report came out. You have your opinion about the report but many people don't share your view.

What concerns me now is that many people who expected the worst with the IOM report made plans for its release based on the assumption that their worst fears would be recognised. I think many of us feared that the report would typify the disease as some vague collection of nonspecific symptoms and would recommend CBT/GET.

The opposite happened but many people seem to be sticking to their original plan as though the landscape hasn't completely changed.

I think that's a huge mistake.

 

[RustyJ]

.
@Sidereal wrote: "if there were physical evidence of encephalomyelitis in ME, how could the psychosocial school have been able to hijack our illness?"

By spin and more spin. 'Evidence' for the psychosocial school, consists of whatever they themselves assert.
That's how they managed to convince the world that the farcical pig's ear of a trial they call PACE, is a superlative shining example of rigorous research of the highest standard, for just one of endless examples.
.

Unum etc sewed the ground with psychiatrists, then sprinkled lots of money around. So psychiatrists are really just a tool. Follow the money.

I think it is too late to affect the agenda of those who put the IOM report together. Changing the name to include ME or any derivative that would include ME patients would likely hamstring further research into patients with serious illness. Unless the criteria were changed to downgrade the focus on fatigue and highlight cognitive issues, then ME patients are better off out of it.

Keeping to the pig analogy, trying to include serious ME patients in the name is like putting lipstick on a pig.

 

[Wildcat]

.
@Sidereal wrote: "I'm still unclear as to how they could have suppressed evidence of encephalomyelitis if such evidence were available".

The UK psychosocial school have suppressed all evidence of ME being a physical disease. Surely there are enough threads and posts on this site detaling the tactics and dirty tricks of the UK psychosocial school for PR members to be very well educated in the psychosocial propaganda and spin tactics.

Those propaganda tactics are also achieved by the series of 'tame' journalists who have done the bidding of the UK psychosocial school since the late 1980's.

. They have also suppressed evidence of the psychiatric sectioning of sick children with the physical disease ME. They have suppressed evidence of numerous unlawful child protection investigations against the families of children with ME.
Peter White denies that anyone has died from ME .... etc etc etc.....

.

 

[RustyJ]

If I were an organisation such as the HHS that has a history of uselessness and obstruction in relation to ME/CFS, I'd want to squash a report that offered a big improvement over the 'CFS' name and the Fukuda criteria, and that recommended a huge increase in funding,

I was under the assumption Fukuda would still be used.

 

[Sean]

In the UK, up till the late 1980's, the name/diagnosis of Myalgic Encephalomyelitis was used.

...

All that changed in 1988 with the CFS fatigue construct,

Yes, it did, nearly 30 years ago, and now seems very unlikely to ever change back in that direction.

Would you accept Ramsays as a compromise, to help leave the damn name issue behind and get the whole show moving forward?

----------------------------------------------

Sasha says:

What concerns me now is that many people who expected the worst with the IOM report made plans for its release based on the assumption that their worst fears would be recognised. I think many of us feared that the report would typify the disease as some vague collection of nonspecific symptoms and would recommend CBT/GET.

I was quite apprehensive about the IOM, and read that report with a critical eye, but was pleasantly surprised, and have had no reason since to change my opinion.

Similarly with the draft P2P report, and hopefully soon with the final version of it.

The opposite happened but many people seem to be sticking to their original plan as though the landscape hasn't completely changed.

I think that's a huge mistake.

I fear we are going to miss a rare opportunity to influence things for the better. By far the best to come along in my 30 + years of sickness.

 

[RustyJ]

The survey blog is well worth a read by the way. A lot of work went into it. Not sure how representative it is - not sure of how to allocate bias to respondents. Lots of perspectives though where respondents were permitted to offer their thoughts.

 

[Sean]

In all this questioning about whether people would prefer different names to SEID, I haven't seen a poll on this question: 'What is more important: having the ideal name or having the IOM report accepted?'

To those who reject the IOM report wholesale, I can understand that that distinction may not matter. But to those who think that the benefits of the IOM report far outweigh its problems, it's an important issue.

This.

 

[Nielk]

@Sasha said

What concerns me now is that many people who expected the worst with the IOM report made plans for its release based on the assumption that their worst fears would be recognised. I think many of us feared that the report would typify the disease as some vague collection of nonspecific symptoms and would recommend CBT/GET.

The opposite happened but many people seem to be sticking to their original plan as though the landscape hasn't completely changed.

I think that's a huge mistake.

Clearly, there is a great chasm in how people are interpreting the IOM criteria and name. I know that you have read my blog http://www.meadvocacy.org/iom_seid_analyzed_meadvocacy_org_clarified. It outlines the reason why many of us do not accept the IOM criteria and name.

I believe that the criteria, in IOM's attempt to simplify the definition, as per HHS' request, have given us a criteria that will misdiagnose many patients who are actually suffering from other illnesses. In their quest of finding the most common denominators for ME/CFS, they have actually produced the most common denominator for other diseases as well.

In addition, the method of diagnosis is too subjective. It is basically relying on patients checking off 4 out of 5 symptoms. Until the time that science comes up with a testable biomarker, we need criteria that represent the multi-system abnormalities that this disease represents.

I don't believe that the IOM criteria will better select patients than the Fukuda. The Fukuda lacks in that they don't include PEM as a mandatory system but, unfortunately PEM cannot be safely tested as of yet. Relying on patients' subjective answers about PEM is not adequate. The Fukuda though includes immune system symptoms whereas the IOM criteria don't.

I, and many others (the majority as per this poll) do not like the name SEID. Although patients understand what each word in the name stands for, the world at large will make fun of it. They will shorten it to "exertion intolerance" or more likely mistakenly "exercise intolerance". I think that the authors meant well but in reality it will not work well for us.

It is true that the IOM report was extensive and they discussed and analyzed many of the scientific studies that were allowed as set by HHS. Their tone was respectful and understanding of the seriousness of this real disease. As far as your mention that they did not recommend GET/CBT, they were not tasked to comment on treatments. I do appreciate though that they stressed that it is not a somatoform disease.

It is the outcome of the criteria and the name that I oppose. I respectfully disagree with you that we should accept it even if it's not perfect. For me, it is way too far from perfect. I understand that right now it feels good to get all this media attention and the fact that there are write ups stating that this is a real disease. But, in the long run, we are left with the criteria nad name that the IOM created. We already have started getting flack on the name and jokes have been made of us because of it.

Once the criteria start being used by clinicians nationwide, there will be a flood of people getting diagnosed. What percentage of these will actually have the historical Ramsay's disease? How long will it take for the IOM criteria to start being used for research purposes? Instead of advancing science, it will set us back.

If your argument that no matter what we do, HHS will never listen to us is true, then why fight for more funding? We all have begged for that in the past three decades. How many CFSAC recommendations have asked for more funding? Why should they listen now?