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

What do you think of the IOM's new name for ME/CFS: SEID

  • Better than the status quo, but I wouldn't endorse it myself

    Votes: 27 16.9%
  • Better than the status quo, patients should get behind this

    Votes: 32 20.0%
  • No better than the status quo (most reseachers/clincians use CFS, occasionally ME/CFS)

    Votes: 19 11.9%
  • A waste of time

    Votes: 58 36.3%
  • Better than the status quo, but I'm unsure at this time whether I would endorse it myself.

    Votes: 24 15.0%

  • Total voters
    160
  • Poll closed .

Kati

Patient in training
Messages
5,497
A lot of people have talked about consulting patients.

But I think there is little chance it would have led to agreement:

Some people only want myalgic encephalomyelitis as the name.

And some people don’t want myalgic encephalomyelitis as the name.

(and many of the people who want myalgic encephalomyelitis won’t have myalgic encephalopathy).

I don’t think having a consultation would magically solve this impasse.

(ETA: This was written in reply to Snow Leopard's message which popped up when I posted).

Patients have been consulted. They were invited to give comments both at the in-person meeting and by email. There was a campaign going on that patients should boycott the IOM process (just like P2P).
 

Dolphin

Senior Member
Messages
17,567
I think a poll would ideally not just involve patients but also professionals. One could have a central polling site and people could indicate their interest in the illness (e.g. patient, researcher, clinician, etc.) and the results could be subdivided.
 

Dolphin

Senior Member
Messages
17,567
I remember in the early 2000s, there was a proposal that had some agreement that the illness would be called Neuro-Endocrine Immune Dysfunction Syndrome. Quite a lot of work was put into the naming process and it had some momentum with professionals. Myalgic Encephalomyelitis was then going to be a subgroup of this.

However, people didn't get behind it. As I recall, the main problem some people saw with it was they felt that the acronym NEIDS could be pronounced "needs".

I'm not confident there will be agreement. And I'm concerned we will then just be left with chronic fatigue syndrome like has happened before. So that's one of the reasons I'm willing to get behind systemic exertion intolerance disease instead of chronic fatigue syndrome. I think it has some momentum now that the IoM has recommended it. Nothing else may get any momentum: the next opportunity to ditch chronic fatigue syndrome might not happen for one or two decades.

That's not to say myalgic encephalomyelitis doesn't have a place. I just prefer systemic exertion intolerance disease instead of chronic fatigue syndrome.
 
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Dolphin

Senior Member
Messages
17,567
If there is a poll, it would be good if there was the facility to not just find out about one name but instead get opinions on lots of names. Options might be to give preferences i.e. 1st preference, 2nd preference, 3rd preference, etc.
Alternatively ask for each potential name to be marked out of 10 or 100 or whatever.
(This couldn't be done with normal Phoenix Rising polls I know).
 

SOC

Senior Member
Messages
7,849
It is my understanding that the name SEID is simply a recommendation and that NIH/HHS would have to act to officially change the name. If that is the case, we have an opportunity to air our concerns before an official name change is made.

I doubt we are going to get much play with the "we don't think it sounds serious enough" argument. They don't care how we feel about the name. We need harder arguments. One strong argument is that Systemic Exertion Intolerance Disease does not translate into other languages at all. We need medical words that have clear meaning in all major languages. Another is that Exertion Intolerance is far too similar to Exercise Intolerance, which is well known in the medical world and therefore much too easily confused leading to misdiagnoses. I'm sure we can come up with other unemotional arguments for a better name.

We are not going to get a new name they feel there is not evidence for. That means anything with myalgic or encephalomyelitis is out. They've already been very clear on that, so let's not waste our time. They may be wrong, but we don't have enough scientific evidence to support using either of those words. It's as simple as that. Neuro-immune is apparently too general for them since other illnesses also affect neurological and immune systems. Neuro-immune exhaustion may fly as more explicit.

I support the WHO's discouragement of eponymous disease official names. It's just better all around to stick to descriptive names. However, since a descriptive name is not really possible with a very complex disease with multiple system involvement AND which has practically no research base, perhaps a temporary eponymous name is in order. They've already admitted that any name currently established is temporary, so do we need to fuss over eponymity at the moment?

Even if we go with an eponymous name, Ramsay's Disease is probably out since there are already too many Ramsay associations in medicine. They simply aren't going to go there, whatever we lay people think. Perhaps some other eponymous name for temporary use would do, say Mirza's Disease after Sophia Mirza. The average person doesn't have to know who Sophia was.

All that said, I think we are both better off with -- and far more likely to get -- a descriptive name. We can whine all we want that that discouragement of eponymous names is unreasonable in our case. It's not going to change their thinking, so we are wasting our energy. We need to choose our battles carefully, especially with our limited energy and resources.

How can we combine our individual efforts most effectively to get the NIH/HHS to give us a name both we and they consider acceptable, even if it isn't ideal? None of us will agree on one single perfect name right now. What do we most want the NIH/HHS to know about a new name? Can we get behind a name, or at least a few simple, logical ideas about a name so that we can present an solid, intelligent front and not sound like a bunch of whiny children ("But we don't liiiiike that name! It doesn't sound important enough!")

And let's not forget that whatever the NIH/HHS decides only applies to the US. This is not a WHO-mandated decision, so it's probably not relevant how the NHS is going to view it (for example). If it doesn't fit their agenda, they are not going to adopt the new name until the WHO forces them to, and that's not going to happen in any big hurry.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
If there is a poll, it would be good if there was the facility to not just find out about one name but instead get opinions on lots of names. Options might be to give preferences i.e. 1st preference, 2nd preference, 3rd preference, etc.
Alternatively ask for each potential name to be marked out of 10 or 100 or whatever.
(This couldn't be done with normal Phoenix Rising polls I know).

That would be the plan.

Ideally done in two phases, the first to get people to make suggestions (including non-English names, albeit with an English translation).
The second phase would involve preferencing, and two sub phases.

the first, a large list will be presented to a smaller sample to filter out the names that are unpopular (besides the obvious - SEID, CFS, ME, ME etc.). The second, main phase would be a preferencing system. Then the possibilities can be presented in a random order, ranking them a 'grade' of 0-10, say. Then the ranked preferences will be shown in order and any final stepwise adjustments (eg up and down arrows to shift the order) could be made to the overall ranking.

The pre-phase would include making a list of worldwide support groups as well as medical associations (including non-English speaking countries), then inviting them to participate in the process, as well as direct targeting through internet communities. Obviously including questions in the survey such as how did you hear about this survey, are you a member of support groups etc.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Maybe the perfect name is not yet known as more knowledge needs to be gained from underlying causes. With proper research things could be changing rapidly.

But that is why a name like "Ramsay's Disease" is ideal, in my opinion at least. It is agnostic towards etiology and it translates better into other languages and it is less likely to polarise or stigmatise patients.
 

Kati

Patient in training
Messages
5,497
But that is why a name like "Ramsay's Disease" is ideal, in my opinion at least. It is agnostic towards etiology and it translates better into other languages and it is less likely to polarise or stigmatise patients.
Most physicians if not all of them excepts perhaps Dr Hyde would not know who Ramsey was. And then they would make the connection from Ramsey's Disease to chronic fatigue syndrome.
 

SOC

Senior Member
Messages
7,849
I live in a university town, so I spend a lot of time around academics. The more I think about the IOM report, and especially the name SEID, the more it reminds me of other committee decisions I've seen made by researchers and other academics in groups without laypeople. They get engrossed with being careful and precise so that their statements and decisions are completely clear... and forget that the world is full of morons who are not going to give the same careful thought to their precise choice of words that they do.

Systemic Exertion Intolerance Disease may be a very careful choice of words to exactly explain the illness as well as can be done with the limited information we currently have. They know what they mean by "exertion" and "intolerance" and neither probably has negative connotations to them. If only the average physician was as careful and precise in their thinking as the committee members. I don't even want to think about the average TV news anchor. :eek:

Rambling aside: one of my students today showed me a video of two tv hosts (not news, thank goodness) having a heated argument about whether the moon is a star or a planet. :rolleyes:
 
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Sidereal

Senior Member
Messages
4,856
The trouble with descriptive names is that it's incredibly difficult to come up with an accurate, non-stigmatising name. A committee of health professionals, after a year of brainstorming, came up with systemic exertion intolerance disease which is actually inaccurate because exertion intolerance, which includes exercise intolerance, is not at all the same thing as post-exertional malaise. You could call COPD or cardiomyopathy "systemic exertion intolerance disease". For many of us, exertion-related abnormalities emerge only on second day cardiopulmonary testing which is very unusual and does not fit the normal pattern of exercise intolerance. Think how many of us were given one-day exercise stress tests in a cardiologist's office early in our illness before we became moderately or severely ill and were told that nothing was wrong, there were no ischemic changes, nothing. The name is inappropriate.

Regarding neuroimmune, I think this term is way too nonspecific. Also, the evidence for it is still preliminary.

Given the unknown aetiology and the severe difficulties involved in coming up with a satisfactory descriptive name, I do think we should push for Ramsay's disease as a temporary name until the underlying mechanism is discovered despite the fact that eponyms are "discouraged" by the WHO. I don't think it matters that no one knows who Ramsay was. I doubt many doctors could tell you who Sjogren was except "the guy who has an autoimmune syndrome named after him".

In the meantime, a patient education campaign is needed regarding the futility of continuing to campaign for encephalomyelitis. Continuing to cling on to a name that is inaccurate is actually very damaging to us as a community. We are going to be perpetually at war with neurologists and others who will run their tests and say, no, you do not have encephalomyelitis, bye. If the name is wrong, and we continue to insist on it in 2015 and beyond, then it's easy for the medical establishment to dismiss us as misinformed, unreasonable people.

I've seen this on multiple threads now, that Montoya's MRI/DTI study at Stanford showed encephalomyelitis, or that the Japanese PET study showed encephalomyelitis, or that the three autopsies in Britain showed encephalomyelitis. Nothing could be further from the truth. The MRI study showed a reduction in white matter volume (a nonspecific finding seen in many conditions) and a weird unexpected enlargement of the right arcuate fasciculus, a finding no one including the authors can explain at present. The PET study showed low grade neuroinflammation (-itis) but again, this sort of microglial activation is seen in many diseases. The autopsies showed inflammation of dorsal root ganglia not the spinal cord as it is often claimed on forums.

I know that the name myalgic encephalomyelitis and its current ICD-10 neurological classification is a very emotive issue for some and it is probably true that some people will not be persuaded to let go of it even though it's just simply not correct. But as a community, speaking as a whole, I believe we need to and can move on and come up with a name that doesn't make us a laughing stock of neurologists. The IOM report plainly states that they will not endorse a name which is unsupported by evidence.

There is also a strange rumour on the internet that "encephalopathy" means the condition is psychiatric. Again, this is not true and I have no idea how or why people are coming up with these inaccuracies. Even the IOM report acknowledges that there is evidence to support encephalopathy. I think the only way to keep the historic ME acronym alive, if people want to keep it, is if we push for myalgic encephalopathy, otherwise it seems it will be gone. While it is true that myalgia (muscle pain) doesn't happen in 100% of cases, it's probably still the case that the majority have muscle pain and everyone obviously has muscle symptoms of fatiguability/weakness so the name at least draws attention to the core issue of muscle problems.
 

Dolphin

Senior Member
Messages
17,567
The trouble with descriptive names is that it's incredibly difficult to come up with an accurate, non-stigmatising name. A committee of health professionals, after a year of brainstorming, came up with systemic exertion intolerance disease which is actually inaccurate because exertion intolerance, which includes exercise intolerance, is not at all the same thing as post-exertional malaise. You could call COPD or cardiomyopathy "systemic exertion intolerance disease". For many of us, exertion-related abnormalities emerge only on second day cardiopulmonary testing which is very unusual and does not fit the normal pattern of exercise intolerance. Think how many of us were given one-day exercise stress tests in a cardiologist's office early in our illness before we became moderately or severely ill and were told that nothing was wrong, there were no ischemic changes, nothing. The name is inappropriate.
I'm not convinced by this. I think most people who have a single maximum stress test would experience increased symptoms and worsened health in the days after. When I was mild, I had relatively few symptoms unless I exerted myself.
 

Sidereal

Senior Member
Messages
4,856
I'm not convinced by this. I think most people who have a single maximum stress test would experience increased symptoms and worsened health in the days after. When I was mild, I had relatively few symptoms unless I exerted myself.

Exactly, "increased symptoms and worsened health in the days after", not abnormalities on the actual first day test itself.
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
I'm not convinced by this. I think most people who have a single maximum stress test would experience increased symptoms and worsened health in the days after. When I was mild, I had relatively few symptoms unless I exerted myself.
Exactly, "increased symptoms and worsened health in the days after", not abnormalities on the actual first day test itself.
Which to mind represents an intolerance to exertion. Other intolerances e.g. food intolerances wouldn't necessarily invoke an immediate reaction.

The report explicitly explains the symptoms:
Post-exertional malaise (prolonged exacerbation of a patient’s baseline symptoms after physical/cognitive/orthostatic stress; may be delayed relative to the trigger)
 
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zzz

Senior Member
Messages
675
Location
Oregon
I think a lot of excellent points have been raised in this thread by a number of people. Let me summarize what I think are the most important requirements for a name for this disease. I understand that not everyone agrees with all of them, but we are not going to have complete unanimity on everything. Here's the best I can come up with for the name requirements:
  1. It should be descriptive. People should be able to tell immediately, just from the name, what the basics of the disease are. If this requirement is not met, you get dialogs like the following: "Ramsay's Disease? What's that?" "It's what used to be known as Chronic Fatigue Syndrome." "Oh, right! Psychiatry is down the hall and to the left."
  2. It should not have any ambiguous words in its name. "What disease did you say you had?" "S.E.I.D." "What does that stand for?" "Systemic Exertional Intolerance Disease." "Oh, so you can't tolerate exercise! That sounds a lot like chronic fatigue syndrome. Psychiatry is down the hall and to the left."
  3. The acronym should not have any negative connotations. This, unfortunately, is what sank NEIDS, but I think that the fears there were justified. We really don't have any margin for error here.
  4. No reference to chronic fatigue syndrome should be made, either directly or indirectly. You could give chronic fatigue syndrome the Ramsay definition or the ICC definition, but it wouldn't matter. As soon as people heard the words "chronic fatigue syndrome", it would be, "Psychiatry is down the hall and to the left."
This third point is too bad, because NEIDS was a very reasonable name and apparently had a lot of support.

This brings me back to the name I proposed yesterday:
We want to convince people of the seriousness of the disease right off. So why not start with the word "Acquired"? The fact that this disease must not be congenital is already a requirement of several of the definitions. This gives us the same first word as AIDS, which is certainly taken seriously.

Putting "exertion" in the name does seem to have its benefits, although it would seem to be good to leave out the "intolerance" part for reasons already cited. So we'll use "exertion", or more specifically in this case, "exertional".

Now let's get to the heart of what this is. It's a neuro endocrine immune disorder (or disease), is it not? So put together, that makes Acquired Exertional Neuro Endocrine Immune Disorder (or Disease).

And now we've got something that's both quite descriptive and succinct: AENEID. And not only that, it's got literary class. :)

This is just something I came up with in a few minutes; I liked the acronym. But as I take a look at the acronym, I notice that the last four words in AENEID are identical to the first four words in NEIDS. There is certainly plenty of evidence that this is a neuroendocrine immune disorder, even if the stricter scientific interpretations would call it "preliminary". But this is supposed to be a temporary name anyway. Perhaps this name has real possibilities.

I figured that if we were going to take this really seriously, I'd have to take a close look at each word individually. The one problem is the second word - "Exertional". I put that in because it's essentially in SEID, and it serves as a reference to PEM. But what happens when you exert yourself? You get fatigued. Yes, the 'F' word. And then it's down the hall and to the left for all of us again.

So what's a better word to put in there (we don't want to lose this great acronym) that accurately describes our situation, but will not in any way be confused with "fatigue"? And of course, this word needs to start with 'E'.

The answer I came up with is "Enervating". According to Merriam-Webster's Medical dictionary, to enervate is "to lessen the vitality or strength of". That sounds right. There are no psychiatric or psychological meanings listed, and I've never seen any psychiatric or psychological usage of this word in medicine.

So that gives us AENEID: Acquired Enervating Neuro Endocrine Immune Disorder. That sounds pretty nasty, doesn't it? And yet the name is broad enough to that it can encompass everything from mild to extremely severe cases of ME/CFS. Specifically, something that's "enervating" sounds like it can easily leave a person bed bound - something no other proposed name directly implies. The fact that "enervating" is a present participle implies that this might get worse, as it often does. It does not exclude total enervation, which would be total loss of vitality or strength, and by implication, it means that this disease might be fatal, as it sometimes is.

If someone is asked what Acquired Enervating Neuro Endocrine Immune Disorder is, it can be explained simply on the basis of its title. No reference to chronic fatigue syndrome need ever be made. If someone is asked, "Is this the same as chronic fatigue syndrome?", the honest, simple answer is, "No."

I've chosen "Disorder" for the last word instead of "Disease" so that this could be called AENEID, AENEID Disease, or "the AENEID Disease", all without being redundant.

Consider the names of the following two diseases, simply on the basis of their names:

Acquired Immune Deficiency Syndrome
Acquired Enervating Neuro Endocrine Immune Disorder

Which sounds worse? The second one sounds like a monster of a disease that I'd never want to have. And let's face it, most of us with serious versions of this illness would agree with Nancy Klimas when she famously said that she'd rather have AIDS (with the state of treatment in 2009) than CFS.

So to me, this name seems to fulfill the requirements I delineated above. And as we have all seen, people will judge this disease on the name. This is one case where first impressions really count, especially since many people won't look beyond the name. If someone has a better name, great! But this is my proposal.