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

[Simon]

The status quo is that most clinicians and researchers use CFS, or sometimes ME/CFS. The question is, does the Institute of Medicine's new name for ME/CFS of "SEID", Systemic Exertion Intolerance Disease" represent a step forward or not?

 

[justy]

I think it is wholly incorrect and minimises the disease just as much as CFS does.

 

[justy]

@Simon - you have exercise instead of exertion in your post. This I think is an important point - many people will mistake exertion (which can include physical and mental exertion and perhaps even the exertion of merely being alive such as eating, breathing and speaking) with exercise. What about the neurological and immune aspects - these are the most abvious parts of my illness.

 

[MikeJackmin]

'Intolerance'? Out of the pan, into the fire.

And it's still a syndrome, not one disease. Might be many diseases.

One other PR poster suggested PEMS, which seems about perfect in my view.

 

[rosie26]

It's still not the right name of course, though better than CFS. The new name doesn't really cover the mild ME's. I remember when I first started showing signs of ME in the 90's, I was still able to work full-time. And I wasn't able to recognize in those years that I was getting symptoms from exertion. So it would have been hard getting a diagnosis with the symptoms I was having back then. It was only when I collapsed into severe ME that things became horribly clear. I haven't read the report yet. But my first reaction to the new name was some disappointment to be honest.

I hope that out of all this we will get more funds for research - that's what we really need and then we'll get the 'right' name a lot quicker.

 

[CBS]

To me the PROPOSED name is not the most important aspect of today's report - mostly I think the proposed name is confusing. More importantly, I doubt anyone knows the full impact of changing the diagnostic criteria. We now have exactly ZERO validation (or any other type of) studies of S.E.I.D. If the new criteria unintentionally pulls in patients with primary depression (or other illnesses that aren't ME), then the ease of four simple symptoms (half as many as eight) would come at great cost to us.

And all of this for a cool $1 million! As long as we're not going to spend that on research, we probably could have gotten a much bigger bang by simply hiring a PR firm (and by PR firm, I'm not talking about the CDC).

 

[minkeygirl]

SEID backwards is DIES.

 

[Simon]

@Simon - you have exercise instead of exertion in your post. This I think is an important point - many people will mistake exertion (which can include physical and mental exertion and perhaps even the exertion of merely being alive such as eating, breathing and speaking) with exercise. What about the neurological and immune aspects - these are the most abvious parts of my illness.

Thanks for pointing out, corrected now. Show's I can't remember the new name - it ain't easy

 

[Scarecrow]

@Simon - you have exercise instead of exertion in your post. This I think is an important point - many people will mistake exertion (which can include physical and mental exertion and perhaps even the exertion of merely being alive such as eating, breathing and speaking) with exercise. What about the neurological and immune aspects - these are the most abvious parts of my illness.

I don't think Simon will be the last person to make that mistake.

 

[alex3619]

I don't think Simon will be the last person to make that mistake.

I wasn't sure after the presentation and had to look at the report. We are so used to autocompleting exercise with intolerance, its easy to do.

 

[adreno]

It's better than PMS.

 

[A.B.]

I do think SEID is a more accurate description than CFS. Changing the name from CFS to SEID will help prevent some victim blaming coming from the general public, but probably not much from doctors. Preventing some victim blaming is better than nothing, so I voted that patients should get behind it. Doctor attitudes will gradually change with education, objective tests, and treatment options becoming available. To hope that the right name would change doctor attitudes is unrealistic.

Edit: and there are more important advocacy projects than changing name yet again.

 

[adreno]

More importantly, I doubt anyone knows the full impact of changing the diagnostic criteria. We now have exactly ZERO validation (or any other type of) studies of S.E.I.D.

This. Changing the name and diagnostic criteria essentially invalidates all present research on ME/CFS.

 

[GracieJ]

I think it is going to cause more confusion, but more questions as well. People are not going to research the history or the disorder. They will take the sound byte moment and run with it. It is significant that patients here are already referring to ME/SEID. Not a complete picture, just saying SEID. There are rumblings that the word brings up interesting things when Googled.

We still have a fight ahead, but this gives us some ammunition.

I am pleasantly surprised at this report. It could have been far worse, more like the redefinition of Gulf War Syndrome. As much as the muddle continues, and what it translates to for individuals, it also translates to further awareness, and perhaps a better approach as the next wave of patients comes into doctors' offices. My hope is that fewer and fewer nightmare scenarios ensue for patients from day one, whether with the physicians, families, or society. I would like to see the collective eye-rolling we know too well becoming a thing of the past.

Confusion aside, having this report out will add to the change that is building. We are building momentum, and I am sure the tipping point will come. In my lifetime, I do hope, but it will come. There are too many of us for the truth to not fully emerge.

 

[charles shepherd]

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.

 

[alex3619]

All research on ME and CFS is in question anyway, there have always been cohort questions. I predict this name wont last, and I am not fully sure it will be adopted. In any case it will become tainted by dissenting psych opinion in particular, within years.

What this does have is that while there are no diagnostic tests, there are tests for most of the key diagnostic features. They do not have to be subjective.

 

[alex3619]

ME/SEID

Me said? Oh dear.

 

[Sidereal]

I think the name should be opposed even though it's better than CFS. It still sounds like some questionable, possibly total bullshit condition an arrogant internal medicine doc would be smirking at as he reads today's edition of JAMA.

 

[A.B.]

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.

Is it even possible to get the IOM to change the name at this point? Would this even have a chance of success?

 

[Dolphin]

Can another option be added to:

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

Better than the status quo, patients should get behind this

Better than the status quo, but I'm unsure at this time whether I would endorse it myself.