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

[Scarecrow]

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

I've interpreted the name change as a proposal, not a done deal. Am I wrong?

 

[Sherlock]

So if someone has SEID, but then gets over PEM, while still having all other symptoms remaining, they then magically have a wholly different disease than SEID?

Besides which, the word 'immune' has to be in the name.

 

[Sidereal]

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.

The report says that they considered myalgic encephalopathy and that the presence of encephalopathy is supported by the literature but that they felt the emphasis on myalgia was undue and didn't address the cardinal symptom of intolerance of exertion. I agree with you; I think we should push for myalgic encephalopathy. At least it's accurate and sounds like a serious medical condition. This SEID thing is yet another weird confusing name we don't need.

 

[charles shepherd]

The report says that they considered myalgic encephalopathy and that the presence of encephalopathy is supported by the literature but that they felt the emphasis on myalgia was undue and didn't address the cardinal symptom of intolerance of exertion. I agree with you; I think we should push for myalgic encephalopathy. At least it's accurate and sounds like a serious medical condition. This SEID thing is yet another weird confusing name we don't need.

I would argue that exercise induced muscle fatigue +/- pain is a cardinal diagnostic feature of this illness.

 

[Roy S]

In my opinion any new name should be extensively "testmarketed" for its effects before being implemented.

 

[Andrew]

Even though I am not thrilled by the new name, I plan to use it to my advantage. And the main advantage for me is I can explain to my doctors that this is not fatigue, and that many of the assumptions based on the fatigue-centric model are wrong, including the treatment research based on fatigued people. And as a part-time advocate, I can piggy-back onto the publicity to discredit the institutional misinformation about treatment.

 

[Sidereal]

I would argue that exercise induced muscle fatigue +/- pain is a cardinal diagnostic feature of this illness.

I agree completely.

 

[Sidereal]

In my opinion any new name should be extensively "testmarketed" for its effects before being implemented.

Focus groups of smug physicians?

 

[GracieJ]

I think the forum title needs to remain the same for now.

@alex3619 Touché!! LOL

SEID is not perfect. It muddles things. But maybe out of the muddle the important changes will come.

 

[sarah darwins]

SEID backwards is DIES.

Yep, not sure they completely thought that through.

Seriously, I do like that they've got "Systemic" in there. And I like that it actually gets to be a "Disease", which might reset a few perceptions. Bit in the middle needs work, though.

 

[L'engle]

When I saw SEID I hoped the I would stand for inflammation.

 

[heapsreal]

It will probably end up seid/cfs/me? ??

I think other than ME, CFIDS probably explains it better as it's mentioning the immune dysfunction???

 

[snowathlete]

Can another option be added to:



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

I'm with the Dolphin. It isn't enought that it is better than CFS as any half-hearted attempt would be, so the question in my head is, Is it better enough? I don't know yet, and that just highlights for me that it isn't hughely better else it would be much easier to answer...does that make it a fail then?

 

[heapsreal]

Why do they bother?
I wish they would just bloody use a few biomarkers along with the CCC and leave the name as ME??

 

[Hip]

It will probably end up seid/cfs/me? ??

That's funny, I like that.

 

[Seven7]

Is hard to pronounce, and what is the translation to other languages. If I tell my mom in my native language it does not even make any sense. Sigh.

 

[beaker]

So if someone has SEID, but then gets over PEM, while still having all other symptoms remaining, they then magically have a wholly different disease than SEID?

Besides which, the word 'immune' has to be in the name.

maybe it would be SID since you'd still be system intolerant to many other things.

 

[taniaaust1]

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?

Its far better then what they could of done but they shouldnt thought more about us before giving us such a horrifically long name as many of us with ME have trouble hand writing!!!

and the very sick who's hands are shaking or in pain with the excertion (my hands/wrists go into pain fast when handwriting).. now will have to write that on forms once that is in. Its a complete lack of thought of the affects upon the severe group giving it such a long name!! The abbreviation, noone will know it for ages so that wont be able to be put on a form.

When many of us have trouble writing, they really really shouldnt have given it such a long name. They should of consulted us on if there was any issues to the name they wanted to call it.

It really annoys me, no one thinks of the severe group. Im dreading on having to hand write that on a bad day, there will be times I wont be able to write that.
Thank you (said sarcatistically) to those who didnt consider the name length and the writing issues of those who have severe ME/CFS.


As it is now when I have to hand fill in a form and write my medical issues, I have so many long named illness things to write "postural orthostatic tachycardia syndrome" as people dont know what POTS is etc etc. I certainly didnt need a long name like that for this. This name is just going to give me more pain in my hands every time I need to do a form.

 

[beaker]

My PT was here today when the news came. He doesn't know much about it, but he certainly sees it in working w/ me ( trying to heal a broken bone) He said it doesn't sound very medical and thought it was ridiculous. ( that was w/o my input ) So there's my survey of one HCP outside the community. And a sympathetic one at that.

 

[taniaaust1]

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.

For the first year of my illness I couldnt relate it to exertion (or at least physical exertion either), I had bouts of flu like symptoms unknown to me at the time ME"crashes"

One day we will have a test for this and wont have to rely on unreliable things like post "exertional" symptoms.

I do not think it should be in the name as otherwise in some future time (hopefully more in the near future) that name is going to be wrong . We need a name which will be suitable in the future too.

This illness has already had enough name changes so all I can see if this name is accepted, it will mean it will have to be changed yet again in future.