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IOM report release date 10 Feb 2015

beaker

ME/cfs 1986
Messages
773
Location
USA
A new report from the Institute of Medicine presents new criteria to diagnose ME/CFS and examines whether a new name for the condition is warranted.

Rich Carson tweeted on 2/4/15 : "Coming from the top: "the name 'chronic fatigue syndrome' is about to change, and it's not going to be myalgic encephalomyelitis".

Curious.

I'm actually nervous about this whole report.
 

Wally

Senior Member
Messages
1,167
Rich Carson tweeted on 2/4/15 : "Coming from the top: "the name 'chronic fatigue syndrome' is about to change, and it's not going to be myalgic encephalomyelitis".

If this tweet is correct, I am sure any unilateral decision by the "top" on a new name for this illness will generate quite a bit of heated discourse in the patient community.

I wonder if we will be treated to some type of creative tools to assist us in "adapting" to a new name? So many possibilities await us for a new name.

 

Wally

Senior Member
Messages
1,167
O.K. I was not going to do this, but I see that there may be a need for some additional humor on why names and abbreviations for names must be selected very carefully or we could end up with a name that leaves us open to shenanigans and ridicule.

This video clip (titled "Dirty Names") includes some off-color humor, so please do not watch if you are uncomfortable with comedy couched in sexual reference or innuendo or you are under the age of 13.

 

NK17

Senior Member
Messages
592
Rich Carson tweeted on 2/4/15 : "Coming from the top: "the name 'chronic fatigue syndrome' is about to change, and it's not going to be myalgic encephalomyelitis".

Curious.

I'm actually nervous about this whole report.
This wait is killing ME. After so many years of living with this life stealing disease and now they'll take it away from ME?!?!
 
Messages
15,786
This wait is killing ME. After so many years of living with this life stealing disease and now they'll take it away from ME?!?!
Well, if it's a crap name, we'll call them a bunch of useless psychobabbling morons and ignore them. It worked fairly well when GWS was morphed into "chronic multisymptom illness" (only treatable by antidepressants and CBT) by the IOM - some government agencies backed off from using it when there was quite an uproar.

However, that lovely name is now all over the Wikipedia article, and 20,000 Google search results. But at least GWS and GWI hits still vastly outnumber CMI, with 358,000 and 185,000 Google results, respectively.

So I expect the IOM to produce a stupid name which minimizes ME/CFS even further, and I expect them to spread it widely for a bit. And then we'll have a fit, tell them where to shove it, and carry on with privately funding ME/CFS research which uses proper definitions ourselves because the NIH is not fit for purpose.

The stupid name will disappear, and became a footnote of minor interest in historical accounts. So yeah, basically a big waste of money playing a nasty game which won't accomplish anything for them in the long run.
 
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Nielk

Senior Member
Messages
6,970
UnfortunAtely, it is not so simple. HHS is still the biggest founder of research and we depend on them for it.

I don't think that we could ever raise a hundred million dollars a year in private funding. This is what is needed for large scale studies which are needed.

I wish this was not the case and that we can just ignore the HHS and their abuse.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Coming from the top: "the name 'chronic fatigue syndrome' is about to change, and it's not going to be myalgic encephalomyelitis".

If I was cynical about this I'd place all of my (non-existent) discretionary income on a term like 'chronic ideopathic multi system disorder'. If I was really cynical I'd add somatoform after the multi system but it can't be that bad. While emotionally they might like to go there, politically they have enough savvy to pull back from that precipice.
 

Seven7

Seven
Messages
3,444
Location
USA
Most be the brain fog: Is there a link to the webcast? is there any web on feb 10th????
 

mango

Senior Member
Messages
905
If I was really cynical I'd add somatoform after the multi system but it can't be that bad. While emotionally they might like to go there, politically they have enough savvy to pull back from that precipice.

re: somatoform -- "functional" is another one of those code words that i would be seriously unhappy to see...
 

caledonia

Senior Member
Assuming that it is true that in fact there has been no sharing of information between the P2P and IOM - no synergy at all. Assuming further that these are independent studies with no input from HHS once the studies started. This would mean that at this point, HHS has no idea of the final outcome.

Would it be interesting and embarrassing if they would show conflicting results? ...and this would be in a very public way?

I was wondering this myself. How would you rectify two reports covering the same issue that didn't agree with each other? Which one would hold more weight and supersede the other? What a mess that would be...
 

Denise

Senior Member
Messages
1,095
Most be the brain fog: Is there a link to the webcast? is there any web on feb 10th????


Go to this page
https://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

Scroll down to Upcoming Meetings for the Activity
and there is a link for Webcast.
That link should go live on Tuesday the 10th for the release.

Upcoming Meetings for this Activity
Public Release of the Report by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

February 10, 2015 (11:00 AM Eastern)

Open Meeting

Agenda Register Webcast

EDIT: to clarify - the words "Agenda", " Register" and "Webcast" each lead to different links.
One does not need to register for the webcast.
 
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Seven7

Seven
Messages
3,444
Location
USA
Go to this page
https://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx
Scroll down to Upcoming Meetings for the Activity
and there is a link for Webcast.
That link should go live on Tuesday the 10th for the release.
Upcoming Meetings for this Activity
Public Release of the Report by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

February 10, 2015 (11:00 AM Eastern)
Open Meeting
Agenda Register Webcast
I get this:
Public Release of the Report by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
This survey is not accepting additional responses at this time. Thank You!