IOM report release date 10 Feb 2015
- Thread starter Denise
- Start date
I suppose we should brace ourselves for something even more defamatory than chronic fatigue syndrome.
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.
They really shafted GWS patients when they "renamed" that one, and I expect the same for us.
Bob
Senior Member
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Chronic malingerers' disorder? 
(If we have low expectations then we won't be disappointed.)
(If we have low expectations then we won't be disappointed.)
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Naaah, it should be something with a better acronym. We want our money's worth, after all!Chronic malingerers' disorder?
Chronic Reciting of Absolutely Zany Symptoms?
Freudian Angst Kindled by Emotion?
Having this plague has forced me to have a better sense of humor. And I had a pretty darned good one to start !
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.
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
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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
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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.
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
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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.
Roy S
former DC ME/CFS lobbyist
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If that rumor is true I'm betting on chronic multi-symptom illness.
However, might I suggest "chronic resistance against psychobabble"?
Acronyms are important.
However, might I suggest "chronic resistance against psychobabble"?
Acronyms are important.
Snowdrop
Rebel without a biscuit
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@Roy S,If that rumor is true I'm betting on chronic multi-symptom illness.
However, might I suggest "chronic resistance against psychobabble"?
Acronyms are important.
Well if that is the name of the illness, I would suggest the name of the treatment will be "symptomatic hallucination illness treatment".
Wally
mango
Senior Member
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re: somatoform -- "functional" is another one of those code words that i would be seriously unhappy to see...
caledonia
Senior Member
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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...
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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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!