Release of the IOM report - live webcast-2/10/2015
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Nielk
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Forbin
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Although I've certainly had other forms cognitive impairment - brain fog - memory issues - word finding - etc... I wonder if dizziness/vertigo would also qualify as a "cognitive impairment" under SEID. It is certainly a perceptual impairment that can make you feel like you're drugged, or in some kind of delirium. The ceaseless sensation of movement was, for several years, my most debilitating and dispiriting symptom. I suppose I'm just lamenting that neurological issues seem to be so narrowly defined in the criteria - or, as Dr.Enlander put it above - that the SEID criteria are a "truncated version" of the CCC.
DanME
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From the full report:
"The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”
Not bad.
"The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”
Not bad.
Well, the Washington Post edited their article title to remove the word "just"!"...not just psychological"
Ember
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The IOM Committee was directed to “conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients.” Two members of the Committee serve on the International Consensus Panel. In comparing the existing diagnostic criteria, the IOM Report claims, “While all of the criteria make clear that they are describing the same illness, some may very in the terminology used to refer to the illness or to the symptoms.”
Not so, according to the Evidence Report (December 2014):
Not so, according to the Evidence Report (December 2014):
From the full report:
"The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”
Not bad.
Ember
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The IOM Report calls for a complex systemic disease to be diagnosed using four symptoms: impaired day-to-day functioning, PEM, unrefreshing sleep and cognitive impairments or orthostatic intolerance. In dumbing down the CCC, the SEID definition abandons the grouping of coordinated patterns of symptom clusters that identify areas of pathology.
According to Dr. Bateman, “The IOM report is thoughtful, evidence based, designed to engage PCPs and specialists in care. Challenge them!” Well, not too much.
According to Dr. Bateman, “The IOM report is thoughtful, evidence based, designed to engage PCPs and specialists in care. Challenge them!” Well, not too much.
Upgraded! No longer at Buzzfeed.
Not that there is anything wrong with Buzzed. I do love a good cat video listicle. I really do...
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snowathlete
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DanME, will you be changing your username to DanSEID?From the full report:
"The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”
Not bad.
Its a dig at people with psych illnesses. I thought it was an inappropriate headline. Just because our illness isn't a psych illness doesn't mean the headline has to minimize people who have psych illnesses.
Yes, Dr. Bateman seemed to confirm that "this was not an issue anymore" after someone asked if it was OK (due to past reports of a possible retrovirus). I found that astounding that this would be the case, since the lack of known etiology doesn't confirm a non infectious/transmissible one.
But to be honest, I never understood the desire of people who are sick to give blood anyways. Even people with temporary illness like the flu or something. You'd have to be dishonest on the screening questionnaire when they asked you if you were sick in the last X weeks.
There are plenty of perfectly healthy people who can be blood donors. They need to reach out to them and encourage more participation and exclude anyone who is sick, for any reason (even unknown reasons).
DanME
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I suspect this is the reason.
Ember
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SEID might be the IOM Report's saving grace. Happily, this dumbed-down CCC iteration wasn't labelled ME.
Just clinical. Nothing has been done about the research definition at this point. HHS rejected the experts call to adopt CCC for research and conducted P2P instead. But P2P didn't address the research case definition.
I hope somebody has some footage of his little act, just waiting for the right time to release it to the public.
Like, about now.
Antares in NYC
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I've been hoping someone releases that footage. You know there has to be video recordings. Allegedly he's taken his comedy routine on the road, performing his whiny impersonations in conferences beyond the UK.
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