Discussion in 'Institute of Medicine (IOM) Government Contract' started by Kina, Feb 10, 2015.
READ the rest of the article here.
I have CFIDS symptoms, but I don't have PEM. I can exercise just fine.
Quote from the article:
"Treatments can include drugs such as anti-depressants and sleeping pills; gentle exercise and psychological counseling; and lifestyle changes such as limiting stress, caffeine, nicotine and alcohol."
I haven't read the IOM report yet (it looks like it's over 300 pages), but I hope this quote about "treatments" wasn't taken from recommendations in the report. "Gentle exercise and psychological counseling"?!
Ok, I'm off to dig into the full report.
This article combines elements of the IOM report with what was already up on the NIH website for CFS. The IOM presentation today did not specify either causes or treatments.
Again, the Washington Post article combines the IOM report today with what is up on NIH from the initial P2P statement--remember before they improved it. We haven't even seen the final P2P report yet, but we did hear their meeting about improving the initial draft summary.
In the rush to get out a story, the WP is combining new news with old beliefs about what might cause it and what might treat it, The IOM presentation today specified neither, other than that EBV is one (not the only) cause in adolescents in particular, and that physicians should treat the symptoms. I have not had time to read the whole IOM report which is huge, but am posting based on what was said in this meeting.
I think it's important to note exactly what the IOM means by PEM. Check out the "Key Facts" that the IOM just released on CFS: https://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf. The bottom discusses "PEM symptoms." Some of the examples of PEM are "minimum exercise makes me tired," "drained after mild activity," and "dead feeling after exercise." Do you experience any of those?
I have mild/moderate CFS, so I don't normally have extended crashes unless I do something crazy -- for example, I can do a brief, light jog without having an extended crash. But I do feel tired pretty much immediately after starting any physical activity, my legs feel dead when I'm trying to jog, etc. In other words, I don't crash for days, but minimum exercise definitely makes me feel tired.
Bottom line -- You don't need extended crashes to have PEM, but you definitely can't feel good while exercising. There should be an abnormal amount of fatigue associated with exercising, even if it's fairly time-limited once you stop.
I think some people on here will probably disagree with this analysis, but it seems to be what IOM means by PEM and I think it's a good approach -- it captures exercise abnormality without excluding people simply because they don't have a more severe form of CFS.
Oh, and keep in mind these criteria are just the best we can do (or an attempt to be the best we can do) without biomarkers. There almost certainly are going to be at least a few people in the world with underlying ME/CFS pathology who don't meet these criteria. That's going to be unavoidable until we understand what the underlying pathology is and/or discover some reliable biomarkers.
I have noticed that as well. I wouldn't qualify for ICC PEM due to lack of weird delayed neurological / immune symptoms, but I would qualify for SEID PEM. I'm OK with that.
I just hope this isn't an attempt to water down a symptom that can be much more severe than what I experience.
I think it's good. I think it's an attempt to recognize that this is a core symptom but also recognize that the symptom's manifestation can vary dramatically depending on disease severity. It cuts off people who should be out ("I feel fine when I exercise!"), but doesn't kick people out of the definition just because they seem to recover more rapidly than some other CFS patients.
Given the relatively limited understanding we have of underlying pathology, I think they're striking the right balance on PEM. But I might be in the minority.
I think these criteria are very good much better then Fukuda and ICC!!! Well done IOM!!!
Yes, this woman really seems to be suffering from SEID, after a long day at work.
I would think they would use less offensive stock images now, but I guess not.
Yes, I too was glad to see that the Washington Post reported today's IoM announcement/report release, except for that one glaring error.
It's outrageous and VERY disappointing that in an article specifically about today's IoM announcements, the WashPost writer interrupted with this unrelated and inaccurate sentence, along with a link to the outdated mayo clinic recommendations for cfs:
'"Treatments can include drugs such as anti-depressants and sleeping pills; gentle exercise and psychological counseling; and lifestyle changes such as limiting stress, caffeine, nicotine and alcohol."
The IoM announcement did NOT recommend any treatments.
That error by the WashPost writer damaged the good information that preceded it.
(Also, I agree halcyon, the stock photos used are ridiculous. sheesh. )
That is not a very well written article, in my opinion, and that is such an important paper for the Washington crowd..
There is no way on earth that I could physically lift and pour the coffee pot with one hand that she is effortlessly holding and pouring as if it is as light as a feather. She is also at work showered, dressed nicely, hair and make-up done, etc. To me she looks bored and tired but she does not have the illness that I have.
It would be fun sometime for a lot of us to come up with a range of images which express the realities of this illness.
I too strongly object to the absurd picture above of what appears to be a prosperous young beauty who probably just needs a little sleep. This look dates back to the yuppie flu era. Maybe an impoverished looking, solitary (abandoned) middle aged woman crumpling on the snow-covered sidewalk due to autonomic dysfunction.
Looks like they replaced the offensive image with the recent Stanford video instead.
You can also try a Google Site Search
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