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New Clinical Case Definition for ME/CFS: Fears It Will Be Labeled “Behavioral Health”

Nielk

Senior Member
Messages
6,970
By Penny Swift

http://theargusreport.com/new-clinical-case-definition-mecfs-fears-will-labeled-behavioral-health/

A new clinical case definition and diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) will be announced by the US Institute of Medicine (IOM) tomorrow, six weeks earlier than its due date, March 22. Fears are, because the National Institute of Health (NIH) insisted on including behavioral health specialists on the IOM ME/CFS committee, that the new labels and criteria will endorse a body of study that says the conditions are primarily psychological or psychiatric.

Those who have opposed the controversial health research plan since it was launched more than a year ago believe its early release is “a desperate attempt to put a lid on future opposition.”

Jeannette Burmeister (above), an attorney disabled by the disease for nearly a decade, said today that the IOM’s claim to be an objective, independent institution appeared to be “a PR stunt,” since the IOM had bowed to pressure from the NIH to include psychologists on their pane
continue here
l.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The process behind the lit reviews and framing the questions, and the bureaucratic support, were and are fundamentally flawed. What differs with the current IOM panel is we have a lot of people who know the science on there. So I have a wait and see attitude. What direction advocacy takes could get more focus in a day or two.
 

CBS

Senior Member
Messages
1,522
3h 3 hours ago
#mecfs
#fms #cfs @LBatemanMD We need more research that includes criteria for MECFS and FM in the same study. http://1.usa.gov/1zDjcGo
http://t.co/9nl3TSd0QF

Let's hope that combining ME and CFS with Fibro is not the direction that this is headed. At the research end, we need far more focused and clear results that can then be generalized as additional research warrants.

Combining ME and CFS with anything else (regardless of how worthy of funding and compassion) would be a disaster.
 

Hope123

Senior Member
Messages
1,266


Let's hope that combining ME and CFS with Fibro is not the direction that this is headed. At the research end, we need far more focused and clear results that can then be generalized as additional research warrants.

Combining ME and CFS with anything else (regardless of how worthy of funding and compassion) would be a disaster.


I think what she meant is that studies need to subset patients. I've had the experience multiple times of reading a ME/CFS or FM study and not knowing if the conclusions reached were erroneous/ less significant for CFS patients because the patients studied were more CFS-like or more FM-like, especially now since the new FM criteria has symptoms that overlap with Fukuda.

Best thing is to have studies with three different groups: FM-only, CFS-only, FM+CFS; there are a few studies that do this but not enough. The same analogy can be applied to POTS: POTS-only, CFS-only, CFS+POTS. Doing this will allow people to figure the role co-moribidities play in severity of illness, symptoms, etc. and even treatment. For example, we know that patients with pneumonia and acute kidney problems do badly vs. those with only pneumonia; the former need to be hospitalized, the latter could be treated at a clinic.

Of course, 140 characters on twitter will not allow one to say this.
 

Vic

Messages
137


Let's hope that combining ME and CFS with Fibro is not the direction that this is headed. At the research end, we need far more focused and clear results that can then be generalized as additional research warrants.

Combining ME and CFS with anything else (regardless of how worthy of funding and compassion) would be a disaster.
Actually that's exactly what CFS/FM/GWS needs. The attempt to split up these syndromes into groups and try to find biological markers with our medical system's ridiculous over-reliance on technology is the primary reason why research has gotten nowhere. The underlying cause to these syndromes, and others, is the same. It just manifests as different symptoms because each person's specific history of stress (in every health sense of the word) is different.

There IS a psychological component to these syndromes that interacts with the primary physical cause, which is why it often looks psychological. But on the other hand, what have been considered psychological disorders, particularly much of anxiety, depression, and bipolar (probably others as well), actually also have their primary cause within the physical body that molds our mental states.

Interested to see what they come up with, though it could still be crap.
 

Kati

Patient in training
Messages
5,497
And a more recent tweet

InQCBJ7L_normal.jpeg
Lucinda Bateman (@LBatemanMD)
2015-02-09, 5:12 PM
We need everyone to listen to the IOM briefing. Sign on. Speak out. #MECFS #FMS #theIOM #OFFER
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Lucinda Bateman said:
We need more research that includes criteria for MECFS and FM in the same study
Let's hope that combining ME and CFS with Fibro is not the direction that this is headed.
My interpretation is that she meant ME patients and FM patients should be included in the same studies as separate comparison arms. I don't think she's suggesting that they should be considered to be the same illness.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
Will the webinar be recorded ? My aide just changed time through agency and is coming at 11am tomorrow.( she has to got to CE at reg. time. ) drat.
 

Kati

Patient in training
Messages
5,497
@beaker, I gather you are on east coast time? I believe it will be recorded. myself I have to get the alarm for 7:45 AM to be there.
 

CBS

Senior Member
Messages
1,522
My interpretation is that she meant ME patients and FM patients should be included in the same studies as separate comparison arms.
<snip>

@Bob - I appreciate your thoughts. I wish that I was confident in most of our "experts'" ability to handle even the increased complexity of adding an additional arm to a proper study. I do not doubt their commitment nor their intent.
 
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beaker

ME/cfs 1986
Messages
773
Location
USA
@beaker, I gather you are on east coast time? I believe it will be recorded. myself I have to get the alarm for 7:45 AM to be there.
Yes East coaster. No way for me to change it. Don't want to skip hot shower ! She's only here an hour 2x a week. Not much but I take what I can get.
Glad to know I can watch later. Plus, I'm sure peeps will be posting about it here.

Good luck w/ your alarm ! If it makes you feel any better -- I'll have to set one to be up at 11am ;-)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)

Forbin

Senior Member
Messages
966
Perhaps the idea would be to create a class of illnesses with the basic idea being that, by grouping them together, you create sufficient critical mass to get better research funding.

This would not mean that the illnesses were one in the same, just that the same research methods might be appropriate for all of them.

You can see this kind of thing going on in Natelson's proteome study, which used a particular method to find potentially unique spinal fluid proteins in both ME and in Post Treatment Lyme Disease Syndrome. The results were different for ME and PTLDS, but they were found in the same study.

This might not be without pitfalls, but it might get ME research out of the "ghetto" it's been in at the NIH.

All speculation, though...
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
There IS a psychological component to these syndromes that interacts with the primary physical cause, which is why it often looks psychological. .

I completely disagree with that, that's no different to saying that everyone who has ME has FM or POTS, simply its not true.

Many with ME dont have ANY psychological component at all. When I applied for disabilty I didnt back then and that was why they kept rejecting my claim as they deemed me psychologically healthy. I didnt have anxiety and I didnt have depression.

You may have a psychological component in your case but you shouldnt assume everyone else who has this has. Its that kind of crappy belief in that past which has had me completely dismissed by some doctors as my mental health was good thou my ME was terrible.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Another Cindy Bateman tweet bits. I asked her yesterday if ME would be mainstreamed. She said

"Yes I think so. I hope so."

And then this:
InQCBJ7L_normal.jpeg
Lucinda Bateman (@LBatemanMD)
2015-02-09, 8:57 PM
@Katiissick @theIOM #mecfs The IOM report is thoughtful, evidence based, designed to engage PCPs and specialists in care. Challenge them!

ummm "IOM report" is "evidenced based" .. oh really. As far as Im aware the severe ME group isnt used in studies so how can studies not including this group be "evidence based". There was no way they are going to come up with anything good enough for the severe ME group by studying studies of people minorly affected.

Ive got no trust at all in this.. as far as Im concerned ME isnt going to go mainstream if they are still mixing it with CFS and if ME isnt clearly defined in the definition...

Im struggling to believe at this point that this whole thing is going to go right (well in a way Im going to be happy with it). I hopefully I'll be proved wrong and get a nice surprise but seriously, I just cant believe it at this point. We've seen too much go on around the IOM which dont look good!

and Ive seen how a lot of the ME/CFS specialists, water down ME. Im expecting Im about to see that.
 
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Iquitos

Senior Member
Messages
513
Location
Colorado
I completely disagree with that, that's no different to saying that everyone who has ME has FM or POTS, simply its not true.

Many with ME dont have ANY psychological component at all. When I applied for disabilty I didnt back then and that was why they kept rejecting my claim as they deemed me psychologically healthy. I didnt have anxiety and I didnt have depression.

You may have a psychological component in your case but you shouldnt assume everyone else who has this has. Its that kind of crappy belief in that past which has had me completely dismissed by some doctors as my mental health was good thou my ME was terrible.
I agree. The psychological SYMPTOMS we have are not "components." Like syphilis and rabies, the disease has some psychological symptoms, sometimes, but are not causal.

Like taniaaust1, I have never had anxiety or depression. But I do have FM symptoms which I believe are caused by ME/CFS.