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CAA: IoM Contract is an "Unprecedented Opportunity in the History of ME/CFS."

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Of course, we can't forget about the past but it is the past, we have no control over what happened but need to learn from it. IMHO, it's time to put our effort into the future..

That is something you just said that I can finally agree with.

It is due to the past and patients learning from the past, percisely why we dont trust now and all the effort we are putting in to try to make sure things do not go wrong. I think most of the patient group has learnt from the past.
 

Ember

Senior Member
Messages
2,115
I think, SOME, while having only good intentions, have gone a bit into overboard mode, by assuming the worse.
Are you including the fifty experts who have warned that “this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable?”
 

barbc56

Senior Member
Messages
3,657
If you take SOME, as meaning everyone, then the only conclusion available, would be yes. IF that is the definition of SOME.
 

Ecoclimber

Senior Member
Messages
1,011
One does wonder how CAA can state the IOM is an "Unprecedented Opportunity in the History of ME/CFS" when neither CAA or anyone for that matter to best of my knowledge, has seen the IOM contract! The statement in and of itself is incredulous! Given the fact that HHS refuses to release details of the contract is compelling enough reason to suspect duplicity...failure to disclose, expect to be oppose!

Eco
 
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beaker

ME/cfs 1986
Messages
773
Location
USA
The IOM is suppose to be unbiased and could also be said that some of the panelist are biased as they are CFS advocates and the medical profession.

I think the term biased/unbiased is being misused in this situation -- by most of those that I've read, and I believe by HHS and IOM . It is those w/ experience vs. those who have no experience.
Bias connotes prejudice, while experience = knowledge. It may seem like a fine line to some. But it is quite clear to me. This illness is too complicated for folks to meet in a sterile environment {sans hands on patients } and come up with something meaningful. To me the issue is one of true experience w/ this illness.

The scientific method is the same works in the same way.. Science doesn't do studies with preconceived biases. and then find information to back that up.
.

Sadly, studies w/ preconceived outcomes happen all the time. It's not suppose to, but it does. Look no further than big pharma for the more obvious examples. As someone who worked in a research capacity in the past, I can assure you that statistics are manipulated to fit what the desired outcome is all the time.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
If you take SOME, as meaning everyone, then the only conclusion available, would be yes. IF that is the definition of SOME.
This doesn't make sense. You say the 50 experts constitutes 'everyone' to you. Since they all came out with the same exact statement and haven't said anything else on the topic, how can you say "SOME" of the 50 are going overboard while some are not?
 

leela

Senior Member
Messages
3,290
I'd like to suggest we save our energies for keeping on top of HHS, IoM, and all other pertinent agencies, rather than use them to
pick apart individual patients' points of view. There will always naturally be a full spectrum of POV, and there is little to be gained from pointing out differences, yet much to contribute by staying alert and aware of what actions are being taken on the political stage.
 

Ecoclimber

Senior Member
Messages
1,011
In their recent 'spin' piece, "Hope on the Hill" CFIDS made this statement: "Importantly, the CFIDS Association serves as a non-voting liaison committee representative on the CFS Advisory Committee and works to build appropriate relationships with HHS, CDC, FDA, and the NIH to ensure that ME/CFS is high on federal agency radar. This illness is facing issues of significant under-funding and we want that problem to be addressed. While the federal government historically has a perceived lack of urgency in issues related to ME/CFS, we have seen specific evidence that ME/CFS is on the federal radar"

Is this the CAA's result of keeping ME/CFS on the radar at the NIH over the last ten years? The results:
"The NIH is not committed. Over the past twenty years it has not worked very hard, or even hard at all, to enhance the health of people with Chronic Fatigue Syndrome. One could argue that the NIH has barely made an effort at all at doing that."
http://www.cortjohnson.org/blog/2013/12/22/unfulfilled-commitments-broken-promises-nih-chronic-fatigue-syndrome-twenty-five-years/

Eco
 

Izola

Senior Member
Messages
495
Once this IoM thing and CPET thing is finished, it will be time to COMPLETELY DESTROY CAA. No mercy. They will be a pile of rubble once we get through with them.

Thank you for that. For very many years I've wanted to say publically "CAA does not represent me." How dare they present to the public as representing all those with ME/cfs.
 

Izola

Senior Member
Messages
495
If the CAA has no advisory comments whatsoever to make about the make-up, balance and detail of this panel and some of the members on it, what does staying "vigilant and engaged" actually mean? :thumbdown:


Does this mean "do nothing"?

:bang-head:

I think it means "Get in the way of us having a real advocate."