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Thoughts About M.E.: Inquiring Minds Want to Know: Who is Behind the IOM FAQs?

Messages
5,238
Location
Sofa, UK
Very good question this; this was the most immediately striking thing to me about this statement, and it is an important question: just who is it that is putting this out in the name of CFSAC? It clearly is not CFSAC who has written these FAQ responses - or at least, not the CFSAC committee as I understand it. It reads as if somebody within HHS, or within CFSAC, is acting as if they are CFSAC. As with previous HHS comments about the contract, which made false claims suggesting that the contract was what CFSAC had asked for, it appears that the name of CFSAC is being misused to give an appearance of legitimacy.

Regarding this:

PANDORA stated on its Facebook page today that the “FAQ […] addresses most of the questions we asked.”

Perhaps so, but it doesn't answer them. It doesn't even answer the questions as they are worded in the FAQ itself. For example:

Can HHS, and all associated agencies, endorse the 2003 Canadian Consensus Criteria based on the recommendation of ME/CFS experts, patients and the International Association of CFS/ME? If not, why not?

HHS often helps disseminate clinical recommendations made by nongovernmental groups, but does not generally make formal endorsements of these guidelines. Additionally, the 2003 Canadian Consensus Criteria (CCC) do not account for scientific evidence developed since 2003. In order to ensure that the IOM considers all relevant information, HHS has requested specifically that the IOM consider the 2003 CCC in its review and deliberation, in addition to other clinical criteria for ME/CFS and recent scientific evidence.
OK: so HHS "does not generally" "make formal endorsements" of "clinical recommendations made by nongovernmental groups".

But the question - can it endorse the CCC, and if not, why not? - is not answered. Or perhaps we can interpret from the above that the answer is "yes, it could, if it wanted to" (since they fail to cite a reason why they can't and presumably they would do so if such a reason existed) but it doesn't want to. The only reason given is that the CCC are 10 years old - in which case, perhaps it should endorse the more recent ICC?

And this...
If the IOM contract is cancelled, will the contract funds go to ME/CFS research?

HHS has a legally binding agreement with the IOM and has committed FY2013 funds to this study. There is no way for HHS to recover or repurpose these funds.
...is not asking the question that (IIRC) Pandora has asked, and that many advocates want to know the answer to: "[How] Can the IOM Contract be cancelled?".
 

Ember

Senior Member
Messages
2,115
“HHS often helps disseminate clinical recommendations made by nongovernmental groups, but does not generally make formal endorsements of these guidelines.”

But neither does HHS generally sign contracts with nongovernmental groups to develop clinical diagnostic criteria.
 

Ember

Senior Member
Messages
2,115
At 1:56pm Pacific time (24 minutes after receiving the listserv announcement), I sent an email to Dr. Nancy Lee (Federal Designated Official of CFSAC) and Dr. Gailen Marshall (CFSAC chair) asking for clarification of the open-authorship question of the FAQs. I have not received a reply yet and am therefore now wondering out loud.
CFSAC seems to be in partial lockdown...not surprisingly, perhaps, after its May theatrics.

 
Messages
5,238
Location
Sofa, UK
“HHS often helps disseminate clinical recommendations made by nongovernmental groups, but does not generally make formal endorsements of these guidelines.”

But neither does HHS generally sign contracts with nongovernmental groups to develop clinical diagnostic criteria.
good point.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Today, somewhat mysterious FAQs regarding the IOM contract (“FAQs”) appeared on the Internet. I say mysterious because the authorship of these FAQs is unclear. Is this statement an official pronouncement of CFSAC or did it originate with HHS?

I have been wondering the same. Its an important question. CFSAC would have signed off on it unless someone stuffed up, which can happen.

My current hypothesis is that it was written by CFSAC support staff, which means HHS.
 

Nielk

Senior Member
Messages
6,970
I have been wondering the same. Its an important question. CFSAC would have signed off on it unless someone stuffed up, which can happen.

My current hypothesis is that it was written by CFSAC support staff, which means HHS.

CFSAC has not endorsed the IOM contract. To make it seem like they did is real deceitful. Actually two voting member of CFSAC signed the experts' letter and another two voting members signed the advocates' letter.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
CFSAC would have signed off on it unless someone stuffed up, which can happen.

I thought I should clarify my point. If the FAQ was by CFSAC, they would have signed it, clearly and unambiguously, unless there was a stuff up. They didn't sign it, which raises doubts it was from CFSAC.

They should also have been aware enough of the controversy to address the question of who supported these views on CFSAC, and who didn't.

In time CFSAC may respond, and we will learn the actual situation from them.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@Firestormm, which also appears to be the case with the FAQ, which is why I commented earlier. The CFSAC support team is not necessarily posting an official CFSAC response. They are, so far as I am aware, HHS staff, whereas CFSAC members are appointed to the panel. So the question still remains, who is this message from?

We still await official CFSAC clarification.
 

Goodness to M.E.

Senior Member
Messages
102
Location
Adelaide
I'm really confused by it all, M.E. is not 'CFS-unexplained fatigue'. (hence the reason we are treated so shabbily by the Medical Profession because most think we're nuts) so why would anyone want to use a 20 year old CCC to replace a 30 year old tool to provide us better medical care NOW. Has no one been listening to us when we seek medical attention over the last 30 years and are these forums and support groups just that, internet sites of no significant importance? I cannot believe any support group would even consider selling their members out for a diagnostic and research tool that is 20 years old and 20 years behind the times! I for one, do not live in a third world country, I live in Australia and we dont even have a M.E. Neurologist, Rheumatologist or GP in Australia who has experience or an expert in the field and this information was provided by The Premier of South Australia!
 

jspotila

Senior Member
Messages
1,099
@Firestormm, which also appears to be the case with the FAQ, which is why I commented earlier. The CFSAC support team is not necessarily posting an official CFSAC response. They are, so far as I am aware, HHS staff, whereas CFSAC members are appointed to the panel. So the question still remains, who is this message from?

We still await official CFSAC clarification.

"CFSAC Support Team" appears at the bottom of my copy of the email from the listserv, the same as other staff-authored posts from the listserv. As I said on my blog today, it is unlikely that this FAQ was approved by the CFSAC members themselves. An email vote to approve the FAQ document would constitute an electronic meeting of the full committee, and since it was not done in public it would be illegal under the Federal Advisory Committee Act.

There are more important concerns about the FAQ, as Jeannette, Erica, and I have blogged, along with issues raised by many others.

http://www.occupycfs.com/2013/11/18/faqchecking/
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I'm really confused by it all, M.E. is not 'CFS-unexplained fatigue'. (hence the reason we are treated so shabbily by the Medical Profession because most think we're nuts) so why would anyone want to use a 20 year old CCC to replace a 30 year old tool to provide us better medical care NOW. Has no one been listening to us when we seek medical attention over the last 30 years and are these forums and support groups just that, internet sites of no significant importance? I cannot believe any support group would even consider selling their members out for a diagnostic and research tool that is 20 years old and 20 years behind the times! I for one, do not live in a third world country, I live in Australia and we dont even have a M.E. Neurologist, Rheumatologist or GP in Australia who has experience or an expert in the field and this information was provided by The Premier of South Australia!

I would like to see the 10 year old CCC adopted just like all of our experts do because it is quite accurate. Though it is 10 years old, the science since has been consistent with it, so it will serve. The main benefit of adopting the CCC or ICC would be that it would replace the inaccurate Fukuda and probably more inaccurate, planned IoM redefinition.