CFSAC 1/2 day meeting today - Dec. 11

[leela]

"without a lot of traction outside the CFS community"
What?!

This is absurd on so many levels.

 

[August59]

I'll be very curious as to what the major researchers think of this definitions and if they comply with it at all. But, I suppose will just have to wait and see what the final product is. I suppose every country to could go of on their own and develop their own definition. That would look pretty embarrassing to the IOM!!!!

 

[SOC]

McEvedy used us for his PhD thesis. Beard was his supervisor. I think it likely McEvedy is stilll around, I am not so sure about Beard. Read here, and particularly the comment by Byron Hyde on what McEvedy said: http://www.mecfsforums.com/wiki/Royal_Free_Epidemic_of_1955

"Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis? I asked. His reply was devastating. He said, "It was an easy PhD, why not.""

 

[SOC]

I regard McEvedy and Beard are the biggest wombats of all, and thats an insult to wombats, which are placid inoffensive herbivores (though don't get one riled). They claimed ME is mass hysteria after a superficial investigation of the Royal Free Hospital ME outbreak in 1955, and published this in 1970. That set the stage for psychobabble, and even the creation of the label CFS itself. Their paper was very influential, and arrived at about the time psychosomatic medicine was given a huge boost by the new move to what is now called biopsychosocial medicine.

From http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1246098/

McEvedy and Beard's papers were greatly criticised, though they were never contradicted.

As a schoolboy, McEvedy's passion was the classical world, and he probably studied medicine only because his father was a well known surgeon.

This not-exactly-flattering obit in the BMJ tells us McEvedy's long dead, so I guess he'll never know just how very, very wrong he was.

Colin Peter McEvedy, consultant psychiatrist St Bernard's and Ealing hospitals, west London, 1972-95 (b Salford 1930; q Oxford/Guy's Hospital, London, 1955; DPM, DM, FRCPsych), died from myelofibrosis on 1 August 2005.

 

[justinreilly]

fwiw, my written testimony to CFSAC. I didn't speak.

November 29, 2013

RE: Testimony for December 2013 CFSAC:
Recommendations (1) Endorsing Expert Letter re IoM,
(2) Demanding CDC Conduct Repeat CPET

Dear Ladies and Gentlemen of the Committee:

We have a short meeting today, so I will focus “like a laser” on our two most urgent issues. I respectfully request that you focus on and address these before moving on to anything else, as you may run out of time.

I plead with you to make two vital recommendations:

(1) Endorsing the Letter of the now 50 ME Experts demanding HHS not contract with IoM to redefine ME and that HHS immediately adopt the ME/cfs Canadian Consensus Criteria; and
(2) demanding that Repeat CPET be required in the CDC's multi-site study.

(1) Recommendation Endorsing the Letter of the now 50 ME Experts demanding HHS not contract with Institute of Medicine to redefine ME and that HHS immediately adopt the ME/cfs Canadian Consensus Criteria:

This is by far our most urgent issue and thus it is absolutely vital that you make the above recommendation, in my well-considered opinion.

At the last meeting, you reiterated your recommendation to HHS originally made at the October 2012 meeting: “that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes.”

As has been noted many times, HHS blatantly disrespected you by claiming that the IoM process to redefine ME was a fulfillment of your recommendation. The IoM contract has none of the salient features of your recommendation. (a) It is not “a stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC…” (2) it will come up with a clinical definition not “a case definition useful for research, diagnosis and treatment” and (3) it will not “[begin] with the 2003 Canadian Consensus Definition for discussion purposes.”

The IoM contract is so dangerous that it has provoked a response from stakeholders that goes completely beyond those from the past. In the past, whenever HHS would make a move to retard or muddy the science, at most one or two experts would say anything, usually no expert would speak up at all. Now we have a letter demanding in the strongest terms, that there be no IoM contract and CCC be immediately adopted, and from no less than 50 of the nation’s and world’s top ME clinicians and researchers! This is backed up by the endorsement of the letter by over 170 patient advocates and over 3,000 petition signers. Never before has the ME professional and patient community come together with nearly unanimous voice to stop such a disaster.

The committee will cost $1M, be composed primarily of non-experts (with a bias toward a psychosomatic view of ME, if the consistent statements about ME in the IoM GWI reports and the composition of the latest GWI IoM panel are any indication), and use an evidence-based medicine formula to screen papers (which will screen out many useful papers and vital expert experience and include many unscientific papers). All this when we have a stellar definition in the CCC which has been validated, operationalized, written by and adopted by the top ME clinical and research experts!

The IoM definition will be rolled out and disseminated vigorously with neither any of these steps nor any field testing having taken place!

Please stand firm with our experts, advocates, patients and supporters in insisting the contract be immediately terminated and CCC be immediately adopted.

(2) Recommendation that Repeat CPET be required in the CDC's multi-site study

Post-Exertional Relapse is the hallmark feature of ME, though Dr. Unger has stated otherwise. This is why she will not conduct Repeat Cardio-Pulmonary Exercise Testing in CDC’s multi-site study as it would reveal PER. Repeat CPET is a gold-standard technique in diagnosing and researching ME. It must be included in CDC’s multi-site study!


Thus, I strenuously suggest that today you make two absolutely crucial recommendations:

(1) that Repeat CPET be required in the CDC's multi-site study and

(2) that you fully and strongly endorse the letter of the 50 ME experts demanding HHS not contract with IoM to redefine ME and that HHS immediately adopt the ME/cfs Canadian Consensus Criteria.

Thank you for your consideration.

 

[justinreilly]

But getting back to the IOM, in the CFS section of the Gulf War Treatment guide, they reference web pages that offer no citations to back up their claims. So either the review board ignored this part, or the panel refused to fix it. But either way, this is not the type of work the IOM website implies they provide.

This is very important, thanks for checking that out and reminding us!

 

[justinreilly]

Lee is a federal agent making a not so veiled threat that the highest level of constitutionally protected speech (political speech) by a disabled community will be punished.

The fact that she apparently read the threat from a prepared text makes it worse; these are her carefully chosen words; she had time to think about it; it wasn't that she got flustered and said something off the cuff.

Her statement was clearly unconstitutional. This is very serious. She has done three things to squelch free political speech (1) FUBARed the CFSAC meeting, (2) premeditatedly threatened disabled advocates for their political speech and (3) threatened three CFSAC members for political speech.

The Supreme Court has held freedom of political speech to be the bedrock of the Constitution. To paraphrase Justice Robert Jackson: If there is one fixed star in our constitutional constellation, it is freedom of speech; the government may never impose an orthodoxy of opinion on its citizens.

 

[Ember]

Dr. Koh should hang his head in shame for standing by Dr. Lee in his letter to Mary Dimmock and allowing her to address her comments to an international community of patients.

 

[alex3619]

Lee is a federal agent making a not so veiled threat that the highest level of constitutionally protected speech (political speech) by a disabled community will be punished.

The fact that she apparently read the threat from a prepared text makes it worse; these are her carefully chosen words; she had time to think about it; it wasn't that she got flustered and said something off the cuff.

Her statement was clearly unconstitutional. This is very serious. She has done three things to squelch free political speech (1) FUBARed the CFSAC meeting, (2) premeditatedly threatened disabled advocates for their political speech and (3) threatened three CFSAC members for political speech.

The Supreme Court has held freedom of political speech to be the bedrock of the Constitution. To paraphrase Justice Robert Jackson: If there is one fixed star in our constitutional constellation, it is freedom of speech; the government may never impose an orthodoxy of opinion on its citizens.

The primacy of freedom of speech is the thing I like most about the US constitution.

It is however already severely compromised by the ubiquitous use of public relations and the failure of investigative journalism.

 

[Nielk]

Erica Verillo wrote a blog on the CFSAC meeting.

HHS TO ME/CFS COMMUNITY: WE DON'T CARE WHAT YOU THINK.

Over the past year or so, CFSAC appears to have sunk into a morass of political slime. In January 2012, it violated its public charter and acted in secret to "narrow down" its list of priorities. (You can read about this sleight of hand HERE.) By making decisions hidden from the public eye, CFSAC not only violated its Charter, it effectively relegated the ME/CFS community to the role of passive recipients, rather than active participants in decisions that will affect us all for years to come.

The second nail in CFSAC's coffin came last May when Eileen Holderman reported that she had been threatened with expulsion from the committee by the Designated Federal Official, Nancy Lee, simply for acting as a patient advocate. She said the chair was ‘shutting her down and shutting other people out.’ Most significantly, she stated that "to hijack our recommendation and pretend like it’s being done, that’s wrong.” Mary Ann Fletcher also reported having been threatened with eviction for "expressing her opinion." (Read Mark Berry's article HERE.)

The third (but probably not final) nail was hammered home when December's CFSAC meeting was transformed into a webinar. Claiming "lack of funds," HHS decided to do away with 20 years of face-to-face dialogue, substituting a venue in which participants could not - like Eileen Holderman - report bullying or harassment. Nor could they express the community's ongoing concerns over the IOM contract.