Nielk
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Here's Hillary Johnson's advice, “Per John Herd: 'If advocates sit on committee, they will be played.' Do not cooperate with Fed's scam artists. Nor should the 35 experts.” She also advises, “IOM contract has nothing to do with science. Once you understand that you will know how to play this. No cooperation, only resistance.“Advice welcomed. Chris
Here's Hillary Johnson's advice, “Per John Herd: 'If advocates sit on committee, they will be played.' Do not cooperate with Fed's scam artists. Nor should the 35 experts.” She also advises, “IOM contract has nothing to do with science. Once you understand that you will know how to play this. No cooperation, only resistance.“
I reckon that there are still 34! Pandora's claim that “at least one other [told] us privately that he has changed his position” shouldn't be allowed to undermine anyone's credibility. (What does “at least one” mean, by the way?) An open letter makes a public statement.So, besides Bateman who made it public and one other privately changed his position, there are still 33 experts who stand by their position in opposition of this wasteful charade.
So if they don't pay for committee member time what is the money being spend on. Administration of a process?'The cost of the study is around $1 million. The information of who funded the study is public, but we did not inquire as to where we could find that information.'
So where exactly is the funding coming from?
'Committee members are not paid for their work on an IOM committee. Their lodging, travel and meals
while at the meeting are paid for. This lack of reimbursement for time often leads to private practice
clinicians declining to serve, meaning professors, researchers and others with income not tied to their time make up most of their committees.'
This rules out most active clinicians and researchers.
I also think we are probably not going to be able to stop it. That is not certainty though, even a paid for contract can be cancelled, they are just reluctant to do so and may have technical difficulties if in government and lack the right directives.
The terms of the contract are critical, and we have not seen it.
With the right terms, and good experts, then this could work out OK.
However that misses the main issues.
The way this was done was dictatorial, non-transparent, and apparently unaccountable, at least so far. As such its in violation of the main principles that they should be using, including openness and consultation.
Further, the only two examples of this we have to go on were the IOM GWI contract, and NICE's guidelines. Both were a disaster and not fit for purpose.
Whether we can stop it is beside the point - sure it would be great if we could, or at least be consulted in the design of the study, but that's not the only thing. HOW this was done is a big issue. We need to be very clear we are unhappy, and watching them very closely. We need to be clear that ramming things through without consultation, and with negligible transparency and accountability, is not just bad government practice, or bad business practice, its a violation of trust and can promote (but might not in each case) corruption or bias.
So damage control, which this list of nominations is, is not a terribly bad concept. Its however a separate one from protesting the actions of HHS and IOM in the first place.
Our first priority is to stop the IOM contract.
Only secondary is the need to mitigate the disaster.
Its not impossible though that the IOM will produce a good result, just unlikely. We need to make it very clear though that any result will be scrutinized very very carefully.
However there are zero conditions under which we can accept how this was done. Its a violation of good governance, good medical practice, and a further violation of community trust. These issues need to be protested in their own right.
And I thought you couldn't write an article!
I like the cut of your jib. Not all of it of course, but its essence. I do hope that someone - or a group - will get together and write something similar based on the PANDORA statement and the little else that we know.
I don't believe the contract will be cancelled. Never really have. Doesn't mean we can't do something, and I think many would appreciate some attempt at an article similar to your thoughts above.
Anyway, crap night for me, stinking head, back to bed...
The Institute of Medicine claims that they want the ME/CFS stakeholders' input yet when they reach out to the community for nominees they give them three days to come up with it? Where is the fire? There wasn't even time to ask these potential panel members if they are willing or able to serve. There was no time (or willingness?) for input from the patient community.
There is a great disconnect in everything that is promised and to what actually takes place in this whole process so far.
Hi Firestormm, I can still write opinion pieces. Serious articles with all the research needed are what are beyond me now.