PANDORA's new position on IOM including a list of nominees for the panel

[Nielk]

http://www.pandoraorg.net/uploads/Position_on_IOM_Request_for_Nominations.pdf

 

[Chris]

If Pandora is correct in stating that the contract cannot be stopped, perhaps nominating members of the committee makes a lot of sense--is the IOM open to nominations from individuals, and even individuals residing outside the US? I think on the whole Pandora's suggestions are good ones, and I would like to endorse many of them, but am not sure if this is appropriate from a Canadian individual. I did send a letter to Sebelius--no reply, of course.

I should also say that having absorbed the implications of Dr. Unger's refusal to consider a 2 day exercise test, and her reported statement that "GE is non-negotiable," and the demonstrated connections on another thread of close ties between an insurance company involved in disability and the IOM, I am not optimistic about the chances of a fair process.

I also wonder about the implications of nominating researchers who signed the letter protesting the contract; will they be considered to be eligible, or to have "conflicts of interest"? Will they consider themselves as willing or eligible?

Advice welcomed. Chris

 

[Ember]

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.“

 

[caledonia]

http://www.research1st.com/2013/10/08/clearing-the-air/

Suzanne Vernon wants us to work with the IOM Panel. Whatever Suzanne Vernon says to do, we should do the opposite.

 

[Marty]

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.“

Hillary speaks with wisdom.

 

[Chris]

One way to play this would be to nominate some of those who signed, and leave it to them to be either rejected--which would tell us and them something--or of course accepted, in which case they could either join and do their best to shape the outcome, or resign in protest and score more points against the whole thing? I am concerned about what we can best do to help those who have so bravely made a statement.
Chris

 

[Nielk]

'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.

'The IOM looks for individuals to serve who do not have a strong bias and do not have a financial conflict of interest (ex. their income is largely dependent on the agency funding the study). This is because they want the evidence (research studies and facts presented at the public meetings) and reasoning to be the basis for their conclusions.'

What do they mean by "have a strong bias? Does that means that any individual who thinks the CCC should be adopted immediately like the 35 experts who signed the letter are ruled out? Anyone who has a bias against NICE is ruled out?

'The agency or agencies paying for the study is kept at “arm’s length” and not involved in the study except receiving reports that announce only the basics, such as when a meeting occurred and when the next meeting is.'


Weren't CFSAC's ex officio members supposed to be involved with this?


'They look to many sources for nominations. First they contact their own members, as the IOM is a nonprofit organization of many medical professionals. They may ask their own member to serve or ask that person to nominate someone. They also ask for and welcome outside organizations to make nominations.'


How many of their own members are ME experts? They ask their own members for nominations first then outside organizations. Who selects the panel and how odes that process work.?


'They will post on their website the intended committee members for the public to comment on whether they have a bias or conflict of interest.'

That will be fun!

'while in Washington D.C., we sought the advice of a Gulf War illness advocate on these matters. His advice matched what we were told by another long-time and very involved Gulf War illness advocate who has seen the IOM do ten studies on that illness. That advice is: You can’t stop the contract, but make sure you have the right kind of experts on the committee. Don’t wait and try to fix it afterward.'

It's a good idea to get advice from GWI advocates except they have not been too successful, have they?
"you can't stop the contract" - I'm not sure about that. I know that lawyers are looking into that but, in either case, congress and/or the president can.


'These advocates also told us that of the nine studies the IOM has completed on Gulf War illness, one came out very good in the view of the patients. This was the 2010 report on health effects from serving in the Gulf War.'

So one report out of nine was good. :thumbdown:


'Also, after the expert letter with 35 signatures came out late on Sept. 23, we noticed this was only a few hours after the details of the IOM contract was announced on the same day, meaning the letter was clearly written and most experts signed it before they knew the details in the IOM contract. So, it was not surprising to hear of one of the experts changing her position publicly and at least one other tell us privately that he has changed his position. We haven’t spoken to all of them, so we don’t know how many others have changed their position'

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.


'We also note that the International Association of CFS/ME did not sign the letter as an organization, although some board members did and others did not. We also were informed of other ME/CFS experts who did not agree with the letter and did not sign it, because they think the IOM has the opportunity to solve the current definition disputes. Therefore it is now not clear what the majority of our experts think on the issue of the IOM contract. '

The majority have spoken and have been totally ignored...by HHS. by CAA by PANDORA. If you want to go against the experts who signed the letter, at least be honest and say so. don't tell us that you respect their stand and then find all kinds of excuses to ignore them. Call a spade, a spade. You are ignoring the advice of our experts.


It is really all this double talk, secrecy and double stabbing that has me all riled up. Don't insult our intelligence. When all is said and done, history will speak for itself. The results will be very clear. I would be the happiest to see me wrong at the end and that the pipedream of the IOM's work resulting in a better diagnostic criteria. Even so, I will never forget who said what and who stepped on who just to be able to be at the table. If PANDORA or any other organization or individual wants to see this go through and be part of it, just plainly say so. You feel that this will be a fair process and you want to be part of it. That would be fine with me. Even though I disagree, you have the right to have your opinion and to follow that. I would have respected that. But, to cloak it with explanations that you respect and agree with the experts who signed the letter yet, you feel forced to go against it? Doesn't wash with me.

 

[Ember]

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.

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.

 

[alex3619]

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.

 

[user9876]

'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.

So if they don't pay for committee member time what is the money being spend on. Administration of a process?

Single sourced contracts from government always seem dodgy to me especially where they are sourced to a group with little expertise in an area.

 

[Firestormm]

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...

 

[Nielk]

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.

 

[alex3619]

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...

Hi Firestormm, I can still write opinion pieces. Serious articles with all the research needed are what are beyond me now.

 

[alex3619]

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.

Yes, their statements and their actions do not match. That alone is reason to distrust the entire process.

 

[Firestormm]

Hi Firestormm, I can still write opinion pieces. Serious articles with all the research needed are what are beyond me now.

An opinion piece would work as well

 

[Nielk]

An opinion piece would work as well

Really?

 

[Nielk]

There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.