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Blog: Discussion of Suzanne Vernon's Response to Criticisms

readyforlife

Senior Member
Messages
137
This is the same procedure that the VA IOM advocacy groups attempted but where did that get them? Do you think based on their previous actions against significant opposition which included Congress, that their actions would be any different? This would mean that if they created a criteria bettter than the CCC or ICCC-ME, it would in affect overturn their Gulf War Veterans ruling from GWI to CMI.

Given the thirty year history of HHS, NIH, CDC, do you really believe this will happen and given the fact that Vernon and Friedman are on both panels. I believe it is naviety to believe otherwise.

They don't have enough money to fund legitimate scientific research projects into ME/CFS as Lipkin has stated. They turned him down but gave $250,000 in grants each year to Friedberg over 6-7 year period for patients to cope with this illness plus the money allocated to the IOM for this dog and pony show when all of our researchers/clinicians oppose this contract and who are the real experts and quite capable in defining this illness!

Why this sudden push to use the IOM when the previous chairman stated this is highly unusual procedure for the IOM to define illness criteria especially coming on the heels of the recent VA IOM decision?

Once they go behind closed doors, all bets are off.

I start to second guess my self and think well MAYBE with the right panel we won't get screwed over. But one thing keeps bring me back to reality and that's my woman's intuition. Your statement below is something that has been on my mind for awhile now and keeps me from believing that they wont screw us over again. Why would the IOM come up with a criteria that our specialist, doctors and advocates/patients agree with, when it will just shoot them in the foot regarding their definition for the Gulf War Veterans.

This would mean that if they created a criteria bettter than the CCC or ICCC-ME, it would in affect overturn their Gulf War Veterans ruling from GWI to CMI.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Question: Why would someone turn to a group of inexperienced illness criteria authors (IOM) who failed miserably on their only previous attempt, instead of accepting the advice of the actual experts?

Answer: From a business, medical, or humanitarian point of view, there is zero justification.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Question: Why would someone turn to a group of inexperienced illness criteria authors (IOM) who failed miserably on their only previous attempt, instead of accepting the advice of the actual experts?

Answer: From a business, medical, or humanitarian point of view, there is zero justification.

[Putting on an HHS/IOM black hat] But this group will be a different group of experts, so criticism at the last group is not valid here. Trust us. [Taking black hat off]
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
[Putting on an HHS/IOM black hat] But this group will be a differentgroup of experts, so criticism at the last group is not valid here. Trust us. [Taking black hat off]

And my reply is that there will not be a different group of experts in charge. There will be no experts in charge. Instead, there will be the same group of non-experts (the IOM) in charge. And any expert advice will be sifted and synthesized by them, just as it was the last time.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
It is a shame that there are now so many threads on this key issue--go to the thread "Seeking an Injunction against HHS and IOM" to see the key evidence Hip has uncovered of a close link between an insurance co. involved in disability and the IOM. Chris
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I have sent another email to CAA

Please forward to
All Directors and
All Officers of CAA

Re: IOM and CCC

Ladies and Gentlemen:

Please, please reconsider and oppose the IOM and support CCC fully. CAA could be such a force for good for ME science and patients. It will be hell for us ME patients to have to go to war not only with CDC, etc. but with our own major disease org. But once the dust settles and the immediate focus is off of HHS, this will be patients' only choice. CAA has been the recipient of patient anger and criticism in the past of course, but this will bring it to a whole new level! None of us on either "side" want that, but you are forcing us.

The officers and directors of CAA have a fiduciary duty to both CAA and patients and in my well-considered opinion (disclaimerI am no longer a practicing attorney) you are clearly violating the duties to both.

I have called and spoken to Kris, who was helpful and informative. However, I have not heard back from members of the Board re my last email. I would appreciate the opportunity for constructive and civil dialogue. This is too important an issue to pass over. I look forward to hearing from members of the Board at your earliest convenience. I do best by phone, below, but can also be reached by email at this address. Thank you for your consideration.

Sincerely,
Justin Reilly, esq.
[redacted]
1070 Park Avenue, 11A
NY, NY 10128
 

Nielk

Senior Member
Messages
6,970
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.