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Nielk , you probably are aware of this, but just to clarify, my post is of a new, different document (PANDORA's Nov. newsletter) than the letter you just mentioned on the other thread.
Yes, Justin. I see that now. This is a current newsletter by PANDORA.
They say they made two phone calls to HHS. I am guessing that they did not get any answers to their questions? They also sent a letter three weeks ago to Wanda Jones. Did they receive a reply?
Why has PANDORA stopped promoting any actions against the HHS/IOM contract? If they have been refused any answers to these troubling questions, wouldn't it be more prudent to fight the contract until and if their questions are answered satisfactorily?
I have posted a question on PANDORA's facebook page asking them whether PANDORA is in support of the 50 experts who signed the letter to HHS.
Justin emphasised the following from PANDORA's statement:
This led us to discovering that the HHS has not clearly communicated to patients, Chronic Fatigue Syndrome Advisory Committee members and ME/CFS experts. The result has been that many patients and experts have been making demands on government officials that are based on misconceptions and not likely to succeed or lead to the best solution.
On what specific misconception are the 'demands' of patients and experts based on? If PANDORA is so 'enlightened', I wish they would clue us in. By 'us' I mean the clueless 50 experts, 171 advocates and countless patients.
Is it a misconception that:
HHS has signed a contract with the IOM to re-define ME/CFS?
HHS is spending approximately one million dollars to do so.
HHS refuses to adopt the CCC in defiance of 50 experts, 171 advocates and countless patients
This is not what the CFSAC recommendation called for.
HHS lied when they said they are canceling the action to contract with the IOM.....just to change their mind a week later.
IOM will have non-experts on the panel.
IOM has re-named GWI to CMI and consideres CFS a somatic disease needing treatments of anti-depressants, CBT and GET.
Government contract can be broken.
If PANDORA has knowledge that any of these are 'misconceptions', why hold back this information from 'us'?
Finally, what does PANDORA consider 'the best outcome'? These vague innuendos are really disturbing at this time when we are fighting for our survival.
Really, really disappointing!!!