The P2P:
"Conclusions. No current diagnostic tool or method has been dequately tested to identify patients with ME/CFS when diagnostic uncertainty exists. CBT and GET have shown some benefit whereas other interventions have insufficient evidence to guide clinical practice. GET appears to be associated with harms in some patients whereas the negative effects of being given a diagnosis of ME/CFS appear to be more universal."
Jeannette @ http://thoughtsaboutme.com/2014/09/24/p2p-dont-buy-the-hype-protest/
"Engaging the government allows them to claim that they took the community’s concerns into account when they have no intention of doing so. Their outreach to the patient community, the comment period, is a mirage.”
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"Remember the changes that were made to the IOM panel in response to patients’ concerns about various suggested panel members’ conflict of interests? No? I don’t either. The make-up of the committee was not changed at all despite a few advocates researching the background of the proposed panel members and finding some troubling facts. The feedback of those advocates was entirely ignored. If the government wanted our input, they would have designed the whole process completely differently instead of merely having one token, hand-picked patient advocate at the P2P workshop purporting to speak for the entire community. Giving our input means legitimizing the farce. Don’t fall for it.”
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"There is no doubt in my mind that P2P will harm patients greatly and I will have no part in that by being seduced into thinking that my engaging will result in any meaningful effect on the process."
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""P2P: Don’t Buy the Hype! Protest!The reason why I will not cooperate with, or participate or engage in, the P2P process is very simple. HHS and NIH have shown time and time again that they do not have ME patients’ interest at hear...thoughtsaboutme.com
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