The draft P2P evidence review report has been issued and we have all had a chance to see just how appallingly bad it is. Now the question is what to do next.
Some have called for us to oppose P2P by boycotting it. I absolutely agree that we must oppose P2P. But where I differ is in the nature and breadth of tactics that we need to use.
What has been done to ME patients for thirty years and is being perpetuated in this P2P evidence review report is scientifically indefensible and irresponsible. Starting with the fact that the entire “CFS” enterprise as a clinical entity has been constructed on the sole basis of medically unexplained chronic fatigue. Seriously? Where is the scientific justification and evidence that all of the conditions encompassed by the common, ill-defined symptom of fatigue plus the current state of our medical knowledge are the same medical condition that should be studied and treated as one? There is none and there never can be.
And yet, for thirty years, that pseudoscience has held ME patients hostage in a living hell.
Such pseudoscience is the bread and butter of those with agendas to keep science from moving forward or to protect their own vested interests. We have seen it with cigarette smoking and acid rain and we are seeing it again with climate change. But you don’t fight climate change deniers by not exposing the flaws, bias and the hidden agendas in their “scientific” claims. You fight them by exposing where their “facts” are wrong, their “science” is unsound and their agendas are driven by self-interest. This is what ME advocates have been doing with the PACE trial and in my opinion is what we need to do with P2P.
Providing formal input to P2P allows us to expose the “science” of “CFS” for the scientific sham that it is. AHRQ (Agency for Healthcare Research and Quality, part of HHS) must respond to our comments, which become part of the public record that we can use later. Providing such input is as valid and necessary as a form of protest as boycotting or writing letters directly to HHS leaders. All forms of opposition are needed.
But given the history of this disease, we should be under no delusions that left to its own devices, HHS will listen to our P2P opposition, whether it takes the form of letters to HHS leaders, boycotting the meeting, or the submission of comments on the evidence review. Each can be dismissed by those who have chosen not to listen.
And much more fundamentally, we need to remember that P2P is just one event in a string of utter failures in HHS’ public policy toward ME that stretches back to Incline Village. You all know the issues – lack of research funding, harmful medical guidelines, abysmal medical care, lack of a strategy, the nightmare of insurance, disability and school accommodations and an agency hell-bent on acting unilaterally and with complete disregard of both disease experts and patients.
Ultimately, the real question is not what specific form our opposition to P2P should take. There is a place for all actions that shine a light on this travesty. Whatever you choose, make sure your voice is heard. Do not let your silence be construed as consent.
The real question is what else are we going to do to protest, not only about P2P but also about every other aspect of HHS’ handling of this disease for the last thirty years.
If ever there was a time for us to revolt as a community, by whatever means available, it is now.
Contact your congressional leaders and ask every one of your family and friends to do the same. Call your local and/or national media. Twitter. Sue the government. Contact the ACLU. Conduct a lie down demonstration. Protest at P2P. Whatever means of opposition that you can think of and are able to do, just do it!