NIH Workshop on ME/CFS: State of the Knowledge?

Bottom line: It's abysmal.

I missed yesterday, but watched the NIH webcast today and those YouTube vids from yesterday that Vikki Walker posted (bless her). I am so upset that I'm starting a blog rather than posting on the forums I frequent or tweeting my outrage, which are my normal means of self-expression. I'll go later into who I am and why I'm following and blogging on this topic. But, for now, I want to talk about what I saw and heard today.

Overall, the "knowledge gaps" re: ME aren't gaps. They are gaping chasms. To sum up the "state of knowledge" from yesterday and today:

• It's a horrible, multi-systemic disease. You can't name a bodily system that's not dysfunctional in some way in those afflicted;
  
• Afflicted people are much, much sicker than the research and medical establishments have even begun to recognize;
  
• No-one agrees on who has it;
  
• No-one agrees on what causes it;
  
• No-one knows how to assess whether any treatment approach works - let alone for whom, for how many, or how much;
  
• There is no agreement on paths forward or priorities; and
  
• There's no government funding available to do the research necessary to answer any of these questions anyway.

Kudos to Dennis Mangan and the patient reps, among which I don't include the CAA, for holding a workshop to publicly and undeniably demonstrate that the US government medical research establishment has made no progress on any of these issues over the past 30 years. What else can one say in response to these past 2 days other than "Shame on the NIH and the CDC?"

I'm a WPI fan and, once again, Judy Mikovits demonstrated her head-and-shoulders-above brilliance at the meeting. And, once again, she was cut short, interrupted, ignored and publicly admonished. I am so tired of having the one person with immediately useful research and clear ideas of what needs to happen next being stifled! But anyone who has been following events over the past 2.5 years knew this conference wouldn't result in funding for the WPI anyway.

The one useful insight provided by any of the government speakers (other than Harvey Alter, who is useful just by showing up and breathing) that I saw in the past 2 days was the point made by the woman from AHRQ? AHQR? I'm not sure of her workgroup's name (will certainly find it again), but she is the one with the history in Congress. Her point was one we already know, but can't be repeated often enough: Funding for research on ME and a research agenda that makes sense is solely a matter of POLITICAL WILL. All funding for government-sponsored research comes from Congress. Congress can intervene and set research priorities, down to the level of specifying research topics, as they did in the late 80's and early 90's, although it was undercut and diverted by the CDC. Not insisting on hearings about the CDC diversion of funds is where the CAA most severely failed us after Hillary exposed it. And the CAA has continued to severely fail us by being unable to generate any further political will in the 20 years since then! The reality is what Roy and other experienced advocates have been saying, again and again: Where we most need to focus our efforts as US patients and advocates is on Congress. We need new, healthy-enough patients, like Mary now that she's back on ampligen, and patient advocates, like Chris, to be walking those halls, rather than Kim.

So, it will be interesting to see what Suzanne Vernon writes up about this workshop. It's more interesting that Suzanne has the write-up job. It was even more interesting a few weeks ago when I spoke with Maldarelli at NCI, who perceives that the CAA is the patient advocacy organization that best represents us. Obviously, no-one at NIH or anywhere in the government understands that the CAA exists only because of a very few, very wealthy donors now, rather than a widespread, grassroots, general level of patient support. Maldarelli actually stated he believes the CAA is THE organization that represents the patient community, and certainly nothing that occurred at this workshop would disabuse him or other feds of that notion. There is LOTS of work to be done with NIH on that issue, let alone the huge amount of work we need to do on Congress. And, whatever Vernon writes up, we can be sure it won't support the appropriate level of research into HGRV research going forward.

I'm distraught. I'm confused. I don't know where best to put my energies.,,

Val