Bathtubs

I've been watching the news on the Fukushima Daiichi nuclear accident very closely since it happened. There just hasn't been enough of it to even begin to suit me. So, I read or watch everything I can find on the net: The Japanese mainstream media, the TEPCO/NISA/IAEA/WNN/ANS updates, Arnie Gunderson's Fairewinds videos, and blogs published by all types of scientists, engineers, real people and whackos. Luckily, google translate for Japanese is much better than for Persian, and better yet for French, German and Spanish.

I have no idea what's true in any of it. I don't think either TEPCO or the Japanese government yet know what's true about the damage to the reactors and spent fuel pool, but they've certainly demonstrated that they have intentionally withheld at least some information to "avoid panic." I'm thinking it will be many years before either they or the rest of us understand what has happened and why in any detail.

I suspect most of you already know why I'm writing about Fukushima on a blog dedicated to ME. It seems to me that the Fukushima information flow (and lack and inaccuracies thereof) is very similar to what we're dealing with in ME research. The rate of information release is agonizingly slow, some of it is flat wrong, some of it seems solid but incomplete, and it seems like some of it is being withheld or simply blocked.

Just as I've been frustrated by the small amount and slow pace of information coming out about Fukushima, I'm totally frustrated by the amount and excruciatingly slow pace of research on ME. But, in contrast to the state of ME research, at least we can generally assume that the Japanese are motivated to get the facts as quickly as possible to put a stop to the radiation releases. With ME, it's readily apparent, after 30 years, that there are very few decision-makers who have any sense of urgency at all about solving this puzzle.

So, I do the same with ME as I do about Fukushima. I read everything I have time to find and digest, and especially appreciate the forums and blogs and facebook posts and conferences that make it easy for me. I like to read/watch it all -- the garbage along with the good. I definitely don't want anyone to censor it for me or "protect" me from it. And I especially appreciate those knowledgeable folks who will take the time to try to explain and interpret the virology for me.

I want more! I want bathtubs of data on ME!!

(God bless Judy for being willing to speak as openly to us as she does.)

But, until the spigot starts flowing, I'll have to make do primarily with impressions, opinions, speculation and arguments -- some solid info and some just plain b.s.

Please keep it coming. And thanks for the companionship...

Blogger-fail

Thanks SO MUCH for the kind follows and comments already. I don't know enough about blogspot yet to be able to go back and edit my posts or reply to comments. I'll hopefully figure that out!

But, Nina, I may have figured out how to change the template so it's not white text on black now. There are other template options, so if this is also bad, maybe I can find another that works. Let me know.

Val

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