Tuesday, May 06, 2014

What's Happening in the ME/CFS World?

Between other commitments, including my family and the ME/CFS Parents group I started on Facebook, and my recent focus on researching and writing about one particular aspect of ME/CFS treatment - methylation and B12 supplementation - I have been having trouble staying up-to-date on what's going on in the wider world of ME/CFS. And there is a lot going on!

This is actually a very exciting time in the ME/CFS world, with new research opportunities, government initiatives, an effort to decide on a single case definition, efforts in the FDA, and more. Some of these efforts are wonderful advances forward, some include participants who need better direction from the patient community, but all of them represent opportunities for potential advancement for our illness which has historically been ignored.

Since I haven't been keeping up very well, that means that I haven't been writing much here about these events and helping YOU to keep up. I am going to try to rectify that by at least posting links here more frequently so that you can keep up to date, if you want to.

The #1 best source for staying abreast of this sort of news related to politics, research, government, and the whole ME/CFS community is Jennie Spotila's blog, Occupy CFS. Jennie is a friend of mine who used to work as a lawyer. I deeply admire both her tireless advocacy efforts and her talents and abilities to stay up-to-date on all of this and explain it clearly and fully in her blog posts. So, please sign up for her blog updates, if you'd like to know what's going on in the larger ME/CFS world in a timely manner.

Here are a few of Jennie's recent posts, to bring you up-to-date on important, ongoing efforts.

Research Roadmap
Back in mid-April, Jennie wrote about a Research Roadmap, a fascinating effort from within the CFS Advisory Committee (CFSAC) to bring greater attention and funds to ME/CFS research from the larger medical research community. This sounds like a very worthwhile effort (though it may take a while to get there), and I look forward to hearing more.

FDA Draft Guidance for ME/CFS
Jennie also reported that the FDA hosted a webinar on April 23 to explain their new Draft Guidance for Industry CFS/ME: Development Drug Products for Treatments. This is guidance that the FDA provides to drug developers. This is great news - FDA is actively trying to communicate to drug developers about ME/CFS and providing this guidance can help developers to properly design their drug trials. In her blog post, Jennie explains the details from the webinar, with links to more information and a link to submit comments.

IOM Diagnostic Criteria for ME/CFS
Have you heard about this government-based effort to develop a single agreed-upon set of diagnostic criteria for ME/CFS? This one started last year, and at first glance, this would appear to be great news. A single case definition for ME/CFS that all parties (government, patients, researchers) agree to is an essential element that has been missing from the ME/CFS world for far too long. However, there are some serious concerns with the effort. The Institute of Medicine (IOM) was chosen to lead the effort, and their efforts last year with Gulf War Syndrome (which has a lot in common with ME/CFS) were disastrous.

In short, this new IOM effort to define diagnostic criteria for ME/CFS has already attracted a lot of controversy. Many people - including some top ME/CFS clinicians and many patients - believe this effort is completely unnecessary and that a perfectly good definition already exists - the Canadian Consensus Criteria (CCC) - that just needs to be adopted by the NIH. So, there is a grassroots effort to stop this IOM effort entirely. Personally, while I like the CCC and would be happy with its adoption, I know our government is famous for a Not Invented Here bias. They want to develop stuff themselves even if it already exists. That's how we ended up with the ridiculous name Chronic Fatigue Syndrome from the CDC in the 80's, even though Europe had been calling this illness Myalgic Encephalomyelitis for decades. So, for me, I feel that it's a waste of my valuable, limited energy to protest an effort that is already under way.

So, here is a peek into some of the IOM controversy, from Jennie's blog. And if you want to catch up on the whole saga, here are all of Jennie's posts tagged IOM.

P2P Workshop
From what I've heard, this is the effort we should be most concerned with. The Pathways to Prevention (P2P) program is operated under NIH's Office for Disease Prevention, and the process began with a P2P Workshop for ME/CFS in January. The problem is that the process has been cloaked in secrecy and many aspects of it have not been open to the public. Here is Jennie's initial explanation of P2P. Unfortunately, it seems that things have gone from bad to worse.

The worst aspect of this process is that the P2P will develop recommendations on diagnosis, treatment, and research of ME/CFS with a panel of medical experts who know nothing about ME/CFS. Yes, you read that right. Stunning, isn't it? They've begun this process with a systematic evidence review of existing information, and in this recent post, Jennie breaks down the problems with the initial P2P protocol for the evidence review. Most disturbing of all is that this protocol looks like it will lump ME/CFS patients in with people with all sorts of undefined fatigue with no other symptoms required.

Whew. I told you there was a lot going on! There are lots of opportunities for moving forward in a positive way for ME/CFS patients...but also plenty of chances for things to go horribly wrong for us and for our patient community to end up worse off than we already are (if you can imagine that).

I am going to make a sincere effort to stay better informed and to keep you informed also. But I highly recommend following Occupy CFS for up-to-date information on all of these topics (and more). And I will especially try to let you know whenever there are opportunities for patients to get involved, submit comments, and make our voices heard. That's the good news in all of this - the patient community has made great strides and has never been better organized to make sure that we make the best of any opportunities for our input.

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