Back in April, just as I had crash landed to the ground and serendipitously found a great ME/CFS doctor, there was a little symposium in Bethesda, Maryland at the National Institute of Health.
It was sponsored by the The Office of Research on Women’s Health, and a couple of big ABC organizations, the aforementioned NIH along with the HHS. This was all a big government-funded shindig with another outfit called the The Trans-NIH ME/CFS Research Working Group where they took thought-leaders from different NIH medical disciplines and gathered them all in one place to see what they think about us folks.
The seminar report is big and hefty, and I would hope that some wonderful PhD out there will help us all understand VDR Polymorphisms and Xenotropic murine leukemia virus related viruses (for instance) in a way that won’t make what is left of our collective brain shrivel. If you’re out there, please hollaback.
So without further adieu, the news as I see it;
Can we figure out how to describe fatigue? Now I can get a visual in regards to how unwieldy and un-navigable this boat could be to steer, but seriously. Anyone who has CFS/ME has their eyeballs glued to the heavens when the word fatigue is uttered even faintly two area codes away. It needs to be codified with real world symptoms rather than with that broad based single noun being fatigue. We need that so that we can get true patient subsets that have infectious etiology(ies). Using the word fatigue alone is too simple, especially when you feel like exercising or working and for sure you aren’t depressed. That’s not fatigue. That is something else, and it’s our job as patients to help our doctors understand what that is. No matter what.
Yea! They actually recognize that Post Exertional Malaise (PEM) is a hallmark symptom not just for the Canadians ;-). Ever had anyone (or oops! a doctor) tell you that you just need to run it off? You do your best, then the next day, you have flare-ups all over and feel like you were dragged behind a flatbed truck? You may even get a fever or a sore throat or be irritable as heck. Getting PEM to the forefront is imperative in getting this disease some street cred. This big symptom has been relegated to the attic for far too long. Let her shine, because we need to figure out a lot about the pathways of this one too.
It seems like they are skirting around XMRV and MLVs. Call me paranoid but after that whole Judy Mikovits Science Mag theater of the absurdness, there has been a bit of a chilling effect? I hope I am wrong, and that it’s just my mind playing tricks on me. Because good research here is so needed. How many CFS/ME patients have tested XMRV positive? Raise your hands. Or even know there is a test and you should likely know about its existence? The more of us who test positive, the larger the army is, the less they can ignore us. The blood supply needs to be protected too, as other countries have done. I really hope this will all be sorted out soon and the Whittemore Peterson Institute can get some swing into it.
Reading in the report about CBT (Cognitive Behavioral Therapy) made me wince, because CBT and GET (Graded Exercise Therapy) go together like peanut butter and jelly. But they aren’t as tasty, and they’ve been around the shelf far too long and are looking a little dusty. Sure CBT would be great for anyone coping with chronic illness if they need it at the time. But it won’t make the bugs disappear!
It was great to read that there are a bunch of biomarkers identified such as natural killer (NK) cell function, various cytokines, perforin, and membrane dipeptidyl peptidase-4 (CD26 antigen). The group was strongly encouraged to go further down the biomarker identity pathway. That is good news.
I’m sure I’ll have more to say on this subject as I absorb more of the material. As I said, it is heavy and technical. It’ll require a bit of time to tease out all the nuance.
Oh, and lastly, I guess in a sense we CFS/ME patients are “laypeople” in the true sense of the word. I am exhausted now and am going to lie down.