Sep 062011

NPR, I really thought I could count on you to be what you describe yourself as on your about page: a “thriving media organization at the forefront of digital innovation.” On Monday’s two segments on ME/CFS here and here you let me down.

The first segment of Monday’s Morning Edition began well enough, with first-hand accounts from ME/CFS patients. They sounded credible, and one was eloquent enough in her description of ME/CFS vis a vis cancer, that she actually envied the way cancer patients are treated by the community at large. This was powerful and hit home.

Then you brought out the heavy hitter Tony Komaroff who explains how it’s hard to define ME/CFS and that doctors are still skeptical because the ‘syndrome’ is being defined by patient symptomology. You then go into how it screws up your brain, your immune system, your energy metabolism, your life.

After that you trot out the gammaretrovirus, XMRV, and promptly kick it right back to the curb. Sorry, guys! It was as if the writers cribbed all the press releases on lab contaminants the night before. Where’s Amy Dockser Marcus when you need her?

But the kicker was the second segment where you get real down and dirty with CBT (Cognitive Behavioral Therapy) and GET (Graded Exercise Therapy). As if we can’t get enough of our two best friends, there they are again on NPR for the whole world to have a listen to.

Apparently it would behoove ME/CFS patients to “change how [we] experience our symptoms.” We’re a whiney lot who catastrophize and need a serious slap in the face with positive thinking.  Also, if we aren’t wallowing in our own misery, then we’re without a doubt so out of shape we just don’t even get it. No, we are worse than that, we are ‘deconditioned.’

So. Let me see if I get this? If we get off our duffs and meld slowly back into the bionic selves that we were before we got the ‘grippe’ and take the talking cure, then the disease was just nothing more than a stepping stone to our own self-actualization?

As I wrote before, how I wish it were true that ME/CFS patients are simply depressed and deconditioned.

A little light creaked through the door when Dr. Lucinda Bateman spoke on your program. A clinician with experience, who’s been in the trenches since the 80’s outbreaks in the US, she gets push/crash. She understands why ME/CFS patients want to do, do, do when they feel good, and that these same patients ‘crash’ afterwards with disturbing symptoms. She doesn’t get CBT, she says. She doesn’t know the cause and doesn’t think GET will do anything beneficial. And like pretty much everyone with solid mental faculties, she waits for science to pinpoint the cause of ME/CFS.

I wonder, what is it about XMRV that the majority of the press is doing such a lousy job researching it? I know science reporting is hard, but this is as important as AIDS!

You know, positive thoughts and fresh air benefit people who suffer from any chronic illness no matter who they are. They just won’t cure true ME/CFS.

 Posted by on September 6, 2011
Aug 172011

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.

 Posted by on August 17, 2011