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 212011

Now I didn’t know who Simon Wessely was until I got ME/CFS. Once that event came into my life like an eighteen-wheeler at three am on a long haul, I started seeing his name pop up just about everywhere.  You see the British call a truck a lorry, they also call CFS, ME, or Myalgic Encephalomyelitis, hence the ME/CFS.

It confuses the heck out of everyone who wants to get a handle on this disease. Intentional? We will look into that one in another post.

So today I read in the UK Guardian that Wessely is getting death threats from sufferers of ME, going so far as to call them “militants”. Death threats or personal attacks are never OK, and I feel sorry for the ones who got them.

But let’s look at the reason for this pent-up frustration by patients suffering from ME/CSF, some of them bed ridden for over 20 years — most of them a spring of activity and life before they got struck down to their knees by this disease.

Even after 25 years of research, the “truth” is not yet known. We are close to a cure because of the tenacity of some doctors. If you scratch the surface, all indicators point to a real gammaretrovirus which looks like it could possibly be XMRV. All indicators in my experience with the disease and amazing partial recovery clearly point in the direction of a retrovirus, other viruses unbeknownst to us, or viruses we already know about but not enough. Once we have codified and standardized biomarkers and tests that our primary care physicians can give us to detect it (just like HIV) then we can finally focus on the c word, ahem, a cure. Many of us have tested both XMRV and NaGaLase positive so there’s something clearly there that’s not in our heads — unless it’s a retrovirus that crossed the blood-brain-barrier, or an enterovirus, perhaps? Who knows.

Enter Simon Wessely.

He sounds like a nice enough guy. From across the pond, the name brings an air of a mulletted footballer, or a distinguished actor. In real life he heads up the department of psychological medicine at the Institute of Psychiatry at Kings College in London, in addition to being a professor of epidemiology and having a lot of other accomplishments and responsibilities. Obviously, he isn’t suffering from ME/CFS.

All started well enough. He and his coworkers advocated for an organic cause to the disease, even going so far as to find an association between autonomic dysfunction and chronic fatigue syndrome. He provided what people in the field thought was reliable data. Then at some point, Wessely started calling ME/CFS a psychiatric problem that needed Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET).

Wow, why do I feel like I’m in a Three-card Monty game? Data here, data there, the cards come down and — again it’s the All in your head go to the shink card? Coming from the head of the Psychiatry Institute, it’s just too close to a hammer calling everything “disease” a nail.

Even the London Guardian itself published a letter saying CBT and GET do not work.

Oh how I wish those things would work on my CFS-related double vision or the diastolic dysfunction of my heart to name just two of my “non-psych” related symptoms.

I tried, man how I tried. My husband and I would walk around a little lake in the neighborhood most evenings, and one day I felt really good. So instead of just walking, we ran a bit, maybe 200 yards. Caught our breath for 400 yards and did the same again. Did I ever get hit by a brick. My symptoms flared up, and it took me a couple of days to get back to “my normal” again. That is exactly what GET is recommending. No I wasn’t overdoing it, it just didn’t work for me.

EDIT: Apparently this is getting traction very quickly as Discover Magazine has now posted another valentine to us all ME/CFS types. Why is this?

 Posted by on August 21, 2011