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
Jul 152011

Illustration by Matt HertelI was so excited to start a new therapy for CFS, CFIDS, ME, whatever you want to call a redheaded stepchild neuroimmune disease with no name. But it won’t be, at least for now. I’ve been alerted that shipments of GcMAF to the US from BGLI in the Netherlands are temporarily suspended due to recent confiscations by the FDA. It’s not that the federal agency has anything in particular against GcMAF, it’s just that there is a general curtain falling on the importation of these kinds of biological products by the Department of Homland Security. Anybody who knows anything about macrophage activation (hint: what do you think MAF stands for?), knows this is a serious deficit for patients who have  been without medical recourse for decades. The reclusive Dr. Nabuto Yamamoto holds the patent for GcMAF, so well, there ya go.

My doctor won’t even do the necessary bloodwork to receive this form of GcMAF anymore. Meh. Who would if the meds will never bother to arrive from the Netherlands anyway? Word is you have to hand carry it in your suitcase yourself twice in six months, if you have the physical and financial means, or the where with all to deal with this, for goodness sake.
 Posted by on July 15, 2011