I'm not going to write much today mainly because I've been fighting off two nasty viruses the last week (one stomach which is a bit better now) as well as a nasty cold. Despite these, however, I'm not NEARLY as sick as I was in January with the M.E. crash.
As most of you probably know, A British study came out this week claiming that the two best treatments (out of 4 studied) for M.E/CFS are graded exercise therapy (GET) and cognitive behaviour therapy (CBT). The media, of course jumped on the band wagon. So what does this mean? More stigmatization for M.E. patients from friends, family, the public, and worst of all doctors who read about this study and don't understand the background - leading them to tell patients to "exercise" in order to feel better.
First, from what I can gather, the patient group studied did not meet the definition for M.E./CFS that is usually used by doctors who specialize in treating it - at least in North America. Also, if patients had neurological issues, or were extremely ill they were excluded. Huh??? My guess is that the illness this study looked at wasn't the one many of us have. And yet it's recommendations will be used to harm us.
I know that my specialist is going to be very very frustrated by this study as her main treatment is pacing (rather than pushing as described in the study with the graded exercise treatment). Having treated thousands of patients, she has witnessed the damage of pushing. She has seen people go from moderate functioning to bed-bound in a nursing home through pushing. She does use CBT, but not as a treatment, rather as a means to help patients cope.
Of course if some money and effort were put into more research to understand the biological underpinnings of the illness, perhaps we could be treated rather than being counselled on how to "cope" with a disabling illness.
For more discussion about this check out Sue's Learning to live with CFS blog:
http://livewithcfs.blogspot.com/2011/02/bristish-study-floods-media-with.html
As for me, with the one step forward, three steps back for M.E./CFS research, I want a different diagnosis. No really. It actually is unfathomable to me that with the severity of the fatigue/immune disease I experience, that this is how things are.
Here is one expert's response to the flaws of this study - I will add more as they appear:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
Here's another alright one written by the CFIDS association of America:
http://www.cfids.org/cfidslink/2011/lancet-study.asp
A fellow patient's blog (a doctor who has the illness) wrote some decent commentatry here:
http://treatingxmrv.blogspot.com/2011/02/500-days.html
It is all so frustrating. I myself have gone from a mild/moderate case of ME/CFS (still being able to work full-time, though with extreme difficulty) to being fully bedbound -- much as a result of being told to push past it and exercise. This is going to be so damaging to patients. The fact that this study got so much publicity despite all its flaws is a sad reflection on modern media reporting. And on the powers that be in the UK. Something must be done.
ReplyDeleteHooper's response is excellent.
I so agree! When I first heard of that study I thought "that's ridiculous - we can't exercise". Then I read it further and came to many of the conclusions as you- thanks for posting in a clear concise way!
ReplyDeleteI know Laurel, I have another M.E. friend to which a similar thing happened and now its taken her years and she's not up to the level she was before the push.
ReplyDeletePJ, thanks for stopping by, I joined your blog as a follower.
I never paced but pushed and crashed for years until I became bedbound. I did this until I had no choice...my body stopped. Lyme increased this level of disability of course...but with Lyme you need to pace too!
ReplyDeleteThis article is so damaging. So frustrating. So wrong.