Tonight, Prof. Klimas will appear on the CBS Evening News to speak about a new study showing Spinal Cord inflammation in ME which is great. We need more studies showing encephalitis and myelitis in order to get people to call our disease ME rather than "CFS."
As Klimas is in the news these days I am concerned that she will continue to promote GET and the very harmful version of CBT studied in the PACE trial. I think its really important for us to address why she does this and why she sometimes calls our disease "chronic fatigue." These things are very harmful and she obviously knows a lot better.
Prof. Klimas didn't do that much better than CAA in her press comments on the PACE trial. She did mention working within the energy envelope. But, like McCleary she agreed with Peter White that (the evil version of) CBT and GET studied were moderately beneficial.
There is a reason people are extremely mad at McCleary for saying these type of things: they are not true and they really harm us. This study will probably result in a lot of iatrogenic morbidity and mortality.
GET and the evil version of CBT are clearly harmful, NOT BENEFICIAL for ME ("CFS"). This MUST be stated unequivically. These are the usual lies from White and Sharpe. It is just as unacceptable for her to back up their lies as it is for CAA to do so.
This version of CBT is the one where the patients are told they have no physical illness and that they have a phobia of movement and that the only proven treatment for ME is to get over this fear of movement and constantly ratchet up their exercise. This is the exact opposite of an effective, safe and ethical treatment. It must be strongly opposed.
(2) Is she still calling ME not just "CFS", but sometimes "chronic fatigue." I've seen her do this more than once in talks and at CFSAC.
The big logo on her private clinic says "Chronic Fatigue Center." It is subtitled in small font "Research and Treatment for Neuro-Immune Disorders." At the bottom of the page, the address info lists the "Chronic Fatigue & Immune Disorders Research and Treatment Center." The small print text is nice, but we all know too well it's the titles and headlines that stick in peoples' minds.
I know it's easier to say 'chronic fatigue' than to leave on the 'syndrome'. OK so just say "CFS" at the very least. It's very easy to say. ideally I'd like to hear her call it "ME."
What really distresses me is (a) not only are these things she says destructive, but (b) she obviously knows better. This makes me ask (i) if she already knows what she is saying is wrong, why does she still say it and (ii) how are we going to ever influence her to change what she says if she already knows it's wrong and says it anyway? She goes out of her way to help us with speaking, volunteer and media appearances and then says some things that are obviously wrong and very harmful. This seems to me to go well beyond absent-minded professor behavior.
What is going on? Am I missing something??
The Absent-Minded Professor
Blog entry posted by justinreilly, Feb 23, 2011.