It has now been over 500 days since Lombardi et al was published in Science. Yet we are being subjected to the publication of a five million pound study that was designed by people with conflicts of interest to prove that the treatment for ME/CFS patients is exercise and therapy. Isn’t it disgusting? Even though they excluded patients who were really sick or had neurological problems, and included some depressed people, they still couldn’t show more than small improvement in a little more than half the participants with a significant number of adverse events! For a disease that waxes and wanes a little if you do nothing. Lots of people can exercise in the early stages of the illness, until they can’t. Not a single lab test. It’s unbelievable that anyone would be willing to put their name on it. While new people are being infected, new babies being born with it every day, the British Medical Research Council spends a pile of money to try to prove that therapy and exercise are helpful, if you are well enough to attend regularly. What a joke! Except that it isn’t a joke. It’s barbaric.
Professor Malcolm Hooper’s formal complaint:
Magical Medicine: How To Make A Disease Disappear
This morning I got an email from an HIV specialist in the UK who would like to prescribe antiretrovirals for a patient with CFS who is XMRV positive and well informed. He is of course extremely experienced with the drugs. He consulted the necessary powers that be and was told that he couldn’t do it without collaborating with an ME/CFS specialist. An ME/CFS specialist in the UK seems to be a doctor who believes that the best treatment is to talk your patients into exercising. The mail I get from the UK is beyond heartbreaking. It seems to be acceptable to lock teenagers up in psychiatric hospitals, tell them they’re not sick and force them to exercise until they want to die. Why not just euthanize them? Save everybody a lot of trouble and money.
I’ve had a lot of mail lately about the CAA. The recent comments, and absence of meaningful commentary, by Kim McCleary, the president of the CAA, on CNN, are a disgrace: link. And the fact that Suzanne Vernon, the Director of research, has 30 papers on PubMed coauthored by William Reeves, most recently in 2009, pretty much puts the nail in the coffin for me. Is this really the best they can do with the 3.5 million dollars of public contributions in their last three annual reports?
I’ve been asked by several people to call the illness ME instead of CFS. Personally, I don’t think ME is much better. It hasn’t done much for patients in the UK. For now, X related disease works for me, X being not just XMRV, but what looks like in the end will turn out to be several or even many simple retroviruses.
I don’t see how anyone can read the following paper and still be in doubt. It is a public health emergency. To spend years arguing about what isn’t, instead of coming together to discover what is, no matter how devastating, compounds the crime against humanity that has already occurred:
Infection, viral dissemination and antibody responses of Rhesus macaques exposed to the human gammaretrovirus XMRV. Onlamoon
I got home last night from another successful trip to Reno to interview doctors. So far this morning, I’m doing well. I’m planning another short visit next week. Things are coming together very nicely. We have the pieces needed to move forward. I’ve stood beside Judy in the lab and looked at cells. I still don’t know enough to be able to second guess her work. I can’t evaluate the technical piece. But I can tell you that there’s not a mouse anywhere:) and that Dr. Judy knows her stuff. There is a fusion of knowledge and skills happening. We’re not going to wait for the scientific community to prove what should be obvious to anyone studying the pathogenesis in animals of similar retroviral infections. It took Barry Marshall seventeen years to prove to the world that H. pylori causes peptic ulcers, and he had to infect himself to make his point. We won’t ask our scientists to do that this time. Lots of the doctors I’m hearing from already have the illness.