To begin on a light note, here's an all-purpose reply for every one of those well-meaning efforts, from Sick Humor.
Fluff but not at all funny: the PACE Trials published yesterday in The Lancet, which ought to be ashamed for accepting such bad science for publication. Unfortunately this bad study is spawning the plethora of happy fluffy articles with which your friends and relations are cluttering your inbox.
Don't even click on those articles. What they say boils down to: "CBT and GET will make you well because we know what you really are is depressed and out of shape." Don't give them the satisfaction of a high hit volume.
Instead, you can tell your well-wishers politely or otherwise that they ought to take a look at the more scientific study by Núñez et al, published 15 Jan 2011 in Clinical Rheumatology, which shows that treatment with CBT and GET actually makes ME worse.
What's so unscientific about the study by White, Goldsmith et al in Lancet? To begin with, they aren't even studying patients with ME. They carefully selected their patient cohort to include only those likely to support the outcome they were looking for. They used the outdated Oxford Criteria which eliminate all patients with signs of neurological disease. Well guess what? ME is a neurological disease.
A patient describes the White, Goldsmith screening of subjects for their flawed study:
Why would scientists deliberately set out to create a flawed study? The entire approach to ME officially supported by the British health care system is based on treating the disease as psychological. It would cost a whole lot more money to treat the physical causes of the disease. Further, the people currently in power, gaining salaries, royalties, speaking fees and study grants, want to stay in power. Conflicts of interest exist among those who make grant recommendations. Here's patient Siobhan McElwee's succinct take:
This is what happens when a wastebasket sort of diagnostic criteria is used. The Oxford Criteria which was used in this study does NOT differentiate between being chronically tired and depression and bonafide ME/CFS which has distinct neurological components. There seems to be an assumption that ME patients are professional, fear ridden couch potatoes with no vested interest in getting well. I find this almost funny. In the 80’s they told us it was because we were doing too much and type A personalities. Now they say we do too little and are afraid of moving about. Those who push the ‘psych’ theories on ME can’t even keep their stories straight over the long haul.
There is far more to ME/CFS than being chronically fatigued, a point that the powers that be seem to be conveniently overlooking.
Last time I checked a retrovirus could care less what one thinks. To date there’s not been a single retrovirus that does NOT cause immune, neurological and cancerous effect in humans. Gamma retroviruses (of which XMRV is one) in other species causes immune, neurological and cancerous effect in the species that they infect. Why is this so hard for the medical establishment at large to stomach?
Could it be that it just might require that money is going to have to be spent to actually TREAT millions of truly sick people worldwide? That money is going to have to be spent to screen the blood supplies? That careers are based on pushing this form of psychobabble on severely ill men , women and CHILDREN?
But if "follow the money" works to explain why false solutions are pushed, it also can help lead to the real science. Siobhan further points out:
Big Pharma companies like Abbot Labs and Glaxo Smith Klein don't invest millions of their own $$ into virology studies based on a psych treatable disease.
That's right, the pharmaceutical giants are betting their dollars on the retroviral connection. And you can't fake for example results that show, as Singh et al have shown, that Raltegravir and Tenofavir are potent inhibitors of XMRV in vitro.
Further, those drugs are working not just in vitro but in patients. To follow the story of two patients experimentally taking the antiretrovirals with excellent results, see X Rx, the excellent blog of Dr. Jamie Deckoff-Jones.
We're sick but we're not stupid. We patients aren't lazy or crazy---jumping jacks and chummy chats are not going to kill the retrovirus and the possibly numerous additional opportunistic infections that are wreaking havoc with our immune systems, our central and peripheral nervous systems and our circulatory systems.
Back as far as the 1980s, Doctors Peterson and Cheney were finding the CFS patients in their practice had minute, punctate lesions in brain myelination consistent with the cognitive losses they exhibited and that these lesions diminished and even disappeared with use of the experimental drug Ampligen, with patients showing simultaneous dimunition of the cognitive symptoms. Sorry I don't have a link for a study on this but it's documented in Hillary Johnson's excellent expose', Osler's Web, which I not only recommend you read, but I recommend you give a copy to each and every one of your beloved well-wishers who insult your integrity and intelligence with fluff pseudoscience promises of full recovery via the jumprope and the sharing circle.
In my last post, I used my beautiful, brilliant, tough and determined daughter as an example of one patient who needs real medicine, not CBT or GET. There are millions like her, waiting, while the grant money gets wasted on bad jokes like the PACE Trials.
Again, please appeal to your elected officials and write letters to editors, and blog and share, demanding real science. We need funding for studies on XMRV and other MLV pathogenesis, and on treatment with Ampligen, Raltegravir and Tenofavir, because what we have is infectious and debilitating retrovirus XMRV, not DUMB or LAZY. And work on convincing your well-wishers to help us with some real support for real science.
Please note: no offense is intended toward patients with, or doctors treating, real clinical depression, nor towards any reputable program of physical fitness or mental health. Yeah, I got a little scathing, but the scathe is directed at those who deliberately misdiagnose, mistreat and malpractice upon neuroimmune patients.