ME/CFIDS/CFS/FM more UK
New Strategy for a Black Day
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Wessely has made a major step that I believe now puts his research into a different category from where it has been. All research data is supposedly available for researchers who want to re-analyse it, but that very rarely happens in purely scientific circles unless there is outright fraud. As of now Wessely's research is used as a primary guide for major governmental policy and spending (as if that's new). As a result of that, the data he has collected and analysed are more than ever public data. I see no reason why Parliament or a designated researcher should not take a closer look, and with the right approach, we might encourage that to happen. His data have always been badly in need of re-examination, re-analysis.
Now, with new centers popping up like mushrooms (toadstools?), there are some questions that truly have to be answered and were never answered in his original publications. Bear with me--It is very difficult for a lay person to understand the impact that Wessely has had on research by broadening the case definition. It seems to many a small and a technical detail. In fact, that one "small" action on his part has completely stacked the deck when it comes to interpreting research.
The wholesale inclusion of minor cases and then the exclusion of dropouts from analysis has skewed results dramatically and has allowed him to hoodwink the population of the world into believing that exercise and CBT will treat M.E. When in fact they make it worse. I know you all understand the issues; we are all appalled that others fail to see through the diabolical simplicity of this ploy. We often complain that Wessely's methods don't work. And they don't work for us. They make people with M.E. more ill. BUT the methods work for those who are less ill, who have idiopathic fatigue, depression, and perhaps some other conditions.
The government of the UK is launching into an wholesale experiment to try out those methods. What is going to happen? Someone (many?) with M.E. will get worse (maybe much worse) and complain. Loudly, we hope. Maybe die. We hope not, but it may happen. There will at some point need to be an investigation. I am suggesting that we position ourselves like this: DO NOT say that Wessely's methods don't work. Why? The data he has promoted are too widely accepted to overcome with that approach. Besides it's wrong. They do work for SOME. DO SAY Wessely's approach is inappropriate for many patients AND WE NEED TO KNOW WHICH.
At which point we press to have his data re-analysed to find out which patients with which symptom clusters got worse and dropped out of his research. These are facts he has fought to keep out of print, and unless I miss my guess (and I miss lots of them), these new centers and his new prominence are going to keep him from being able to hide those facts indefinitely. Ethically, he is supposed to collect and keep the data--including data about dropouts. Would it not be interesting to see? ``
I just sent a note to our hero of the day, the Countess of Mar, and included this paragraph: ".....Referring to the institution of new treatment centers, the government of the UK will now be faced with the daunting but humane task of trying to sort out those fatigued patients who respond well to CBT and GET from those with M.E. who will be made worse. An independent re-analysis of Wessely's data over the past two decades would be most helpful in making those determinations......"
Making Wessely go away is not possible, but This is something that can be done.
Respectfully, Joseph Lenz, Ph.D.