A group of researchers who believe ME and long Covid are psychosomatic held a very shady secret conference in Norway
On 13 October 2022, a group of researchers who believe that ME and long Covid are psychosomatic met for a one-day 'Mind-Body Research Lab Seminar' in Oslo, Norway. The conference was by invitation only, and was not announced anywhere in the press or online. No recording was allowed.
The conference was held under something called the Chatham House Rule, which states: "When a meeting or part thereof, is held under the Chatham House Rule, participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed." According to Wikipedia: "The rule is a system for holding debates and discussion panels on controversial topics, named after the headquarters of the UK Royal Institute of International Affairs, based in Chatham House, London, where the rule originated in June 1927."
The Chatham House Rule is usually used in politics or in business; it's unusual for it to be used at an academic conference.
Needless to say, this all seems a little shady.
Some Norwegians certainly thought so, because someone made a successful Freedom of Information request, and obtained a welcome email and a program relating to the conference.
(If the conference was so secret, how did anyone find out about it to make an FOI request? I'll come to this later.)
Most of the speakers at the conference appear (from my reading of their names) to have been Norwegian, with three exceptions: Paul Garner, Michael Sharpe, and Trudie Chalder, all of whom are famous for pushing forward the idea that ME and long Covid are psychosomatic. Sharpe's talk was titled: "Why people find it difficult to accept psychological cause and treatment."
Disturbingly, the goal of the conference was not just to share ideas, but to strategize about how to push the psychosomatic view of post-viral illnesses as far into the mainstream as possible. The welcome email states: "This is the beginning of a process where we will decide how to take this forward. Starting with a written statement in a well-known medical journal (we are negotiating this at the moment)."
For me, learning about this has changed the way I look at those who insist that ME is psychological. I used to think that they were self-servingly negligent, in that they avoided paying attention to the mass of scientific evidence proving that the ideas they’ve built their careers on are incorrect, but nevertheless I saw them as basically well-meaning. However, more and more I’m coming to see the ME-is-psychological crowd as, not just a strain of scientific thought, but an organized political movement whose goal is to prevent money from being spent on government support, insurance, and medical research and treatment for people with ME and long Covid.
There's a strange epilogue to this story: the 'Mind-Body Research Lab Seminar' was held in secret, but afterwards one of the conference organizers, psychology professor Silje E. Reme, talked about it in an interview with a Norwegian newspaper. In this interview, Reme claimed that the police had performed a threat assessment in advance of the conference, and had recommended that security guards be present during it. She also claimed that during the conference the police had been on standby in case anything happened.
However, the Oslo police say they have no record of any of this.
Reme has stated publicly on several occasions that ME researchers are subject to threats and harassment. This is terrible if it's true - harassment is never OK, and no-one should be made to fear for their safety. But I can't help but suspect that these threats and harassment don't exist in reality, and were instead invented as a smokescreen to deflect legitimate scrutiny and criticism.
References
A Twitter thread about this:
MElivet: Secret ME conference in Norway: Were the police on standby?
The 'Mind-Body Research Lab Seminar' welcome email:
The 'Mind-Body Research Lab Seminar' program:
Systemic bias against people with ME has been helped along for decades.
And if anyone with ME/CFS could pose a real physical danger to such a conference! Sorry, jokes asides, this simply makes me mad. Yes, I was able to get a little better with Pacing, neurotraining and so on. But I got A LOT better as a more or less side effect after I took Paxlovid due to a COVID-19 infection. And this is not psychosomatic, as I feared to get a lot worse with Covid.