I got this leaflet about a post-Lyme/ME study in Marseille, France to take place on the 31st of December 2017. I am not Lyme literate at all, so I'm not sure what to make of this. It could be interesting to compare these two illnesses (although it is not clear at all which ME criteria they will be using). The fact that one specific lab is so involved makes me a bit suspicious. The title of the study is "Mystic Study". hm. I couldn't copy-paste this into google translate, but these are the main points: http://www.hopital-europeen.fr/actu...-fatigue-chronique-encephalomyelite-myalgique
From what I've heard about people who had an appointement with Dr Laurent Chiche, he psychologises the illness, is not compasionnate at all and does not believe a diagnosis is useful...
The current NIH Intra-Mural study is comparing controls to an ME/CFS group and a post-Lyme group. Sample sizes are not great (I believe 20 each), but they are looking deep and biological...i.e., not just questionnaires. Just as Gulf War Illness is proving to be a different beast, post-Lyme is likely too. It would be great to have some diagnostics available to sort us out, it would mean a huge difference for future research.
Laurent Chiche is part of a group of docs supporting the BPS theory in France, the Maes & Fisk version according to them (http://www.sciencedirect.com/science/article/pii/S0248866316303526). He's been quoted earlier this month in a popular french newspaper article. The article mentions "perpetuating factors, probably psychological". http://sante.lefigaro.fr/article/que-sait-on-du-syndrome-de-fatigue-chronique-/
That's the weirdest thing I've seen in a long while. A one-day 'study' with the title Étude MYSTIC — with the MYSTIC in caps — to be held on New Year's Eve. I can't help feeling that the patient population for this might be somewhat atypical ... of anything. [typo edited]
Reading the Figaro article, Chiche does sound extremely BPS. He is basically saying patients read stuff online, then self diagnose without any proof of disease; the goal of listening to these patients (as opposed to ignoring them) according to Chiche is to explain to them that they are in fact not sick, which will prevent them from overconsumption of medication. But the chief researcher is Dr. Marion DELORD, does anyone know her? (The only thing I could find was a list of biomed research into infectious diseases but nothing to do with ME or post-Lyme.) One thing that concerns me is that we don't know which ME criteria they are using. If Chiche is involved in it, it would probably be "anyone self diagnosed with vague fatigue symptoms"... PS @FreeSarah my thoughts exactly!
It's one of those articles which is a bizarre mix of biomedical evidence and psychosocial bullshit. Basically they seem to be suggesting that psychological factors can perpetuate a disease which they don't seem to question as being biomedical. So completely biomedical symptoms cause psychological symptoms which then cause the same biomedical symptoms The psychological bit roughly translates as follows, via Google Translate: This is the Maes and Twisk diagram they refer to, which literally suggests that psychological stress causes autoimmune disease : It's not completely clear that they agree with it, but they don't denounce it either: Aside from Chiche, the ones I looked into looked fine. There was even a paper strongly advocating medical treatment for psychiatric patients, since they can get sick too (something often ignored in the interest of not encouraging people to be ill).
That's basically the core issue with the Association française du Syndrome de Fatigue Chronique (both Laurent Chiche and Pr de Korwin, interviewed in Le Figaro's article are members of the scientific board). They put biomedical and BPS research on the same level. So they praise the IOM report while at the same time classifying CFS (they withdrew "encéphalomyélite myalgique" from their website a few years ago) as a functional disorder. The main problem with this association is that its scientific board has the final say on everything, so it's not at all oriented on patients' perspective. They do us a great diservice. You perfectly summed up the incoherences of such an approach @Valentijn That doesn't seem to bother them. The hardcore psychobabblers who were part of the board a few years ago are hopefully gone, but we're left with this strange mixture. Not really helpful for the patients they should be fighting for...
