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post-Lyme vs ME: comparative study (France - dec 2017)

Discussion in 'BioMedical ME/CFS Research' started by Effi, Nov 19, 2017.

  1. Effi

    Effi Established Member (Voting Rights)

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    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

    [​IMG]
     
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  2. pteropus

    pteropus Established Member (Voting Rights)

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    nice photo. "chronic yawning syndrome" or "chronic sneezing syndrome" :emoji_thinking:
     
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  3. Cheshire

    Cheshire Senior Member (Voting Rights)

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    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...
     
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  4. Effi

    Effi Established Member (Voting Rights)

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    @Cheshire Oh wow, that sounds really bad!
     
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  5. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Just doing a write-up of this... couldn't have come at a better time!
     
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  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Yuh oh. Maybe not so useful after all.
     
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  7. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    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.
     
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  8. Nicolas the french guy

    Nicolas the french guy Established Member

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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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  10. FreeSarah

    FreeSarah Senior Member (Voting Rights)

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    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]
     
    Last edited: Nov 20, 2017
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  11. Effi

    Effi Established Member (Voting Rights)

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    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. :banghead:

    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! :rofl:
     
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  12. Valentijn

    Valentijn Not a moderator

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    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 :confused::
    twisk.jpg

    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).
     
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  13. Cheshire

    Cheshire Senior Member (Voting Rights)

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    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...
     
    Last edited: Nov 20, 2017

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