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

Effi

Effi

Established Member (Voting Rights)
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:

goals of the study:

- finding proof for the similarities between "post-Lyme syndrome" and "chronic fatigue syndrome" (they mention CFS and ME in the title, so I assume they mean what we call ME here)

- better interpretation of analysis results

- contribute to better medical support for patients


Criteria to take part:
over 18 y/o, symptoms present for over 6 months after a treated tick bite, post-Lyme diagnosis confirmed by doctor.

They say nothing about criteria for ME patients.


Test takes an hour and a half, at the cardiology department of the mentioned hospital in Marseille. It consists of a medical questionaire and an exertion test (10 minutes on a stationary bike). Blood samples will be taken before, during and after the exertion test. Also ECG and blood pressure will be measured.


doctors involved:

Dr Julie ALLEMAND, infectious disease specialist

Dr. Claire CAMUS ; biologist, Alphabio (lab)

Dr. Laurent CHICHE, internal medicine

Dr Constanza DALVIT, infectious disease specialist

Dr. Marion DELORD, infectious disease specialist (chief researcher)

Dr. Philippe HALFON, infectious disease specialist

Dr. Gérard LAGRANGE, cardiologist

Mr. Guillaume PENARANDA, biostatistician, Alphabio (lab)

Dr Stanislas REBAUDET, infectious disease specialist

Dr Frédérique RETORNAZ, internal medicine

Dr Chloé STAVRIS, internal medicine
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http://www.hopital-europeen.fr/actu...-fatigue-chronique-encephalomyelite-myalgique

mystic_2_1.png
 
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.
 
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.

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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:
 
Nicolas the french guy said:
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).
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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:
If there appears to be a link between CFS, psychological factors and stress, it is necessary to specify that their nature and their different terms of expression remain to be explored [42,43]. Indeed, if depression and anxiety are frequent, they would be most likely related to the consequences of CFS on life and the everyday life of patients [44].

Psychological factors would intervene then more in the maintenance than the appearance of the CFS because of beliefs, cognitions and behaviors related to CFS and its causes [45]. Indeed, the CFS and psychological distress particularly linked to the handicap of constant fatigue andlack of effective treatment, would confront patients with difficulties of adaptation to different physiological stresses and
psychological adjustment [46].

Moreover, the lack of recognition medical and social of their syndrome could also increase the intensity of patients' anxio-depressive suffering [47]. All of these factors would strengthen the demonstrations
CFS in patients and their functional limitations, and hinder patient recovery by worsening their perception negative of the syndrome and reinforcing their feeling helplessness and inefficiency.

Finally, with regard to traits personality, patients with CFS are described as perfectionists, conscientious without presenting proven disorders of the personality [48]. It has been shown that neuroticism and perfectionism would have a mediating role on the severity of the depression and therefore an indirect role on the severity of the CFS [49]. It therefore seems necessary to study the role of the personality, regardless of the question of a possible disorder, in a dynamic and evolutive perspective consistent with the existence of the individual.

If psychological factors are involved in the CFS, their role must be studied by considering the complexity of the different elements at work and the heterogeneity of patients.
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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:
The biopsychosocial model applied to CFS implies that following triggers of fatigue (viral infections, stress. . .) psycho-behavioral maintenance factors (traits personality, prolonged rest, brutal fluctuations of the level activity) and reinforces the interest of CBTs [50].

Maes and Twisk enriched it, by involving a dysimmunitary ground, gastrointestinal disorders (intestinal hyperpermeability and interactions with the microbiota) and inflammatory processes (low level with central nervous involvement and dysfunction astrocytic) and immunological information maintained as a result of initial aggression, involving activation of stress pathways oxidative and nitrosative [36,43].

Physiological stress (effort) and psychological would act as cofactors to produce characteristic manifestations of CFS (muscle weakness, post-exercise discomfort, neurocognitive disorders. . .) and other symptoms accompaniment (pain, digestive disorders, etc.), whose psychosocial consequences would maintain psychological stress (Fig. 1)

The new diagnostic criteria (SEID) encourage the development of new lines of research [51].
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Effi said:
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.)
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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).
 
Valentijn said:
It's one of those articles which is a bizarre mix of biomedical evidence and psychosocial bullshit.
Click to expand...

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

Valentijn said:
Basically they seem to be suggesting that psychological factors can perpetuate a disease which they don't seem to question as being biomedical.
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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...
 
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