1/ Our association has written an open letter to the French health authorities to warn about the risk of myalgic encephalomyelitis from Covid, asking for:
- recognition, care & biomedical research
- notice of caution on exercise therapy
3/ The current situation of the 300K+ ME patients in France is unacceptable:
- no recognition despite its classification as a neurological disease by @WHO
- a routinely prescribed iatrogenic treatment
- severe disability w/o help
- barely a handful of specialists treating it
1/ Notre association a adressé une lettre ouverte aux autorités sanitaires pour alerter sur le risque d'encéphalomyélite myalgique suite au Covid, demandant :
- reconnaissance, soins, recherche
- avertissement sur la réadaptation à l'effort
Nous avons aussi contacté les député-e-s travaillant sur des propositions de loi pour le Covid long dont @MIRALLESMP & @TrastourIsnart
3/ La situation actuelle des 300,000+ patients d'EM en France est inacceptable :
- pas de reconnaissance malgré sa classification comme maladie neurologique par @WHO
- un traitement iatrogène couramment prescrit
- handicap lourd sans aide
- à peine une poignée de spécialistes
In face of the violent, unjustified attack against Norwegian ME patients in today's edition of Dagbladet, we would like to extend our full support to them & Norges ME-Forening.
No patient should ever be blamed for requiring safe treatments based on sound science.
Dagbladet ran a 12-page article titled "The ME war - noone has ever seen this before" which unilaterally promoted the views of psychologists that ME is all in the head, and that GET/CBT/LP are appropriate treatments for ME.
Both views have been refuted time and time again.
Studies on psychotherapies for ME have been plagued with methodological errors & patient reports of harm.
Meanwhile, biomedical research on ME consistently shows neurological, immunologic, metabolic & physiological impairments in patients affected by this debilitating disease.