Thread by @MillionsMissgFr

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

👉 cloud.millionsmissing.fr/s/6Ak6t4wQnHj9…

#pwME #MECFS

2/ Among the 92 recipients of this letter : @MinSoliSante (cabinet of the Minister of Health @olivierveran), @AlerteSanitaire, @SantePubliqueFr, @HAS_sante (High Authority of Health), @hcsp_fr

We reached out to MPs working on #LongCovid bills incl. @MIRALLESMP @TrastourIsnart

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

4/ To explain ME, a little known disease in France, and the risk that it is triggered by Covid, we based ourselves on the available evidence base to date :

- symptoms including post-exertional malaise
- epidemiology
- disability statistics
- clinical recommendations abroad

5/ We heavily insist on systemic exertion intolerance, as marked by post-exertional malaise, the hallmark of ME:

- it is objectively measurable (2-day CPET), showing that ME is not psychogenic

- **** it contraindicates exercise therapy ****

6/ To restore the equality of rights, we request:

- the official recognition of ME under its classification as a neurological disease by @WHO & as a long-term health condition
- a warning on exercise therapy for HCPs
- care, training & biomed. research programs *with patients*

7/ In support of our action, more than 90 clinicians, scientists and academics, and 30 organizations & associations, signed our open letter.

We are deeply grateful to them and would like to sincerely thank them for their help.

8/ We thank very much the @apresj20 association for their support. Ontop of their enormous work to represent #apresJ20 long-haulers with physicians, researchers, politicians & media, they have addressed the problem of post-exertional malaise & the need to inform about pacing. 🙏

9/ Faced with the urgency that ME represents, we await rapid feedback from the health authorities, incl. @olivierveran @MinSoliSante @HAS_sante, & MPs and senators. @MIRALLESMP @TrastourIsnart @KhattabiF @SenateurMilon @MESNIERThomas.

We will recontact them as much as needed.

10/ Preparing this action took 3 weeks of collaborative work and... many mails! A massive thanks to every advocate at #MillionsMissing France who got involved. This is only the beginning.

#pwME #MECFS #MyalgicE #StopRestPace #LongCovid

(only half the envelopes are shown ⬇️)

All our thanks to @MEActNet EMEC @actionforme IAFME @MEAssociation @PlzSolveCFS @OpenMedF @4Workwell @PhysiosForME @MMissingGermany @dg_mecfs @LVStiftung @MECentraal & many ME advocates who supported us @davidtuller1 @MTackCVS @Huisarts_Vink @Healthy_Control @wilshica @mhornig ++

Thanks to @LBatemanMD @BrodinPetter @JCastro_Marrero @ClagueNjc36 @sunsopeningband @JimFaas @keithgeraghty @DrMaureenHanson @Hilliard_Nat @DoctorwithME @CenterRes @ngklimas @karenphysiocouk @FLilledalen @MelindaWMaxwell @OxMEDiscovery @RDPhair @CGATist @RheaSnounou @EricTopol

.@MicrobiomDigest @BhupeshPrusty

.@mecfsbiobank

.@jan_choutka