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 ⬇️)

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Millions Missing France

Millions Missing France Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @MillionsMissgFr

7 Dec
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

👉 millionsmissing.fr/article11/lett…

#apresJ20
2/ Parmi les 92 destinataires de cette lettre : @MinSoliSante (cabinet @olivierveran), @AlerteSanitaire, @SantePubliqueFr, @HAS_sante, @hcsp_fr

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
Read 10 tweets
6 Dec
#DocTocToc Suivez-vous des patients Covid long ?

Certains ont une exacerbation de leurs symptômes après des activités, même légères, souvent à +12-48h

⚠️ Réadaptation à l’effort : provoque rechutes & aggravation long terme ⤵️

👉 Prioriser le ménagement des activités avec repos
+ d'explications sur les dangers de la réadaptation à l'effort en présence de rechutes post-effort : meassociation.org.uk/wp-content/upl…

@PhysiosForME met à disposition des ressources pour aider ces patients Covid long : physiosforme.com/covid-19

et @AssociationSfc : asso-sfc.org/documents/an-4…
Read 4 tweets
11 Jun
#aprèsJ20 @apresj20 #aprèsJ60 #aprèsJ90 #aprèsJ120

Le syndrome de fatigue chronique, ou encéphalomyélite myalgique (EM), séquelle possible du #COVID19 ?

⚠️ Beaucoup d'infos fausses & dangereuses circulent

Nous sommes une asso de patients d'EM. On vous explique ce que c'est 👇
➡️ Comment apparaît l'EM / SFC ?

Dans ~70% des cas, l'EM suit une infection virale. Elle débute d'abord par un syndrome de fatigue post-virale (SFPV).

Si le SFPV persiste *6+ mois*, un diagnostic d'EM s'envisage. Pas avant : parfois, il faut "juste" du temps pour s'en remettre.
➡️ Symptômes de l'EM (1)

Un épuisement post-infectieux invalidant ?

Oui, mais *pas que* : LE symptôme qui définit l'EM, c'est le malaise post-effort (MPE).

Il vient 12 à 48h, voire 72h, après une activité physique ou cognitive que vous pouviez faire sans problème auparavant.
Read 20 tweets
30 May
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.

@ME_Rogaland
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.
Read 8 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!