Nyheter om ME (myalgisk encefalomyelitt) ~ Aktuelt om forskning med mer. Styres av @catwesterby (inkluder ved RT eller spm). Autopostinger fra FB-side.
If you saw the 20 best ME/CFS doctors in the world, you’d get 20 entirely different treatment plans. How fucked up is that? We deserve better care. In the macro sense. It’s not the doctor’s faults (the good ones), there’s no standardized treatment plans for ME/CFS and patient’s symptoms are all over the place, so doctors can only go by their specific training and perspective and no doctor can know all of medicine. But even among my doctors, and I have better access than a lot of patients, I feel like I can predict what each of them will say based on their perspective. Seeing a ME/CFS patient is a bit like a Rorschach test for doctors.
We really deserve a world that invests in ME/CFS and Long Covid and universally cares for all of us.
#mecfs #longcovid
Some critics have cartooned #MECFS as alternate science. Did you know that there have been more than 6,000 papers on ME/CFS published in peer reviewed journals and that one current and one previous member of the OMF Scientific Advisory Board are Nobel laureates? #MEAwarenessHour
Jeg har en kronikk ute på @NRKno, skrevet med @ArSoraas og @raubreywhite. Vi ønsker å spre oppdatert faktakunnskap om senvirkninger etter covid-19, og hva dette kan bety for samfunnet. https://t.co/QKd4AUxpoL
Jeg ber deg lese, @jcvestre . Det er ikke bedre i Norge- og det fortsetter å skje…på din vakt. Kan DU bli helseministeren som gjør en forskjell for ME-syke? Jeg håper💙
Kan det være en mulig sammenheng mellom ordskiftet rundt uføre og syke,
og at barn bruker "fattig" som skjellsord i skolegården? Hvis nok folk snakker negativt om en gruppe,
er det vel ikke umulig at kids plukker det opp.
https://t.co/q2rQVWYgrU
Å redusere Vogt og Fors' teori til "biopsykososial" i ME dekker over deres sjokkerende syn om at sykdommen skyldes hjernens misforståelser. En slik forenkling skjuler deres fulle, kontroversielle hypotese. Kritisk og nøyaktig journalistikk må tørre å utfordre og avdekke hele 1/2
Henrik Vogt sier til Dagbladet i dag at «det helt klart er håp om bedring ved CFS/ME». Han viser bl.a. til «mange pasienthistorier fra pasientgruppa Recovery Norge». RN er en Lightning Process-organisasjon. Suksessraten ved ME er latterlig lav: https://t.co/BeHGjoivQb
Et kraftfullt men betimelig utbrudd fra Putrino. Stadig flere leger, forskere og andre som de syke burde kunne sette sin lit til, ser heldigvis det samme, og vi håper denne nonchalante holdningen er på vei ut.
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• Ad hominem: Cartooning patients and advocates
• Argument of pity: Repeating claims of harassment
• Appeal to authority: Presenting themselves as leading experts
None of these pseudo-arguments relieves them of the responsibility to present evidence for their own claims.
#MECFS advocates should be aware that BPS proponents are using rhetorical tricks to shift the burden of proof in the debate:
• Anchoring: Repeating claims in public despite a lack of evidence
• Argument of ignorance: Pointing to lack of known pathology/diagnostic marker →
#MECFS is classified as mild, moderate, severe, or very severe, but don’t be fooled by the terminology. Mild #MECFS is also debilitating. Even if those affected often can work part time, their lives are restricted and the burden of symptoms difficult to bear. #MEAwarenessHour
Due to the positive reaction to our open letter to Cochrane calling on them to withdraw their 2019 review of exercise therapy for 'CFS', we have set up this petition to make it as easy as possible to add your name in support.
Please sign and share.
https://t.co/f38IHXDzP5