THREAD
The #LongCovid community can learn a lot from those suffering with #MECFS. We should welcome their attempts to reach out- it’s in our interest to collaborate. And if #MECFS patients end up getting the recognition & care they deserve due to #LongCovid research- good I say!
The #LongCovid community can learn a lot from those suffering with #MECFS. We should welcome their attempts to reach out- it’s in our interest to collaborate. And if #MECFS patients end up getting the recognition & care they deserve due to #LongCovid research- good I say!
I’m not saying the two conditions are identical. LC is heterogenous- however there is a subgroup of LC sufferers with fatigue who exhibit PEM, the cardinal feature of ME. Both conditions can be associated with #MCAS #POTS sensory overload, stimulus hypersensitivity & severe pain
ME suffers have been stigmatised, ignored & abused by the medical profession, media & wider public. The poorly conducted, discredited #PACE trial recommended Graded Exercise Therapy (GET) & CBT- this has harmed and disabled countless sufferers by its inclusion in ME guidelines.
@NICEComms has removed GET & CBT from its upcoming ME guideline revision. Proponents of CBT/GET are now going to look to the LC community to trial these therapies on us. The award of £1m to the CLoCK study in #LongCovidKids is concerning. hra.nhs.uk/planning-and-i…
If you are a patient with fatigue & clear PEM, please do not accept GET. If you are a health professional, please do not advise GET to this patient group. It is ineffective, dangerous & can be fatal me-pedia.org/wiki/Brynmor_J…
@TheLancet needs to re-evaluate & withdraw the #PACE study. Meanwhile, LC patients & HCPs can learn a lot from patients & professionals dealing with ME. This is a brilliant series of videos about #ME & critiques PACE in detail trigger warning- distressing youtube.com/c/BrokenBattery
I am extremely grateful to friends, clinicians & patients living & dealing with #ME for increasing my knowledge of this devastating neurological condition. The medical profession owes you an apology & damages. This is a scandal on par with MMR/Wakefield
@doctorswithme @PhysiosForME @bendymarsh @gezmedinger @DRTomlinsonEP @ptsafetylearn @LongCovidOT @LongCOVIDPhysio @LongCovidSOS @DrRajaMurugesan @BinitaKane @shaun_qureshi @long_covid @MEAssociation @MEActNet @bcdelaney1 @keithgeraghty @PTOT4MECFS @MECFSNews @LongCovidKids
I should have credited @ABrokenBattery for the excellent professionally done videos.
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