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MEadvocacy.org
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A project of May12.org - Recognition, Definition, & Research for Myalgic Encephalomyelitis #MyalgicE #MEICC #SevereME #PwME #MEadvocacy #PwME4ICC
MEadvocacy.orgJoined April 2015

MEadvocacy.org’s Tweets

US & influence their advocacy partners around the globe with their ongoing work holding US health agency accountable. To do this successfully requires a strategic advocacy plan & a specialised set of skills & expertise of Myalgic Encephalomyelitis #ME
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Replying to @Dan_Wyke
MEAdvocacy and I wrote a meticulous, investigative blog exposing all the flaws of the NIH (@NIH) Intramural ME/CFS Study and made recommendations to correct the study. We hope everyone reads it! 📢meadvocacy.org/nih_sidesteps_
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Good response explaining why NICE downgraded the assertion Graded Exercise Therapy (GET) is helpful treatment for #pwME. GET is not safe! Drs now need guidance in #MEICPrimer to understand biological damage seen in #myalgice. It also offers dx w/lab tests to guide treatment.
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Rapid Response from Peter Kemp to: NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders BMJ 2021; 375 doi: doi.org/10.1136/bmj.n2 (Published 29 October 2021) bmj.com/content/375/bm
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Thank you, Suzy Chapman, for your leadership & expertise re: US ICD-10-CM issues & issues relating to disease coding. I endorse your public comment & join many orgs + independent advocates in opposing proposals by the 7 US orgs and by the NCHS. Public comments are due today!📢💻
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Replying to @doctormom63
In September, 7 US orgs submitted for radical changes to the ICD-10-CM G93.3 terms. NCHS presented an alternative set of proposals for G93.3 and R53.82. 7 reasons why I can't support either proposal. Feedback on "Postviral and Related Fatigue Syndromes" dxrevisionwatch.files.wordpress.com/2021/11/icd10c
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Hugely concerning. It has been worrying from the start that the ME/CFS NICE guidelines committee members includes bps proponents of the discredited deconditioning model of ME.
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This, now deleted, tweet from yesterday is concerning, coming from a member of the @NICEComms Guideline Committee for #ME. CBT does *not* work for ME, as patient surveys show & studies claiming ‘evidence’ don’t hold up to scrutiny virology.ws/2020/10/08/tri & journals.sagepub.com/doi/full/10.11
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Sophia nam het moment dat men haar met geweld van haar bed lichtte op. Jaren later hoorde een NLse ME-patiënte dat en zij beschrijft wat het met haar deed en doet
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met het oog op severe ME-dag (8 augustus, haar geboortedag) terug in de tijd naar het moment dat Sophia Mirza, bedlegerig in het donker door #MyalgischeEncefalomyelitis, met geweld naar een psych.inrichting werd gebracht bit.ly/3a1ZtY9 & bit.ly/3in1eSJ
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