Guest blog by Amy McLaughlin describing her decades long experience with #myalgicencephalomyelitis.
Amy eloquently describes her frustrations and disappointments with the medical establishment, and experiences shared by many in the ME community.
https://meadvocacy.org/the_forever_flu#pwME
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
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! https://meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study…
ME International Consensus Primer (ICP) is available in several languages. Spanish recently added.
From page IV of the ICP:
"...the primer will bring forward movement in enhancing clarity and consistency of diagnoses and treatment of ME internationally."
https://me-international.org/primerinfo-sheets.html…
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.
Rapid Response from Peter Kemp to:
NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders
BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2647… (Published 29 October 2021)
https://bmj.com/content/375/bmj.n2647/rr-1…
Here we go again. When cause of disease eludes, revert to psychological explanations, as if science can go no further. Trend began w/ cancer (Bernie Siegel), then AIDS + ME. On upswing again. Anyone still claiming AIDS caused by stress?
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!📢💻
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"
https://dxrevisionwatch.files.wordpress.com/2021/11/icd10cm-september-2021-comment-on-postviral-and-related-fatigue-syndromes.pdf…
CLARITY FOR ALL
Read our latest blog discussing concerns about proposal to create a completely new ICD code for the U.S. that would affect all #MyalgicE patients.
This proposal combines ME, ME/CFS, #CFS & includes #SEID label in a new G93.32 code.
https://me-international.org/blogs/clarity-for-all…
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.
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 https://virology.ws/2020/10/08/trial-by-error-nice-draft-guidance-coming-soon/… & https://journals.sagepub.com/doi/full/10.1177/2055102919838907…
https://frontiersin.org/articles/10.3389/fneur.2020.01025/full… This is so incredibly stupid. Precisely what I would expect from Nath and Walitt. Evaluating PEM? Nath should know better. ME is an infectious disease of the brain. Figure it out, dummies. Forty years on--and NIH offers up this garbage.
Reminder to ppl w #MyalgicEncephalomyelitis#MyalgicE There are some excellent patient orgs, run by volunteers, w decades of personal experience w M.E., no conflicts of interest, no ambiguity re disease for which they advocate. Ex : MEAdvocacy dot org and http://me-international.org
It’s #SevereME Awarenesss week. 1/4 of #pwME are severe, yet ME remains the lowest funded disease in proportion to disease burden. I froze a blue rose to symbolize the abrupt halt and shattering of ones life when you develop this disease. #MECFS#meawarenesshour#severeMEweek
"ME is relentless & unforgiving. It's a devastating illness that steals lives. But the most frustrating part about this debilitating condition is not being believed, & not having a voice. Please help amplify our voices, so the world can hear our cries." #MEawarenessHour#SevereME
#SevereME is like being allergic to life. Simply existing feels too overwhelming. I went a year without leaving my bed once. Didn’t wash my hair for over six months. Couldn’t move, couldn’t feed myself, couldn’t allow myself to feel anything. It is absolute hell. #MEAwarenesshour
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
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 https://bit.ly/3a1ZtY9 & https://bit.ly/3in1eSJ