Top Tweets for #MEActionDoesNotRepresentME
@rebshloima @TurnItUp4ME @Christi194513 @MEActNet @NIH @CDCgov Since when has @MEAction become NIH’s spokespeople? Why has NIH not notified #pwME about this “focus group”? Why have other orgs not been notified? #MonopolyMuch? #MEActionDoesNotRepresentME
ME Action is totally disingenuous!
#meactiondoesnotrepresentME
@AnnabelSchleut2 Agree. But MEAction HAS taken a stance on ICD-10-CM by their "education" program teaching doctors 2 diagnose w/ SEID criteria (even tho they call it ME/CFS). Doctors will earn credit 4 their med ed course. Then those doctors will use the SEID diagnostic code. Unless we stop it!📢
They need to rename themselves to Anything But ME Advocacy. 🤬🤢😡
#meactiondoesnotrepresentME
@TurnItUp4ME MEAction Network have officially today said they will not be commenting. Such an important issue yet they are not going to comment...
@MECFSNews @MarilynGavrano5 Obviously a case of ME misdiagnosis. I doubt if the diagnosing physician used the ICC. We will see a lot more of this with SEID criteria the CDC will be using to train doctors.
#meactiondoesnotrepresentME
#jenbreadoesnotrepresentME
#pwme
I am not sure if I am more mad or sad at those who have ME and are blindly following Jen Brea and ME Action. Probably more mad because they are dragging the rest of us over the same cliff.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
"So, MEAction would not sign nor endorse ME-ICC petition, yet they gladly created a curriculum for an accredited continuing education course for medical professionals using IOM/SEID!" - https://t.co/aDcPbUWfB3
What MEAction is proposing to do is deceitful and unconscionable. Doctors need to be educated how to make the diagnosis of ME, rather than dumping people with ME into the wastebasket diagnosis SEID. Doctor education needs to be based on the ICC and IC Primer, not the IOM report.
@MarilynGavrano5 @Wee_Bawbee @AliceOutThere @TinyWriterLaura @AnneSpaceCoast @stevieboebi @MEflattened @jenbrea @GabbyKlein1 @velogubbed @jemb123 Correct, Marilyn. MEAction is "educating" med pros w/ SEID criteria but calling the disease ME. And SEID is a vague definition - it is not ME as defined by our experts' ICC. @MEActNet r playing a dangerous word game. And it will adversely effect millions of patient's lives. 🌏
Like a putrid bacteria it spreads and festers.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
Brea caught again lying. Really, her claims are so bizarre that it seems that she can not judge what is real or not.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
#pwme
@jenbrea @LivingSmallCA @MEActNet @meactionscot No - that’s false and @jenbrea is attempting to deceive the community. The material prepared by @MEActNet for the med Ed course uses only the SEID criteria!! At the end they link to other defs but they r only teaching the IOM criteria. #StopLying
@CatEye0611 @TurnItUp4ME @JohnforCFS @GabbyKlein1 @docsimsim @Wee_Bawbee @NeuroMEwarrrior @CDCgov @MEActNet @MeAction @jenbrea This whole thing is a labyrinth of non-sequiturs & illogic. First IOM wants to redefine ME/CFS. Then they say it has no neuroinflammation and it can't be called ME. Then they rename ME/CFS SEID, which means ME/CFS was never ME to begin with. Then the orgs come & say SEID is ME.
Not only fairer but truthful to ME Action's history with regards to promoting SEID at what can only be seen as part of a plan to disappear ME from the medical lexicon. One has to ask, whose interests is ME Action promoting and protecting?
#pwME
#meactiondoesnotrepresentME
@TurnItUp4ME @JohnforCFS @GabbyKlein1 @docsimsim @Wee_Bawbee @NeuroMEwarrrior @CDCgov @MEActNet @MeAction @jenbrea Wouldn’t it be fairer to rename ‘MEaction’ ‘SEIDaction’ if this truly is being planned @MEActNet ?
How take action & educate doctors on behalf of #pwme when reviews, researchers, pts ... explicitely support #ICC which is totally NOT the same as SEID?
#SEIDisnotME
#PwME4ICC
@JohnforCFS @GabbyKlein1 @docsimsim @Wee_Bawbee @NeuroMEwarrrior @CatEye0611 @CDCgov @MEActNet @MeAction @jenbrea Yes, Dr. Whiting. The MEAction tour of 10 cities begins November 15th. They will "educate" med pros with HHS/IOM's SEID criteria. This misinformation will erode & disappear the neuroimmune disease #MyalgicEncephalomyelitis. #pwME4ICC
@CatEye0611 @TurnItUp4ME @JohnforCFS @docsimsim @Wee_Bawbee @NeuroMEwarrrior @CDCgov @MEActNet @MeAction @jenbrea How does @MEActNet explain these two contradictory statements. They state they do not support SEID, yet the criteria they r using to teach med profs to diagnose the disease is the SEID criteria!
Advocacy orgs for M.E. #MyalgicEncephalomyelitis #MyalgicE especially newer orgs, shd listen to & cooperate w orgs that hv decades of experience. Newer orgs: be honest about your history of dismissing valid info & concerns re : disease criteria, patients' preferences, etc.. #pwme
In M.E. #MyalgicEncephalomyelitis advocacy, as elsewhere, those who don't learn from history are doomed to repeat it. Very ill #pwme can't afford to WAIT while newer advocacy orgs dismiss/ignore valid concerns of experienced advocates, allowing M.E. to keep disappearing. #pwme
@velogubbed @TurnItUp4ME @jenbrea @MEwarrior_au @BettineM @CarolDa42444571 @unrestfilm There have been multiple communications with @jenbrea & @MEActNet but they repeatedly ignore the voice of independent advocates and the org MEAdvocacy who advocate for ME-ICC. https://t.co/nefbWttaHZ
This has nothing to do with ME despite their propaganda. It is 'education' designed to bury PWME into the tomb they call SEID.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
Physicians, Nurses, Pharmacists, Social workers can receive 2 free CME credits by learning more about M.E., Myalgic Encephalomyelitis/CFS that is at epidemic levels in US, more common than Zika, Ebola, West Nile, Polio and ALS comb…https://t.co/tabAiB4h9V https://t.co/gCEalwKG4X
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