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Gabe gives us a quick summary of the tasks completed and the expectations for tomorrow’s procedures.
#spoonies #healthycontrol #researchstudy #healthycontrols #CFSAC #volunteers #MECFS #MEresearch #pwME #MEawareness #BiomedicalResearch
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Email received today - #CFSAC CHARTER HAS NOT BEEN RENEWED:
Quote: "The charter for the Chronic Fatigue Syndrome Advisory Committee (CFSAC), a discretionary (not Congressionally mandated) entity, expired on September 5, 2018."
#PwME4ICC #PwME #Myalgicenc
meadvocacy.org/testifying_at_
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twitter.com/turnitup4me/st
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During the 3rd Day of the intramural study, Gabe underwent a Lumbar Puncture. In this video, he recalls his experience. #researchstudy #healthycontrols #CFSAC #volunteers #MEresearch #MEawareness
#BiomedicalResearch
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"One cannot claim to represent the entire community when, in effect, not only are they advocating for and promoting recommendations for faulty criteria but, they are aiding in the full burial of the distinct disease ME.relatingtome.net/2018/05/17/bew
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I just completed my presentation on #CFSAC webinar meeting, gave an overview and a bit of update on our #MECFS collaborative research center, our scientific rationale and experimental approaches. Great questions from the attendees! Hope it was useful. hhs.gov/ash/advisory-c
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Hey! hhsgov and #SecretaryAzar Millions still painfully disabled with no FDA treatments and you think NOW is the time to disband #CFSAC ??? GA people with #myalgicencephalomyelitis beg to…
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#HHS leadership says: #CFSAC has accomplished its duties and is no longer needed.
We say: ME is taught in just 6% of American medical schools.
#MissionNotAccomplishedHHS facebook.com/MEActionTN/pos
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From: Marc-Alexander Fluks
Yesterday, the U.S. Department of Health and Human Services deleted its #CFSAC website.
Go to: hhs.gov/ash/advisory-c
Internet archive, January 28, 2019: web.archive.org/web/2019012820
#MEcfs #CFS #MyalgicE #ChronicFatigueSyndrome
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I’ve been severely ill for 21 years with ME. Bedridden in a 14X15 room. The work of CFSAC is NOT THROUGH. We need your urgency and funding for ME research now! #MissionNotAccomplishedHHS #CFSAC #EndMECFS
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One of the most frustrating things! NIH and CDC themselves defined it to be heterogenous in 94.
Then at every #CFSAC or inquiry they throw up their hands and say: "No $, Oh woe, It's too heterogeneous"
But #MyalgicEncephalomyelitis isn't IF a good definition used: eg ICC, CCC.
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Troubles of Chronic Fatigue Syndrome Start With Defining It.
March 2011 by @davidtuller1
nyti.ms/2MRmEIA
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#HHS says that #CFSAC has accomplished its duties.
We say that there are NO FDA-approved treatments for #ME.
#MissionNotAccomplishedHHS
@SecAzar @HHSGov
Do you hear us, HHS? Meet with us. Do better. Do right by us.
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#CFSAC Charter Not Renewed Patients can stop worsening their health with trips to D.C., to just vent...HHS did not listen, anyway. facebook.com/kathryn.stephe
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#pwme Advocates 4 #MyalgicE put on mute yesterday in phonecall. This call was supposed to replace #CFSAC meetings. Indeed it did : the ignoring & dismissal of knowledgeable (& no-conflict-of-interest) #MyalgicEncephalomyelitis patients & advocates continues. Disgraceful.
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Dr. Unger announced CFS Advisory Committee (#CFSAC) was abolished but not to worry, @CDCgov would increase the number of their SEC calls. So, goodbye advisory committee discussion + recommendations - hello dead phone line. CDC?...Dr. Unger?...anybody?...hello? 
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As long as we’re still sick and there’s no diagnostic biomarker or FDA approved treatment for #ME your mission is not accomplished!#MissionNotAccomplishedHHS #CFSAC
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One year ago the Chronic Fatigue Syndrome Advisory Committee was eliminated without notice. claimed that the #CFSAC mission had been accomplished… I beg to differ. #millionsmissing #MEAction
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How to Protest HHS with #MEAction in DC and Virtually Friday the 9/14. Due to sudden end to #cfsac meaction.net/2018/09/07/how
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