AllisonHaynesIsOnBluesky

Severe #MyalgicEncephalomyelitis since 1989. Advocate for #MyalgicE per #MEICC, Ramsay/Hyde. See and/or #pwME.

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MyalgicEncephalomyelitis #Encéphalomyélitemyalgique #pwME #EncefalomielitisMialgica #MyalgicE
Latest from Colleen Steckel : excellent and relevant as always. Please read and share. Colleen is an absolute treasure to the M.E. community.

News: 2026 Feb 28 https://t.co/146nVpKQjo

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MyalgicEncephalomyelitis #Encéphalomyélitemyalgique #EncefalomielitisMialgica #pwME #MyalgicE
Excellent info. Dx codes can benefit or harm us.
Not in U.S.? Read anyway - many countries follow U.S. policy.
International Classification of Diseases Codes https://t.co/D4lkkuRMvj

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MyalgicEncephalomyelitis #MyalgicE #pwME #Encéphalomyélitemyalgique #EncefalomielitisMialgicaPlease Read Hillary Johnson's "The Science Bros and Violence Towards Women" Part 2: an absolute must-read for men, women, the M.E. community + the general public
https://t.co/0RI9ipfvvO

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

📷
#MyalgicEncephaloMyelitis #pwME #MyalgicE #MECFS #EncéphalomyéliteMyalgique #EncefalomielitisMialgica Important short read by trusted longtime advocate Colleen, re long-term side-effects. Stay informed re Rx's.

Fluoroquinolone antibiotics poisoning https://t.co/aZKRsFbRkX

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MyalgicEncephalomyelitis #Encéphalomyélitemyalgique #EncefalomielitisMialgica #MyalgicE #pwME
Another absolute *must-read* by Hillary Johnson: "The Science Bros and Violence Against Women", Part One of Two. History of misogyny and M.E.. Please share link.
https://t.co/0RI9ipfvvO

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MyalgicEncephalomyelitis #EncefalomielitisMialgica #EncéphalomyéliteMyalgique Latest #MyalgicE news from around the world including important info for U.S. residents, by
@colleensteckel.bsky.social
Highly recommended. #pwME

News: 2026 Jan 14 https://t.co/DPSetSeqia

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#pwME #MyalgicEncephalomyelitis Colleen discusses a new study. Low Blood Volume: critical M.E. symptom, studied for decades, but needs more attention. See also Hillary Johnson's Substack on this.

New Year - 2026 https://t.co/lm6lq7drg4

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

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#PwME Very wise words about #MyalgicE #MyalgicEncephalomyelitis and the holiday season. Take care and be cautious, all of you. Slow and steady. Thank-you, Colleen Steckel.

Holiday Greetings 2025 https://t.co/Hx8A6l2TiU

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MyalgicEncephalomyelitis #pwME
#Encéphalomyélitemyalgique
#EncefalomielitisMialgica
Latest Hillary Johnson: fascinating story of interviewing hostile, lying, frustrating bureaucrats who were supposed to be investigating M.E. outbreaks. TY Hillary.
Read at https://t.co/1xzg7lSBAf

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#pwME #MyalgicEncephalomyelitis #MyalgicE
Latest from Colleen Steckel: list of research, memorial for Dr. Byron Hyde, and more clarification about M.E. vs "ME/CFS". Thank-you, Colleen.
#Encéphalomyélitemyalgique #EncefalomielitisMialgica

News: 2025 Dec 3 https://t.co/TCoRBY4hI4

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MyalgicEncephalomyelitis #pwME #EncefalomielitisMialgica
Latest news for people in the U.S., regarding healthcare policies. An important and helpful read for anyone in the #MyalgicE or disability community. Thank-you Colleen Steckel.

News: 2025 Nov 15 https://t.co/Gl4fPnoOaW

[Hillary Johnson Author, Journalist @oslersweb]

I loved Mindy Kitei's new book, "Shots in the Dark," an unsparing look at ME, "long vax," and long Covid--and medicine's failure to address them. Kitei surveys the literature, chronicles NIH + CDC's dismal response and boldly separates facts from theories
https://t.co/Z1hoJzrr23

[Maureen Hanson @DrMaureenHanson]

Glad to see Discover article about the Cornell's recent paper on cell-free RNA, but dismayed at yet another "tired person" image. Unfortunate that journalists who learn about ME/CFS aren't the ones who choose headlines and photos. https://t.co/XsSGEd065V

[Hillary Johnson Author, Journalist @oslersweb]

Sudden onset myalgic encephalomyelitis is a medical emergency. Hospitalization + IV antivirals, in lieu of so-far absent targeted therapy, may be opportunity to avoid life-long disability. Doctors need training to identify this disease when they see it. Do something, don't wait

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#MEAwarenessDay For reliable #MyalgicE info, i recommend Hillary Johnson, Colleen Steckel, Jeannette Burmeister, Eileen Holderman, Joan McParland: some of the best patient/advocates. Not attention-seekers or opportunists. No agenda, no ego. Just want to help patients + proper Dx.

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

May 12th is #MEAwarenessDay #MyalgicEncephalomyelitis #pwME
#EncefalomielitisMialgica #EncéphalomyéliteMyalgique

[Jeannette Burmeister @JKBurmeister]

I wrote an in-depth analysis of the history of the NIH intramural ME study and how the outcome--a psych label for ME--was predetermined by NIH's putting extremist ME denier Walitt in charge.

https://t.co/q1QbbUbPZF

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#pwME Informative #MyalgicE news from longtime patient/advocate Colleen Steckel, + recommends Hillary Johnson's Low Blood Volume Part 2. Thanks to you both.
#MyalgicEncephalomyelitis
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique

News: 2025 Apr 11 https://t.co/vtKuJ3U7zQ

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

Much-anticipated Part 2 of Low Blood Volume in #MyalgicE. A crucial issue, ignored, not funded enough, that could provide Dx tests for us, as exist for MS & Sickle Cell Anemia, whose patients share some blood cell deformation issues with M.E. A must-read.
https://t.co/0RI9ipfvvO

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#pwME Nutrition & supplements are important in managing #MyalgicE but can be complicated. FolicAcid/Folate issues explained
#MyalgicEncephalomyelitis
#EncefalomielitisMialgica
#EncéphalomyéliteMyalgique
Folic Acid, Folate, Folinic Acid, Methylfolate https://t.co/XqWHCLkrTw

[AllisonHaynesIsOnBluesky @AllisonDHaynes]

#pwME Newest M.E. Global Chronicle: #MyalgicE news & info from contributors all around the world. #MyalgicEncephalomyelitis #EncefalomielitisMialgica #EncéphalomyéliteMyalgique

https://t.co/K4GG7isTzP