AMMES @AmmesAdmin
The American ME and CFS Society is a national non-profit serving the needs of patients and caregivers through support, advocacy, and education. #MECFS ammes.org Joined December 2016-
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Among ME/CFS participants, 97% had at least one autonomic symptom. Those with symptoms in the OI, gastrointestinal, and pupillomotor domains had significantly higher illness severity than those without these symptoms. mdpi.com/2077-0383/14/1…
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The Minnesota Home Help Navigation Program, created by #MEAction & funded by a grant from the Minnesota Department of Health’s Long COVID Program, provides support applying for in-home help through Minnesota's Medicaid program. Free for Minnesotans. mailchi.mp/meaction/offic…
BHC August Event Recaps. August 12: Managing Physical Symptoms. batemanhornecenter.org/wp-content/upl… August 19: Moving from Humiliation and Shame to Humility and Pride. batemanhornecenter.org/wp-content/upl… August 21: The Restful Library-Remote Resources for When Energy is Limited. batemanhornecenter.org/wp-content/upl…
Microfluidic assessment of PO2-regulated RBC capillary velocity in ME/CFS. Key points: 1. PO2-regulated RBC capillary velocity is impaired in ME/CFS. 2. RBC velocity response to PO2 is a unique characteristic in ME/CFS. sciencedirect.com/science/articl…
New Publications: OMF CRCs at Stanford and Montreal. ns1.omf.ngo/stanford-montr…
Bateman Horne Center: September Outreach Announcements. Sept 9 – Moving from Humilitation and Shame to Humility and Pride; Sept 16 – Creating Purpose & Meaning; Sept 18 – Peer Perspectives: Share Your Favorite Things! Register here: batemanhornecenter.org/events/
Youtube: What Spike Proteins Reveal About Long COVID and MECFS. youtube.com/watch?v=Gifd75…
AMMES retweeted
Great to see another research team (this time in Arizona, USA) doing iCPET research: Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation physoc.onlinelibrary.wiley.com/doi/10.14814/p… #MEcfs #LongCovid
Killer cell immunoglobulin-like receptor (KIR) alleles suggested to be associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) sciencedirect.com/science/articl…
The AMMES September newsletter is out! Latest news and research, advocacy efforts, and more! (And it's free! Sign up on the AMMES website: ammes.org.) eocampaign1.com/web-version?p=…
Effects of recumbent isometric yoga on the orthostatic cardiovascular response of patients with myalgic encephalomyelitis/chronic fatigue syndrome. bpsmedicine.biomedcentral.com/articles/10.11…
A Neuroinflammation Buster? Jarred Younger on tFUS Stimulation for ME/CFS, Fibromyalgia and long COVID. healthrising.org/blog/2025/06/2…
AMMES retweeted
Sat. Sept. 13th: Register for the FREE #LongCOVID CME Conf. “Supporting Primary Care Providers in Management & Treatment," & virtual LC community event hosted by @KeckMedicineUSC and @UCLAHealth. Scan the QR codes below for more info.
Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS). eurekalert.org/news-releases/…
Surprise! The Senate Bill Includes “Some of the Strongest Support for ME/CFS in Years”: Plus, Taking it to the House. healthrising.org/blog/2025/08/3…
Tuesday, Sept 9: Online Support Group from Bateman Horne Center. Topic: The Chronic Illness Experience: Creating Purpose and Meaning. batemanhornecenter.zoom.us/meeting/regist…
19-minute sympathetic podcast associated with a national Irish radio station Newstalk discussing 2 pieces of recent biomedical ME/CFS research. newstalk.com/news/luke-onei…
Trial By Error: Three Blogs–Julie Rehmeyer on Beth Mazur’s Death; Whitney Dafoe on Real Life; Elke Hausmann on Exercise and “The Salt Path” virology.ws/2025/08/28/tri…
WEBINAR: Targeting Autophagy: A Clinical Trial of Low-Dose Rapamycin for ME/CFS, Long COVID, and IACCIs. Thursday, September 4 @ 3 pm PT/ 6 pm ET. us02web.zoom.us/webinar/regist…
VIDEO: ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies. youtube.com/watch?v=DsOAq6…
Janet Dafoe @JanetDafoe
16K Followers 225 Following Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
ME/CFS News @MECFSNews
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Tom Kindlon @TomKindlon
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Christoph Ströck @cstroeckw
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Anil van der Zee © @AnilvanderZee
10K Followers 865 Following Former professional ballet dancer | Bed-bound M.E. patient | Using ✖️ to raise awareness for #MyalgicE | #IACI #art2cureME #pwme #millionsmissing
Dan Wyke 🦠➡️�... @Dan_Wyke
13K Followers 5K Following M.E. inactivist; person-centred counsellor (currently not practicing); recovering poet (Rack & Waterloo Press)
Katy B @KatyBruce108
6K Followers 6K Following Myalgic Encephalomyelitis ME + POTS 39 yrs Donor to @mecfsbiobank for 10 years & @DecodeMEstudy Please watch https://t.co/pUUJO34e5k #pwME
Adam @ABrokenBattery
8K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
davidtuller @davidtuller1
11K Followers 2K Following Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
Rivka @Rivkatweets
4K Followers 2K Following Activist/Organizer: ChronicIllness, disability, ME/CFS, Lyme, LongCovid, women | Writer: WashPost, MarieClaire, NPR, Ms, Newsweek | Playwright: Many productions
Carole Bruce @CaroleBruce17
7K Followers 5K Following 💙Art, Nature, Books, Some Music. Severe ME 32 years. Daughter severe 38 years. Furious about treatment of ME. https://t.co/gEIrl86Wim
Wading through treacl... @kimisgubbed
3K Followers 3K Following Advocate & sharer of bio research for INFECTION ASSOCIATED CHRONIC DISEASES inc MECFS, Long COVID, MCAS, Dysautonomia, Vaccine injuries, FMS, Sjogrens & Lyme 🔬
Dr Keith Geraghty @keithgeraghty
9K Followers 507 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based researcher & chartered psychologist |@FBMH_UoM, @PrimaryCareMcr
Bea is Chronically Pe... @Be_Kinderr
10K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
PwME 4 bioMEdical res... @ValeBodi
4K Followers 3K Following Surviving #MyalgicE #AAG to tell the story, patient&advocate w/ a JD, into: MEdicine, Social justice & the Arts, Human neutrino/MEdical apolide/gnarled Pacer
Solve ME/CFS Initiati... @PlzSolveCFS
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#MEAction Network @MEActNet
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Tess Falor, Ph.D. | R... @tessfalor
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Richard Lewis @Z3R0Gravitas
1K Followers 2K Following Extropian sci/tech geek. Improving moderate #MEcfs, #non24-hour sleep. #ADHD-PI, #AuDHD, #dyslexic. "ZeroGravitas" in PC gaming. He/him. 42. Please correct me.
Rubel Ahmed @digitalsuccesit
228 Followers 3K Following I'm a Digital Marketer. I have experience of 2+ years as a Digital Marketer. I work with outsourcing bd institute.
Alex v.B. @Passion_of_Man
167 Followers 518 Following Geboren Juli 1989 Gestorben April 2022 seit dem Long Covid Me/CFS Zombie 💔💀✝️
Autisdick @hiimchiralkthx
1K Followers 2K Following Better the devil you know than the devil you don’t
LavHar @Lavi201731
1 Followers 62 Following
Mindy Stephens @MindySt19576212
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Dr. Jennifer Curtin @jencurtinmd
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Rachel ♿ 🌍 🇪�... @ChasingGlimmers
20K Followers 22K Following Northumbrian. Severe M.E Sufferer. SEND Mam. Disability Rights Advocate. Opinions Own. Writer @TheCanaryUK Blogger @wearecarers
Maryann Giordano @Jstmyoplikornot
2 Followers 103 Following
Melissa Hogan @NursingTheTruth
605 Followers 3K Following 🌟 RN navigating life with Long Covid | Passionate about politics & true crime 🕵️♀️. **NO DMs please**
Katharina Rost @KatharinaRost3
254 Followers 723 Following Hebamme. Professorin. Feministin. 2 Kinder., alleinerziehend, NichGenesenKids, privat hier
SumexTree Global Expo... @Sumextree
232 Followers 2K Following SUMeXTree Global Exports is a leading exporter of eco-friendly bags, specializing in Jute, Cotton, Canvas, and Paper bags. We cater to customers worldwide.
LuxyME💙 @LuxyME_
53 Followers 336 Following Myalgic Encephalomyelitis ❤️🩹 Encefalomielitis Miálgica ❤️🩹 #pwme #Anpe #Pots #HOPE 💚
Dr Nicola Clague-Bake... @ClagueNjc36
4K Followers 2K Following PT researcher/Senior Lect @LivUni co-founder @physiosforme | PhD | neuro rehab/ex physiology/fatigue/ME/Longcovid/EDI/all views my own she/her
LowCovid 🇪🇺 Kan... @falsel_net
2K Followers 943 Following Retired Drs. Med, MBA, 40+ years biomedical research-, development-, regulatory-, marketing-, business development-, strategy- and alliance management.
Greg Macpherson @gregmacpherson
443 Followers 745 Following Pharmacist, Author, SRW Laboratories and Pharmacy Direct Founder
Michael @_Mike_76_
371 Followers 1K Following Ich bin nicht überrascht, ich habs vorausgesagt 🤷🥸 @mike76.bsky.social
Horizons @alzheimers_news
791 Followers 5K Following Transforming NeuroImmune Disorders Through Innovation
Bas Koelewijn @BasKoelewijn
2K Followers 5K Following Disability research, advocacy & inclusive education. Overly invested in sports and the dog 🐶. Chronically ill but definitely not lesser than. He/Him.
SYSTEM.E FAILURE @systeme_failure
0 Followers 20 Following Conversations about ME/CFS and related conditions, with a focus on aetiology, research, and research funding.
💚🤍💜Hoardosau... @coccinellanovem
21K Followers 10K Following “If a woman cannot stand in a public space & say, without fear of consequences, that men cannot be women, then women have no rights at all.” Helen Joyce
Sunコロナ後遺症 @Sun1354557
331 Followers 746 Following long covid kids teenager コロナ後遺症の子供(中学生)のための情報収集アカウント。 一年以上の倦怠感、胃腸症状、頻脈、ブレインフォグ、頭痛、味覚障害、嗅覚障害あり。 都内国立病院等でコロナ後遺症治療中。 薬はssri。 病気の子供たちを集めて性暴力を行う「みのりの会」(希咲の会)被害相談窓口
Long COVID is a mass ... @lhaztknup
5K Followers 8K Following One of Millions Missing, had severe LC. Now its getting better. I want to help reaching attention f this TERRIBLE illness. No medical advice.
Chris “Groggy” Cr... @tiredchris2
31 Followers 207 Following
Joanne Tatum @jortatum
162 Followers 250 Following
G @GMG_ER
4 Followers 978 Following
Mary @LuLuPCloud
185 Followers 877 Following
sophia•of•the•C... @DSEDunn
3K Followers 7K Following ProfPsych practices: interpersonal neurobiology;rinzai zen. Bi WOMAN 💜🤍💚🏳️🌈🦕#Lupus #Vasculitis #Neuropathy #LongCovid @LeopardGizmo.bsky.social
Gian singh @Giansingh399319
114 Followers 2K Following
Heather Dwyer @HeatherJDwyer
0 Followers 314 Following
elly brosius @NovaSupport
991 Followers 5K Following @RemissionBiome R50 + @RenegadeRes volunteer. Disabling ME/CFS+ OI+Long Covid. 💖 physics, pets, mindfulness, metaphors, & medicinal gratitude. Am @CFSnova.
MarIna @Mar1_INA
22 Followers 260 Following
الدبلوماسي ... @MouradAlmansor
132 Followers 1K Following ماستر علوم سياسية و علاقات دوليةتخصص دراسات متوسطية و تقني سامي حماية البيئة والأمن الصناعي HSE
Nurse Florence @NFlorence83108
2 Followers 66 Following Nurse and caregiver | We must find a cure for ME/CFS. Until we do, we must treat every patient with the dignity, compassion, and care they deserve.
Brian Fog @useless_priest
8K Followers 5K Following Mild LC/ME Apr 2022 | ME, when triggered by SARS-CoV-2, is a subset of Long COVID | Repeated triggering of PEM leads to lowering of baseline | 🏳️🌈 | 🇮🇪
Dr Judy VaccinePLUS -... @JudyandHuahua
2K Followers 2K Following COVIDisairborne use AIRBORNE precautions! At least protect the HCWs- masks, ventilation, uptodate vaccinations , TTI, quarantine, & early Rx
brenda_archer 🇺�... @brenda_archer
2K Followers 7K Following Used to be in SL 🏳️🌈 𖤐 #ActuallyAutistic 62 she/they/he #NoTerfs Mastodon: @[email protected] @brenda-archer.bsky.social
savannahouhnana @savannahouhnana
491 Followers 772 Following tranny révolutionnaire, journaliste pour la section genre et sexualités @revpermanente @pain_et_roses
Laurence Badgley, M.D... @BadgleyLaurence
1K Followers 1K Following Yale Med School 1968; Army Flight Surgeon, Major; Orthodox & Alternative Med (since 1970); 200 threadreaders Twitter @badgleylaurence
Jay Azarow @jayazarow
0 Followers 1K Following
Carrie Anna McGinn @Carrie_McGinn
1K Followers 2K Following Infection-associated chronic illness advocate | MSc | #PatientPartner | She/Her | #MECFS #MyalgicEncephalomyelitis #POTS #LongCovid #CovidLongue #CovidLong
Noor @rayoflight1111
114 Followers 6K Following
Tahirih Walsh @TahirihWalsh
1K Followers 2K Following Singer, poet, environmentalist, lover of wild things. LC and ME/CFS since 2022. #saltingthevibes since 2020
Sharon Thornton @_SharonThornton
881 Followers 2K Following Here to read the news. Likes science, health, old buildings, crafty things, law and reform. Dip Accounting. Sews. Post viral chronic fatigue.
Janet Dafoe @JanetDafoe
16K Followers 225 Following Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Tom Kindlon @TomKindlon
15K Followers 622 Following With ME 36 years (31 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 28 yrs
Anil van der Zee © @AnilvanderZee
10K Followers 865 Following Former professional ballet dancer | Bed-bound M.E. patient | Using ✖️ to raise awareness for #MyalgicE | #IACI #art2cureME #pwme #millionsmissing
davidtuller @davidtuller1
11K Followers 2K Following Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
Dr Keith Geraghty @keithgeraghty
9K Followers 507 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based researcher & chartered psychologist |@FBMH_UoM, @PrimaryCareMcr
Michael VanElzakker @MBVanElzakker
10K Followers 268 Following Neuroscience researcher @MGHMartinos / @HarvardMed and @PolyBioRF, researching #MEcfs, #LongCOVID, & #PTSD. (all opinions are my own)
Solve ME/CFS Initiati... @PlzSolveCFS
12K Followers 4K Following Making ME/CFS, Long Covid & associated conditions widely understood, diagnosable, & treatable. #SolveME #MECFS #LongCovid Donate @ https://t.co/P6umwzCRA4
Open Medicine Foundat... @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
#MEAction Network @MEActNet
19K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Julie Rehmeyer @julierehmeyer
8K Followers 1K Following Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. NYT; WashPost; Discover; Slate; Stat News… She/her.
Cort Johnson @CortJohnson
11K Followers 1K Following Founder of Health Rising /Phoenix Rising - Chronic Fatigue Syndrome (ME/CFS)/Fibromyalgia/Long COVID journalist/blogger - ME/CFS/FM patient for 40 plus years
Hillary Johnson Autho... @oslersweb
4K Followers 956 Following Investigating ME for 39 years The Why "Indispensable" Reimagining Ruth "..has a raw power" Osler's Web "A relentless, meticulous, highly persuasive expose"
ME Association @MEAssociation
19K Followers 2K Following We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RPs do not necessarily mean endorsement.
Jennie Spotila @jspotila
2K Followers 388 Following Writer/ME Activist. We are more than our disease.
Phoenix Rising @aboutmecfs
6K Followers 4K Following A community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!
Scott Daniska @scott_scientist
3K Followers 539 Following Former ME/CFS researcher and current patient advocating for how environmental factors are driving these Complex Chronic Illnesses
World ME Alliance @WorldMEAlliance
2K Followers 254 Following An alliance of ME organisations across the world, we want to see a coordinated public health response to ME from the WHO and together founded #WorldMEDay.
CureME~CFS @Cure_ME_CFS
476 Followers 2K Following #ME. Not a doctor/scientist. Views are strictly personal. #microbiome, #neuro/+genic #inflammation, #fibromyaglia #mcas, #tryptophan #immunometabolism #genetics
Minnesota MECFS @MinnesotaMECFS
457 Followers 310 Following
Dr Mark Guthridge @Dr_M_Guthridge
5K Followers 618 Following Deakin Research Scientist (PhD) examining immunology, metabolism, hematology, cancer, cytokines, ME/CFS. Views are my own. Tweets not medical advice
CureME - UK ME/CFS Bi... @mecfsbiobank
4K Followers 207 Following Driving clinical and biomedical research for recognition, diagnosis and treatment of ME/CFS at @LSHTM. Home of the UK ME/CFS Biobank. Advocating for #pwME.
Simmaron Research @RedefiningMECFS
4K Followers 412 Following Official Twitter account for Simmaron Research, a non-profit scientifically redefining ME/CFS. Visit our site to learn more.
Leonard Jason @CenterRes
2K Followers 33 Following Leonard Jason is a Professor of Clinical and Community Psychology at DePaul University. He is also Director of the Center for Community Research
Mark Camenzind @ENDMECFSdotORG
328 Followers 241 Following
Maureen Hanson @DrMaureenHanson
6K Followers 146 Following I am a Professor in the Molecular Biology and Genetics Department at Cornell University in Ithaca, NY.
Derya Unutmaz, MD @Derya_
13K Followers 4K Following please Follow my main account @DeryaTR_ Professor @jacksonlab Human immunologist #Immunotherapy #health #Cancer #MECFS #longevity #AI Scifi #robots
Karina Wagenpfeil @ChronicKarina
501 Followers 294 Following Scientist turned ME/CFS, MCAS, POTS, and EDS patient. Interested in patient advocacy. Strong supporter of biomedical research. Blog when my health allows.
Jenny Meagher @JennMeagher
1K Followers 1K Following Life stolen by Myalgic Encephalomyelitis. Waiting to be rescued by science. Science waiting to be funded by governments. #MECFS
#MillionsMissing Aus ... @MMissingAus
2K Followers 480 Following There are #MillionsMissing from their lives due to ME (Myalgic Encephalomyelitis or #MECFS). We're fighting for health equality and to make their voices heard.
#stopGET Campaign @stopGETteam
955 Followers 545 Following After graded exercise therapy for ME some of the #MillionsMissing are missing more. Many patients report deterioration. #stopGET is an @MEActNet assoc campaign.
postersandme @postersandme
2K Followers 273 Following Advocacy, Art, Inspiration, reflection #MyalgicEncephalomyelitis #pwme
Opposing MEGA @OpposingMEGA
367 Followers 272 Following Saying no to millions more public funds for PACE trial researchers. Our petition - A Vote of No Confidence in MEGA Research for ME/CFS - https://t.co/nx1J9OHPJU
bellevillemaria @artebelleville
165 Followers 1K Following Red social personal. Interés en avances médicos e investigación ciencia #Inmunología #CFS #neurociencia #calidaddevida #educación #cultura
Let's Do It for ME! @LetsDoIt4ME
5K Followers 3K Following Fundraising for @Invest_in_ME charity Centre of Excellence @CofEforME programme of biomedical research and medical education for M.E. #MyalgicEncephalomyelitis
@invest_in_me (Invest... @Invest_in_ME
7K Followers 717 Following Invest in ME Research is an independent UK charity facilitating & funding a strategy of high-quality biomedical research into Myalgic Encephalomyelitis (ME)
Jamison Hill @NotTheWhiskey
31K Followers 24K Following No, not like the whiskey | Writer | Bylines: @NYTimes @LATimes @WashingtonPost | Disability & Chronic illness (#MECFS #Lyme) Advocate
#MEAction Network UK @MEActNetUK
7K Followers 589 Following UK charity empowering patients to fight for the #MillionsMissing with ME. Health equality & biomedical research now!
Valerie Eliot Smith @ValeriEliotSmit
3K Followers 783 Following Independent researcher living with myalgic encephalomyelitis (ME) since 1981. Barrister (ret'd) #TMTlaw Visiting scholar @QMUL Blog https://t.co/HWItDyrb9H
Constant F*cking Sh*t @mrkipping
1K Followers 1K Following Unwell w/ #MyalgicEncephalomyelitis, maybe (who the F knows) ✪ Raising awareness for #MECFS ✪ Demystifying Bullsh*t™ ✪ Humanist ✪ UK Republican ✪ Socialist ✪
Erica Verrillo @EricaVerrillo
5K Followers 2K Following Author of #fantasy & medical books. Certain people should probably avoid meeting me in a dark alley, but otherwise harmless. #FBR #resist #BLM #MECFSTrends for United States
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