#pwme search results

From Canada 🇨🇦 PTPRN2 hypomethylation and PHB2-associated miR-153-3p maturation define dual epigenetic features linked to symptom variability in Myalgic encephalomyelitis link.springer.com/article/10.118… @OpenmedfCanada funded Screenshot from Science for ME update #MEcfs #PwME

“You can have the best made plans, factor in #pacing… your self-management toolkit, but if today is going to be that day of struggle, you don’t get a say. #Fatigue stops me from working, socialising, leaving the house.” buff.ly/42Z77Qy @me_illness #pwME #chronicillness

2/ From: "Patient-Reported Treatment Outcomes in ME/CFS & Long COVID" pnas.org/doi/10.1073/pn… #PwME #ME

Bit of casual advocacy happened today. Nisha was inquisitive about my work and advocacy inbetween taking pics. Raising awareness, one conversation at a time 💙📸 #MEcfs #pwME

Saw this one today--I wonder if those of us who are mostly horizontal but still able to could do brief bursts of abdominal squeezes to help "wash" our brains? (Another potential reason that the sicker you are, the less likely recovery is) #pwME neurosciencenews.com/abdominal-pump…

An alternative email list has been just announced for "NIH ME/CFS Research and News Updates" eepurl.com/jEfjfs #MEcfs #PwME

Learna/StudyPRN have updated their free ME/CFS CPD resource studyprn.com/p/chronic-fati… Health professionals around the world can get a 1 Hour CPD Certificate The ME/CFS community have been keen to highlight earlier versions of this #MEcfs #PwME

I've made this once a mnth to start to see if I can maintain this as a #pwME as 2hrs once a mnth gives me the best chance.Time will tell &luck has to be on my side too,despite mitigating #PEM risk.There'll be days where it'll be a struggle but sustaining it might just be possible

With one week left, the appeal is only at 53% so I have donated for a second time. I am very grateful to David for his work and have no appetite to go back to similar work myself. #MEcfs #PwME

2/2 Four major themes emerged from the words of family and friends...... systemic neglect and institutional failure, clinical neglect and failure, social disconnection, and personal burden." meassociation.org.uk/fiso #pwME #MECFS #MyalgicEncephalomyelitis #SevereME

For those of you that have migraines: does any of you have one sided face drooping (at the same side with the migraine)? #mecfs #migraines #pwme #longcovid

"Lifetime Pension for Chronic Fatigue [CFS]: Why This Precedent Matters for Everyone in Spain" "When Illness Becomes a Sentence: How a Court Changed the Fate of a Woman with Chronic Fatigue" russpain.com/en/health/life… #MEcfs #PwME

#EncefalomielitisMialgica #MyalgicEncephalomielitis #pwME Aún tengo el corazón "encogido". Como madre , corroborar eso que quiero esconder en el fondo de mi mente, la indefensión e incluso el daño que pueden sufrir l@s enferm@s con un ingreso hospt 💔😓

We are thrilled to announce that #MEAction just received a $15,000 matching grant to fund our Emergency Department Project! Every $ you give will be matched to help us reach $55k. Give here: millionsmissing.funraise.org/fundraiser/mea… A huge thank to our anonymous donor & all who are giving! #pwME

#MEAction Scientific Director Jaime Seltzer @exceedhergrasp1 and clinicians at the Mayo Clinic have already collected invaluable data to inform this work. Soon, we will be launching a survey to expand that evidence base, and we want YOU to be part of it. #pwME #pwLC

Thanks to a generous gift from the @WPInstitute, #MEAction has launched an in-depth emergency department project with a clear and urgent goal: to develop clinical guidelines that improve how people with ME/CFS and Long COVID are treated in emergency settings. #pwME #pwLC

Why do #pwME have to work SO hard to get a response from @MEAssociation??

In my mind this is what I want to do to the doctor when they talk a load of crap.. #gaslighting #LongCovid #pwME

#EncefalomielitisMialgica #MyalgicEncephalomielitis #pwME @AsociacionPEM

I am #OneOfTheTwo who masks to protect myself, my family and my community. I’m also a supporter of the work you have done on several social justice issues @jonstewart and I hope you will take the time to learn more about the ongoing need for masking. #IACIs #PwME #PwLC

🇺🇸U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵

'Life Shrinks with ME/CFS': an illustration of how ME/CFS can impact a person's quality of life, depending on severity. With thanks and credit to hazelemons on reddit.  #MECFS #pwME #MyalgicEncephalomyelitis #MyalgicE

A post on my dinner party yesterday for what it is worth #MEcfs #PwME

At some point it will happen right? Staying chronically optimistic... Happy less crappy new year to you all!! #pwme #myalgicE #millionsmissing #severeME #photophobia #hyperacusis #POTS #banPEM #art2cureME #canyouseeMEnow #balletdancer #zorgbetervoorME #chronicillness #science

Please Help David Tuller @davidtuller1 , Our Champion! crowdfund.berkeley.edu/project/49720 Image is from the AMMES April 2026 newsletter #MEcfs #PwME

Another extract from an essay by Susan Griffin. She chose to die this week. She is referring to #ME in this piece from 1991. Her ME had deteriorated recently, hence her decision. She leaves behind a unique body of work. Another #pwME death.

It’s official! We’re open @OxoTowerWharf Lives We Cannot Live runs until Sunday. #mecfs #pwme @MEAssociation

One month to go to May 12, International ME (or ME/CFS) Awareness Day. A great opportunity to raise awareness and understanding. Also the day (and the associated awareness week/month) can be used for lobbying, fundraising, and other forms of activism. #MEcfs #PwME

Medical Matters – Gastric symptoms – irritable bowel or gastroparesis Dr Charles Shepherd and the ME Association's other advisers answer questions from members of the MEA.    Q: What could be causing my gastric symptoms? A: meassociation.org.uk/medical-matter… #pwME #MECFS #MyalgicE

Savannah is no longer at QEH. Is in the Royal Devon - the only NHS hospital with a protocol for admitting Severe #pwME. Still far from risk free imo, but a huge improvement over QEH. Full details below.

I’m not expressing an opinion on the post and I’m certainly not interested in debating it. But it might explain why Wessely has switched his attention to trans. He’s sniffed out the next money making scheme. #pwME #MECFS

It’s time for this government to look at these figures urgently. If they don’t care about the enormous level of suffering of #pwME they might take notice of the economic toll this ignored and virtually unfunded illness is taking. Time to get serious about #ME right now. 🔥🔥🔥

I have been surviving #MECFS for 16 years now.There is no treatment and no known cure. There IS a plan for reasearch to help #pwme but the government have refused to fund it #pwme are not living, we are just surviving and have been forgotten @wesstreeting please find the plan

'But ... you did it before' is a wonderfully illustrated booklet by digital artist @MahliQuinn, which can help to explain M.E. to people who ask about it. Available from our online shop for only £3, with free shipping! meassociation.org.uk/xmnl  #pwME #MECFS

M.E./C.F.S is lifelong. Stop harmful reassessments. Recognise it under the Severe Conditions Criteria. #SCCforME @DWPgovuk @stephenctimms @patmcfaddenmp #MEcfs #pwME #Disability Campaign info - stripylightbulb.com/2025/12/05/scc…

Eventually our labs don't look good. As our immune systems continue to degrade, infections and auto-immune diseases start to raise their ugly heads. The problem is that it can take decades for the 'visible' parts of this illness to manifest. But it's been there all along. #pwME

Meeting people, the #pwME way! 💙

Dec 22: it’s Rachel Parris! @rachelparriscom is an English comedian, musician, actress and presenter! Her message: “I wish peace, relief, support and to be heard. I hope Santa brings you real help, systemic change and JOY where possible.” #PatientSafety #pwME #pwLC #ThereForME

Our executive director, Laurie Jones is sending out some love this Valentine's weekend- in the form of refurbished Visible bands! Those of you who won have been notified via email and the first round of bands are on their way! Thank you to @Visible_health! #pwME #StopRestPace