I…slept last night 😳
Like, I woke up feeling better than when I went to bed & maybe even felt “rested” (a concept I’m intellectually familiar w/as a #pwme & #pwlc)
Maybe it’s the new sleep med, or maybe it’s a blip where I feel better then my body rips the rug out from under me the next day *squint*
We will have coordinated online actions for you to take to help us get our message out! Share YOUR story! See all the details in our toolkit: docs.google.com/document/d/1...
#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid
Does anyone in the UK know how to get LDN from Dickson Chemist's? I tried to figure this out years ago but I couldn't work it out. They're a chemist's, right? So you need to already have a prescription from a doctor, but there aren't any doctors who will give the prescription, so...? #pwME
Myalgic Encephalomyelitis Complex, acquired, multi-systemic disease MAY ICC ME AWARENESS MONTH photo of 2 dolls named Jim and Rosie As a parent of a child with M.E/CFS, I live under constant fear of the wrong person getting involved in our lives. What an awful situation it is that you have to be wary not to push too hard for help or not complain because there's a risk they could take your child
One month to go
A great opportunity to raise awareness and understanding. Also the month (and the associated awareness day/week) can be used for lobbying, fundraising, and other forms of activism.
#PwME #MyalgicEncephalomyelitis #MEcfs #CFS
A new paper was published in the Annals of Internal Medicine on March 31st 2026, titled ‘The Effect of Fluvoxamine and Metformin for Fatigue in Patients With Long COVID: An Adaptive Randomized Trial.'
Read in full: https://meassociation.org.uk/uw6d
#MECFS #pwME #MyalgicE #LongCovid #PostCovid
Please donate & share to help a #pwME who has been involuntarily committed to psychiatric ward - #MECFS is not psychological! whydonate.com/fundraising/...
Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center — Fehrer et al "the conference provided a comprehensive overview of state-of-the-art research on ME/CFS, covering recent advances in patient care and mechanistic insights into cardiovascular dysregulation, metabolic dysfunction, and immune dysregulation."
Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center
www.sciencedirect.com/science/arti...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
Finding My Best New Normal With Chronic Illness. a chronic voice .com
"If you’re #homebound or #StuckInBed, it is still possible to mix things up little by experimenting with new #hobbies. You might develop a passion for something you thought you’d never like, or unlock new facets of yourself.": buff.ly/USgNb7P
#ChronicPain #ChronicFatigue #pwME #DisabledPeople
"Celebrating" the last day of #LongCOVIDAwarenessMonth by listening to @quietriotpod.bsky.social podcast on the cruelty of #LongCOVID. Like #ME, it's "the greatest medical scandal of 21st century."
podcasts.apple.com/us/podcast/q...
h/t @longcovidadvoc.com @mrkennycampbell.bsky.social
#pwLC #pwME
"Our study joins a growing body of work by scholars and patient advocates calling for recognition, respect, and reinvestment in the lives of those with severe ME/CFS These individuals are not invisible by choice; they are rendered invisible by systems that refuse to acknowledge their existence and suffering. Listening to their voices is a moral imperative, a research necessity, and a first step toward justice." RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942 Nezamdoust and Ruel. Social Science & Medicine (2026)
ME Research UK:
A team of researchers have published a study investigating lived experiences of people with ME/CFS using data from posts made on social media.
Read more: tinyurl.com/mj2p8c24
#mecfs #cfs #pwme #severeme #severemecfs
2/
ME Research UK:
It is worth noting that different studies can produce different results. In a different study
www.meresearch.org.uk/t-cell-exhau...
that was focused on "ME cases that were triggered before the emergence of SARS-CoV-2", T cell exhaustion was noted in participants.
#mecfs #pwme
![Could identifying the viral trigger of ME/CFS inform future therapeutics? A recent study analysed immune cells from 10 individuals with long COVID (LC)-ME/CFS (meeting Canadian Consensus Criteria) and 10 controls (recovered from infection) Findings were compared with existing datasets from idiopathic ME/CFS patients.
Whilst there were similarities, LC-ME/CFS showed both extensive immune cell depletion AND hyperactivation, whereas idiopathic ME/CFS showed immune cell activation without the same level of immune cell loss.
Signs of T cell exhaustion (T cells overworked to point of malfunction) present in LC, not in idiopathic ME/CFS.
As this is a snapshot, it cannot rule out that idiopathic ME/CFS might start out with similar immune changes. Though, these results suggest that understanding viral triggers like SARS-CoV-2 could guide future therapeutics.
Note: authors do not define idiopathic ME/CFS Shahbaz, S. et al (2026). Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion, and Galectin-9—associated depletion of gamma delta and mucosal-associated invariant T cells in Long COVID with ME/CFS. Frontiers in Immunology, [online]. INFORM. INFLUENCE. INVEST.
Ihea RESEARCH UK SCO36942](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreigmsxo45n7xszgumubqtd2fhxmo4o4p22hrx6urgkhefyetsdfsq4)
Could identifying the viral trigger of ME/CFS inform future therapeutics? A recent study analysed immune cells from 10 individuals with long COVID (LC)-ME/CFS (meeting Canadian Consensus Criteria) and 10 controls (recovered from infection) Findings were compared with existing datasets from idiopathic ME/CFS patients. Whilst there were similarities, LC-ME/CFS showed both extensive immune cell depletion AND hyperactivation, whereas idiopathic ME/CFS showed immune cell activation without the same level of immune cell loss. Signs of T cell exhaustion (T cells overworked to point of malfunction) present in LC, not in idiopathic ME/CFS. As this is a snapshot, it cannot rule out that idiopathic ME/CFS might start out with similar immune changes. Though, these results suggest that understanding viral triggers like SARS-CoV-2 could guide future therapeutics. Note: authors do not define idiopathic ME/CFS Shahbaz, S. et al (2026). Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion, and Galectin-9—associated depletion of gamma delta and mucosal-associated invariant T cells in Long COVID with ME/CFS. Frontiers in Immunology, [online]. INFORM. INFLUENCE. INVEST. Ihea RESEARCH UK SCO36942
ME Research UK:
A recent study found differences in the extent of immune changes in ME/CFS following SARS-CoV-2 infection vs. idiopathic ME/CFS. Do different viral triggers produce variations in underlying pathophysiology?
Read more: tinyurl.com/543kcekm
#mecfs #pwme #cfs
1/
ok anyone else #pwME read the 1879 book Eyebright by Susan Coolidge and think Mrs Bright had ME? I mean, it could have been anything. but upwards of 12 years in bed, always worse after a visit downstairs (a couple times a year!), needs the window closed/no sunlight...
Update on my #AggressiveRest journey:
I thought I was resting before, but not nearly enough. My tracker helps me see this. Wish I'd realized before I got to this point.
Stress is as challenging as physical activity. Must work hard to avoid both.
I keep on keeping on.
#PwME #MECFS #LongCovid
#pwME Where would you be if you could get out of your house or out of your bed?
Post as many photos as you want.
My house is about 1/4 mile to the left of this photo taken from Swift’s Hill, Slad, Gloucestershire. I haven’t been up there for over 30 years!
I'd love some tips on books about disability history, preferably about eugenics and pandemic, Europe > America, and if possible how it ties in to politics and rethoric today.
Preferably in Swedish or Spanish, but English is fine (my dad reads the first languages easier).
#NEISvoid #PwME #PostCovid
"Attempting to get..specialists who keep playing ‘pass the potato’ to look at what #research there is into my #disease ..Due only to lack of... #disability supports, I have deteriorated from 9 #health issues..to..over 30.": buff.ly/NoukJhA
via @ thecanaryuk.bsky.social
#pwME #ChronicPain
BBC Wales Our son loved the outdoors – invisible illness means he now can't walk or talk The article includes several people with ME/CFS in Wales where NHS services are patchy. The Welsh Government is quoted: "Proposals for an all‑Wales specialist, an expert group and national standards are being actively considered as part of the service's ongoing development." Dr Charles Shepherd and several people with ME/CFS took part in a BBC Radio Wales phone-in. Duration 26 minutes.
BBC Wales covers ME/CFS with text and radio pieces
www.bbc.com/news/article...
www.youtube.com/watch?v=r1S2...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #SevereME #SevereMECFS
UK DHSC delays commissioning of services for the most severely affected The Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS. This is said to be due to wider organisational changes within the NHS. #ThereForME have produced a PDF briefing on the topic. PDF | Thread
The UK Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS
ugc.production.linktr.ee/8dd80874-c0a...
Screenshot from Science for ME update
#MEcfs #PwME #SevereME @thereforme.bsky.social
Our Scientific Director, Jaime Seltzer, is at an NIH ME/CFS conference today - working hard for our community as always!
Thank you, @exceedhergrasp1.bsky.social!
#pwME #MECFS #MyalgicEncephalomyelitis #NIH
IMAGE DESCRIPTION: Photo of a man lying in bed, looking at his phone. MEA and ME Connect logos. Wording reads: "I'm very glad there is someone to talk to who understands."
ME Connect is our free, confidential helpline service offering support, information and signposting for people affected by ME/CFS and Long Covid.
Get in touch:
0808 801 0484
meconnect@meassociation.org.uk
#MECFS #pwME #LongCovid #MEConnect #Helpline
Pour l’instant, vous y trouverez des témoignages, des analyses… à vous de compléter !
Abonnez-vous à notre newsletter mensuelle pour ne rien rater.
comprendrelem.fr/a-propos/new...
#paEM #pwME #MECFS #EMSFC
La Revue Comprendre l’EM. Première colonne : Un site de référence (L’EM c’est quoi ; L’EM et moi ; Pacing ; Enjeux ; Soutenir). Deuxième colonne : Documents à télécharger dans différents formats accessibles. Troisième colonne : Un blog pour réfléchir (Analyses, Témoignages, Art, Interviews, etc.)
Comprendre l’EM est une revue en ligne en 3 parties.
1 - Un site de référence
Des informations fiables, basées sur les consensus scientifiques et sur l’expérience des patients. Des savoirs accessibles, didactiques, faciles à lire et joliment illustrés.
#paEM #pwME #MECFS #EMSFC
IMAGE DESCRIPTION: Photo of a dark blue ME Association pin badge on a wooden table. Wording reads: Show your support with an ME Association pin badge! Only £3.80 from our online shop. Now accepting Apple Pay and Google Pay. MEA logo.
Show your support with an ME Association pin badge!
Only £3.80 from our online shop - which is now accepting Apple and Google pay, as well as debit/credit card and PayPal.
meassociation.org.uk/product/mea-round-pin-ba...
#pwME #MECFS #MEAssociation #MEAwareness
IMAGE DESCRIPTION: Photo of Dr Charles Shepherd, MEA Hon. Medical Adviser. Wording - "Could there be a link between ME/CFS and Low Blood Sugar, and what other conditions should your doctor consider checking for? Please click the link to read the answer in the Medical Matters Database.
Medical Matters – Low Blood Sugar/Hypoglycaemia
Q: Could there be a link between ME/CFS and Low Blood Sugar, and what other conditions should your doctor consider checking for?
A: https://tinyurl.com/nhzdn596
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LowBloodSugar #Hypoglycaemia
CLINICAL TRIAL: Treatment of PoTS (Postural orthostatic tachycardia syndrome) in Long Covid with ivabradine.
www.pharmacytimes.com/view/heart-rate-vs-quali...
#MECFS #pwME #POTS #LongCovid #PostCovidSyndrome
1/2: The Guardian: Welfare benefit reforms – changes to the health element of Universal Credit
Read more on the blog: https://meassociation.org.uk/wbta
#MECFS #LongCovid #UniversalCredit #pwME
“I drive to work. I talk to people. I solve problems. I go home. I am tired in the way ordinary people are tired, the kind of tired that a night’s sleep fixes.
That life is gone.
What replaced it has a name.
Long COVID. ME/CFS”
#LongCOVID #MECFS #PEM #PwME
A quote from my piece, The Debt Came Due.
“There is a version of my life that exists in my memory like a photograph from a trip I’ll never take again. In that version, I wake up and get out of bed without negotiating with my body first.”
#LongCOVID #MECFS #PEM #PwME
substack.com/home/post/p-...
Well said. I had an outing Thursday and have been in bed since 6 pm Thursday when I was dropped off. #PwME #Disability
