Solve M.E. has chosen 2 pioneering studies to receive ME/CFS Catalyst Award funding: “Effect of Semaglutide on ME/CFS Symptoms” Led by Prof Carmen Scheibenbogen “Discovery of Target Antigens for Dysfunctional T Cells in ME/CFS and Long COVID” led by Prof Liisa Selin, MD, PhD tinyurl.com/mr25nwmm

We have finally finished updating our online art gallery into a dark theme! A Quiet Storm showcases art made by people who have experienced severe ME/CFS. Our full statement is below. www.aquietstorm.me #MECFS #pwME #Art #OnlineArtGallery

Getting diagnosed with endometriosis kind of felt like getting diagnosed with ME/CFS all over again. The years long diagnostic process, the lack of good treatment options, the lack of funding for research, and in the back of my mind, knowing the symptoms can get much much worse.

Every piece of media that frames the science & perception of ME as moving on - is important. A section here on how ME predominantly affects women. Although when asked about why ME has been dismissed the psychiatrists were given a free pass. #medicalmisogyny

In the programme, BBC health correspondent James Gallagher interviews Prof Chris Pointing @cgatist.bsky.social (#DecodeME), Prof Rosemary Boyton (#RosettaStoneStudy), Prof Sir Stephen Holgate and case studies Catherine and Jo | BBC R4 | www.bbc.co.uk/programmes/m... #mecfs #me/cfs #MyalgicE

"don’t criticise the psychologisation of ME because I feel stigmatised by mental illness; I criticise it because it doesn’t fit the facts" "the lack of even the will to understand it among people whose job it is to do so is more traumatic and it is culpable" 1/2

Want to read something good about #ME today? Read this from Brigitte's german magazine.

‚Lots of doctors suggested that if I practiced trumpet and exercised more it might help me recover, but then I obviously crashed and the pain got worse.‘ This is PEM - post-exertional malaise. #LongCovid www.lshtm.ac.uk/media/97541

The f**** pictures, the title with CFS instead of ME, the somewhat justification of abuse and gaslighting, the 'recovery' narrative permanent bullshit, the total silence about daily life of severe... www.theguardian.com/society/2026...

(UK) “Six months since the publication of the Final Delivery Plan for ME” blog post by by #ThereForME @thereforme.bsky.social Links: www.thereforme.uk/p/campaign-u... www.gov.uk/government/p... Screenshot from latest Science for ME weekly update #MEcfs #CFS #PwME #MyalgicEncephalomyelitis

Forget about medicine, the question is how in 2026 this is still legally possible and does not trigger an automatic judicial and political action.

6) Edwards et al. also question the need for ‘interdisciplinary’ care and multidisciplinary teams. What patients need is a physician and specialist nurse with knowledge of ME/CFS who can an provide accurate diagnosis and long-term follow up.

Retrouvez la newsletter ici comprendrelem.fr/a-propos/new... #pwME #paEM #MECFS #EMSFC

Another one coming from the #MS world that looks interesting for #ME as well.

A lot of us probably have artifacts of a past self. Like the two pairs of shoes ($300 each, one nearly new) and other gear I wore to train for a half-marathon 3 years ago. This led to the #PEM crash that I still haven't recovered from. But I still have the shoes. #MECFS #disability #MillionsMissing

Missing from the NHS ME e-learning modules. #MEDeliveryPlan

2/ "Actions to take: When patients present at the hospital, the management priorities should be to" From: "Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)" anzmes.org.nz/wp-content/u... #SevereME #MEcfs #LongCovid #CFS #PwME

3/ "It is imperative the environment in the hospital setting does not induce PEM or exacerbate symptoms. Actions to take" From "Hospital Care Plan for Severe-Very Severe ME/CFS & long COVID (& associated conditions, e.g.: dysautonomia)" anzmes.org.nz/wp-content/u... #MEcfs #LongCovid #CFS #PwME

Anyone that tells you this 'costs' money or it is 'impossible to apply' is shamelessly lying. Ending the current unique situation where hospitals cause harm (even death) to severe #pwME is just a matter of will, not medicine. #GreatestMEdicalScandal

🌟The first in our new 101 back to basics series. In this article we look at Psychologisation. If there's a topic you'd like us to cover please let us know in the comments! 🎧 Audio available 🖇️ tinyurl.com/52vthd5b

Faulty HLA. Basically where we all meet... :(

6 months since the precious "final" "delivery" "plan" was posted (it can't be final w/o provisions for the (very) severe, it doesn't deliver, it fails to plan). It has achieved exactly what every #pwME said it would. Fuck All. Or in other words a continuation of decades of abuse by UK Govt.

ME/CFS Delivery Plan 6 months on Empty words and no concrete action Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government. www.thereforme.uk/p/campaign-u...

International ME/CFS Conference 2026: Registration for the online livestream is now open. 7-8 May, 2026. Latest research on #mecfs and #LongCOVID from leading international experts. Register now: https://t.ly/Ow2Co

Steve’s Law: The reception, compassion & empathy given by a Health Care Worker to a patient is directly proportional to their confidence of leading them to a successful outcome. Any hostility or blame directed towards the patient is evidence that they are way, way out of their depth. #pwME #pwLC

I was particularly surprised by this "aim" from RCP that all of their ~40,000 members would undertake the modules by the end of 2025. Particularly as (afaik) they have made no attempt to tell members about the modules, and no CPD points are available for completing the modules. #MEDeliveryPlan

‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’

'...in a context where the NHS is not equipped to provide James with any meaningful medical treatment, isn’t covering the costs of the care he needs to avoid further deterioration the very least they could do?' So sorry to read this but so grateful to Karen for sharing it.

This blogpost by @nickbenton.bsky.social via @thereforme.bsky.social is absolutely BRILLIANT. Truly outstanding advocacy. He does it all: grades advances based on promises (unsurprisingly really bad grades 0 or 1/5)... www.thereforme.uk/p/campaign-u...

Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18. Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die. archive.ph/J3Xv3

1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands. In this new thread, we made a brief summary of his presentation.

Clip from German TV - 19-year-old Martha developed ME/CFS following COVID (English subs) Mostly confined to her sofa, carefully pacing her energy to avoid crashes. No school. No social life. No approved treatment. #LongCovid

I've now had #MyalgicEncephalomyelitis 37 years (since age 16), 31 years with #SevereME🙁 We need more public & private* research money to speed up progress Here's my story in Irish Independent m.independent.ie/life/health-... *List of research funds phoenixrising.me/myalgic-ence... #MEcfs #PwME

I often feel they not only gaslight us, but they must believe we have become somewhat completely stupid when we develop this illness? #GreatestMEdicalScandal

Over years of constant rolling PEM & constantly scaling back to what I thought *must* be safe—but was never actually enough rest to get me out of all the PEM I had accumulated—I ended up severe. By the time I finally got a wheelchair, I was mostly too sick to use it.

The firestorm continues 😔. There are so many reports of EBV being a trigger for #ME & studies showing viral reactivation being part of the picture for #IACC - a sad day for science.

Mast cell activation can disrupt the gut–blood & blood–brain barriers. Driving inflammation, microglial activation & neuronal damage linked to ASD. 📢 Call for Papers 2nd Edition: GMC2026 June 15–16, 2026 | Boston, USA (Hybrid) 📝 2nd Round: Feb 22, 2026 microbiomecongress.org/abstract-sub...

"Terwijl Duitsland #MEcvs en #LongCovid erkent als een van de grote gezondheidsuitdagingen van deze eeuw, blijft België vasthouden aan een achterhaald beleid. Patiënten betalen daarvoor een zware prijs." Mijn opiniestuk @knack.be⬇️ #LangdurigZieken #PAIS www.knack.be/opinie/me-cv...

FOI response shows uptake of ME/CFS e-learning from the government delivery plan: • Intro: 371 • Community care: 101 • Severe ME: <50 From a workforce of ~188k doctors & ~423k nurses This is the problem when training is “promoted” and not mandatory.

Clip from German TV. Julia developed ME/CFS after Covid in 2022. She is one of around 600,000 people in Germany living with the condition. It can be severely disabling, some mornings she can’t even get to the toilet without help. #MECFS #LongCovid

I have spent quite a bit of time/energy already on this and it is going to be my primary focus for the next few months. Please highlight widely. 🙏 #Ireland #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

An essential read. So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst. Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.

In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding. She explains why CHC funding for very severe ME is an issue that deserves attention. 🔗 in next post 👇

This is *pitiful*. 😞 @ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.

So not only it is opaque, hidden, voluntary and the balance is 50 people out of 400.000, but on top of that the course in itself is s***? I follow the news from Germany about #ME in the last 2 years and the UK gvt is doing sooooooooo bad. No shame.

Come on... the plan explicitly mentions 'rebuilding trust'... how can this be done if the most basic measure (0£) which is changing TODAY education and awareness is not even enforced???? We come from 40y of the #GreatestMEdicalScandal, how this will objectively guarantee to break from any of it????

I even fail to see in 10 pages A SINGLE MEASURABLE benchmark, objective or goalpost that we could use to create accountability... I mean... come on. We all know how politics work.

This is nothing short of dying while being spit in your face.

This confirms what all #pwME said back in August. Without compulsory universal training it is beyond ridicule to think the system will correct and amend itself after 50y of institutional neglect and abuse. Briliantly done @lucibee.bsky.social Absolutely pitiful.