🚨 ME/CFS community, I need your help: Please share your best resources explaining ME/CFS, PEM, and especially severe & very severe ME/CFS in the comments. We’ve collected resources before, but there may be great new ones I’ve missed and I want to forward only one thread! This is for a creative agency that needs to really understand the disease and its reality. Please share!

ME/CFS is a tractable biomedical problem.

🚨 Major news for ME/CFS research: WE&ME has launched a new research call worth over €1 million in total funding, supporting around 7 biomedical ME/CFS projects. What makes this especially notable, alongside the substantial funding volume from a foundation in a small country, is the degree of patient involvement. Members of the Science for ME (@s4me_info) community were heavily involved in shaping the call and will also play a major role in the review and jury process, helping guide funding decisions themselves. At the same time, the process includes internationally respected ME/CFS experts whose judgment and expertise I trust deeply. I may be wrong, but this could be one of the most patient-driven biomedical ME/CFS research funding calls of this scale to date. A huge thank you to everyone involved: the patients, patient advocates, researchers, WE&ME, the WWTF team around Benjamin Missbach, and all partners who helped make this possible. Most importantly, thank you to everyone who fundraised for or donated to WE&ME. This is where your money is going: directly into new biomedical ME/CFS research. Please share as much as possible! 🙏

Hey @JacobTref, Congratulations on stepping into your new role tackling some of the hardest problems in medicine. There is one condition I strongly encourage you to put on your radar early: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). ME/CFS is one of the most severe and neglected chronic diseases that is not rare. In its worst forms, patients are completely bedridden, unable to tolerate light, sound, or human interaction. Quality of life is among the lowest of any illness. Despite all this, research funding has historically been extremely low relative to disease burden, largely due to long-standing mischaracterization and bias, including the fact that many patients are women. ME/CFS sits at the intersection of immunology, neurology, and metabolism, involving complex multi-system dysfunction. This is exactly the kind of problem where AI can have an outsized impact by integrating complex data and uncovering hidden leads. Please take a closer look. Your involvement could make an extraordinary difference to millions affected. Thank you 🙏

There are definitely downsides to having too many ME/CFS research charities. At the same time, it is probably best for the cause for most countries to have at least one serious national organisation, because people tend to donate locally. In Europe especially, we need strong charities in France, Italy, the Netherlands, Poland, Spain, and other high GDP countries.

Incredible work by @MECFSResearch. This demonstrates that meaningful ME/CFS research infrastructure can be built, and scaled with private funding. There is definitely still room to grow in Germany, and successes like these need to be replicated across Europe.

Even if nobody will ever respond, reaching out to people you know for help about the ME/CFS cause still matters. It clarifies where you stand, and how you relate to other people, and more importantly how they relate to you. It leaves little room for bullshit. It also creates effects you can't observe or predict. In most cases you can't know how your plea is understood and remembered, what might quietly shift and/or resurfaces later. In my experience, even when there is no reaction, something is happening. Maybe not immediately. But over time, your anchoring might reappear as thoughts, conversations, or small actions and a changed attitude. If you can do it safely and without causing PEM, your voice has value. More than one might think.

Official acknowledgment by medical societies of their past and current mistakes regarding ME/CFS would save lives. Therefore, every day they fail to do so costs lives. Leaders who choose not to act will be known and remembered.

We should never forget that all these horrific stories, all the suffering now coming out of dark rooms where people have been ill for years or decades with ME/CFS, are not 'new.' Can you imagine how many people ended up taking their own lives and died after years without compassion, help, or love with this disease over the last 100 years? Pre-internet? It's difficult to imagine. These people have always existed, in roughly the same proportion of the general population. ME/CFS, irrespective of what 'form' it is, or what causes it, or what damn name you give it, people with 'this' (again, in all its potential forms and variations) suffered alone. Back then, people were silent, isolated, and crushed by stigma. Today, they still are, but people are finally connected and are speaking up. This cannot be stopped anymore. All these morons were wrong. Doctors, family members, friends, strangers, politicians and yes, even the ignorant hairdresser telling you to find god to heal, it's really as simple as that. Patients were right. You did not make this up. You were not imagining it. Nobody (or at best very few!) ever did. What was dismissed as weakness and hysteria, or personal failure was and is a real disease. So if you do anything, do not give a jack shit about what anyone might think of you anymore. Speak up. Tell your story. Do everything you can to improve your own situation and if possible to fight for the cause safely.

Die WE&ME Foundation (@weandmecfs) plant einen quartalsmäßigen medizinischen ME/CFS-Stammtisch. Ziel ist ein informeller, niederschwelliger fachlicher Austausch sowie der Aufbau eines medizinischen Netzwerks zur nachhaltigen Verbesserung der Versorgung von Patient:innen und zur Anbahnung von Kooperationen und Forschungsaktivitäten. Ein Obmann ist bereits benannt, eine Obfrau wird folgen. Bei Interesse an Informationen, Mitarbeit oder Teilnahme kann man sich jederzeit direkt an die WE&ME Foundation wenden. 🙏