ME/CFS: Recognition, medical care & protection for affected persons and research funding

I have ME/CFS. We shouldn’t have to keep begging for quality healthcare and basic research. Please do better.

I have ME/CFS

The ME/CFS community has been suffering horribly for decades. We have little or no treatment, care, or support. Most of us are suffering from post-viral illnesses which would have been cures by now had the medical establishment actually invested in researching this totally debilitating illness. We want our lives back.

Weil ich selbst an einem seltenen Leiden leide.

Fordi jeg selv har været syg i mange år af ME/CFS

Porque estoy enferma, tengo em/sfc

Bin persönlich betroffen.

Porque soy una afectada y aunque sea española, en todos los rincones estamos igual de olvidadas. Hay q apoyarnos a nivel mundial

Evidentment perquè estem en un estat de indefensió, no només per la falta de crèdit que se li dona a la malaltia sino també per l'abandonament mèdic en molts dels casos.

My son has this condition and I have been shocked to learn this affliction exists (and has existed for quite some time) and has gotten so little support (in terms of trying to solve the underlying issues…as well as the way patients get treated by medical establishment …not good!)

Ik heb sinds 2000 ME

Ik heb zelf ME/cvs.

Es ist sehr wichtig dass mann die ernsthafte Krankheit ME / Erschöpfungssyndrom anerkannt und biomedisches Untersuch finanziert

I have severe ME and we been treated like !@#$! for decades

Ik heb zelf ME/CVS

Ik steun de ME groepen om meer aandacht te krijgen

Kind ist betroffen

Min kæreste er ramt af ME.

ME/CFS is a severe multisystem disease that currently affects 10s of millions of persons and their families world-wide. The disease leads to severe physical, neurocognitive, neuroimmunological, neuroimmune limitations and much more. It can significantly affect the quality of life of the person living with it, their families, their careers, their workplace and their ability to contribute to their community and society. ME/CFS has been compared to "living death" and "living hell" and that is not an exaggeration.

Despite the high number of affected people and the severity of the disease, ME/CFS is not very well known. It is insufficiently researched and affected people are inadequately cared for in the health and social system.

Patients with ME/CFS are severely neglected and worse: further damaged and burdened by a healthcare system and medical practitioners who do not have the opportunity to understand ME/CFS, and therefore improperly attempt to diagnose and treat the illness, often with disastrous, irreversibly consequences.

Signs and symptoms of ME/CFS have been recorded since 1930s to 1950s and in subsequent decades since but the illness has not received appropriate attention because it generally isn't contagious at large scales. The COVID19 pandemic however, has changed that. ME/CFS isn't going to disappear anytime soon.

Let's make a positive change now for 10s of millions worldwide and lessen their burden and the financial healthcare burden of one of the most complex, under-researched and under-treated illnesses of the 20th and 21st century.

The following is urgently needed for ME/CFS and all affected:
1. Better and more readily accessible information and education
2. Development of suitable medical treatment and care facilities
3. Social security
4. Increased research and development

We are all affected. We can bring about the necessary changes for the better. We can start now. We must start now.

ME/CFS is a significant medical problem throughout the world. Generations of people, mostly women, have been mistreated. There is desperate need for proper recognition and more education, research and support.

Ik heb ME

Zelf patiënt

Zelf patiënt

Porque la investigación es muy necesaria para conocer la enfermedad, tratarla y ayudar a los enfermos en todas sus necesidades derivadas de la incapacidad que esta supone.

Jag lider av ME sedan tre år och har turen att få vård på specialistklinik. Det borde alla få.

Zelf ME patiënt en dochtertje met ME

I am a person with ME. More research is needed worldwide do that we find a treatment benefiting ME but also possibly long covid people.