#Tag · bonfire.cafe

The phrase "Millions Missing" has often been because people with ME/CFS are mostly too sick to work and too sick to protest.

But it also means millions of doctors know nothing about ME/CFS and millions of dollars are missing from research funding.

https://quillette.com/2026/02/22/the-cost-of-indifference-me-cfs-cdc-public-health/

“Societal dismissal leads to scientific neglect,” writes Ed Yong in the New York Times

@mecfs @longcovid

#MEcfs #MillionsMissing #PwME

One of the reasons for these discrepancies is that much of the suffering experienced by ME/CFS patients remains invisible to the public. Some of the most severely ill patients are reclusive and too sick to protest, so we simply disappear from sight and are forgotten. And the symptoms of ME/CFS lie so far outside the realm of everyday experience that the illness can be difficult for healthy people to understand. The cognitive symptoms and loss of energy, meanwhile, make it difficult to explain what’s happening and it contradicts our intuitive understanding of disease, which is that the sufferer either gets better or he gets worse until he dies.

Quillette

The Cost of Indifference

The sad and curious case of the chronic fatigue syndrome.

ahimsa

@ahimsa_pdx@disabled.social · 4 days ago

ME/CFS research is badly underfunded:

"Despite decades of evidence of ME/CFS’s biological roots, life-saving medical research and treatment has been hindered by the lingering view among doctors, researchers, and the general public that the disease is simply a product of the patient’s attitude and imagination.
...
In 2024, just US $10–13 million was earmarked for research into ME/CFS, and the total was even lower in 2025."

https://quillette.com/2026/02/22/the-cost-of-indifference-me-cfs-cdc-public-health/

@mecfs @longcovid

#MEcfs #LongCovid #Research

Despite decades of evidence of ME/CFS’s biological roots, life-saving medical research and treatment has been hindered by the lingering view among doctors, researchers, and the general public that the disease is simply a product of the patient’s attitude and imagination. Although major public-health agencies now acknowledge the existence of ME/CFS, and although the disease is estimated to cost the US between US$18–50 billion a year in lost labour and medical expenses, it still receives very little research funding. In 2024, just US$10–13 million was earmarked for research into ME/CFS, and the total was even lower in 2025. (For context, in fiscal year 2022, Parkinson’s disease received US$259 million in research funding from the NIH.)

In 2015, a landmark report by the National Academy of Medicine revised the prevailing position of public-health agencies by acknowledging that ME/CFS is a severely disabling multi-system disorder of the body and brain that devastates millions of lives in the US and around the world. — Despite decades of evidence of ME/CFS’s biological roots, life-saving medical research and treatment has been hindered by the lingering view among doctors, researchers, and the general public that the disease is simply a product of the patient’s attitude and imagination. Although major public-health agencies now acknowledge the existence of ME/CFS, and although the disease is estimated to cost the US between US$18–50 billion a year in lost labour and medical expenses, it still receives very little research funding. In 2024, just US$10–13 million was earmarked for research into ME/CFS, and the total was even lower in 2025. (For context, in fiscal year 2022, Parkinson’s disease received US$259 million in research funding from the NIH.) In 2015, a landmark report by the National Academy of Medicine revised the prevailing position of public-health agencies by acknowledging that ME/CFS is a severely disabling multi-system disorder of the body and brain that devastates millions of lives in the US and around the world.

Quillette

The Cost of Indifference

The sad and curious case of the chronic fatigue syndrome.

ahimsa

@ahimsa_pdx@disabled.social · 4 days ago

The phrase "Millions Missing" has often been because people with ME/CFS are mostly too sick to work and too sick to protest.

But it also means millions of doctors know nothing about ME/CFS and millions of dollars are missing from research funding.

https://quillette.com/2026/02/22/the-cost-of-indifference-me-cfs-cdc-public-health/

“Societal dismissal leads to scientific neglect,” writes Ed Yong in the New York Times

@mecfs @longcovid

#MEcfs #MillionsMissing #PwME

Quillette

The Cost of Indifference

The sad and curious case of the chronic fatigue syndrome.

joene 🏴🍉 boosted

Federation Bot

@Federation_Bot · 3 months ago

"Op goede dagen mogen zijn katten even naar binnen."

"Er zijn zoveel mensen uit de maatschappij verdwenen. En dat is kennelijk acceptabel."

‘We weten niet hoeveel het er zijn, maar wel dat ze met veel zijn en dat ze verstoken zijn van zorg’, zegt de Rotterdamse longarts Merel Hellemons over de allerziekste groep. "En dat vind ik heel erg."

#PAISProtest #LongCovid #ME #PAIS #MillionsMissing #Solidarity

https://www.volkskrant.nl/kijkverder/v/2025/postcovid-covid-corona-patienten~v2184703/

https://archive.ph/2025.11.29-043515/https://www.volkskrant.nl/kijkverder/v/2025/postcovid-covid-corona-patienten~v2184703/

Federation Bot

@Federation_Bot · 3 months ago

"Op goede dagen mogen zijn katten even naar binnen."

"Er zijn zoveel mensen uit de maatschappij verdwenen. En dat is kennelijk acceptabel."

#PAISProtest #LongCovid #ME #PAIS #MillionsMissing #Solidarity

https://www.volkskrant.nl/kijkverder/v/2025/postcovid-covid-corona-patienten~v2184703/

https://archive.ph/2025.11.29-043515/https://www.volkskrant.nl/kijkverder/v/2025/postcovid-covid-corona-patienten~v2184703/

Shauna GM boosted

Lia Pas

@lia_pas@vis.social · 6 months ago

#SciArtSeptember Day 9: vanishing • The term #MillionsMissing is used for #MECFS advocacy since most people with the disease—like myself—rarely have energy to leave their homes. My #Sciart #embroidery body map (2016) illustrates the invisible symptoms I experienced at the onset of ME/CFS.

Body Map (2016). An outline of a naked woman is embroidered on linen in the same bone white colour as the linen. She stands legs together, her right hand covering her groin, her left hand, palm up, extended slightly to her side. She looks to the right. Her entire body except for her belly is covered in intricate markings representing different neurological sensations. Her face is a mask of green lines, feathery grey lines cover her shoulders and chest. There is a thick band of intricate burgundy stitching around her waist. Her forearms and hands are covered in thick blue undulant lines. Her right leg has bands of burgundy along the muscles, with small dots around them. Her inner left leg has a thick line of blue running up it, with thin branches spreading towards her outer leg.

Lia Pas

@lia_pas@vis.social · 6 months ago

Nyx Mir

@nyxmir@vis.social · 7 months ago

Today is #SevereMEAwarenessDay . Here is the annual incredible gallery of art, writing, and video by people with severe ME/CFS

https://www.meartistsproject.com/severe-me-artists-project-2025?mc_cid=9ce95da3a4

#MECFS #MillionsMissing #ChronicIllness #DisabledArt #DisabledJoy