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ahimsa
ahimsa
@ahimsa_pdx@disabled.social  ·  activity timestamp 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.
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.
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ahimsa
ahimsa
@ahimsa_pdx@disabled.social  ·  activity timestamp 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.
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.
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ahimsa
ahimsa
@ahimsa_pdx@disabled.social  ·  activity timestamp 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

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.
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.
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.
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ahimsa
ahimsa
@ahimsa_pdx@disabled.social  ·  activity timestamp 4 days ago

More quotes:

"ME/CFS has been psychologised by a framework known as the biopsychosocial model
...

But the PACE study has since been conclusively debunked."

David Tuller has written at length on virology.ws about the many problems with the PACE trial:

https://virology.ws/2015/10/21/trial-by-error-i

@mecfs @longcovid

#MEcfs #PwME #PEM #PACEtrial

The PACE trial, conducted in 2011 to examine ME/CFS, was the most expensive study of the disease at the time, partly funded by the Department for Work and Pensions and then published in the Lancet. It purported to demonstrate that ME/CFS patients could recover with a regime of therapy and exercise designed to break bad mental and physical habits. PACE was uncritically accepted by public agencies and media around the world, and it would be used to influence international treatment guidelines for ME/CFS.

But the PACE study has since been conclusively debunked. Its multiple faults include data manipulation, questionable methodology, and conflicts of interest. College courses now use it as an object lesson in how not to conduct a clinical trial, and a member of the UK parliament called it “one of the greatest medical scandals of the 21st century.” 

Among its many absurdities:

The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already “recovered” on those indicators–even before any treatment. In fact, 13 percent of the study sample was already “recovered” on one of these two measures at the start of the study.
The PACE trial, conducted in 2011 to examine ME/CFS, was the most expensive study of the disease at the time, partly funded by the Department for Work and Pensions and then published in the Lancet. It purported to demonstrate that ME/CFS patients could recover with a regime of therapy and exercise designed to break bad mental and physical habits. PACE was uncritically accepted by public agencies and media around the world, and it would be used to influence international treatment guidelines for ME/CFS. But the PACE study has since been conclusively debunked. Its multiple faults include data manipulation, questionable methodology, and conflicts of interest. College courses now use it as an object lesson in how not to conduct a clinical trial, and a member of the UK parliament called it “one of the greatest medical scandals of the 21st century.” Among its many absurdities: The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already “recovered” on those indicators–even before any treatment. In fact, 13 percent of the study sample was already “recovered” on one of these two measures at the start of the study.
The PACE trial, conducted in 2011 to examine ME/CFS, was the most expensive study of the disease at the time, partly funded by the Department for Work and Pensions and then published in the Lancet. It purported to demonstrate that ME/CFS patients could recover with a regime of therapy and exercise designed to break bad mental and physical habits. PACE was uncritically accepted by public agencies and media around the world, and it would be used to influence international treatment guidelines for ME/CFS. But the PACE study has since been conclusively debunked. Its multiple faults include data manipulation, questionable methodology, and conflicts of interest. College courses now use it as an object lesson in how not to conduct a clinical trial, and a member of the UK parliament called it “one of the greatest medical scandals of the 21st century.” Among its many absurdities: The study included a bizarre paradox: participants’ baseline scores for the two primary outcomes of physical function and fatigue could qualify them simultaneously as disabled enough to get into the trial but already “recovered” on those indicators–even before any treatment. In fact, 13 percent of the study sample was already “recovered” on one of these two measures at the start of the study.
https://virology.ws

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

By David Tuller, DrPH David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of Cal ...
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