#Tag · bonfire.cafe

Quixoticgeek boosted

Tom Kindlon

Auckland, New Zealand study that still needs #MEcfs participants:

Investigating alterations in the expression of small RNA molecules (miRNA) in ME/CFS (and Long Covid-ME/CFS)

More info
https://www.s4me.info/threads/news-from-aotearoa-new-zealand-and-the-pacific-islands.4230/post-676986

Please share widely

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

A participant in this study posted on FB today that the research team is still looking for more moderate / severe pwME/CFS. A limiting factor is that they need to be well enough to be able to get themselves to a blood collection point in Grafton close to Auckland City hospital. Once there apparently access is fairly easy and a parking spot can be arranged

Science for ME

News from Aotearoa/New Zealand and the Pacific Islands

Just for a Kiwi audience: TVNZ+ has an overall excellent 16min documentary on young adults with Long Covid, one of the participants also has ME. A short clip of this was also shown on the 6pm news today You have to be logged in to watch. Under 'News' look for “Offered rest home care at 24...

Tom Kindlon

@tomkindlon@disabled.social · 2 days ago

Auckland, New Zealand study that still needs #MEcfs participants:

Investigating alterations in the expression of small RNA molecules (miRNA) in ME/CFS (and Long Covid-ME/CFS)

More info
https://www.s4me.info/threads/news-from-aotearoa-new-zealand-and-the-pacific-islands.4230/post-676986

Please share widely

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

Science for ME

News from Aotearoa/New Zealand and the Pacific Islands

Esther Payne :bisexual_flag: boosted

ahimsa

@ahimsa_pdx@disabled.social · 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.

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 ...

Esther Payne :bisexual_flag: boosted

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

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

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.

ahimsa

@ahimsa_pdx@disabled.social · 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

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 ...

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.

Tom Kindlon

@tomkindlon@disabled.social · 4 days ago

Great to see this new sympathetic and well-researched in-depth article 👍👏

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

Note: only a portion of it is available initially; one needs to subscribe to a free email list to see the full piece

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

Quillette

The Cost of Indifference

The sad and curious case of the chronic fatigue syndrome.

Esther Payne :bisexual_flag: boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

3/
From "Pacing in the Real World"

Another blogpost I liked a lot by this OT who specialises in ME/CFS & long Covid

Contains lots of practical tips. As she says,an emphasis is harm reduction rather than perfection

https://onelifelivedwell.substack.com/p/pacing-in-the-real-world

#MEcfs #LongCovid #CFS #PwME #Pacing @mecfs @longcovid

People are often told pacing requires consistency and rigid structure, as if symptoms respond to spreadsheets, but in years of working with clients, I’ve learned that the best pacing is responsive. Sometimes you can’t avoid doing the thing, but you can lower the cost of doing it.

Instead of the all-or-nothing approach (“Don’t overdo it”), try:

Do the thing differently

Do the thing slower

Do a little less of the thing

Examples I hear from clients:

Cut chores in half. Laundry becomes “just wash, fold later.”

Skip the second errand. One stop instead of three.

Delay what isn’t urgent. Dishes can wait. Replies can wait.

Sit for everything. Food prep, brushing teeth, makeup, folding clothes.

Sometimes the most radical act of self-preservation is sitting down.

Literally. — People are often told pacing requires consistency and rigid structure, as if symptoms respond to spreadsheets, but in years of working with clients, I’ve learned that the best pacing is responsive. Sometimes you can’t avoid doing the thing, but you can lower the cost of doing it. Instead of the all-or-nothing approach (“Don’t overdo it”), try: Do the thing differently Do the thing slower Do a little less of the thing Examples I hear from clients: Cut chores in half. Laundry becomes “just wash, fold later.” Skip the second errand. One stop instead of three. Delay what isn’t urgent. Dishes can wait. Replies can wait. Sit for everything. Food prep, brushing teeth, makeup, folding clothes. Sometimes the most radical act of self-preservation is sitting down. Literally.

Pacing in the Real World

Where stopping isn't always an option.

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

"Basically, your body has needs.

Your life has demands.

They don’t always shake hands.

So instead of perfection, think about harm reduction.

Not: How do I avoid overdoing it ever again?
But: How do I soften the impact when life doesn’t give me a choice?"

#MEcfs #LongCovid #CFS #PwME @mecfs @longcovid

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

3/
From "Pacing in the Real World"

Another blogpost I liked a lot by this OT who specialises in ME/CFS & long Covid

Contains lots of practical tips. As she says,an emphasis is harm reduction rather than perfection

https://onelifelivedwell.substack.com/p/pacing-in-the-real-world

#MEcfs #LongCovid #CFS #PwME #Pacing @mecfs @longcovid

Pacing in the Real World

Where stopping isn't always an option.

Jess Mahler boosted

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

"Basically, your body has needs.

Your life has demands.

They don’t always shake hands.

So instead of perfection, think about harm reduction.

Not: How do I avoid overdoing it ever again?
But: How do I soften the impact when life doesn’t give me a choice?"

#MEcfs #LongCovid #CFS #PwME @mecfs @longcovid

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

"Pacing in the Real World"

Another blogpost I liked a lot by this OT who specialises in ME/CFS & long Covid.

Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection

https://onelifelivedwell.substack.com/p/pacing-in-the-real-world

#MEcfs #LongCovid #CFS #PwME #Pacing #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid

Another blogpost I liked a lot by this OT who specialises in ME/CFS and long Covid.
Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection
"Pacing in the Real World"
https://onelifelivedwell.substack.com/.../pacing-in-the...
Headings:
1: Let’s start here: perfection is a myth (and honestly, a little rude).
2: Triage, a tool for days when everything feels urgent
3: Micro-recoveries (a tiny rebellion).
4: Positions matter more than you think
5: Help looks different when you don’t have a village.
6: Cognitive load counts too.
7: Lower the bar (I know, I know).
#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Pacing in the Real World

Where stopping isn't always an option.

Abby
Nov 10, 2025

Sometimes pacing can feel like a luxury for people who have margins, people who have extra hands, extra hours, extra anything. What do you do when the world still expects you to operate like nothing has changed, even when your body has? — Another blogpost I liked a lot by this OT who specialises in ME/CFS and long Covid. Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection "Pacing in the Real World" https://onelifelivedwell.substack.com/.../pacing-in-the... Headings: 1: Let’s start here: perfection is a myth (and honestly, a little rude). 2: Triage, a tool for days when everything feels urgent 3: Micro-recoveries (a tiny rebellion). 4: Positions matter more than you think 5: Help looks different when you don’t have a village. 6: Cognitive load counts too. 7: Lower the bar (I know, I know). #MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Pacing in the Real World Where stopping isn't always an option. Abby Nov 10, 2025 Sometimes pacing can feel like a luxury for people who have margins, people who have extra hands, extra hours, extra anything. What do you do when the world still expects you to operate like nothing has changed, even when your body has?

Pacing in the Real World

Where stopping isn't always an option.

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

"Basically, your body has needs.

Your life has demands.

They don’t always shake hands.

So instead of perfection, think about harm reduction.

Not: How do I avoid overdoing it ever again?
But: How do I soften the impact when life doesn’t give me a choice?"

#MEcfs #LongCovid #CFS #PwME @mecfs @longcovid

Esther Payne :bisexual_flag: boosted

Hari

@hari@mastodon.art · 3 weeks ago

Diary comics thread for hourly comics day ✏️ intro/9am

[read together in one place here https://www.patreon.com/posts/150040198 ]
#hourlycomicday #MEcfs #pwME #ChronicIllness

4 media

graphic reads ‘hourly comics day disability diaries’ with a drawing of me (white nonbinary guy w black facial scruff & short green hair) lying in bed looking shattered. Lower text reads ‘hello. I make comics, and—‘

“This year’s my 10 year anniversary of chronic illness (ME/CFS)” - a small cartoon of me with a balloon going ‘wow!!’ then ‘…wait.’
In an inset past year’s comic, I’m going ‘hopefully later I’ll be well enough to draw a little!’ but end up lying still in bed all day - ‘alas’.
“*8 years of my illness being “moderate to severe” = mostly bedbound, unable to walk down the street or prepare a meal without collapsing.” — “This year’s my 10 year anniversary of chronic illness (ME/CFS)” - a small cartoon of me with a balloon going ‘wow!!’ then ‘…wait.’ In an inset past year’s comic, I’m going ‘hopefully later I’ll be well enough to draw a little!’ but end up lying still in bed all day - ‘alas’. “*8 years of my illness being “moderate to severe” = mostly bedbound, unable to walk down the street or prepare a meal without collapsing.”

“I’ve been making a day of hourly comics every February since I first got ill” (some pics of many years worth of hourlies,w ith me waking up feeling exhausted, too ill to sit up)

“It can be hard, but it means a lot to share the reality of my daily life honestly and to hear from others in the same boat. So here’s Hourly comics day 2026” - a small baloon now reads ‘still here!’ next to the same drawing as the first, me now waking up. 9am - “good morning my body feels like it’s been run over by a train’

Hari

@hari@mastodon.art · 3 weeks ago

Diary comics thread for hourly comics day ✏️ intro/9am

[read together in one place here https://www.patreon.com/posts/150040198 ]
#hourlycomicday #MEcfs #pwME #ChronicIllness

4 media

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

"Pacing in the Real World"

Another blogpost I liked a lot by this OT who specialises in ME/CFS & long Covid.

Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection

https://onelifelivedwell.substack.com/p/pacing-in-the-real-world

#MEcfs #LongCovid #CFS #PwME #Pacing #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid

Pacing in the Real World

Where stopping isn't always an option.

Djoerd Hiemstra 🍉 boosted

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

🧵
A sympathetic & knowledgeable OT who specialises in #longCovid & ME/CFS reflects on the lessons from how the long Covid community came together and how it shows patient knowledge & expertise from lived experience is important in many ways.

She also highlights how the pandemic highlighted gaps in care for #MECFS, #POTS & related conditions

https://onelifelivedwell.substack.com/p/long-covid-began-with-somethings

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#PASC #PwLC #postcovid #postcovid19 @pots