#Tag · bonfire.cafe

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#POTS @pots

Micro-Recovery: The Art of Resting Before You Crash

Tiny pauses that protect your system and remind your body it’s safe to rest.

Tom Kindlon

@tomkindlon@disabled.social · yesterday

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

Micro-Recovery: The Art of Resting Before You Crash

Tiny pauses that protect your system and remind your body it’s safe to rest.

Billy Smith boosted

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Sympathetic article in a Scottish local newspaper

https://www.pressandjournal.co.uk/fp/politics/6915777/aberdeen-chronic-fatigue-me/

“There’s plenty of cases where folk have done the graded exercise, and now they’re in wheelchairs,”

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

Aberdeen woman reveals chronic fatigue nightmare after struggle to prove she wasn’t just ‘tired’
Amanda Stephen says she was never believed by doctors who thought she was just depressed - but hopes a corner is now being turned.

Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson
Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson — Aberdeen woman reveals chronic fatigue nightmare after struggle to prove she wasn’t just ‘tired’ Amanda Stephen says she was never believed by doctors who thought she was just depressed - but hopes a corner is now being turned. Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Sympathetic article in a Scottish local newspaper

https://www.pressandjournal.co.uk/fp/politics/6915777/aberdeen-chronic-fatigue-me/

“There’s plenty of cases where folk have done the graded exercise, and now they’re in wheelchairs,”

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

Alex Akselrod boosted

Tom Kindlon

@tomkindlon@disabled.social · last month

UK press release:

Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities

https://precisionlife.com/news-and-events/me-genetics-study

Paper:
https://www.medrxiv.org/content/10.64898/2025.12.01.25341362v2

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

PRESS RELEASE
Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities
The study reinforces that ME is a complex multisystemic condition with a clear genetic basis and lays the foundation for future clinical trials that could be faster to recruit and more likely to succeed
Read our FAQs

OXFORD, UK – 4 December 2025 – PrecisionLife today announced new findings from the most detailed genetic analysis of myalgic encephalomyelitis (ME, also known as ME/CFS) ever conducted, revealing more than 250 core genes associated with the disease, including 76 genes linked with long COVID, and uncovering dozens of drug repurposing opportunities supported by genetic biomarker tests, offering potential for faster and lower-risk routes to developing targeted treatments.

The study, now available as a pre-print and submitted for peer review, applied PrecisionLife's AI-led combinatorial analytics platform to analyze genomic data from two DecodeME cohorts together with UK Biobank to confirm reproducibility of results across three independent datasets. The analysis identified 7,555 genetic variants (including the 8 identified by the recent DecodeME GWAS study ), that were consistently associated with increased disease risk in three different populations. — PRESS RELEASE Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities The study reinforces that ME is a complex multisystemic condition with a clear genetic basis and lays the foundation for future clinical trials that could be faster to recruit and more likely to succeed Read our FAQs OXFORD, UK – 4 December 2025 – PrecisionLife today announced new findings from the most detailed genetic analysis of myalgic encephalomyelitis (ME, also known as ME/CFS) ever conducted, revealing more than 250 core genes associated with the disease, including 76 genes linked with long COVID, and uncovering dozens of drug repurposing opportunities supported by genetic biomarker tests, offering potential for faster and lower-risk routes to developing targeted treatments. The study, now available as a pre-print and submitted for peer review, applied PrecisionLife's AI-led combinatorial analytics platform to analyze genomic data from two DecodeME cohorts together with UK Biobank to confirm reproducibility of results across three independent datasets. The analysis identified 7,555 genetic variants (including the 8 identified by the recent DecodeME GWAS study ), that were consistently associated with increased disease risk in three different populations.

phildini boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

Cat Lady's Quilt.
catladysquilts +Chroniclllness 06/28/25
This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all. — Cat Lady's Quilt. catladysquilts +Chroniclllness 06/28/25 This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all.

Tom Kindlon

@tomkindlon@disabled.social · last month

UK press release:

Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities

https://precisionlife.com/news-and-events/me-genetics-study

Paper:
https://www.medrxiv.org/content/10.64898/2025.12.01.25341362v2

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

Billy Smith boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

"How to Help With ME/CFS and Long COVID Disability Claims"

https://www.medscape.com/viewarticle/how-help-me-cfs-and-long-covid-disability-claims-2025a1000x2z

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

Anke boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

Survey opportunity:
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ)

English:
https://www.soscisurvey.de/V-PEM-AQ_english/

German:
https://www.soscisurvey.de/V-PEM-Q/

Questionnaire is estimated to take 20 minutes

Screenshot from latest Science for ME weekly update

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

Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ)
Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German. — Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

"How to Help With ME/CFS and Long COVID Disability Claims"

https://www.medscape.com/viewarticle/how-help-me-cfs-and-long-covid-disability-claims-2025a1000x2z

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

Survey opportunity:
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ)

English:
https://www.soscisurvey.de/V-PEM-AQ_english/

German:
https://www.soscisurvey.de/V-PEM-Q/

Questionnaire is estimated to take 20 minutes

Screenshot from latest Science for ME weekly update

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

Chip Butty boosted

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements
CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required.
Overnight Care Guidance
Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required.
Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance.
Environment: Ensure call bell, water, and medications are within reach before settling for the night.
Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal.
Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated.
Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end.
Personal Care - Showering and Hygiene
Daily shower prompts are not required. Please be guided by the patient as to when capacity allows.
General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms.
Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated. — Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

Seeing is Believing:Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s & Quebec’s Social Benefits Tribunals

https://digitalcommons.schulichlaw.dal.ca/dlj/vol48/iss2/1/

"advocating for a shift away from entrenched stereotypes towards a more inclusive & equitable system"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #chronicillness
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals
Authors
Pascale Malenfant, McGill University Faculty of Law

Keywords
disability, hidden disability, health law, social benefits, administrative law, ideal victim

Abstract
The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system — Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals Authors Pascale Malenfant, McGill University Faculty of Law Keywords disability, hidden disability, health law, social benefits, administrative law, ideal victim Abstract The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

"With other people around, my body generates more adrenaline and I become more lively than I really am. Also because I want a visit to be a nice experience, for the other person. But it invariably results in a crash."

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

Tom Kindlon

@tomkindlon@disabled.social replied · 3 months ago

3/
"And on the other hand I find it difficult to really show others how little I can do. That’s an unimaginably vulnerable feeling."

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

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

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

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

🧵
"How I’m really doing"

https://meglobalchronicle.wordpress.com/2024/12/08/how-im-really-doing/

How appearances can be deceiving in terms of what people with ME can do consistently.

"So what people see when I post pictures of an outing are really exceptions based on adrenaline."

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

How I’m really doing
Gepubliceerd op 8 december 2024
Yesterday, a good friend asked me what I am truly capable of doing. For example, whether I can get dressed and go downstairs every day. Whether I can make tea or coffee for myself.

My answer:“No, I cannot get dressed every day. In fact, I haven’t done that in ages. Making tea and coffee isn’t that easy. If I do, it’s at the expense of doing something else.

For a while I had a kettle with hot water next to my bed but I spilled too often while pouring and as a result burnt myself.

I go downstairs on good days to have my meal lying on the couch. That’s possible for about three to four times a week But today I washed my hair and then I can’t do that.

So what people see when I post pictures of an outing are really exceptions based on adrenaline. — How I’m really doing Gepubliceerd op 8 december 2024 Yesterday, a good friend asked me what I am truly capable of doing. For example, whether I can get dressed and go downstairs every day. Whether I can make tea or coffee for myself. My answer:“No, I cannot get dressed every day. In fact, I haven’t done that in ages. Making tea and coffee isn’t that easy. If I do, it’s at the expense of doing something else. For a while I had a kettle with hot water next to my bed but I spilled too often while pouring and as a result burnt myself. I go downstairs on good days to have my meal lying on the couch. That’s possible for about three to four times a week But today I washed my hair and then I can’t do that. So what people see when I post pictures of an outing are really exceptions based on adrenaline.

Jess Mahler boosted

Tom Kindlon

@tomkindlon@disabled.social · 6 months ago

I have just donated to "What Doesn't Kill You" https://whatdoesntkillyou.movie/

Documentaries can be a powerful way to raise awareness & understanding along with empathy.
After looking at some clips and reading this https://www.s4me.info/threads/what-doesnt-kill-you-forthcoming-documentary.45051/ , I'm hopeful this will be good.

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

About What Doesn't Kill You
✓
Coming in 2025
✓
100% of profit reinvested in ME/CFS research and education
"What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease.

Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit.

While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources.

Our Mission
To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care. — About What Doesn't Kill You ✓ Coming in 2025 ✓ 100% of profit reinvested in ME/CFS research and education "What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease. Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit. While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources. Our Mission To illuminate the realities of ME/CFS, fostering empathy, awareness, and the urgent need for proper diagnosis and care.

Tom Kindlon

@tomkindlon@disabled.social · 6 months ago

I have just donated to "What Doesn't Kill You" https://whatdoesntkillyou.movie/

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