Tom Kindlon
@tomkindlon.bsky.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.
With ME/CFS 36 years, severe ME 31 years.
@IrishMECFSAssoc trustee 28 years
26 publications in peer-reviewed journals
Social media: https://me-pedia.org/wiki/Tom_Kindlon
With ME/CFS 36 years, severe ME 31 years.
@IrishMECFSAssoc trustee 28 years
26 publications in peer-reviewed journals
Social media: https://me-pedia.org/wiki/Tom_Kindlon
Pinned
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
Reposted by Tom Kindlon
Irish Examiner letter from one of our members
She highlights
-difficulty she had in obtaining a payment
-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)
www.irishexaminer.com/opinion/your...
#MEcfs #CFS #PwME
She highlights
-difficulty she had in obtaining a payment
-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)
www.irishexaminer.com/opinion/your...
#MEcfs #CFS #PwME
November 27, 2025 at 3:26 PM
Irish Examiner letter from one of our members
She highlights
-difficulty she had in obtaining a payment
-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)
www.irishexaminer.com/opinion/your...
#MEcfs #CFS #PwME
She highlights
-difficulty she had in obtaining a payment
-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)
www.irishexaminer.com/opinion/your...
#MEcfs #CFS #PwME
From China
Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID
www.sciencedirect.com/science/arti...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID
www.sciencedirect.com/science/arti...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
November 27, 2025 at 1:48 AM
From China
Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID
www.sciencedirect.com/science/arti...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
Longitudinal assessment of pulmonary perfusion and ventilation defects in long COVID
www.sciencedirect.com/science/arti...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
From the US
Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries
dx.doi.org/10.1093/ofid...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries
dx.doi.org/10.1093/ofid...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
November 27, 2025 at 1:42 AM
From the US
Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries
dx.doi.org/10.1093/ofid...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
Clinical, Radiographic, and Physiological Correlates of Post-COVID-19 Dyspnea in Military Health System Beneficiaries
dx.doi.org/10.1093/ofid...
Screenshot from latest Science for ME weekly update
#LongCovid #Covidlung
Reposted by Tom Kindlon
Australia’s SBS Insight has a (problematic) episode on SBS.
One woman was denied a disability pension for some combo of POTS / MEcfs until she got a late identified Autism diagnosis.
Australia sees Autism as a more severe disability than it often is, and severe fatiguing disabilities as made up.
One woman was denied a disability pension for some combo of POTS / MEcfs until she got a late identified Autism diagnosis.
Australia sees Autism as a more severe disability than it often is, and severe fatiguing disabilities as made up.
"How to Help With ME/CFS and Long COVID Disability Claims"
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
November 26, 2025 at 6:32 PM
Australia’s SBS Insight has a (problematic) episode on SBS.
One woman was denied a disability pension for some combo of POTS / MEcfs until she got a late identified Autism diagnosis.
Australia sees Autism as a more severe disability than it often is, and severe fatiguing disabilities as made up.
One woman was denied a disability pension for some combo of POTS / MEcfs until she got a late identified Autism diagnosis.
Australia sees Autism as a more severe disability than it often is, and severe fatiguing disabilities as made up.
Reposted by Tom Kindlon
Physicians and other medical providers: our notes are being used for purposes they weren’t designed for and how we write them can have a profound impact on whether disabled patients are granted disability support
"How to Help With ME/CFS and Long COVID Disability Claims"
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
November 26, 2025 at 5:35 PM
Physicians and other medical providers: our notes are being used for purposes they weren’t designed for and how we write them can have a profound impact on whether disabled patients are granted disability support
"How to Help With ME/CFS and Long COVID Disability Claims"
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
November 26, 2025 at 5:06 PM
"How to Help With ME/CFS and Long COVID Disability Claims"
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
www.medscape.com/viewarticle/...
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 #LongCovid #CFS #PwME
Reposted by Tom Kindlon
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, December 3.
Hopefully we’ll see some of you there irishmecfs.org/blog/wednesd...
Carers/parents/similar welcome.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Hopefully we’ll see some of you there irishmecfs.org/blog/wednesd...
Carers/parents/similar welcome.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
November 26, 2025 at 2:09 PM
Reposted by Tom Kindlon
Heldere Facebookpost van @tomkindlon.bsky.social over de meest voorkomende triggers voor PEM (=Post Exertional Malaise).
#MECVS #LongCovid #PAIS #PEM
www.facebook.com/100064529957...?
#MECVS #LongCovid #PAIS #PEM
www.facebook.com/100064529957...?
November 26, 2025 at 10:57 AM
Heldere Facebookpost van @tomkindlon.bsky.social over de meest voorkomende triggers voor PEM (=Post Exertional Malaise).
#MECVS #LongCovid #PAIS #PEM
www.facebook.com/100064529957...?
#MECVS #LongCovid #PAIS #PEM
www.facebook.com/100064529957...?
From Germany:
"this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."
link.springer.com/10.1007/s004...
Screenshot from Science for ME update
#LongCovid #COVIDBrain
"this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."
link.springer.com/10.1007/s004...
Screenshot from Science for ME update
#LongCovid #COVIDBrain
November 26, 2025 at 1:47 AM
From Germany:
"this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."
link.springer.com/10.1007/s004...
Screenshot from Science for ME update
#LongCovid #COVIDBrain
"this study provides robust evidence of significant cognitive impairments in PASC patients, with attention, working speed, and lexical fluency being the most commonly affected domains."
link.springer.com/10.1007/s004...
Screenshot from Science for ME update
#LongCovid #COVIDBrain
Evidence for a severe cognitive subgroup in a comprehensive neuropsychological Post-COVID-19 syndrome classification
www.nature.com/articles/s41...
Screenshot from latest Science for ME weekly update
#LongCovid #COVIDBrain #NeuroPASC
www.nature.com/articles/s41...
Screenshot from latest Science for ME weekly update
#LongCovid #COVIDBrain #NeuroPASC
November 26, 2025 at 1:40 AM
Evidence for a severe cognitive subgroup in a comprehensive neuropsychological Post-COVID-19 syndrome classification
www.nature.com/articles/s41...
Screenshot from latest Science for ME weekly update
#LongCovid #COVIDBrain #NeuroPASC
www.nature.com/articles/s41...
Screenshot from latest Science for ME weekly update
#LongCovid #COVIDBrain #NeuroPASC
Reposted by Tom Kindlon
Why do these people keep promoting exercise studies with reported benefits that do not reach the threshold for clinical significance? Here's another one of these, from @jamanetworkopen.com: virology.ws/2025/11/21/t...
Trial By Error: Another Exercise Trial with Clinically Insignificant Findings | Virology Blog
By David Tuller, DrPH A recent study from JAMA Network Open, called “Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial,” dem ...
virology.ws
November 23, 2025 at 8:20 PM
Why do these people keep promoting exercise studies with reported benefits that do not reach the threshold for clinical significance? Here's another one of these, from @jamanetworkopen.com: virology.ws/2025/11/21/t...
Reposted by Tom Kindlon
Call to action: Congress has extended Telehealth until January 31,2026.
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
November 19, 2025 at 9:27 PM
Call to action: Congress has extended Telehealth until January 31,2026.
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
Reposted by Tom Kindlon
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
November 24, 2025 at 10:12 PM
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
Reposted by Tom Kindlon
Big step for people with #mecfs & #LongCovid in Germany: the BMFTR announces a “National Decade on Post-Infectious Diseases” with long-term research funding and a focus on diagnostics & treatments. #mecfsresearch #research
November 14, 2025 at 3:10 PM
Big step for people with #mecfs & #LongCovid in Germany: the BMFTR announces a “National Decade on Post-Infectious Diseases” with long-term research funding and a focus on diagnostics & treatments. #mecfsresearch #research
Reposted by Tom Kindlon
BBC Points West ran a very short 20-second clip on yesterday’s Westminster debate. Local MP Tessa Munt called for greater NHS support and investment for people with #MECFS. Unfortunately the segment used “extreme tiredness” to describe the main symptom.
November 21, 2025 at 5:00 PM
BBC Points West ran a very short 20-second clip on yesterday’s Westminster debate. Local MP Tessa Munt called for greater NHS support and investment for people with #MECFS. Unfortunately the segment used “extreme tiredness” to describe the main symptom.
Reposted by Tom Kindlon
New from the The Sick Times
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
November 21, 2025 at 5:54 PM
New from the The Sick Times
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
Reposted by Tom Kindlon
BBC Radio Somerset (12 mins) Charlie Taylor speaks to Julie and John Heath about their family, where three out of four members have been diagnosed with #MECFS — they discuss how the condition affects daily life and the profound impact on their family.
youtu.be/t-eIzxqmNWY?...
youtu.be/t-eIzxqmNWY?...
BBC Somerset - 3 out of family of 4 diagnosed with ME/CFS
YouTube video by Broken Battery
youtu.be
November 22, 2025 at 8:06 AM
BBC Radio Somerset (12 mins) Charlie Taylor speaks to Julie and John Heath about their family, where three out of four members have been diagnosed with #MECFS — they discuss how the condition affects daily life and the profound impact on their family.
youtu.be/t-eIzxqmNWY?...
youtu.be/t-eIzxqmNWY?...
Reposted by Tom Kindlon
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
November 22, 2025 at 11:23 AM
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
Reposted by Tom Kindlon
Former Team GB rower and #longCOVID campaigner @oonaghcousins.bsky.social spoke to Sky News in response to the COVID Inquiry. She highlighted how long-term illness was foreseeable and why a proper national strategy is urgently needed. Aired on 20/11/25 (5 mins).
youtu.be/-qZHg9PsE4c?...
youtu.be/-qZHg9PsE4c?...
Former Team GB Rower Oona Cousins Responds to the COVID Inquiry on Sky News
YouTube video by Broken Battery
youtu.be
November 22, 2025 at 4:43 PM
Former Team GB rower and #longCOVID campaigner @oonaghcousins.bsky.social spoke to Sky News in response to the COVID Inquiry. She highlighted how long-term illness was foreseeable and why a proper national strategy is urgently needed. Aired on 20/11/25 (5 mins).
youtu.be/-qZHg9PsE4c?...
youtu.be/-qZHg9PsE4c?...
Reposted by Tom Kindlon
Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
November 22, 2025 at 6:15 PM
Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
Reposted by Tom Kindlon
Segment from WELT (German TV) featuring Federal Research Minister Dorothee Bär discussing Germany’s National Decade Against Post-Infectious Diseases - €500 million for research including #MECFS and #LongCOVID. (English Subtitles - 3 mins)
youtu.be/f84TAp3D_Ng?...
youtu.be/f84TAp3D_Ng?...
Germany’s National Decade Against Post-Infectious Diseases (€500m Research Plan)
YouTube video by Broken Battery
youtu.be
November 24, 2025 at 10:09 AM
Segment from WELT (German TV) featuring Federal Research Minister Dorothee Bär discussing Germany’s National Decade Against Post-Infectious Diseases - €500 million for research including #MECFS and #LongCOVID. (English Subtitles - 3 mins)
youtu.be/f84TAp3D_Ng?...
youtu.be/f84TAp3D_Ng?...
Reposted by Tom Kindlon
Healthy volunteers signing up to the #AusMERegistry & donating blood to the #ausmebiobank give researchers the vital comparison data they need to uncover the biology behind #mecfs & #longcovid and discover effective treatments
👉 zurl.co/W6BsH zurl.co/YEf22
👉 zurl.co/W6BsH zurl.co/YEf22
November 19, 2025 at 9:00 PM
Healthy volunteers signing up to the #AusMERegistry & donating blood to the #ausmebiobank give researchers the vital comparison data they need to uncover the biology behind #mecfs & #longcovid and discover effective treatments
👉 zurl.co/W6BsH zurl.co/YEf22
👉 zurl.co/W6BsH zurl.co/YEf22
Reposted by Tom Kindlon
A summary of the Westminster Hall debate last week with (UK) MPs challenging the government's systemic indifference to #Pw/ME (and de facto, all energy limiting conditions). Thank you @tomkindlon.bsky.social
ME Research UK:
Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48
#MECFS #PwME #CFS
Details from last week's Westminster Hall debate on ME in quotes covering research funding, support for those with severe ME and the government's response - tinyurl.com/mw5nek48
#MECFS #PwME #CFS
November 25, 2025 at 6:42 PM
A summary of the Westminster Hall debate last week with (UK) MPs challenging the government's systemic indifference to #Pw/ME (and de facto, all energy limiting conditions). Thank you @tomkindlon.bsky.social
Reposted by Tom Kindlon
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 18, 2025 at 7:02 PM
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
Reposted by Tom Kindlon
Yesterday, MPs gathered in Westminster Hall to debate government support for people with ME and what needs to change. We’ve pulled together a summary of the key points, actions, and commitments discussed, using AI to assist in summarising the Westminster Hall debate transcript.
November 20, 2025 at 2:50 PM
Yesterday, MPs gathered in Westminster Hall to debate government support for people with ME and what needs to change. We’ve pulled together a summary of the key points, actions, and commitments discussed, using AI to assist in summarising the Westminster Hall debate transcript.