Tom Kindlon
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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
6.8K followers 200 following 6.8K posts
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
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 3d
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/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
Reposted by Tom Kindlon
mecfsresearch.bsky.social
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
a man standing in front of a blue background a blue oval with white text
November 14, 2025 at 3:10 PM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
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
Reposted by Tom Kindlon
abrokenbattery.bsky.social
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...
Key points from the article
November 21, 2025 at 5:54 PM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
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?...
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
Reposted by Tom Kindlon
abrokenbattery.bsky.social
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
Reposted by Tom Kindlon
abrokenbattery.bsky.social
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?...
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
Reposted by Tom Kindlon
abrokenbattery.bsky.social
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
Reposted by Tom Kindlon
abrokenbattery.bsky.social
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?...
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
Reposted by Tom Kindlon
emergeaustralia.bsky.social
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
A male in a navy t-shirt sitting in a chair with a woman in a pale t-shirt with her arms around him. The woman has a bandage on her arm showing how she just donated blood. Text "Join the AusME today: From one small act comes big hope." The AusME and Emerge Australia logos are on the tile.
November 19, 2025 at 9:00 PM
Reposted by Tom Kindlon
cambridgegill.bsky.social
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
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 5h
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
Photo of the UK parliament
November 25, 2025 at 6:42 PM
Reposted by Tom Kindlon
physiosforme.bsky.social
🚨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...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 18, 2025 at 7:02 PM
Reposted by Tom Kindlon
actionforme.bsky.social
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
Reposted by Tom Kindlon
actionforme.bsky.social
1/3

📢 Rescheduled: APPG on ME severe ME enquiry evidence session

📆 Wednesday, 10 December

⏰ 3.30pm – 5.30pm

Invite your local MP to attend 👇

actionforme.eaction.org.uk/appg-severem...

#pwME #SevereME #APPG

⬇️
Graphic featuring the Houses of Parliament under a blue sky. Overlaid text reads “Ask your MP to attend!” with an envelope icon. Below, a green banner says “Rescheduled: APPG on ME’s severe ME enquiry evidence session.” Logos for Action for ME, the ME Association, and the APPG on ME appear at the top.
November 25, 2025 at 11:00 AM
Reposted by Tom Kindlon
heatherhogan.bsky.social
Watching, digesting, processing, contextualizing, & writing about these conferences is intense work, but @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social never miss a beat. They're consistently doing journalism that no one else is doing.

Help @thesicktimes.org keep going? bit.ly/49AUf4t
November 25, 2025 at 6:14 PM
Reposted by Tom Kindlon
betsyladyzhets.bsky.social
Our recap of last week's Long COVID International Conference is up now at @thesicktimes.org! Featuring summaries of talks that we found most notable (and a few hints about interesting results that aren't public yet). thesicktimes.org/2025/11/25/i...
International Long COVID conference spotlights biomarker and mechanism research - The Sick Times
The event, now in its third year, also revealed updates about clinical trials and healthcare for the disease.
thesicktimes.org
November 25, 2025 at 6:04 PM
Reposted by Tom Kindlon
meassociation.org.uk
We’re joining the BigGive to fund a new study on what happens in muscle cells when people with ME/CFS experience PEM.
All donations from 2–9 Dec are doubled—sign up for a reminder & help support this vital research:

https://meassociation.org.uk/big-give-2025/

#MEAssociation #BigGive2025
November 17, 2025 at 3:26 PM
Reposted by Tom Kindlon
meassociation.org.uk
1/3: Since 2023, the MEA’s Ramsay Research Fund has been funding postmortem research in people with ME/CFS at the Manchester Brain Bank. 

Dr Charles Shepherd says, “Postmortem research has always been an important part of the portfolio of research that the MEA funds...

#MECFS
IMAGE DESCRIPTION; Photo of a doctor on a laptop. Photo of Dr Charles Shepherd. ME Association and Ramsay Research Fund logos. Heading - Post Mortem Research: Manchester Brain Bank. Read more.
November 18, 2025 at 1:30 PM
Reposted by Tom Kindlon
meassociation.org.uk
1/3: The late Kara Jane Spencer was a gifted singer-songwriter with Severe ME who dreamed of raising £100,000 to support post mortem research into ME/CFS.

When she released her debut album in 2020, her lyrical music connected deeply with people around the world...

#MECFS #pwME #KaraJane #SevereME
IMAGE DESCRIPTION: Photo of Kara Jane smiling in bed and holding her Chickens. Heading - Support Kara Jane's fundraising for post-mortem research into ME/CFS!
November 19, 2025 at 9:51 AM
Reposted by Tom Kindlon
meassociation.org.uk
In a major moment for our community, Tessa Munt MP has quoted directly from MEA policy work during a Westminster Hall debate on support for people with ME. 

Read the briefing that the MEA provided here: https://meassociation.org.uk/hmm2

#pwME #MECFS #MyalgicE #TakingThePIP #WelfareReforms
ME Association's Welfare Briefing for Westminster Hall Debate - The ME Association
In a major moment for our community, Tessa Munt MP […]
meassociation.org.uk
November 20, 2025 at 1:15 PM
Reposted by Tom Kindlon
meassociation.org.uk
Recently, we conducted two surveys; one to cover Diabetes, and the other to collect data on whether Metformin had any notable effect on your ME/CFS symptoms.

Please see the results on the blog: https://meassociation.org.uk/aavw

#pwME #MyalgicE #MECFS #Diabetes #Metformin
Website Survey: Diabetes Survey Results - The ME Association
Recently, we conducted two surveys; one to cover Diabetes, and […]
meassociation.org.uk
November 20, 2025 at 1:59 PM
Reposted by Tom Kindlon
meassociation.org.uk
Physios for ME: An international survey exploring the experiences of healthcare professionals living with Long COVID (with post-exertional malaise) and ME/CFS - closes 31st December at 6pm

www.physiosforme.com/hcpwithmesur...

#MECFS #LongCovid #HealthcareProfessionals
IMAGE DESCRIPTION: A healthcare worker exhausted at work to represent PEM. Title: Physios for ME: An international survey exploring the experiences of healthcare professionals living with Long COVID (with post-exertional malaise) and ME/CFS. With the Physios for ME and the ME Association logo.
November 21, 2025 at 9:31 AM
Reposted by Tom Kindlon
meassociation.org.uk
This year, we are doing the BigGive to fund a new research study - but what's this study about? And how may it help the ME/CFS community? 

Register for a reminder to donate here: https://meassociation.org.uk/big-give-2025/

#Donate #pwME #MECFS #MyalgicEncephalomyelitis #PEM
November 24, 2025 at 11:26 AM
Reposted by Tom Kindlon
meassociation.org.uk
1/3: Rescheduled: APPG on ME severe ME enquiry evidence session

Wednesday, 10 December

3.30pm – 5.30pm

Invite your local MP to attend https://actionforme.eaction.org.uk/appg-severeme-enquiry

#pwME #SevereME #APPG
Graphic featuring the Houses of Parliament under a blue sky. Overlaid text reads “Ask your MP to attend!” with an envelope icon. Below, a green banner says “Rescheduled: APPG on ME’s severe ME enquiry evidence session.” Logos for Action for ME, the ME Association, and the APPG on ME appear at the top
November 25, 2025 at 11:03 AM
Reposted by Tom Kindlon
meassociation.org.uk
Parliamentary Debate on ME/CFS: 'I will hold the minister's feet to the fire' MP Tessa Munt

Tessa Munt, MP, led the parliamentary debate on ME/CFS yesterday. 

Find out what happened, watch the video, and read Dr Charles Shepherd's comments: https://meassociation.org.uk/crs3

#pwME #MyalgicE #MECFS
Parliamentary Debate on ME/CFS: 'I will hold the minister's feet to the fire' MP Tessa Munt - The ME Association
Photos: Ashley Dalton ©House of Commons, Tessa Munt ©House of […]
meassociation.org.uk
November 20, 2025 at 12:26 PM
tomkindlon.bsky.social
ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. meres.uk/apply

#MEcfs #CFS #PwME
Photo of a science laboratory
November 25, 2025 at 3:24 PM