@tomkindlon@disabled.social
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tomkindlon

@tomkindlon@disabled.social

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.

With ME/CFS 35 years, severely affected 29 years. Health has deteriorated post Covid (March 2022).

Irish ME/CFS Association* trustee 26 years. 26 publications in peer-reviewed journals.

MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie

This profile is from a federated server and may be incomplete. Browse more on the original instance.

tomkindlon, to mecfs
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Approximately 400 people protested on Saturday 11 may at Federal Square in Bern in Switzerland for better care for ME/CFS patients. Chantal Britt, president of the Long Covid Switzerland association helped to organize the protest. She pleaded to establish centers of expertise and promote research on ME/CFS.

Google translation:
https://www-rts-ch.translate.goog/info/suisse/2024/article/manifestation-a-berne-pour-une-meilleure-prise-en-charge-du-syndrome-de-fatigue-chronique-28499381.html?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

@longcovid
@mecfs

@mecfs_de

tomkindlon, to mecfs
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A ME/CFS Awareness Day event was organized in Hungary. Several ME/CFS videos were shown and discussed. The event was video-recorded and can be watched on Facebook.

https://www.facebook.com/share/v/fZ8Zmy6jrEGgJSEd/?mibextid=KsPBc6

#MEcfs #CFS #PwME #krónikusfáradtságszindróma @mecfs

tomkindlon, to mecfs
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A 'Liegenddemo', a demonstration where people lay flat on the ground, was organized on 11 May in Berlin to raise awareness of ME/CFS. Prof. Scheibenbogen and the German Minister of Health gave a short speech.

Recording (in German)
https://www.youtube.com/watch?v=6RIlCxgSyDA


@mecfs_de

tomkindlon, to mecfs
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Opinion piece by a journalist about the lack of care for ME patients in Sweden.

Google translation:
https://www-altinget-se.translate.goog/artikel/me-patienter-ses-som-braakstakar-med-hjarnspoken?_x_tr_sl=sv&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

"Certain groups of patients are more susceptible to negligence, poor care & unethical treatment than others, & ME patients are such a group"

@mecfs

tomkindlon, to mecfs
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An interview by David Tuller DrPH with patient advocate Anil van der Zee about his video (embedded at link) titled "The Prison of M.E." on living with severe ME made for the ME Awareness Day.

https://virology.ws/2024/05/14/trial-by-error-anil-van-der-zees-new-video-on-living-with-severe-me/

@severeme @mecfs

tomkindlon, to mecfs
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Recording when ME/CFS Research Roadmap was discussed during the National Advisory Neurological Disorders and Stroke (NANDS) Council meeting on Wed, May 15.

2:22:06-3:27:20

https://videocast.nih.gov/watch=54421

@mecfs

tomkindlon, to mecfs
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This agony aunt question-and-answer is also presumably in the UK Sun newspaper

https://www.thesun.ie/dear-deidre/13026505/ashamed-myself-chronic-illness-diagnosis/


@mecfs

tomkindlon, to mecfs
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From Mirame Arts:

We have produced a short film about #MECFS patients‘ prejudices. The film shows artistically how the disease isolates patients by breaking even their closest bonds through a lack of understanding from friends, partners, and relatives.
Director: Béla Baptiste
Camera: Edward Bally

#WorldMEDay #mecfs #mecfsawareness #mecfsawarenessday @mecfs #cfs #pwme

video/mp4

tomkindlon, to mecfs
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On #WorldMEDay, we come together as a #GlobalVoiceForME. Millions more are developing #MECFS triggered by #COVID. This is a global health crisis.

We demand:
Recognition
Research
Respect

Take action to call on your country to become a #GlobalVoiceForME at www.worldmeday.org

@mecfs #mecfs #cfs #pwme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

video/mp4

tomkindlon, to mecfs
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🧵
Has ME/CFS's Time Finally Come at the NIH? The Vicky Whittemore Interview

A 1-hour conversation between Cort Johnson & Vicky Whittemore from NIH who is "involved in virtually everything of consequence happening with at the NIH"

https://www.healthrising.org/blog/2024/05/13/nih-chronic-fatigue-syndrome-whittemore/
@mecfs


1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

Cort Johnson has also done a write-up of the interview in which he summarises:
“While ME/CFS’s time at the NIH has clearly not finally come, the news for ME/CFS in general is encouraging. Interest in it and post-viral diseases is up significantly. Vicky feels the field has grown enormously since 2015, and I agree. By bringing together consortiums and think tanks together, Vicky Whittemore is doing what she can with what she has.”
@mecfs

tomkindlon, to cfs
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May 20 press release:

60 Degrees Pharmaceuticals Funds Babesia spp Testing in [ ] Patient Samples in NC [North Carolina, USA] State College of Veterinary Medicine Study

https://www.globenewswire.com/news-release/2024/05/20/2884789/0/en/60-Degrees-Pharmaceuticals-Funds-Babesia-spp-Testing-in-Chronic-Fatigue-Patient-Samples-in-NC-State-College-of-Veterinary-Medicine-Study.html

@mecfs

tomkindlon, to mecfs
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Dutch Brain Bank starts brain donor program for /

Google-translation from Dutch to English,

https://herseninstituut-nl.translate.goog/nieuws/nederlandse-hersenbank-start-hersendonorprogramma-voor-myalgische-encefalomyelitis-chronisch-vermoeidheidssyndroom/?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

@mecfs

tomkindlon, to mecfs
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New from UK team:

A systematic review of quantitative EEG findings in , and

Free full text:
https://www.sciencedirect.com/science/article/pii/S1388245724001445

@longcovid @mecfs

@fibromyalgia

tomkindlon, to mecfs
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BBC Chronic fatigue syndrome: Protestors call for specialist ME services

https://www.bbc.com/news/uk-northern-ireland-69000501

Article about a demonstration for specialist ME services in Northern Ireland. Interviews with Joan McParland, founder of Hope 4 ME and Fibo NI, Rosie Pigeon and Rebecca Logan

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Post-Exertional Mayonnaise ME and the cult-like nature of psychologisation

https://youtu.be/qxQmMopanY0

Description from @s4me update:

“Podcast interview with Eliza Charley. Highly informed and very well articulated discussion of the experiences of medical, societal and self-gaslighting in the context of medically-induced stigma”

@mecfs

tomkindlon, to mecfs
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Recording of 13-minute presentation to recent BACME conference
https://youtu.be/UnZ7L905y6M?si=-JnilaSdhzwG-VnC

Features:
Claire Dransfield, Research Manager, Action for ME
Prof Chris Ponting Principal Investigator, DecodeME @cgatist.bsky.social

@mecfs

1/

tomkindlon,
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2/

Includes findings from the questionnaire part of the study showing thousands of pwME report that pacing is helpful, CBT is not helpful & GET causes harm. Chris Ponting also highlighted the valuable contribution of partnership with patients.


@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Pleased to be able to support David Tuller DrPH to help him continue his important work on ME, , &
" "

He has particularly focused on (bio)psychosocial
claims/researchers:we've learned they need to be watched closely
https://crowdfund.berkeley.edu/project/42302

@mecfs @longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Upcoming BBC Radio 4 programme:

" #LongCovid : Mind Over Matter?"
https://www.bbc.co.uk/programmes/m001zg5q
20:00 May 21 UK time.

I was among a number of people from the ME community that Rachel spoke to to get background information. I'm hopeful this will be good.

A recording should be available later at the link I believe.

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

tomkindlon,
@tomkindlon@disabled.social avatar

2/
This was posted today by a UK local ME group leader:

"Sounds a bit like the Lightning Process. One of our members became suicidal after the treatment. Others that did not respond were told they were doing it wrong. Very dangerous."

@longcovid @mecfs

tomkindlon, to mecfs
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Katie Johnstone:

I did a presentation on BACME, the British Association of Clinicians in #MECFS. BACME has great influence on the treatment of people with ME, yet they cling to outdated & harmful ideas.

https://youtu.be/9_Ee7HGd1Ng?si=UqGx_OA832vTxaTv

I haven’t watched so far but has seen some praise for it

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps

tomkindlon, to mecfs
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🧵
An open letter to Anna Gregorowski, chair of BACME (British Association of Clinicians in ME/CFS), from Members of the ME community, facilitated by the Chronic Collaboration.

https://organise.network/actions/petition-an-open-letter-to-anna-gregorow-Nks6ZAJG

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

tomkindlon,
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2/

It highlights failures of BACME to fully update their materials to comply with NICE guidelines, and failure of clinics run by members of BACME to move away from harmful past practices.

"Moreover, current cases of the NHS neglecting people living with very severe ME are being exacerbated due to the NHS trusts claiming they are following BACME guidance – not NICE guidelines."

The letter is available for added signatures and comments.

#CFS #MEcfs #PwME
@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
I was fortunate to experience a nice family celebration today in aid of the Irish ME/CFS Association @irishmecfsassociation
https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation .

Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

5/

I can now announce we’ve reached €500 from #BlueSunday2023 for the Irish ME/CFS Association @IrishMECFSAssociation

Pleased to help raise this for the Association’s important work.

#PwME #MEcfs @mecfs

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