@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.

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(UK)
"Government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit"

https://www.cso.scot.nhs.uk/toolkit-now-available-to-help-me-cfs-researchers/

@mecfs

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MEAction : Celebrating An Impactful Campaign

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

"Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS."

@mecfs

1/

tomkindlon,
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2/

In the UK, UK advocates pulled off a wonderful Postcard to Doctors Campaign encouraging medication professionals to take a CPD module on ME"

@mecfs

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NHS England Launches New E-learning Module on ME/CFS - ME Association article

https://meassociation.org.uk/2024/05/nhs-england-launches-new-e-learning-module-on-me-cfs

MEA's article includes a summary of the content of the module which covers definition, causes, symptoms, management & links to ME organisations.

Discussion thread:
https://www.s4me.info/threads/me-association-nhs-england-launches-new-e-learning-module-on-me-cfs.38610/

@mecfs

1/

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The European ME Coalition (EMEC) call upon candidates in the European elections to commit to supporting individuals suffering ME/CFS by endorsing the ME/CFS pledge.

You can help by contacting the candidates for the European elections in your country and ask them to support the ME/CFS pledge. EMEC has drafted a template letter that you can customize.

https://europeanmecoalition.com/the-me-cfs-pledge-for-the-european-elections/

@mecfs

1/

tomkindlon, to mecfs
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New:
Development of Epidemiological Research Guidelines for / in Canada

Free:
https://www.preprints.org/manuscript/202405.1571/v1

@mecfs

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Upcoming 16-week trial in Canada led by Luis Nacul:

Low-dose naltrexone for post-COVID fatigue syndrome: a study protocol for a double-blind, randomised trial in British Columbia

Free full text:
https://bmjopen.bmj.com/content/14/5/e085272

Hashtags:
@longcovid

@mecfs

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UK Quadram Institute New study to shine a light on ME

https://quadram.ac.uk/new-study-to-shine-a-light-on-me/

Researchers from the Quadram Institute and University of East Anglia are testing the feasibility of red light therapy for people with ME. This pilot study, called Light ME Up, is being supported by the charity Invest in ME Research @invest_in_me_research

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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Open Medicine Foundation:
Itaconate Trap Study - Armstrong and Phair

https://www.omf.ngo/itaconate-trap-study/

"Objectives: Explore the itaconate trap and other potential traps in central carbon metabolism. Build pathways of central carbon metabolism. Develop kinetic models to try predict potential “weakness” points. Test the hypothesis experimentally."

@mecfs

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Develop Microfluidic-based Diagnostic Approaches for / (ME/CFS)

Abstract for embargoed thesis (at UC Davis)
https://escholarship.org/uc/item/0fm949w9#main

@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
#LongCovid #PwLC @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs_de

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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

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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

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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

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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

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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

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From Mirame Arts:

We have produced a short film about 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

@mecfs

video/mp4

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On , we come together as a . Millions more are developing triggered by . This is a global health crisis.

We demand:
Recognition
Research
Respect

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

@mecfs

video/mp4

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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 #MECFS at the NIH"

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

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/

tomkindlon,
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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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tomkindlon,
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A little reminder about this webinar which is on this Tuesday.


@mecfs

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