@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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The #LongCOVID Wearable Device Study is now recruiting participants in the USA.

Up to 100,000 participants who own wearables, and 500 who will be provided with wearables.

Protocol: https://clinicaltrials.gov/study/NCT05741112

Flyer: https://longcovid.scripps.edu/wp-content/uploads/2024/04/Long-COVID-Wearable-Study-flyer-202402.pdf

#PosturalOrthostaticTachycardiaSyndrome #POTS @pots #MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC

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pages 1 and 2 of the flyer here: https://longcovid.scripps.edu/wp-content/uploads/2024/04/Long-COVID-Wearable-Study-flyer-202402.pdf

tomkindlon, to mecfs
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"Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS [biopsychosocial] in and ME: How brain retraining therapies intersect with the biopsychosocial model"

https://longcovidadvocacy.substack.com/p/tin-foil-hat-territory-the-gupta

Hashtags:
@longcovid

@mecfs

tomkindlon,
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2/

Description from the Science for ME @s4me update:

UK Advertising Standards have upheld complaints against Gupta and LP founder Parker for making unfounded claims, yet they continue to dupe media and clinicians into supporting their programs.

#MEcfs #CFS #PwME #LongCovid #PwLC
@longcovid @mecfs

tomkindlon,
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3/

"This excellent article highlights the similarities of these methods with the unevidenced 'biopsychosocial' approach to ME/CFS which has dominated research and treatments for years and is now infiltrating Long Covid, including in NHS clinics."

#MEcfs #CFS #PwME #postcovid #postcovid19 #LC
@LongCovidAdvoc @longcovid @mecfs

tomkindlon,
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4/

"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."

@LongCovidAdvoc @longcovid @mecfs

tomkindlon, to mecfs
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BBC Takes on Lightning Process and Highlights Perspectives of the So-Called “Anti-Recovery Activists” by David Tuller DrPH

https://virology.ws/2024/05/24/trial-by-error-bbc-takes-on-lightning-process-and-highlights-perspectives-of-the-so-called-anti-recovery-activists/

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/

tomkindlon,
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2/

A short write-up about BBC's critical radio documentary/article about the unfounded claims that Long Covid can be treated by Lightning Process. Tuller calls it a well-done project and gives kudos to the journalist Shraer and the producer.

@longcovid @mecfs

tomkindlon, to mecfs
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16-page Australian report: " Urgent recommendations to improve care for people with ME/CFS and "
https://www.emerge.org.au/wp-content/uploads/2024/05/FINAL-Shining-a-Light-on-Recommendation-8-Emerge-Australia.pdf

This was launched in Parliament House Canberra on March 27 & presented to a health minister on May 9:
https://www.emerge.org.au/urgent-recommendations-to-improve-care/

@longcovid


@auscovid19
@mecfs

tomkindlon, to mecfs
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"Research Roadmap for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Released"

Free:
https://journals.lww.com/neurotodayonline/blog/breakingnews/pages/post.aspx?PostID=1451

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

tomkindlon, to mecfs
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Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.

He concludes: "Does anyone think that LP or its promoters are remotely serious?"

https://edzardernst.com/2024/05/almost-anyone-can-recover-from-long-covid-just-pay-a-lot-of-money-for-the-lightning-process-no-please-dont-i-was-joking/

@longcovid

@mecfs

tomkindlon, to mecfs
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BBC: #LongCovid course is 'exploiting people', says ex-GB rower

Former Team GB rower Oonagh Cousins was offered a free course of the contested
alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions.

@longcovid #PwLC #MEcfs @mecfs #LC

1/

tomkindlon,
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2/

Professor and LC-researcher Danny Altmann says such behavioural approaches disregards the "mass" of measurable underlying damage in patients. Neuroscientist Dr Camilla Nord says the course is straying very far from neuroscience and calls it an abuse of scientific terms. The story is presented both as an article https://www.bbc.com/news/health-69040592 and a 38 min radio programme titled "Long Covid: Mind Over Matter?" https://www.bbc.co.uk/sounds/play/m001zg5q

#postcovid #postcovid19 #LC #Covidlonghaulers @longcovid @mecfs

tomkindlon, to mecfs
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New website https://tapanuiflu.blog/ documenting & discussing New Zealand's historical epidemic outbreak commencing in 1984. Initially noted in the South Otago town of Tapanui but affecting many thousands nationwide. Includes reconstructed media articles from the time

@mecfs

tomkindlon, to mecfs
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🧵
The Norwegian Broadcaster NRK has an article about the survey from the European ME Alliance (EMEA) which included 11 000 people from 44 countries. 74% answered they have little to no health care.

Google translation:
https://www-nrk-no.translate.goog/sorlandet/3-av-4-svarte-at-de-fikk-lite-eller-ingen-stotte.-anja-vil-vaere-en-inspirasjon-for-andre-med-me-1.16838776?_x_tr_sl=no&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

@mecfs

1/

tomkindlon,
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2/

One of the authors of the survey and deputy for the Norwegian ME Association Trude Schei calls for more knowledge among GPs and to not push ME patients into treatments with no documented effect.

Despite the results from the survey, paediatrician and ME researcher Maria Pedersen claims CBT has good effect as treatment for ME.


@mecfs

tomkindlon,
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3/
The article also discusses 22-year-old Anja Vesterhus who has lived with ME for 12 years and wants to help others by sharing on Instagram.

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

tomkindlon, to fibromyalgia
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"Biking across Canada for FM Research"

From the National ME/FM Action Network

Links in image:

https://www.shad.ca/cycling-across-canada-shad-alumni-fundraising-fibromyalgia-research/

https://linktr.ee/the.fibro.journey

@fibromyalgia

tomkindlon, to mecfs
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New from an Italian team of authors:

Does PI-ME/CFS* recall () syndrome?

Free full text:
https://www.sciencedirect.com/science/article/pii/S0168170224000868

*post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

@mecfs

tomkindlon, to mecfs
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The winning entry for a UK competition for medical students

Learning points about myalgic encephalitis/ : Bridging the gap between research, clinical practice and awareness

Free:
https://journals.sagepub.com/doi/full/10.1177/14782715241257968

@mecfs

tomkindlon, to mecfs
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New sympathetic editorial:

Medical students highlight the importance of medical education, kindness, compassion & belief when learning about patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

Free:
https://journals.sagepub.com/doi/full/10.1177/14782715241255977

#MEcfs #CFS #PwME @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

(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/

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

tomkindlon, to mecfs
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From: AMMES @AmmesAdmin

Only 4 days left of David Tuller's fundraiser. can we raise $15,000 in four days? I think we can!

https://eocampaign1.com/web-version?p=9686a04e-18fe-11ef-b59d-e3a58179f72e&pt=campaign&t=1716810404&s=1700b80db212bb47af2181e43a0db46188194e4befa2dd642f82f6e17ab557f7

@longcovid @mecfs

tomkindlon, to mecfs
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MEAction #TeachMETreatME: 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 #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

1/

tomkindlon,
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2/

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

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

tomkindlon, to mecfs
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New pre-print:
The German Multicenter Registry for ME/CFS (MECFS-R)

https://www.medrxiv.org/content/10.1101/2024.04.25.24306335v1


@mecfs @mecfs_de

tomkindlon,
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2/

Full paper has now been published:

The German Multicenter Registry for ME/CFS (MECFS-R)

https://www.mdpi.com/2077-0383/13/11/3168
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @mecfs_de

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