@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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New York Senate Resolution 1565:

Governor Kathy Hochul to proclaim May 2024, as / Awareness Month in the State of New York

https://assembly.state.ny.us/leg/?default_fld=&bn=J01565&term=2023&Summary=Y&Actions=Y&Text=Y&Committee%26nbspVotes=Y&Floor%26nbspVotes=Y#J01565

@mecfs

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ME Research UK

Epistemic injustice is harm done to a person which is related to their own knowledge, or personal experience. It is said to be a concept closely related to stigma – sadly, something commonly experienced by those with ME/CFS.

https://www.meresearch.org.uk/epistemic-injustice-among-people-with-me-cfs/

@mecfs

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ME Research UK – April 2024 e-newsletter

https://www.meresearch.org.uk/me-research-uk-april-2024-e-newsletter/

@mecfs

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ME Research UK:

Calling all early career researchers – what is “The Future of ME/CFS Research"? ME Research UK announces the Founders’ Science Writing Award. Cash prizes for winning entries. Read more:
https://www.meresearch.org.uk/writing-award-2024/

@mecfs

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ME Research UK:

Our Fundraising Focus highlighting upcoming fundraising events by wonderful supporters this month is now available on our website - https://www.meresearch.org.uk/fundraising-focus-april-2024/ From Walk for ME to & even an online raffle for handcrafted and unique items!

@mecfs

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ME Research UK:

Yesterday's 1 hour Westminster Hall Debate on ME is available to watch on parliamentlive.tv (https://tinyurl.com/5xkd68fk). Alternatively, ME Research UK has summarised the points raised for ease. https://tinyurl.com/3rjwpz9h

@mecfs

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New preprint:
A Narrative Review on Gut Microbiome Disturbances and Microbial Preparations in ME/CFS: Implications for

https://www.preprints.org/manuscript/202404.2021/v1


@mecfs

@longcovid

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New & ME/CFS research from Australia:

"Investigation into the restoration of TRPM3 ion channel activity in condition: a potential pharmacotherapeutic target" [naltrexone]

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1264702/full

@mecfs

@longcovid

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New:
Epigenetic reprograming in myalgic encephalomyelitis/chronic fatigue syndrome: A narrative of latent viruses

Free full text:
https://onlinelibrary.wiley.com/doi/10.1111/joim.13792

@mecfs

1/

tomkindlon,
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2/

New:
Epigenetic reprograming in / : A narrative of latent viruses

Free full text:
https://onlinelibrary.wiley.com/doi/10.1111/joim.13792


@mecfs

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New from the Netherlands:

Another infection associated with long-term negative effects

Work participation, social roles, and empowerment of Q-fever fatigue syndrome patients ≥10 years after infection

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0302573

@mecfs

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New Leicester (UK) & study that is recruiting

Investigating the impact of ME/CFS & on visual perception & sustained attention using Pupil Frequency Tagging & EEG

https://dougiebarrett.github.io/Lab/pages/ME_CFS.html
ME Research UK-funded

Not a biopsychosocial study

@mecfs

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People with disabilities including a woman with ME complaining about how they have been treated by the Welsh health service

https://www.bbc.com/news/uk-wales-68891090

@chronicillness
@spoonies
@disability
@disabilityjustice
@mecfs

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From David Tuller DrPH

Berkeley's May crowdfunding for Trial By Error has begun...

https://virology.ws/2024/05/01/trial-by-error-berkeleys-may-crowdfunding-campaign-begins/

@longcovid @mecfs

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From X:

Recruitment for our recent Mason-funded ME/CFS biomedical study in VIC, Australia is LIVE! Please get in touch if interested or have questions. Some more info: https://docs.google.com/document/d/1-2H8pkgqrPRG_YLuda5au0_kdH69Xktr/edit?usp=sharing&ouid=106411990730824976565&rtpof=true&sd=true
We're doing home visits for severely ill people.

@mecfs

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One week to go to Dublin event.

I wouldn’t have the energy for the whole event so plan to come in just before the chat over free tea/coffee/water & biscuits. Do say hello if you see me. 👋

@mecfs

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New 12-minute video:

"I believe microglia are the primary culprit behind , , , , and other & fatigue disorders.

Here is a quick video on what I am trying to do to fix the problem. - Jarred Younger"
https://www.youtube.com/watch?v=XggO__DlALw

@mecfs

@longcovid

@chronicpain @fibromyalgia

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ME Research UK:

The Spring 2024 issue of Breakthrough magazine is now available online, with an article on 2 newly funded research projects, a look at the UK scientists currently making waves in ME/CFS research, an interview with Gemma Samms, & much more. http://meres.uk/breakthrough

@mecfs

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New US research:

Phenylephrine Alters Phase Synchronization between Cerebral Blood Velocity and Blood Pressure in with

https://journals.physiology.org/doi/abs/10.1152/ajpregu.00071.2024

@mecfs

@pots

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Development of an expert system for the classification of /chronic fatigue syndrome

Free:
https://peerj.com/articles/cs-1857/

Metabolomic data from blood samples from 19 controls and 32 ME/CFS patients were used to develop a machine-learning model to classify patients and controls. The dataset contained 832 metabolites, and after feature selection, the model was developed using only 50 metabolites.

@mecfs

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Royal College of Physicians Edinburgh online event on ME/CFS & for clinicians & students

Tuesday 4th June 2024, 6.00pm – 8.30pm (BST)

Speakers include Nicola Clague-Baker, Jaime Seltzer, David Putrino & Danny Altmann

https://events.rcpe.ac.uk/rcpe-mecfs-and-long-covid

@mecfs

@longcovid

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UniteToFight is organizing an online ME/CFS & conference on 15-16 May.

https://unitetofight2024.world/

UniteToFight was inspired by the loss of Dutch ME/CFS patient Lauren who passed away earlier this year.

@mecfs @mecfs_de @longcovid

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Norwegian PhD thesis:

/ (ME/CFS): Clinical trials, medical treatment and pathomechanisms

Free:
https://bora.uib.no/bora-xmlui/handle/11250/3127770
One paper under review not included

@mecfs

tomkindlon,
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2/

"In this project, we aimed to assess the therapeutic potential and possible side effects of rituximab and cyclophosphamide in two clinical trials... The effect of an immunomodulatory drug on symptoms supports the underlying hypothesis that in a subgroup of patients the immune system is involved in the pathomechanisms of ME/CFS."


@mecfs

tomkindlon,
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3/

The thesis also reports on a study of outcome measures for use in future clinical trials.


@mecfs

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“A Switch Went off in my Whole Body”: Lived Experiences of Fatigue & in

Looks like an interesting and sympathetic exploration of the topic also relevant to ME/CFS

Free:
https://www.researchgate.net/profile/Corina-Sas/publication/370177940_A_Switch_Went_off_in_my_Whole_Body_Lived_Experiences_of_Fatigue_and_Post-Exertional_Malaise_in_Long_Covid/links/66056ad610ca867987254dc1/A-Switch-Went-off-in-my-Whole-Body-Lived-Experiences-of-Fatigue-and-Post-Exertional-Malaise-in-Long-Covid.pdf

@longcovid @mecfs

1/

tomkindlon,
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3/
"We conclude with design implications to support lightweight tracking & sensemaking of fatigue symptoms, novel data analytics for monitoring the triggers of post-exertional malaise & the worsening of symptoms, & support for self-management in order to prevent post-exertional malaise”

@longcovid @mecfs

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