@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 PACE trial: This $8 Million Medical Trial Is A Joke

https://youtu.be/bzh8pT-g9v0?si=lKaPgE89O297zJad

YouTuber and behavioural scientist Pete Judo presents the infamous which he describes as "what is possibly the worst medical trial in modern history. (contd)”

@mecfs

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tomkindlon,
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2/

“(Contd) Worst in its bizarre practices, worst in terms of its potentially fraudulent reporting of results, and worst of all its potential harm it has caused to a very vulnerable group of people".


@mecfs

tomkindlon, to mecfs
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New important guidelines in German

Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of

Free:
https://link.springer.com/article/10.1007/s00508-024-02372-y

@mecfs @mecfs_de

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tomkindlon,
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2/

Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von /

Frei
https://link.springer.com/article/10.1007/s00508-024-02372-y

@mecfs @mecfs_de

tomkindlon,
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3/

Good to see:
"For the latter [ME/CFS], overload (e.g. through sports or activating rehabilitation measures) leads to a deterioration of the condition. , while patients with depression or burnout usually benefit from activating measures. For ME/CFS sufferers, "pacing" instead of activation is therefore at the center of disease management."

@mecfs @mecfs_de

tomkindlon,
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4/

Added quotes:
“due to the lack and/or incorrect medical care, stigmatization, social isolation and lack of social security - trauma or a depressive reaction can develop in ME/CFS-affected people […] All [treament] measures must be adapted to the PEM and the associated risks.”


@mecfs @mecfs_de

tomkindlon,
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5/

“Severely affected persons must be shielded from all stimuli and are completely in need of care - up to artificial nutrition. The disease burden is so high that the average quality of life is lower [than] MS, cystic fibrosis, diabetes mellitus, epilepsy, AIDS or cancer”


@mecfs @mecfs_de @severeme

tomkindlon,
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6/

“Psychotherapy has only supporting significance for ME/CFS and is carried out without curative objectives. Gradually activating elements are harmful and can worsen the condition in the long term and irreversibly [2, 23, 26, 33, 36,37, 101, 141].”


@mecfs @mecfs_de

tomkindlon,
@tomkindlon@disabled.social avatar

7/

“However, pacing in ME/CFS patients with a very high degree of severity can hardly be implemented or not at all, as even basic and vital activities such as eating or minimal movements can lead to a deterioration of the condition.”


@mecfs @mecfs_de @severeme

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Long list of hashtags:
@chronicillness
@spoonies
@mecfs

@longcovid
@fibromyalgia










tomkindlon, to longcovid
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The Role of Heparin in Postural Orthostatic Tachycardia Syndrome and Other Post-Acute Sequelae of COVID-19

Free full text:
https://www.mdpi.com/2077-0383/13/8/2405

Hashtags:

@longcovid

@pots

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tomkindlon,
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2/

"In this article, we review the evidence surrounding the post-acute sequelae of COVID-19 and the potential benefits of the use of heparin, with a special focus on the treatment of postural orthostatic tachycardia syndrome”


@longcovid @pots

tomkindlon, to mecfs
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New:
Socioeconomic determinants of / in Norway: a registry study

Free:
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-18757-7

Comment: Lower health literacy/similar could make it more difficult for people with lower educational attainment to get diagnosed

@mecfs

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tomkindlon,
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2/

Informal summary of/comment on "Socioeconomic determinants of / in Norway: a registry study" by authors

@mecfs

tomkindlon, to mecfs
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(From the bird site)

ME nieuws @mecvsnieuws

video: The ME you don't see

Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.

Watch full video here: https://youtu.be/DJGk-2G3yE4 (NL+ENG subs)

@mecfs

@severeme

video/mp4

tomkindlon, to mecfs
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@mecfs

tomkindlon, to mecfs
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Recording of 21-minute Cape Talk Radio interview this morning Bettie Hough who’s lives with ME & Chair of ME & Long Covid Unite SA & Prof Resia Pretorius

https://www.primediaplus.com/2024/05/11/intense-fatigue-brain-fog-understanding-me-and-the-support-available-in-sa

Some text extracts are also at the link

@mecfs

tomkindlon, to mecfs
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Acronyms explained


@mecfs

tomkindlon, to mecfs
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New from the US:

Mitochondrial DNA Missense Mutations ChrMT: 8981A > G and ChrMT: 6268C > T Identified in a Caucasian Female with / () Triggered by the Epstein-Barr Virus

Free:
https://www.hindawi.com/journals/crig/2024/6475425/

@mecfs

tomkindlon, to mecfs
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"Dame Shirley Conran, author and campaigner who blazed a trail with Superwoman and Lace – obituary Telegraph Obituaries"

Free:

https://www.yahoo.com/news/dame-shirley-conran-author-campaigner-102213353.html

Following my mother writing to her, she once did an interview on ME on Irish national radio

RIP

@mecfs

tomkindlon, to mecfs
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New:
Sex and disease severity-based analysis of steroid hormones in ME/CFS

Free full text:
https://link.springer.com/article/10.1007/s40618-024-02334-1

@mecfs

tomkindlon, to mecfs
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News from NIH: Registration now open for the NIH ME/CFS Webinar on May 28

Links in image:
https://nih.zoomgov.com/webinar/register/WN_X9UFe5JRT5uJRg16YR3Wgg#/
https://support.zoom.com/hc/en/article?id=zm_kb&sysparm_article=KB0060564
https://www.nih.gov/mecfs/events

@mecfs

tomkindlon, to novid
@tomkindlon@disabled.social avatar

: plasma levels of neurofilament light chain in mild patients with neurocognitive symptoms

https://www.nature.com/articles/s41380-024-02554-0

"pNfL levels are significantly higher in long patients with mild acute and neurocognitive symptoms when compared to HC"

1/

Hashtags:
@longcovid

@covid19 @novid @auscovid19

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Not much time left if you want a free appointment for your child (under 21) with Dr Speight in one of these venues. Email: speight [at] doctors.org.uk (email not to be used for general enquiries)

@mecfs

tomkindlon,
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I've heard from parents from 3 separate families who were pleased with their appointments with Dr Speight in Dublin today.

@mecfs

tomkindlon, to mecfs
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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

tomkindlon,
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2/

"TRPM3 dysfunction in post-COVID-19 condition and ME/CFS participants suggests impairment in ion mobilization and consequently results in Ca 2+ signaling and cell homeostasis disturbance in both diseases. The NTX treatment restored TRPM3 ion channel activity in the post-COVID-19 condition group, facilitating Ca 2+ influx for intracellular signaling pathways."


@mecfs @longcovid

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