@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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A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of clinical research, increase collaboration, attract new researchers & formulate research priorities

https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/

@mecfs

tomkindlon, to mecfs
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The UK ME Association:

"We have engaged a distribution company to ensure leaflets & posters are displayed in 3,000 GP surgeries in the UK. This will mean that we will know material is on display & that as leaflets are used, they can be replaced, & usage monitored"

https://meassociation.org.uk/2024/05/me-association-statement-improving-healthcare-for-people-with-me-cfs-and-long-covid/

@mecfs

tomkindlon, to coronavirus
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(pay wall)
"Parents of children with claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and... court cases and the threat of the child’s removal from the home."

https://inews.co.uk/news/parents-children-long-covid-accused-making-up-3034629

@longcovid

@covid19
@novid

tomkindlon, to mecfs
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Thanks to my mum for getting everything ready for our family on (tomorrow).

We’re doing it in aid of the Irish ME/CFS Association https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation but other worthy charities are available.

@mecfs

tomkindlon, to mecfs
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New 4-minute video:
" (ME/CFS) Awareness - ‘What Was I Made For?'"

https://youtu.be/ZjwHWpDR_wM

A cover of Billie Eilish’s ‘What Was I Made For?’, combined with
information to raise awareness for Myalgic Encephalomyelitis (ME/CFS)

@mecfs

tomkindlon, to HR
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Work and vocational rehabilitation for people living with long covid

https://www.bmj.com/content/385/bmj-2023-076508

"For some people, disabling symptoms lead to complete inability to work. In less extreme cases, “work instability,” which is a mismatch between patients’ functional abilities and the demands of their work, can threaten employment if not addressed."

Hashtags:
@longcovid


@covid19

tomkindlon, to longcovid
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Cardiopulmonary Exercise Testing in Children With : A Case-controlled Study

https://t.ly/Wb1ps

"Children with have a reduced VO2 peak […], abnormal cardiovascular efficiency (VO2/HR% pred), pathological VE/VCO slope […], and abnormally reduced slope of VO2 work" "48% of the LC patients had a suspicious phenotype for pulmonary hypertension."

Hashtags:
@longcovid

tomkindlon, to mecfs
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🧵
Factors associated with having previously received a diagnosis of #fibromyalgia, #chronicfatiguesyndrome and #irritablebowelsyndrome : A cross sectional DanFunD study

Free full text:
https://www.sciencedirect.com/science/article/pii/S0022399924001053

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@fibromyalgia #fibro #fms @ibs

1/

tomkindlon,
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2/

In this study, having previously received an functional somatic syndrome diagnosis such as CFS was associated with female sex and poor health-related quality of life. No association was found for health anxiety, kinesiophobia and physical activity.

@mecfs @fibromyalgia @ibs #mecfs #cfs #fibromyalgia #ibs

tomkindlon, to mecfs
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Looking forward to our family blue Sunday [coffee morning] event this Sunday in aid of the Irish ME/CFS Association.

https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation @IrishMECFSAssociation

Other worthy charities also taking part.

@mecfs

tomkindlon, to mecfs
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Interview by David Tuller DrPH with Co-Organizator of Next Week's Unite To Fight Long Covid & ME/CFS Conference

https://virology.ws/2024/05/08/trial-by-error-interview-with-co-organizator-of-next-weeks-unite-to-fight-long-covid-conference/

Tuller speaks with Marco Wetzel, one of the five German patients who organised the conference.

@mecfs_de @mecfs

@longcovid

tomkindlon, to mecfs
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Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"

A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024

https://crowdfund.berkeley.edu/project/42302

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
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🧵
“Remarkable researchers hunting for ‘something in the blood’ of people with ME”

Blog post by Simon McGrath discussing an upcoming UK research study

https://mecfsresearchreview.me/2024/05/08/researchers-hunting-for-something-in-the-blood-of-people-with-me/

#MEcfs #PwME #CFS @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/

tomkindlon,
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2/

Dr Audrey Ryback (who is funded by Action for ME) and Charlie Hillier plan to replicate with a larger sample work by Fluge and Mella who found something in serum that changed the behaviour of healthy lab-grown muscle cells.

#MEcfs #CFS #PwME
@mecfs

tomkindlon,
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3/

They will use the Seahorse anlayser to look at glycolysis and mitochondrial respiration. Using a stain and microsocopy, they will look for the mitochondrial fragmentation that Prusty saw, and will also investigate how serum might affect cell function.

#MEcfs #PwME #CFS
@mecfs

tomkindlon, to mecfs
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New research from UK team:
Examining well-being and cognitive function in people with and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study

Free full text:
https://www.sciencedirect.com/science/article/pii/S0002934324002730

Hashtags:
@longcovid

@mecfs

tomkindlon, to mecfs
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"Good Days, Bad Days: Understanding the Trajectories of Technology Use During #ChronicFatigueSyndrome"

Free full text:
https://dl.acm.org/doi/pdf/10.1145/3613904.3642553

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

News from NIH: ME/CFS Research Roadmap now available

Links in image:

https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group

https://www.ninds.nih.gov/sites/default/files/2024-05/Report%20of%20the%20MECFS%20Research%20Roadmap%20Working%20Group%20of%20Council_508C.pdf

https://videocast.nih.gov/PastEvents

@mecfs

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

1/

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

1/

tomkindlon,
@tomkindlon@disabled.social avatar

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 #PwME
@mecfs @mecfs_de

tomkindlon,
@tomkindlon@disabled.social avatar

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”

#SevereME #MEcfs #PwME
@mecfs @mecfs_de @severeme

tomkindlon,
@tomkindlon@disabled.social avatar

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 #PwME #CFS
@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 #PwME #CFS
@mecfs @mecfs_de #severeme @severeme

tomkindlon,
@tomkindlon@disabled.social avatar

8/

“ME/CFS research is dramatically underfunded internationally in view of the high number of people affected and the significant burden of disease [173, 174]. Previous research initiatives have been made possible mainly by private funds and foundations.”

#MEcfs #PwME #CFS
@mecfs @mecfs_de

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