@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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tomkindlon,
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2/

“The BMJ misleadingly describes these authors as ‘international specialists’…They are specialists only in the sense that their colleagues who, in the past, treated people with multiple sclerosis for ‘hysteria’ were specialists – i.e., not at all”

Note: not all the authors are psychiatrists. Some are for example neurologists but the sort that, say, often use the FND diagnosis. The basic point remains about their lack of expertise or engagement with the biomedical literature

@mecfs

tomkindlon,
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3/

“The review comes with an unusually long list of competing interests; many of its authors have built their careers on the notion that treatment for ME/CFS should be rehabilitative, consisting of physiotherapy, exercise and counseling. These authors receive payments either for providing exercise and counseling ‘treatments’, or for advising government departments or insurance companies that such treatments should be provided”

@mecfs

tomkindlon, to MultipleSclerosis
@tomkindlon@disabled.social avatar

New:
Association analysis between symptomology and herpesvirus IgG antibody concentrations in / (ME/CFS) and

Free fulltext
https://www.sciencedirect.com/science/article/pii/S2405844023054580

Uses data from @mecfsbiobank

@mecfs

tomkindlon, to mecfs
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New from Spain:

Bioimpedance spectroscopy characterization of osmotic stress processes in / blood samples

Free fulltext:
https://doi.org/10.22541/au.168909663.38868952/v1

"Higher values of impedance were measured for 1.36 kHz in ME/CFS patients compared to control samples"

@mecfs

tomkindlon, to mecfs
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New from a New Zealand team

An understanding of the immune dysfunction in susceptible people who
develop the post-viral fatigue syndromes
/ and

Free fulltext:
https://esmed.org/MRA/mra/article/view/4083

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Well done to Dr Shepherd of @MEAssociation for his e-letter on the BMJ website

https://www.bmj.com/content/382/bmj.p1621/rapid-responses

I'd encourage others to try: the BMJ historically has been very good at posting letters from all sorts of people incl. patients. Avoid personal attacks.

@mecfs

tomkindlon, to australia
@tomkindlon@disabled.social avatar

The Australian ME/CFS Biobank & Registry seeks more participants, both people with ME/CFS & healthy control volunteers

More info here:
https://www.emerge.org.au/biobank-registry/

Sign up here:
https://d1acz2exxoluqj.cloudfront.net/home

@mecfs

tomkindlon, to australia
@tomkindlon@disabled.social avatar

:
Parliamentary Friends For ME/CFS

Continues at:
https://www.emerge.org.au/news/parliamentary-friends-for-me-cfs/

@mecfs

tomkindlon, to mecfs
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"Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months" - @EmergeAus

https://www.emerge.org.au/news/july-2023-international-research-and-advocacy-roundup/

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Well done to Dr Charles Shepherd of the ME Association for putting in perspective the new commentary by CBT and graded exercise therapy proponents, individuals who have lots of competing interests and aren't necessarily focused on what's best for patients.

From "‘Shortcomings' identified in chronic fatigue syndrome guidance":
https://www.irishnews.com/news/uknews/2023/07/11/news/_shortcomings_identified_in_chronic_fatigue_syndrome_guidance-3426398

@mecfs

tomkindlon, to mecfs
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🧵
Chronic inflammation, neuroglia dysfunction, and plasmalogen deficiency as a new pathobiological hypothesis addressing the overlap between symptoms &
/

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S0361923023001272

@longcovid @mecfs

1/

tomkindlon,
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2/

Image is abstract for "Chronic inflammation, neuroglia dysfunction, and plasmalogen deficiency as a new pathobiological hypothesis addressing the overlap between symptoms & /"

Free fulltext
https://sciencedirect.com/science/article/pii/S0361923023001272

@longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

3/

Fig. 3. Unifying bio-pathological model for post-COVID-19 syndromes and ME/CFS, and implications of chronic inflammation for plasmalogens levels.

From:
https://www.sciencedirect.com/science/article/pii/S0361923023001272

@longcovid @mecfs

tomkindlon, to mecfs
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"Recommended ME/CFS resources for medical educators" from @MECFSMedEd

https://mecfsmeded.files.wordpress.com/2023/04/mecfs-learning-resources.pdf

A collection of papers, articles and audiovisual material.

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

One month ago to August 8, severe ME day.

I have a Pinterest board with 564 pins on severe ME/CFS here https://www.pinterest.ie/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos and articles.

You don't need to be on Pinterest.

#SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

I thought I would repost this to highlight again some of the many varied symptoms that can be found in /

Particularly relevant when similarities with the presentation in some people are being missed

Note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" & a feeling of being "out of breath.

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

Here is another list of symptoms and their prevalence rates from a cohort with ME (n=420)

From: --a persistent enteroviral infection? E G Dowsett, A M Ramsay, R A McCartney, E J Bell. Postgrad Med J. 1990 Jul;66(777):526-30.

https://pubmed.ncbi.nlm.nih.gov/2170962/

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
Extracts from:

"European Network on / (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, & Care of People with ME/CFS in Europe (2021)"
which I thought was good

Free:
https://www.mdpi.com/1648-9144/57/5/510

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

4/
"3.2. Clinical Examination"

Good to see talk of what might be observed during a physical examination which sometimes doesn’t seem to get discussed

@mecfs

tomkindlon, (edited )
@tomkindlon@disabled.social avatar

5/

Good to see recognition that the severely affected might need accommodations with regard to the physical examination

@mecfs @severeme

tomkindlon,
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6/
"...it is important to note that most people with ongoing fatigue do not have ME/CFS..."


@mecfs

tomkindlon,
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7/

"Action is prompted by clinical suspicion and red flags, such as unintentional weight loss, prolonged fever ≥ 38 °C, persistently elevated inflammatory markers, significant abnormalities in physical examination, or suicidal ideation."

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

8/
"Diagnosis of ME/CFS in children is especially challenging for two main reasons..."

@mecfs

tomkindlon,
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9/

"Symptoms are usually fluctuating in type and severity (especially in the early stages of the disease), with patients typically reporting “good” and “bad” days. A more careful analysis of the pattern of symptoms may reveal correlation with physical or mental efforts."

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

10/

  • CCC 2003 [2], IOM 2015 [6], and Rowe et al., 2017 [4], criteria require 6 months of symptoms; experienced clinicians should be able to diagnose adults with 3 months of symptoms. For children, CCC criteria requires 3 months [2], and Rowe et al., 2017 [4], require 3 months in post-infectious cases.


@mecfs

MECFSMedEd, to random

Our guide to developing undergraduate ME/CFS Medical Education is now online!
https://mecfs-med-ed.org/medical-educators/

tomkindlon,
@tomkindlon@disabled.social avatar

@MECFSMedEd Very useful. Well done 👍 @mecfs

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