@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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https://www.youtube.com/watch?v=hPdv_aFhVPE

"The purpose of this video is to shine a light and bring awareness to the often unseen and debilitating nature of ME/CFS, , , and their co-existing conditions.

Background: We asked the lived-experience community and BHC staff to share reflections of their disease experience in the form of a picture, art, or poem. The poems can be found on the BHC blog." https://batemanhornecenter.org/category/patient-voice/

@fibromyalgia @longcovid @mecfs

tomkindlon, to cfs
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Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in :

Here again is "Symptoms made worse due to physical or cognitive exertion" in &

Also shows all the range of ME / symptoms

From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://ncbi.nlm.nih.gov/pmc/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

@mecfs @LongCovid

tomkindlon, to mecfs
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"The Cost of ME/CFS: An OT’s Lived Experience"

https://batemanhornecenter.org/the-cost-of-me-cfs-an-occupational-therapists-lived-experience/

@mecfs

tomkindlon,
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2/

"It was counterintuitive to all my training and experience what true rest as well as pre-emptive rest meant. The rehabilitation philosophy of incrementally training and graded exercise was also not effective and in fact harmful to me."
@mecfs

tomkindlon, to mecfs
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From the @MassMECFS July e-newsletter
https://www.massmecfs.org/newsletters/856-2023-7-july-newsletter

Link to @jspotila's review:
https://occupyme.net/2023/06/19/lightning-book-review-crip-up-the-kitchen/

@mecfs @spoonies @chronicpain @chronicillness

tomkindlon, to mecfs
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(UK) The All-Party Parliamentary Group meeting for took place on 14th June 2023.

5 pages of minutes available. I would have preferred more detail.

https://appgme.co.uk/meetings/severe-me-appg-meeting-14th-june-2023/

@mecfs @severeme

tomkindlon, to mecfs
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New pre-print:

Genetic Risk Factors for Severe and Fatigue Dominant and Commonalities with ME/CFS Identified by Combinatorial Analysis

Free fulltext:
https://www.medrxiv.org/content/10.1101/2023.07.13.23292611v1

Note: UK people with & + can take part in

@mecfs @longcovid

tomkindlon, to mecfs
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New from Japan:

Utility of Serum Ferritin for Predicting / in Patients with

Free fulltext:
https://www.mdpi.com/2077-0383/12/14/4737

@mecfs @longcovid

tomkindlon, (edited ) to mecfs
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Collusion to exclude Long Covid - the long history of energy-limiting
disability denial by insurance firms

Daily Maverick: Despite overwhelming scientific evidence, vested
interests continue to push the false narrative that energy-limiting
conditions such as ME/CFS are "all in your head" to avoid paying
disability benefits.

Sam Pearce

17 Jul

https://t.ly/yhA_G

@mecfs @longcovid

1/

tomkindlon,
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2/
My comment:

It’s good if the issue is highlighted. But like a lot of articles, it
doesn’t explain the mechanism as to how having CBT and/or GET seen as
safe and effective allows disability insurance companies turn down claims (saying patients need to try CBT +/or GET before they will pay) which then leads to some claimants giving up which saves
insurance companies potentially a lot of money.


@mecfs @longcovid

tomkindlon,
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3/

I tried to do it in the first post in this thread: “How payments from
insurance companies might potentially bias proponents of CBT and/or
GET for ME/CFS (such as the PACE Trial investigators)”
https://www.s4me.info/threads/how-payments-from-insurance-companies-might-potentially-bias-proponents-of-cbt-and-or-get-for-me-cfs-such-as-the-pace-trial-investigators.8066/
which includes a link to someone describing how a well-known doctor
did this to them (using information obtained using the data protection
act)


@mecfs @longcovid

tomkindlon,
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4/
I initially posted the wrong link. Have fixed it now. @mecfs @longcovid

tomkindlon, to mecfs
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(UK)
“Take Action to be Part of the Solution”

Sign up to DecodeME: https://rb.gy/c1xyw

Production: Mirame Arts
Director: Béla Baptiste

@mecfs

video/mp4

tomkindlon, to longcovid
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Thread 🧵:

"Laboratory Findings and Biomarkers in Long COVID: What Do We Know So Far? Insights into Epidemiology, Pathogenesis, Therapeutic Perspectives and Challenges"

Free fulltext:
https://www.mdpi.com/1422-0067/24/13/10458

@longcovid 1/

tomkindlon,
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2/

Image is from:
"Laboratory Findings and Biomarkers in Long COVID: What Do We Know So Far? Insights into Epidemiology, Pathogenesis, Therapeutic Perspectives and Challenges"

Free fulltext:
https://www.mdpi.com/1422-0067/24/13/10458


@longcovid

tomkindlon,
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3/

Figure 2. Candidate biomarkers classifying clinical manifestations in long COVID (LC).

Image is from:
"Laboratory Findings and Biomarkers in Long COVID: What Do We Know So Far? Insights into Epidemiology, Pathogenesis, Therapeutic Perspectives and Challenges"

Free fulltext:
https://www.mdpi.com/1422-0067/24/13/10458


@longcovid

tomkindlon,
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4/

“Herein, we aim to review the available evidence on the typical laboratory manifestations and candidate biomarkers of LC, their classification based on etiopathogenetic mechanisms and the main LC symptomatology in the frame of the epidemiological and pathogenetic aspects of the syndrome and furthermore assess potential implications in candidate therapeutic interventions.”

@longcovid

Private
tomkindlon,
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4/

“A search for the most-cited papers on ME/CFS in the past five years turns up research on the condition’s prevalence, symptoms and presentation, and pathophysiology, often with comparisons showing a similarity to long Covid. None of these papers mention exercise, except as an older treatment which has been abandoned because of its tendency to provoke symptom flares and its association with a worsening of disease severity. The science has moved on”

@mecfs

tomkindlon,
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5/

“It’s almost understandable a group of researchers & clinicians who have built their careers on rehabilitative approaches to should struggle to accept the new scientific reality.But the BMJ should not have given space to what is essentially an opinion piece coming from a group of heavily biased authors.The BMJ’s readers are drs, who trust the usually authoritative journal to provide accurate, up-to-date medical information.It’s these doctors’ patients who will suffer”
@mecfs

tomkindlon, to mecfs
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🧵
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,
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11/

"Primary care professionals have an important role in the initial diagnosis, including consideration of alternative conditions leading to similar symptoms ..." (Box 7 is in the next tweet)

@mecfs

tomkindlon,
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12/

Box 7. List of diseases where fatigue may be a prominent feature, which may preclude a diagnosis of ME/CFS if the disease largely explains the symptoms. They may, however, be co-morbidities with ME/CFS if they do not fully explain symptoms characteristic of ME/CFS (including fatigue, cognitive complains, sleep dysfunction, PEM).

@mecfs

tomkindlon,
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@robotistry @mecfs The main purpose of this list is as a list of exclusionary diagnoses i.e. consider these instead of an ME/CFS diagnosis. But it adds an individual could have both.

tomkindlon,
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13/

Box 5. Symptoms and complaints to consider when taking a clinical history


@mecfs

tomkindlon,
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13/

Box 6. Co-morbid conditions which do not exclude ME/CFS diagnosis


@mecfs

tomkindlon,
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14/

Box 8. Core and additional assessments that may be recommended for ME/CFS secondary care services.

@mecfs

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