@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
@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

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

🧵
New:

"Diagnosis and Management of / "

Free full text:
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

New, sympathetic guidelines. Have some status as in Mayo Clinic Proceedings & are eligible for CME

@mecfs

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
Press release:
"A Better Understanding of / Could Benefit Patients"

https://workjournal.org/news-blog/better-understanding-myalgic-encephalomyelitischronic-fatigue-syndrome-could-benefit-long

On the special edition of the journal WORK on &

With quotes from Amy Mooney, an occupational therapist

@longcovid @mecfs

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
New
Why the Psychosomatic View on / Is Inconsistent with Current Evidence and Harmful to Patients

Free full text:
https://www.mdpi.com/1648-9144/60/1/83

@mecfs

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID"
by Prof Brian Hughes ( @b_m_hughes ), Prof Steven Lubet & David Tuller DrPH

https://www.healthaffairs.org/content/forefront/despite-resistance-policy-makers-push-paradigm-me-cfs-and-long-covid

@mecfs
@longcovid

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Treatment Harms to Patients with / " by

David F Marks (an eminent academic psychologist)

https://opastpublishers.com/open-access-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf

Professionals have let down patients by not alerting everyone to this issue

@mecfs

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"Dr Nina Muirhead: ME Patient & Advocate in the UK"

I've heard Dr Muirhead say a lot of similar things before but still useful to have a doctor, particularly a consultant, saying them

From April 2023 but pretty timeless

@mecfs

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tomkindlon, to disability
@tomkindlon@disabled.social avatar

🧵
I thought this was very good

"Riding the Roller Coaster of Fluctuating Disability"

https://themighty.com/topic/disability/roller-coaster-of-fluctuating-disability/

"When people think about or , they tend to do so in a very black and white sort of way: Either you are completely , or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.

Were it only that simple"

@chronicillness @spoonies @disability @mecfs @longcovid

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tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

New pre-print from Germany:

[Case Report] Profound Symptom Alleviation in Patients After PAMP-Immunotherapy: Three Case Reports

https://www.qeios.com/read/69I32L

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"ME/CFS Isn't Just Misunderstood, It's Actively Neglected"

https://www.popsugar.com/fitness/mecfs-post-covid-49344168

'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'

@mecfs

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
I think it's great that health and medical professionals are reading this patient perspective on / (ME/CFS).

Thanks to Wilhelmina D Jenkins
for telling her story so well. 👍

https://uptodate.com/contents/patient-perspective-myalgic-encephalomyelitis-chronic-fatigue-syndrome

@mecfs

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tomkindlon, to chronicillness
@tomkindlon@disabled.social avatar

🧵
"17 Things I Don’t Admit on Bad Days With Chronic Fatigue*"

https://themighty.com/topic/chronic-illness/hidden-truths-of-what-chronic-fatigue-feels-like/

*Note that she clarifies "people with many illnesses experience chronic fatigue, but it should not be confused with / , a distinct diagnosis that also includes as a symptom."

@chronicillness
@spoonies




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tomkindlon, to disabled
@tomkindlon@disabled.social avatar

🧵
"To Anyone Afraid to Get a Disabled Placard Because You're Worried About Judgment"

https://themighty.com/topic/disability/what-to-know-about-getting-a-disability-parking-placard/

@chronicillness
@spoonies
@disability
@mecfs
@longcovid















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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Somebody shared the following saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I
relate so much"

Here's the TikTok link:
https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070

@chronicillness
@spoonies
@disability
@mecfs
@longcovid

video/mp4

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵

"7 Challenging Daily Decisions When You
Live With Chronic Illness
https://themighty.com/topic/chronic-illness/challenging-daily-decisions-with-chronic-illness/

Here are the 7 headings. The article itself expands on these

  1. Deciding if you’re going to take a shower.
  2. Deciding where to spend and save your spoons.
  3. Deciding how to answer “How are you?”

@chronicillness @spoonies @mecfs
@longcovid

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵on this new CDC publication & associated press release/media coverage

/ in Adults: United States, 2021–2022

https://www.cdc.gov/nchs/products/databriefs/db488.htm

"In 2021–2022, 1.3% of adults had / "

@mecfs

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"Why it's important that PEM is not fatigue"

https://mecfs.substack.com/p/why-its-important-that-pem-is-not

"*PEM is post-exertional malaise, also known as post-exertional symptom exacerbation. It is a symptom of ME/CFS and is also found in many people with "

@mecfs

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tomkindlon, to disabled
@tomkindlon@disabled.social avatar

On , please remember that not all disabilities are visible.

@chronicillness
@spoonies
@disability


@mecfs
@longcovid

tomkindlon, to mecfs
@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

Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS:

@mecfs
@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

A popular article in the ME/CFS community that's in the Guardian today
https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵

From:
Pattern of Post COVID Fatigue in Elderly Patients

"metabolic effects of aging are equally complex but hypometabolism is a constant feature. We hypothesise such limited metabolic response to exercise +/or stress may protect the patient from the typical hypermetabolic phenomena & its subsequent symptoms of PEM"

@longcovid
@mecfs
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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
Someone with #MEcfs sent me this set of information they collated on medical gaslighting & said I could share it:

4 Tricks for when doctors gaslight you - Dr. Kaveh LIVE - Medical Secrets (Jul 2023)
https://www.youtube.com/watch?v=CH3iSKanN7s

#Gaslighting #MedicalGaslighting @chronicillness @spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #patient #patients #chronicillness #spoonie #spoonies

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New from the NIH in-house ME/CFS research study:

Mixed methods system for the assessment of post-exertional malaise in / : an exploratory study

Free fulltext:
https://neurologyopen.bmj.com/content/6/1/e000529

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Identifying the mental health burden in / (ME/CFS) patients in Switzerland: A pilot study

Free fulltext:
https://www.cell.com/heliyon/pdf/S2405-8440(24)03062-7.pdf

@mecfs

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

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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