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

2/
3-minute video summary of “A Switch Went off in my Whole Body”: Lived Experiences of Fatigue & in

https://dl.acm.org/doi/abs/10.1145/3544549.3585846


@longcovid @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:

Following on from yesterday's post about research investigating the experiences of PEM in people with ME/CFS, we explore some of the themes addressed in the study from the rich descriptions provided by the participants, comparing day-to-day PEM with PEM experienced following exercise testing. Read more: https://www.meresearch.org.uk/the-experience-of-post-exertional-malaise-part-2/

@mecfs

@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

(Includes a 13-minute audio version)

ME Association

ME Association Research Review: Post-Exertional Malaise (PEM) in
ME/CFS and

Dr Katrina Pears, Research Correspondent at the ME Association has
produced a comprehensive booklet on research related to
(PEM).

It can be downloaded for free via the following link:
https://meassociation.org.uk/285c

@mecfs

Private
ezchili,

@kikkih @Psychonaut @mecfs @longcovid

About half of Long Covid patients have ME/CFS. (A bunch of studies show around 50 %)

PEM is the main characteristic of ME/CFS and what helps tell it apart from other illnesses. (IOM 2015)

ezchili, to mecfs

You can't talk about Post-Exertional Malaise (PEM) without mentioning ME/CFS. The term PEM was created to describe the unique manifestation occurring in people with ME/CFS.

If you separate PEM from its history and origin, you perpetuate the stigma surrounding ME/CFS. We need visibility and spread of knowledge.

@mecfs @historyofmedicine

ezchili, to mecfs

You can't talk about Post-Exertional Malaise (PEM) without mentioning ME/CFS. The term PEM was created to describe the unique manifestation occurring in people with ME/CFS.

If you separate PEM from its history and origin, you perpetuate the stigma surrounding ME/CFS. We need visibility and spread of knowledge.

@mecfs @historyofmedicine

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

Post-Exertional Malaise in ME/
- Management and Supports - Webinar for Health Professionals

"Dr Cathy Stephenson (General Practitioner) shares for colleagues what she has learnt about the symptom while supporting people impacted by ( / )"

https://www.youtube.com/watch?v=N2RCAthr3TA

I haven't watched this so far but I have seen a lot of sensible people praise it

@mecfs @longcovid

tomkindlon, to punk
@tomkindlon@disabled.social avatar

"High proportions of post-exertional malaise and orthostatic intolerance in people living with condition: the PRIME post-COVID study"

Free fulltext:
https://www.medrxiv.org/content/10.1101/2023.08.17.23294204v1

"Exercise-based treatments can be harmful in people who were SARS-CoV-2 positive and
living with post-COVID-19 condition (PL-PCC) and who have
() or intolerance ()"

@longcovid @covid @covid19

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

“I Have ME/CFS or Long COVID; Where do I go from here?” Recent post from the Workwell Foundation

An informative introduction to ME and with emphasis on / , the importance of pacing and of avoiding graded exercise therapy.

https://workwellfoundation.org/i-have-me-cfs-or-long-covid-where-do-i-go-from-here/

@longcovid @mecfs

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