ME/CFS (kbin)

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

has extended the deadline for their Millions Missing 2024 fundraiser to June 21.

"We have finally crossed over 50%, so we need your help to finish out this fundraiser strong!"

Donation link:

https://www.meaction.net/millionsmissing-fundraiser-2024/?mc_cid=ebf9727656

Please donate if you can, but only if you are not struggling yourself! ❤️

1/2

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

" recognizes that everything seems to cost a little bit more these days...as it is now costing us a little bit more to provide the programming and resources needed for this community. If you have a few extra dollars to give, we would greatly appreciate it."

Full email here:

https://mailchi.mp/meaction/millionsmissing-fundraiser-extended

2/2

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

BMJ e-letter:
"Why I’d rather have a well-researched and well-informed doctor"

Free:
https://www.bmj.com/content/376/bmj.n3102/rr-0

"the NHS simply does not offer any kind of useful care" for ME and [#LongCovid]

#MEcfs #CFS #PwME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@tomkindlon

Thanks for the link, Tom. We definitely need more doctor education!

Anyone reading this can share the Mayo ME/CFS CME (continuing medical education) with their doctor(s):

https://millionsmissing.meaction.net/treatme/

Half of Long Covid patients meet ME/CFS diagnosis.

The link above is for folks in the USA, but also did outreach in May in some other countries:

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

@mecfs @longcovid

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Short quote from the letter linked in Tom's post:

"I have sat through countless GP appointments where I have had to explain the basics of Post Exertional Malaise [PEM], the cardinal symptom of ME, before going on to discuss treatment."

I've had similar doctor visits.

It's frightening that so many doctors know so little about ME/CFS.

@mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

3/
Different diagnostic criteria available for ME/CFS with a concise history of timelines.

From:
/ : the biology of a neglected disease

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1386607/full


@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/
Infectious pathogens thought to promote the development of ME/CFS including viruses, bacteria, fungi, and parasites

From:
/ : the biology of a neglected disease

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1386607/full


@mecfs

s4me,
@s4me@med-mastodon.com avatar

A thread for sixteen , and related research papers from w/c 27th May 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/17

tomkindlon,
@tomkindlon@disabled.social avatar

Vienna's city center is currently plastered with #MECFS awareness campaign billboards by the WE&ME Foundation. They are located in some of the most frequently passed pedestrian areas and read: "ME/CFS holds you prisoner".

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

tomkindlon,
@tomkindlon@disabled.social avatar

ME Research UK

Part 2 highlights from the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, including-

  • History of ME/CFS

  • Clinical assessment of ME/CFS and

  • Immune and metabolic abnormalities

Read: https://www.meresearch.org.uk/1st-international-conference-on-clinical-and-scientific-advances-in-me-cfs-and-long-covid-lisbon-highlights-part-2/

@mecfs

lia_pas,
@lia_pas@vis.social avatar

Catch the premiere of Opera Mariposa’s last online musical performance for #BAMonth2024 and #MEAwarenessMonth ! Join me NOW for a beautiful piano improvisation, and mark the close of an incredible May Awareness Month for #MECFS, #Fibromyalgia and other chronic neuro-immune diseases. https://www.youtube.com/watch?v=47ADrkevWNQ

CandaceRobbAuthor,
@CandaceRobbAuthor@historians.social avatar

@lia_pas Haunting! Thank you.

tomkindlon,
@tomkindlon@disabled.social avatar

Possibly the biggest study yet to show increases the risk of (& )

"The risks of autoimmune- & inflammatory post-acute conditions: a network cohort study in six European countries, the US, & Korea"

https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1

@mecfs

@pots @longcovid

@covid19

tomkindlon,
@tomkindlon@disabled.social avatar

2/

The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea

https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1

"In our unmatched comparison, we observed that, following , POTS and ME/CFS yielded higher rates than after negative testing. In absolute terms, we observed & diagnoses to have a similar disease burden as DM [diabetes]"

@mecfs @pots @longcovid @covid19

tomkindlon,
@tomkindlon@disabled.social avatar

🧵
The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of #COVID19

https://journals.sagepub.com/doi/10.1177/23743735241252475

"There are several arguments for how saying “We don’t know” might benefit patients.

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid @chronicillness
@spoonies #chronicillness #spoonie @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

“The absence of epistemological humility leaves an unacknowledged gap between patients’ lived experiences and the (lack of) medical knowledge about their illnesses.

This gap leaves the provider vulnerable to bias. Racialized, gendered, classed notions about whose bodies are “really” sick may begin to prevail."

#chronicillness #Spoonie #mecfs
@longcovid @chronicillness @spoonies @mecfs

wolfsbruder,
@wolfsbruder@babka.social avatar

So my pain level has hit 9, and I stayed there for the past two hours. and my sweet child is pissed and complaining that I am "acting like a whining little bitch"...

caity,
@caity@bne.social avatar

Last Boosted Toot (re the Emerge Recommendations for #MECFS in Australia) - I have posted before on why I haven’t engaged with MECFS specialists in a long time. This report calls for parliament to implement these recommendations, which include updating Australia’s treatment plans to world standards instead of the current 2002 version of treatments, abandoned everywhere. Yep - 2002. Can you think of another illness still being treated in such an outdated way?

tomkindlon,
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

2/
"The investigators hypothesize access to personalized information from a wearable device will enable participants to reduce post-exertional malaise. The investigators will include up to 25% individuals whose is caused by a condition other than "




@pots @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

3/
Video:
Symptom Management and Patient Empowerment Through The Long Covid Wearable Study (58 minutes)

https://www.youtube.com/watch?v=3E9wPliUwG4

@pots @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

"Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS [biopsychosocial] in and ME: How brain retraining therapies intersect with the biopsychosocial model"

https://longcovidadvocacy.substack.com/p/tin-foil-hat-territory-the-gupta

Hashtags:
@longcovid

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

3/

"This excellent article highlights the similarities of these methods with the unevidenced 'biopsychosocial' approach to ME/CFS which has dominated research and treatments for years and is now infiltrating Long Covid, including in NHS clinics."

#MEcfs #CFS #PwME #postcovid #postcovid19 #LC
@LongCovidAdvoc @longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/

"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."

@LongCovidAdvoc @longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

2/

A short write-up about BBC's critical radio documentary/article about the unfounded claims that Long Covid can be treated by Lightning Process. Tuller calls it a well-done project and gives kudos to the journalist Shraer and the producer.

@longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar
bananamangodog,
@bananamangodog@aus.social avatar
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