lia_pas, to mecfs
@lia_pas@vis.social avatar

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

smote, to trans
@smote@mastodon.social avatar
tomkindlon, to bluesky
@tomkindlon@disabled.social avatar

In case of interest, I’ve recently passed 1000 followers on:

This is from posting pretty much solely on #MECFS , #LongCovid and related conditions and to a lesser extent chronic illness in general, which shows it is possible to build up followings on them, in case people either gave up on them or never tried.

@longcovid @mecfs

karlpybara, to disabled
@karlpybara@disabled.social avatar

I hate how ableist activists can be.

I constantly see things like ''if you're not going to protests for this issue, you're part of the problem'' or ''don't call yourself an ally if you don't do XYZ''.

Like, I can barely get out of bed on a good day, the best I can do is share posts on social media, if that's not ''good enough'' for you go fuck yourself.

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From The Sick Times:

" ‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals "

https://thesicktimes.org/2024/05/31/they-bungled-it-nih-documents-reveal-how-1-6-billion-long-covid-initiative-has-failed-so-far-to-meet-its-goals/

This is a long article, an in-depth analysis of the NIH RECOVER research project.

There's a lot of data to absorb. I have not read the whole thing myself yet.

@longcovid @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

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

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

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

@longcovid
@chronicillness
@spoonies @mecfs

1/

NatureMC, to Futurology
@NatureMC@mastodon.online avatar

#FollowFriday I recommend @IrishMECFSAssociation if you are interested in studies and #research about #LongCovid #MECFS etc. They provide international informations.

#health #science

wolfsbruder, to mecfs
@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"...

#fibromyalgia #mecfs #ChronicPain

tomkindlon, to punk
@tomkindlon@disabled.social avatar

(pay-walled)
"Is it time to move beyond blood pressure & heart rate during head-up tilt testing?"
https://www.springermedizin.de/is-it-time-to-move-beyond-blood-pressure-and-heart-rate-during-h/27098904

The authors emphasise orthostatic changes in cerebral blood flow, electrocortical activity, heart rate variability, or oxygen extraction, among other physiological changes, can occur in the presence of a completely normal blood pressure or heart rate response on head-up tilt table testing

@pots @longcovid
@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

"COVID can cause new health problems to appear years after infection, according to a study of more than 130,000 patients"

https://fortune.com/well/article/covid-cause-new-health-problems-years-after-infection/

"With more than 130,000 patients, the study is by far the largest so far to track the progress of the virus over a full three-year period."

@longcovid @mecfs

#Covid #Covid19 #LongCovid #PostCovid #MEcfs

caity, to mecfs
@caity@bne.social avatar

Last Boosted Toot (re the Emerge Recommendations for 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?

smote, to trans
@smote@mastodon.social avatar
smote, to trans
@smote@mastodon.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.

He concludes: "Does anyone think that LP or its promoters are remotely serious?"

https://edzardernst.com/2024/05/almost-anyone-can-recover-from-long-covid-just-pay-a-lot-of-money-for-the-lightning-process-no-please-dont-i-was-joking/

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

BBC: #LongCovid course is 'exploiting people', says ex-GB rower

Former Team GB rower Oonagh Cousins was offered a free course of the contested
alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions.

@longcovid #PwLC #MEcfs @mecfs #LC

1/

smote, to trans
@smote@mastodon.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
The Norwegian Broadcaster NRK has an article about the survey from the European ME Alliance (EMEA) which included 11 000 people from 44 countries. 74% answered they have little to no health care.

Google translation:
https://www-nrk-no.translate.goog/sorlandet/3-av-4-svarte-at-de-fikk-lite-eller-ingen-stotte.-anja-vil-vaere-en-inspirasjon-for-andre-med-me-1.16838776?_x_tr_sl=no&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

@mecfs

1/

smote, to trans
@smote@mastodon.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New from an Italian team of authors:

Does PI-ME/CFS* recall () syndrome?

Free full text:
https://www.sciencedirect.com/science/article/pii/S0168170224000868

*post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The winning entry for a UK competition for medical students

Learning points about myalgic encephalitis/ : Bridging the gap between research, clinical practice and awareness

Free:
https://journals.sagepub.com/doi/full/10.1177/14782715241257968

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New sympathetic editorial:

Medical students highlight the importance of medical education, kindness, compassion & belief when learning about patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

Free:
https://journals.sagepub.com/doi/full/10.1177/14782715241255977

#MEcfs #CFS #PwME @mecfs

smote, to trans
@smote@mastodon.social avatar
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