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

Long Covid Advocacy 💙@LongCovidAdvoc:

🌟Stunning video by @PeteJudo
on the PACE trial
'This $8 Million Medical Trial is a Joke'
⚡Worst medical trial in modern history
⚡Worst in its bizarre practices
⚡Worst in potentially fraudulent results
⚡Worst in potential harm to patients

Full 📺👇
https://www.youtube.com/watch?v=bzh8pT-g9v0

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

video/mp4

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Links to:
"Australians Abandoned by Healthcare, Sentenced to “Living Death”: Outdated health guidelines and medical fallacies have left thousands of patients neglected and marginalised."

https://amandafrancey.medium.com/australians-abandoned-by-healthcare-sentenced-to-living-death-2d0097184091

Image from the AMMES June e-newsletter

@mecfs

LLS, to mecfs
@LLS@wandering.shop avatar

some days

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Extract from comments by Dr Binita Kane in this popular Guardian article today:

"‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with #longCovid ."
"Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

@mecfs
#MEcfs #CFS #PwME
@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PASC #COVIDBrain

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:

ME Research UK is delighted to announce that we have awarded funding to Prof. François Jérôme Authier and colleagues for a new study assessing neurocognitive impairment in people with ME/CFS. https://bit.ly/3yNR3Uq

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:
Our monthly e-newsletter keeps supporters up-to-date with ME Research UK's activities and research commentary. View May’s e-newsletter online ( https://bit.ly/3VlK91H ) and sign up today - https://rb.gy/0seeyj

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Read the latest (US) National Institute of Neurological Disorders and Stroke [NINDS] Director’s Message from Dr. Walter Koroshetz: Advancing Research on ME/CFS.

https://www.ninds.nih.gov/news-events/directors-messages/all-directors-messages/advancing-research-mecfs

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
s4me, to mecfs
@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, to mecfs
@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

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Systematic review of fatigue severity in ME/CFS patients: insights from randomized controlled trials

Free:
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-024-05349-7

My guess is that a lot of people severely affected by ME/CFS don't feel able to take part in clinical trials

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the News in Brief summary from the Science for ME forum, for week starting May 27:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-535789

This summary includes news articles, videos, research, advocacy, coming events, and more.

@mecfs @longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Applications for access to DecodeME data invited.
"Our ME/CFS data set includes both phenotype and genotype data from thousands of participants, who have consented to us sharing their data on a de-identified basis. (contd)”

https://www.decodeme.org.uk/researcher-access/

#MEcfs #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

1/

s4me, to mecfs
@s4me@med-mastodon.com avatar

Find our summary of , and related news, advocacy and research from w/c 27th May linked below.

Brief headlines and links to further reading are given for the topics:

News, advocacy and articles
Research news
Coming events
& Research

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-535789/

smote, to trans
@smote@mastodon.social avatar
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

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.

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

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

I recommend @IrishMECFSAssociation if you are interested in studies and about etc. They provide international informations.

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

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