tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The august CDC in the US have redesigned their ME/CFS section [which contains sections for patients/general public & healthcare providers including a section from medical students].

Unclear to me how much is new material

https://www.cdc.gov/me-cfs/about/index.html

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
I was fortunate to experience a nice family celebration today in aid of the Irish ME/CFS Association @irishmecfsassociation
https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation .

Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏

@mecfs

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New preprint:

Epidemiology of among individuals with self-reported in British Columbia, Canada, and their health-related quality of life

https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The UK ME Association:

"We have engaged a distribution company to ensure leaflets & posters are displayed in 3,000 GP surgeries in the UK. This will mean that we will know material is on display & that as leaflets are used, they can be replaced, & usage monitored"

https://meassociation.org.uk/2024/05/me-association-statement-improving-healthcare-for-people-with-me-cfs-and-long-covid/

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Thanks to my mum for getting everything ready for our family on (tomorrow).

We’re doing it in aid of the Irish ME/CFS Association https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation but other worthy charities are available.

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Looking forward to our family blue Sunday [coffee morning] event this Sunday in aid of the Irish ME/CFS Association.

https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation @IrishMECFSAssociation

Other worthy charities also taking part.

#BlueSunday2024 #TeaPartyForME2024 @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Interview by David Tuller DrPH with Co-Organizator of Next Week's Unite To Fight Long Covid & ME/CFS Conference

https://virology.ws/2024/05/08/trial-by-error-interview-with-co-organizator-of-next-weeks-unite-to-fight-long-covid-conference/

Tuller speaks with Marco Wetzel, one of the five German #LongCovid patients who organised the conference.

@mecfs_de #UniteToFight @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"

A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024

https://crowdfund.berkeley.edu/project/42302

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
“Remarkable researchers hunting for ‘something in the blood’ of people with ME”

Blog post by Simon McGrath discussing an upcoming UK research study

https://mecfsresearchreview.me/2024/05/08/researchers-hunting-for-something-in-the-blood-of-people-with-me/

#MEcfs #PwME #CFS @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New research from UK team:
Examining well-being and cognitive function in people with and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study

Free full text:
https://www.sciencedirect.com/science/article/pii/S0002934324002730

Hashtags:
@longcovid

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Good Days, Bad Days: Understanding the Trajectories of Technology Use During "

Free full text:
https://dl.acm.org/doi/pdf/10.1145/3613904.3642553

@mecfs

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

The PACE trial: This $8 Million Medical Trial Is A Joke

https://youtu.be/bzh8pT-g9v0?si=lKaPgE89O297zJad

YouTuber and behavioural scientist Pete Judo presents the infamous which he describes as "what is possibly the worst medical trial in modern history. (contd)”

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

“(Contd) Worst in its bizarre practices, worst in terms of its potentially fraudulent reporting of results, and worst of all its potential harm it has caused to a very vulnerable group of people".


@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From David Tuller:

"Anil van der Zee’s New Video on Living with Severe ME"

https://virology.ws/2024/05/14/trial-by-error-anil-van-der-zees-new-video-on-living-with-severe-me/

"Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severe patient."

@mecfs

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

1/

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

Here's the latest News in Brief from the Science for ME forum for week starting May 6:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-531761

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

Note: A transcript from the CDC's May 6th ME/CFS webinar is now available:

https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf

@mecfs @longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
Socioeconomic determinants of / in Norway: a registry study

Free:
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-18757-7

Comment: Lower health literacy/similar could make it more difficult for people with lower educational attainment to get diagnosed

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

Informal summary of/comment on "Socioeconomic determinants of / in Norway: a registry study" by authors

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

(From the bird site)

ME nieuws @mecvsnieuws

#MEawarenessday video: The ME you don't see

Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.

Watch full video here: https://youtu.be/DJGk-2G3yE4 (NL+ENG subs)

#millionsmissing @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME

video/mp4

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

How ME/CFS shrinks your world, bit by bit

art by Kornelia Paulsen

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 It's May 12th, International ME/CFS Awareness Day 💙

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

(attached photo is from last year)

1/n

@mecfs

#MEcfs #PwME #WorldMEDay #MEAwarenessDay #MEAwareness #MyalgicEncephalomyelitis

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 It's May 12th, International ME/CFS Awareness Day 💙

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

1/n

@mecfs

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

Today is International ME/CFS Awareness Day!

I'm going to try to post a few things on this topic, and I will definitely be boosting a whole lot of posts from other folks!

Just a warning for anyone who might be overwhelmed by my higher than usual level of posting.

Feel free to mute me for the day (love that Mastodon feature!), or filter out related hashtags, or even unfollow - whatever works for you! ❤️

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