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.

@mecfs

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 patients who organised the conference.

@mecfs_de @mecfs

@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 #ChronicFatigueSyndrome"

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

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @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

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
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
Socioeconomic determinants of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome 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
#MEcfs #CFS #PwME

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

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

Recording of 21-minute Cape Talk Radio interview this morning Bettie Hough who’s lives with ME & Chair of ME & Long Covid Unite SA & Prof Resia Pretorius

https://www.primediaplus.com/2024/05/11/intense-fatigue-brain-fog-understanding-me-and-the-support-available-in-sa

Some text extracts are also at the link

@mecfs

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

New from the US:

Mitochondrial DNA Missense Mutations ChrMT: 8981A > G and ChrMT: 6268C > T Identified in a Caucasian Female with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (#MECFS) Triggered by the Epstein-Barr Virus

Free:
https://www.hindawi.com/journals/crig/2024/6475425/

#CFS #PwME @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Dame Shirley Conran, author and campaigner who blazed a trail with Superwoman and Lace – obituary Telegraph Obituaries"

Free:

https://www.yahoo.com/news/dame-shirley-conran-author-campaigner-102213353.html

Following my mother writing to her, she once did an interview on ME on Irish national radio

RIP

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

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
Sex and disease severity-based analysis of steroid hormones in ME/CFS

Free full text:
https://link.springer.com/article/10.1007/s40618-024-02334-1

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

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

The recording has just been made available for the NIH ME/CFS Symposium on May 2 on the $8M study "Deep phenotyping of post-infectious / "
https://videocast.nih.gov/watch=54675

Agenda is here:
https://mregs.nih.gov/channels/F1P5-F2L3

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The prestigious Centers for Disease Control and Prevention (CDC) in the US have released their ME/CFS International Awareness Day (May 12) page for 2024

https://www.cdc.gov/me-cfs/resources/awarenessday.html

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

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