ME/CFS (kbin)

tomkindlon,
@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

s4me,
@s4me@med-mastodon.com avatar

Our latest News in Brief post gives headlines and links to further reading for , and related news and research from w/c 13th May.

Topics covered this week:
News, advocacy and articles
Research news
Crowdfunding
Coming events
& Research

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-533010/

tomkindlon,
@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

Aileen22,
@Aileen22@mastodon.social avatar

@tomkindlon @mecfs Wow, that is a really cool idea 😃

corrosivedream, German
@corrosivedream@troet.cafe avatar

"Bis zum Jahr 2033 werden voraussichtlich eine Milliarde Menschen an leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."

Es wird Zeit für ernsthafte Therapieforschung und Infektionsprävention durch !

https://www.manager-magazin.de/lifestyle/long-covid-konferenz-wir-muessen-uns-endlich-eingestehen-wie-gewaltig-dieses-problem-ist-a-4389644b-1795-4acf-bccf-759d6dce1982?d=1715868138

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

2/

In this study, having previously received an functional somatic syndrome diagnosis such as CFS was associated with female sex and poor health-related quality of life. No association was found for health anxiety, kinesiophobia and physical activity.

@mecfs @fibromyalgia @ibs #mecfs #cfs #fibromyalgia #ibs

tomkindlon,
@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,
@tomkindlon@disabled.social avatar

2/

Dr Audrey Ryback (who is funded by Action for ME) and Charlie Hillier plan to replicate with a larger sample work by Fluge and Mella who found something in serum that changed the behaviour of healthy lab-grown muscle cells.


@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

3/

They will use the Seahorse anlayser to look at glycolysis and mitochondrial respiration. Using a stain and microsocopy, they will look for the mitochondrial fragmentation that Prusty saw, and will also investigate how serum might affect cell function.

#MEcfs #PwME #CFS
@mecfs

melsdung, German
@melsdung@nrw.social avatar

Heute mal wieder im Büro gewesen, wo der soziale Druck - ausgesprochen oder unausgesprochen - auf mich immer am stärksten wirkt. Übertreibe ich nicht vielleicht doch mit der Maskenkonsequenz?

Und dann kommt man nach Hause und liest das. 🤯

"Bis zum Jahr 2033 werden voraussichtlich eine Milliarde Menschen an Long Covid leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."

https://www.manager-magazin.de/lifestyle/long-covid-konferenz-wir-muessen-uns-endlich-eingestehen-wie-gewaltig-dieses-problem-ist-a-4389644b-1795-4acf-bccf-759d6dce1982

#CovidIsNotOver #LongCovid #MECFS #UniteToFight2024

tomkindlon,
@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

simon_michalke, German
@simon_michalke@social.diehumanisten.de avatar

"Believe your patients. The vast majority of people don't pretend to be sick. They pretend to be well."

Important words from Pam Bishop

Thank you for the awesome talk!

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

2/

Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von /

Frei
https://link.springer.com/article/10.1007/s00508-024-02372-y

@mecfs @mecfs_de

tomkindlon,
@tomkindlon@disabled.social avatar

3/

Good to see:
"For the latter [ME/CFS], overload (e.g. through sports or activating rehabilitation measures) leads to a deterioration of the condition. , while patients with depression or burnout usually benefit from activating measures. For ME/CFS sufferers, "pacing" instead of activation is therefore at the center of disease management."

@mecfs @mecfs_de

tomkindlon,
@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,
@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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar
qwertziop, German
@qwertziop@digitalcourage.social avatar

Wenn ich jemandem erzähle, dass ich den Aufzug nehmen muss, auch wenn‘s nur eine Etage ist, bekomme ich sehr häufig die Antwort: „seit der letzten Corona-Infektion kann ich nach der Arbeit nur noch liegen“, oder „ich bin zwar gesund, aber war seitdem nicht mehr joggen“.

Nur mal so zur Info an die Ärzte, die „sowas ja noch nie gehört haben! Das sind doch nur Faulenzer, die in Frührente wollen.“

#mecfs #PostCovid

tomkindlon,
@tomkindlon@disabled.social avatar
Aileen22,
@Aileen22@mastodon.social avatar
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