ME/CFS (kbin)

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 #LongCovid leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."

Es wird Zeit für ernsthafte Therapieforschung und Infektionsprävention durch #saubereLuft!

#Covid #PostCovid #MECFS #Corona #Wirtschaft

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 #CFS #PwME
@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

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

#MECFS #SevereME #MyalgicEncephalomyelitis #PwME

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.“

tomkindlon,
@tomkindlon@disabled.social avatar
Aileen22,
@Aileen22@mastodon.social avatar
btschumy,
@btschumy@mas.to avatar

After a week of feeling crappy, my ME/CFS wasn’t too bad today. However, I decided to take a nap just to recharge my batteries. When I awoke my dizziness and brain fog was much, much worse. It’s almost like my brain didn’t completely wake up and I’m permanentliy groggy. This ever happen to others of you with ?

@mecfs

LLS,
@LLS@wandering.shop avatar

@btschumy @mecfs Unrefreshing sleep is a common symptom anyway but today maybe the crash was still coming on when you went down for a nap?

There’s always a lag for me between aggravating event (standing too long, sitting up too long, too much exertion or elevated heart rate ) and onset of PEM crash, usually a day-ish. But so often it catches me up short and I’m like wtf did I do?

The hardest thing about is gauging how I’m doing. Either I’m in pain and fog, or not. Argh!

btschumy,
@btschumy@mas.to avatar

@LLS @mecfs It could be I was due for a crash. I’ve been yo-yoing for the past week. But I didn’t do much yesterday and I felt good before the nap. Sure seems like the nap caused it. It makes me wonder if some of the “unrefreshing sleep” and brain fog are just the brain not coming out of sleep correctly. That would be an autonomic nervous system thing.

ChronicIllnessHumor,
@ChronicIllnessHumor@mastodon.social avatar
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