LLS, to mecfs
@LLS@wandering.shop avatar

Today I had a sneezing fit and just like that I’m out of spoons

#MECFS

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From #MEAction

"#TeachMETreatME: Celebrating An Impactful Campaign"

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

"We are THRILLED to share the rolling successes of our 'Teach ME Treat ME' campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months!"

Article has lots more details along with reports of other Millions Missing events! 😁

1/2

@mecfs

#MEcfs #PwME #LongCovid #PostCovid #MedEd #MedMastodon #MillionsMissing

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 13:

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

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

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #MyalgicEncephalomyelitis #Science4ME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
An open letter to Anna Gregorowski, chair of BACME (British Association of Clinicians in ME/CFS), from Members of the ME community, facilitated by the Chronic Collaboration.

https://organise.network/actions/petition-an-open-letter-to-anna-gregorow-Nks6ZAJG

@mecfs

1/

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New from Germany

"Predictors of Postviral Symptoms Following Epstein-Barr Virus-Associated Infectious Mononucleosis in Young People"

https://www.medrxiv.org/content/10.1101/2024.05.17.24307333v1

"A clinical history of immune dysregulation [&] distinct severe IM symptoms might predict protracted post-viral disease"

@mecfs

@mecfs_de

AndrewGiffordphotography, to mecfs
@AndrewGiffordphotography@mastodon.social avatar

The mighty mitochondria - from my photo project about ME/CFS

https://glass.photo/andrewgifford/6lp8OC9jPWMsaPWxnvRKfm

ALT: colour photo of raw egg on tin foil with lots of liquid filled capsules amongst the egg white, representing mitochondria in the cell

#MECFSart #MECFSphotography #MECFS #LongCovid #stilllife #photography

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

A thread for eleven #MECFS, #LongCovid and related research papers from w/c 13th 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.

1/12

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

AndrewGiffordphotography, to mecfs
@AndrewGiffordphotography@mastodon.social avatar

Living vicariously - from my photo project ME/CFS

https://glass.photo/andrewgifford/1lno0Uk0hXjqx1RPt8d3w4

ALT: colour photo of large stack of grey and blue blu ray discs

#MECFSart #MECFSphotography #MECFS #MyalgicEncphalomyelitis
#LongCovid #photography #stilllife

s4me, to mecfs
@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/

drandrewv2, to random
@drandrewv2@freeradical.zone avatar

Apropos of oh-holy-shit-I’ve-got-3-working-days-to-do-ALL-THE-THINGS, I’m reading self-help articles about how to deal with the

My God, some of the advice is SHOCKING:

“Make your weekend more enjoyable by doing work at a café, or in your pyjamas”

🫠

However bad things might be, at least I know that working (at 3am) on my days off is a shit idea, and both unsustainable and counterproductive as a habit.

drandrewv2,
@drandrewv2@freeradical.zone avatar

If there’s one thing I’ve learned from living with , it’s that “a change is as good as a rest” is just not true.

In the absence of rest, a change might be better than nothing, but you still need rest - and REGULARLY.

Eg: 1hr physical exertion + 1h mental exertion is better than 2hrs mental exertion, but neither gives any rest at all. You might not know it, but your cortisol levels and your nervous system absolutely do.

You can’t cheat at resting.

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

oldperl, to mecfs German
@oldperl@mastodon.online avatar

👇☝️ #LongCovid #PostCovid #fatiquesyndrom #mecfs @longcovid

schaumburgernachrichten@schaumburg.social - Long Covid: Nehmen wir Betroffene nicht ernst genug? - Viele von Long Covid Betroffene fühlen sich nicht ernst genommen. Georg Schomerus forscht zur Stigmatisierung und sagt: Die Krankheit wird in der Tat missverstanden. Was es bedeuten kann, wenn selbst Ärztinnen und Ärzte die Symptome fehl­interpretieren. https://www.sn-online.de/gesundheit/long-covid-nehmen-wir-betroffene-nicht-ernst-genug-P3WNZKXRLNE4JOT6OVANSQ3M5I.html

corrosivedream, to mecfs 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

Dynamicallydisabled, to random
@Dynamicallydisabled@spore.social avatar
Dynamicallydisabled,
@Dynamicallydisabled@spore.social avatar

Not Quite a Ghost 📚 In this middle grade book, the main character simultaneously deals with a spooky presence in her new house, and a confusing new . The author does a great job portraying some struggles common to and : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of . Plus, the suspense makes it a great audiobook.

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

melsdung, to mecfs 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, 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/

simon_michalke, to mecfs 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, 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

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