corrosivedream, German "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!
tomkindlon, 🧵
Factors associated with having previously received a diagnosis of #fibromyalgia, #chronicfatiguesyndrome and #irritablebowelsyndrome : A cross sectional DanFunD studyFree full text:
https://www.sciencedirect.com/science/article/pii/S0022399924001053#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@fibromyalgia #fibro #fms @ibs1/
tomkindlon, 🧵
“Remarkable researchers hunting for ‘something in the blood’ of people with ME”Blog post by Simon McGrath discussing an upcoming UK research study
#MEcfs #PwME #CFS @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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melsdung, German 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."
tomkindlon, 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
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
simon_michalke, German "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, News from NIH: ME/CFS Research Roadmap now available
Links in image:
https://videocast.nih.gov/PastEvents
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
tomkindlon, New important guidelines in German
Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Free:
https://link.springer.com/article/10.1007/s00508-024-02372-y#MEcfs #CFS #PwME @mecfs @mecfs_de
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tomkindlon, 2/
Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von #MyalgischerEnzephalomyelitis / #ChronischemFatigueSyndrom
Frei
https://link.springer.com/article/10.1007/s00508-024-02372-y
tomkindlon, 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."
tomkindlon, 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 #PACEtrial which he describes as "what is possibly the worst medical trial in modern history. (contd)”
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID1/
tomkindlon, 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".
#GradedExerciseTherapy #CBT #skeptic #sceptics
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
ahimsa_pdx, 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."
ahimsa_pdx, Anil van der Zee's blog:
https://anilvanderzee.com/blog/
and his account on Bluesky:
qwertziop, German 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, Long list of hashtags:
@chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PwLC @fibromyalgia
#Fibromyalgia #Fibro #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
Aileen22, German @tomkindlon @chronicillness @spoonies @mecfs @longcovid @fibromyalgia Yes, like that, exactly like that.
btschumy, 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, @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 #MECFS is gauging how I’m doing. Either I’m in pain and fog, or not. Argh!
btschumy, @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,
tomkindlon, New:
Socioeconomic determinants of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome in Norway: a registry studyFree:
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-18757-7Comment: Lower health literacy/similar could make it more difficult for people with lower educational attainment to get diagnosed
1/
tomkindlon, 2/
Informal summary of/comment on "Socioeconomic determinants of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome in Norway: a registry study" by authors
ahimsa_pdx, How ME/CFS shrinks your world, bit by bit
art by Kornelia Paulsen
#MEcfs #PwME #MyalgicEncephalomyelitis #MillionsMissing #WorldMEDay #MEAwarenessDay
Raccoon, @ahimsa_pdx
Feeling this real hard lately... Doctor's appointments can mean whole days of nothing else.
doctrix, German @ahimsa_pdx @mecfs so true…
s4me, A thread for eight #MECFS, #LongCovid and related research papers from w/c 6th 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.
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ahimsa_pdx, 💙 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 #PwME #WorldMEDay #MEAwarenessDay #MEAwareness #MyalgicEncephalomyelitis
ahimsa_pdx, Sharing information about the Mayo ME/CFS document (Diagnosis and Management of ME/CFS) - and the associated CME (Continuing Medical Education) - is a great way to immediately improve patient care for people with ME/CFS.
Remember, roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.
Need help crafting an email to send to your doctor? Here's a template:
https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit
5/n
#MedEd #MedMastodon #TeachMETreatME #MEcfs #LongCovid #WorldMEDay #MEAwarenessDay
ahimsa_pdx, If you've read this far, thanks so much for listening! ❤️
And if you have the ability (only if you are not struggling yourself!) then you can make a donation to #MEAction here:
https://www.meaction.net/millionsmissing-fundraiser-2024/
6/6
#MEcfs #PwME #LongCovid #MEAction #MEAwarenessDay #WorldMEDay
antdesros, @mecfs
Welcome to the PwMElympics
People with myalgic encephalomyelitis (PwME) perform daily exploits.
Decathlon: working outside home
Climbing: going upstairs
Marathon: walking
Relay Race: taking part to a conversation
Gymnastics: turning in bed
Obstacle course: getting a disability pension
https://www.youtube.com/watch?v=zTXaxN1QObA
Design and illustration by @cmgouin cmgouin.com
aqem.ca
#MEcfs #May12 #MEAwarenessDay #pwME #OlympicGames #ParalympicGames
ahimsa_pdx, Personal story from @ehashman for International ME/CFS Awareness Day:
Quote:
"One of my acquaintances cried when they last saw me in person. But frankly, I love my wheelchair.
I am not "wheelchair-bound" — I am bed-bound, and the wheelchair gets me out of bed. My chair hasn't taken anything from me."
Also included: a list of ME/CFS advocacy groups and what you can do to help ❤️
#MEcfs #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis #Disability #Wheelchair
lia_pas, It’s #MEAwarenessDay 💙 I got sick with a virus the summer of 2015 and had to quit everything. I’m grateful I was able to find ways to make art again, but I’m still very limited in what I can manage. Here’s some ways you can enjoy my art & help the #MECFS community
From: @lia_pas
https://vis.social/
s4me, Discover #MECFS, #LongCovid and related news, advocacy and research from w/c 6th May in our News in Brief post.
Find summaries and further reading links for:
News, advocacy and articles
Research news
Crowdfunding
Coming events
Researchhttps://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-531761
tomkindlon,
anubis2814, @mlanger @Puck @tomkindlon Yeah i had to suspend my disbelief and worry for the mouse.
Aileen22, German @tomkindlon @mecfs I like that one 😊🫶🏽
antdesros, @mecfs
This is an entirely English-translated version of the first element of the ME awareness campaign made by CMGouin and AQEM, the ME association of Quebec.
You know Olympics and Paralympics, but do you know there are also PwMElympics.
Decathlon: working outside home
Design and illustration by CMGouin cmgouin.com
aqem.ca
You can find the other elements of the campaign at @cmgouin (though they're not entirely translated)
#MEcfs #May12 #MEAwarenessDay #pwME #OlympicGames #ParalympicGamesPwMEOLYMPICS Severity level of the ME: light (first level) Decathlon: working outside home Duration: 8 hours Level of difficulty : 9/10 Possible side effects: concentration disorders, migraine, pain, post-effort malaise, deterioration of health status with loss of capacity People with myalgic encephalomyelitis (PwME) perform daily exploits
Myalgic encephalomyelitis (ME) is a devastating, chronic and complex disease that hinders all aspects of life. ME affects children, adolescents and adults of all ages and backgrounds. Yet people with myalgic encephalomyelitis (PwME) perform daily exploits. Design and illustration: CMGouin.com Production : AQEM.ca
wolfsbruder, #mecfs #fibromyalgia #CFS #PEM #POTS
<rant>
So I need to make more space and lose more of my own living space to move the AC so that the temp differential doesn't kill the TV that I can not afford to replace.
I needed to get spoons to get up and do this, as I am bed-bound.
My 11 yro is angry that I am not doing what he wants, and would not let me do what I needed to get spoons, he stole my spons.
And now he is livid at me, because I have less spoons than I started the day with, I can't do now, hell I can't even eat now.
And he is screaming at me blaming me for not doing what needed to be done so he could get what he wanted in the first place.
I am so exhausted and overheating with my meds; if I overheat, bad things happen.
And he just doesn't get it.
As far as he is concerned, it's all my fault that his day and plans, which he never shared, to begin with, are ruined.
</rant>
ahimsa_pdx, @wolfsbruder ]sorry this happened, it sounds so exhausting 😔
sending you some love ❤️