Danke an @sonjalemke und andere, die bei der Demo vor dem Bundesforschungsministerium waren und mit den Eltern betroffener Kinder gesprochen haben. Eure Solidarität ist so wichtig! #MEcfs #LongCovid
Danke an @sonjalemke und andere, die bei der Demo vor dem Bundesforschungsministerium waren und mit den Eltern betroffener Kinder gesprochen haben. Eure Solidarität ist so wichtig! #MEcfs #LongCovid
"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by
https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting
Gives 9 different short ways to relax the body
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#POTS @pots
"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by
https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting
Gives 9 different short ways to relax the body
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#POTS @pots
Finished reading this almost cover to cover - Dr Louise Newson’s book called The Definitive Guide to the Perimenopause and Menopause.
If you or someone who know might be impacted by perimenopause or menopause - in the future or now - read this! Or a book like it.
Perimenopause and menopause is so much more than hot flushes and brain fog. It can disrupt many bodily systems causing both physical and mental health problems and it often isn’t intuitive to consider whether hormones might be involved in those.
This book is relatively inclusive of trans and nonbinary folx, also mentions the common experiences of people with ADHD, early menopause (for various reasons), post natal depression, and many relevant health conditions from PMDD to POI.
Don’t wait until you’re a “certain age”, read up about it all now because the impacts can begin sooner than you might realise.
To fellow autistics: I saw a survey of autistic people a while ago that showed most people really benefit from know about perimenopause and menopause in advance. On the flip side of this, many people end up discovering they are neurodivergent because perimenopause broke their ability to mask and cope. This book (and others like it) can forearm you with enough knowledge to ask a GP for help and early.
For anyone with a pre-existing chronic illness that has an inflammatory component to it like I have, note that perimenopause can mess things up with that too!
@mecfs @autistics
#ADHD #ActuallyAutistic #pwME #MEcfs #perimenopause #menopause
Finished reading this almost cover to cover - Dr Louise Newson’s book called The Definitive Guide to the Perimenopause and Menopause.
If you or someone who know might be impacted by perimenopause or menopause - in the future or now - read this! Or a book like it.
Perimenopause and menopause is so much more than hot flushes and brain fog. It can disrupt many bodily systems causing both physical and mental health problems and it often isn’t intuitive to consider whether hormones might be involved in those.
This book is relatively inclusive of trans and nonbinary folx, also mentions the common experiences of people with ADHD, early menopause (for various reasons), post natal depression, and many relevant health conditions from PMDD to POI.
Don’t wait until you’re a “certain age”, read up about it all now because the impacts can begin sooner than you might realise.
To fellow autistics: I saw a survey of autistic people a while ago that showed most people really benefit from know about perimenopause and menopause in advance. On the flip side of this, many people end up discovering they are neurodivergent because perimenopause broke their ability to mask and cope. This book (and others like it) can forearm you with enough knowledge to ask a GP for help and early.
For anyone with a pre-existing chronic illness that has an inflammatory component to it like I have, note that perimenopause can mess things up with that too!
@mecfs @autistics
#ADHD #ActuallyAutistic #pwME #MEcfs #perimenopause #menopause
Arrived in #Tschiertschen, my home, yesterday.
Reading in the sun, outside.
#WritingRetreat is off to a good start after some exciting adventures in France these last ten days. More on that later...
I'm still processing and recovering from my travels, which is where I feel the limitations of my #MECFS most acutely.
Recommend me affordable, ready-made, shelf-stable sauces that actually taste nice.
I'm trying to create quick and easy dishes that my spoonie arse can occasionally make that also taste nice.
I have embraced frozen vegetables, but I've had some bad experiences with premade sauces.
I love Lloyd Grossman's tomato and chilli, but Sharwood and Sainsbury's own brand were rank. I swear 20 years ago they were fine...
(Please only looking for shelf-stable sauces, not other recs.) #mecfs #disability
Recommend me affordable, ready-made, shelf-stable sauces that actually taste nice.
I'm trying to create quick and easy dishes that my spoonie arse can occasionally make that also taste nice.
I have embraced frozen vegetables, but I've had some bad experiences with premade sauces.
I love Lloyd Grossman's tomato and chilli, but Sharwood and Sainsbury's own brand were rank. I swear 20 years ago they were fine...
(Please only looking for shelf-stable sauces, not other recs.) #mecfs #disability
Sustained illness burden over time among Australians with myalgic encephalomyelitis/chronic fatigue syndrome — Breanna Weigel et al.
"Importantly, no significant differences were observed in any measure of symptom presentation, overall perceptions of health status, QoL, functional capacity or fatigue impact over the 12-month study period."
#MECFS
Characterization of Post-Viral Infection Behaviors Among Patients With Long COVID: Prospective, Observational, Longitudinal Cohort Analyses of Fitbit Data and Patient-Reported Outcomes — Tianmai M Zhang
"Our finding that a lower [moderate-vigorous physical activity] level was associated with more improvements in outcomes in the long-term seems to suggest some benefit from reduced activity."
#MECFS
Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome— Helena M. Huhmar et al.
"Our results reveal a high prevalence of low P-VP, low urine osmolality and high plasma osmolality after overnight water restriction." "The high incidence of low VP in our patient cohort suggests that chronic down-regulation of VP secretion may be an elementary part of pathophysiology of ME/CFS"
#MECFS
https://www.endocrinepractice.org/article/S1530-891X(25)01349-7/abstract
Sustained illness burden over time among Australians with myalgic encephalomyelitis/chronic fatigue syndrome — Breanna Weigel et al.
"Importantly, no significant differences were observed in any measure of symptom presentation, overall perceptions of health status, QoL, functional capacity or fatigue impact over the 12-month study period."
#MECFS
Science for ME: News in Brief
29 Dec 2025 - 4 Jan 2026
This week's research articles, media items, advocacy and other news relating to #MECFS and #LongCovid
@mecfs
https://www.s4me.info/threads/news-in-brief-january-2026.48068/post-665128
Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome— Helena M. Huhmar et al.
"Our results reveal a high prevalence of low P-VP, low urine osmolality and high plasma osmolality after overnight water restriction." "The high incidence of low VP in our patient cohort suggests that chronic down-regulation of VP secretion may be an elementary part of pathophysiology of ME/CFS"
#MECFS
https://www.endocrinepractice.org/article/S1530-891X(25)01349-7/abstract
Science for ME: News in Brief
29 Dec 2025 - 4 Jan 2026
This week's research articles, media items, advocacy and other news relating to #MECFS and #LongCovid
@mecfs
https://www.s4me.info/threads/news-in-brief-january-2026.48068/post-665128
Petition asking the city of Los Angeles to light up city hall for LC Awareness Day in March (Teal is our color!)
Can email the LA city council too: cityclerk@lacity.org
#LongCovid #MECFS #ChronicIllness #PublicHealth #LightingDesign #LosAngeles
Da ja seit gestern offiziell die "Nationale Dekade gegen Postinfektiöse Erkrankungen" (in Deutschland) begonnen hat, habe ich darüber nachgedacht, wie man das Thema auch auf Social Media präsenter machen kann.
Ein Grund dafür ist, dass mit dieser "Nationalen Dekade" bei vielen nicht-Betroffenen mehr das Bild entstehen könnte, dass sich ja jetzt "darum gekümmert wird" und man selber dementsprechend noch weniger Grund hat, sich überhaupt mit dem Thema zu beschäftigen.
1/
Da ja seit gestern offiziell die "Nationale Dekade gegen Postinfektiöse Erkrankungen" (in Deutschland) begonnen hat, habe ich darüber nachgedacht, wie man das Thema auch auf Social Media präsenter machen kann.
Ein Grund dafür ist, dass mit dieser "Nationalen Dekade" bei vielen nicht-Betroffenen mehr das Bild entstehen könnte, dass sich ja jetzt "darum gekümmert wird" und man selber dementsprechend noch weniger Grund hat, sich überhaupt mit dem Thema zu beschäftigen.
1/
Walter Koroshetz was head of NIH's neurology institute for a decade. In 2017, when I was a research patient at NIH in an ME/CFS study, he spent 90 minutes one evening talking to my late partner, Beth Mazur, about ME/CFS and how NIH was going about its research. Beth gave him a bunch of good ideas and he listened... institute directors tend to be busy people and I appreciate his attention to a patient advocate.
Now the Trump admin has fired him.
Walter Koroshetz was head of NIH's neurology institute for a decade. In 2017, when I was a research patient at NIH in an ME/CFS study, he spent 90 minutes one evening talking to my late partner, Beth Mazur, about ME/CFS and how NIH was going about its research. Beth gave him a bunch of good ideas and he listened... institute directors tend to be busy people and I appreciate his attention to a patient advocate.
Now the Trump admin has fired him.
Sympathetic article in a Scottish local newspaper
https://www.pressandjournal.co.uk/fp/politics/6915777/aberdeen-chronic-fatigue-me/
“There’s plenty of cases where folk have done the graded exercise, and now they’re in wheelchairs,”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
Ich werde im Februar wg. Post Covid eine Reha antreten.
Ich bin trotz Wunschklinik, dies das, in einer psychosomatischen Klinik im Schwarzwald gelandet und werde voraussichtlich 5 Wochen lang aktiviert.
Gibt es Tipps, wie ich das ohne bleibende Schäden überstehe, ohne am Ende den Stempel Totalverweigerer im Bericht stehen zu haben?
[edit: Meine Frage richtet sich primär an Reha-erfahrene Menschen. Und es gibt gute Gründe die Reha anzutreten.]
