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#mecfs

69 posts34 participants0 posts today
Public
Tom Kindlon

🧵
Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, Seltzer):

"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
salon.com/2025/04/01/admins-on

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

Salon logo Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS By Elizabeth Hlavinka Staff Writer Published April 1, 2025 5:30AM (EDT) Updated April 1, 2025 12:55PM (EDT)
Public
Tom Kindlon

(UK)
"I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME & #longCovid ..."

threadreaderapp.com/thread/190

#MEcfs #chronicillness #Spoonies @mecfs @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

miss m Profile picture miss m @FatiguedStill 14h • 15 tweets • 2 min read • Read on X Last night I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME and long Covid 🧵 People with ME and long Covid will only receive points for cooking, washing and dressing. It's unlikely we'll receive points in any other activity. Few applicants will be awarded points for eating and drinking. It's viewed that if you can grip cutlery, no matter how much pain you're in or how long it takes you to eat, then you are independent. Only applicants with eating disorders or a paralytic hand will be awarded points.
Public
Tom Kindlon

From Turkey:

Awareness and Perception of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Among Pain Specialists: A Questionnaire-Based Study

cureus.com/articles/347520-awa

Image is from the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Cureus Awareness and Perception of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Among Pain Specialists: A Questionnaire-Based Study — Gürsan Güneş Uygun et al. "One possible reason for the low awareness of the link between fatigue and orthostatic intolerance is the difficulty in accessing evaluation methods. Participants who do not have access to these tests in clinical practice may fail to recognize the relationship between fatigue and dysautonomic disorders."
Public *
LN

Liebe Bubble,
Ich bin auf der Suche nach einem guten Tracker für Medikamente auf Android. Meine Frau wurde mit #mecfs diagnostiziert. Nicht, dass dies selbst schon schwierig genug wäre, ist das korrekte Einnehmen der Medikamente für sie gerade auch nicht so einfach. Die Apps, welche ich bis jetzt gefunden habe, hatten massenhaft Werbetracker und co drin... Kennt da jemensch etwas?
Danke für einen Boost ❤️
#chronicillness #medikation

Public
ahimsa

"The History of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign"

thesicktimes.org/2025/03/31/th

This campaign was inspired by George Monbiot who called the history of mistreatment of people with Myalgic Encephalomyelitis (ME) the “greatest medical scandal of the 21st century”

Note: Most patients in the USA get a diagnosis of ME/CFS, not ME. CDC info here:

cdc.gov/me-cfs/about/index.htm

As Monbiot wrote, ME still has no approved treatments decades after being first recognized. This lack of scientific progress is too often explained as patients unwilling to get better or an illness too complicated to understand. But in reality, an intentional campaign has obstructed scientific breakthroughs and cures and stigmatized the illness. As a result, medical professionals don’t just neglect people with ME but often only offer them harmful treatments like cognitive behavioral therapy or graded exercise therapy. COVID-19 has added millions of new people with ME to the millions already sick, making coverage of this scandal imperative now more than ever.
#MEcfs#MyalgicEncephalomyelitis#ChronicIllness
Public
ImmedicableME

I’m barely holding it together. Meltdowns and shutdowns almost daily. I’ve had many extremely stressful life events over the past year, in addition to having #MECFS and #Autism, living in the U.S. where existential dread is now the norm, my partner having surgery for breast cancer tomorrow, moving to the state where my partner has been providing end of life care for her elderly mother, me being solo for 7 weeks and ending up bedridden for part of that time.

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