Krzysztof Dmowski @xaphanpl

**Chronic Illness Humor Funny** @ChronicIllnessHumor@mastodon.social · 1d

Chronic Illness Humor Funny @ChronicIllnessHumor@mastodon.social

Nothing hurts more than being called lazy when you are struggling to even get out of bed.

#chronicillness #mentalhealth #depression

Replied in thread

**Douglas** @douglasvb@mastodon.social · 2d

Douglas @douglasvb@mastodon.social

The #LongCOVID #CFS specialist cautioned to not overdo it and to ease back into things but I'm already basically back up to my old level of work load (although keeping it below 50hs/wk instead of the old 80+ hrs). I'm slowly going to be ramping up more physical activity. I've been doing more walking and standing throughout the day. And my office is usually 75f due to poor building design and that's not impacting me (I was heat intolerant for about a year).

But my PCP already signed paperwork...

Replied in thread

**Douglas** @douglasvb@mastodon.social · 2d

Douglas @douglasvb@mastodon.social

I upped the #Zepbound dosage to 5mg today. I've been feeling so great on 2.5mg and my PCP convinced me to go up to 5mg for the therapeutic weight loss dosage. But wow it's been like throwing a light switch for my #CFS #LongCOVID. I'm very close to back to normal with my cognitive functions.

I have had appointments with my PCP and the specialist at Stanford. My PCP is much more enthusiastic than the specialist about my progress. I guess this is an unusual and unexpected result?

**Chronic Illness Humor Funny** @ChronicIllnessHumor@mastodon.social · 4d

Chronic Illness Humor Funny @ChronicIllnessHumor@mastodon.social

I say things like, "I'm gonna get so much done today," and then take a 10 hour nap

#chronicillness #spoonie #autoimmune

**Tom Kindlon** @tomkindlon@disabled.social · 5d

Tom Kindlon @tomkindlon@disabled.social

I’m one of many in this awareness video.

From @ http://this.is.the.illness.m.e on Instagram :

"This video might take a few minutes to watch, but M.E takes years. Decades. Whole lives.

"Today is May 12th, the International ME Day. Living with ME (Myalgic Encephalomyelitis) means missing out on life while the world moves on without you.

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

**Tom Kindlon** @tomkindlon@disabled.social · May 6

May 6

Tom Kindlon @tomkindlon@disabled.social

Important new research from the Netherlands:

Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest

https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers @covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

Abstract
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where symptoms worsen with cognitive or physical exertion. PEM often results in avoidance of physical activity, resulting in a lower aerobic fitness, which may contribute to skeletal muscle abnormalities. Here, we compared whole-body exercise responses and skeletal muscle adaptations after strict 60-day bed rest in healthy people with those in patients with long COVID and ME/CFS, and healthy age- and sex-matched controls. Bed rest altered the respiratory and cardiovascular responses to (sub)maximal exercise, while patients exhibited respiratory alterations only at submaximal exercise. Bed rest caused muscle atrophy, and the reduced oxidative phosphorylation related to reductions in maximal oxygen uptake. Patients with long COVID and ME/CFS did not have muscle atrophy, but had less capillaries and a more glycolytic fibers, none of which were associated with maximal oxygen uptake. While the whole-body aerobic capacity is similar following bed rest compared to patients, the skeletal muscle characteristics differed, suggesting that physical inactivity alone does not explain the lower exercise capacity in long COVID and ME/CFS

**Tom Kindlon** @tomkindlon@disabled.social · May 6

May 6

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:

Having “CFS/ME” deeply impacts “experience of adulthood & relationships, and the consolidation and formation of identity” finds a small Australian study. “People not understanding” was identified as "the biggest struggle" with having the disease

More: http://tinyurl.com/mr3rr8nx

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

"The biggest struggle with having CFS.... I would love to say it's the fatigue, but honestly, it's not. I can deal with the fatigue. I've dealt with it for so long now... It's people, really, people and doctors and it's people not understanding"

**Chronic Illness Humor Funny** @ChronicIllnessHumor@mastodon.social · May 5

May 5

Chronic Illness Humor Funny @ChronicIllnessHumor@mastodon.social

#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmunememes #fibromemes #fibromyalgia #spoonie
#fatigue #chronicfatiguesyndrome #cfs #mecfs #autoimmunememes #fatiguecomics

1ST PANEL - guy looks exhausted at his laptop and says "I'm so fatigued all the time" and coworker smiles and says 'take this. it will give you energy'

2ND PANEL - 1st guy chugs it - the can says 'need to work for the money to pay for my meds'

**Tom Kindlon** @tomkindlon@disabled.social · May 5

May 5

Tom Kindlon @tomkindlon@disabled.social

Documentary: Doctors as Patients

https://youtu.be/J0ywwLIfH_w?si=hZv0mzlGtnLzpwim

Screenshot is from the latest Science for ME weekly update

Documentary Doctors as Patients
A moving, honest and thought provoking documentary interviewing five medical doctors with post-acute infection-associated syndromes like ME, Long Covid and chronic Lyme. They talk about their experiences, what they were taught about these illnesses as students and what they have learned as patients. Directed by Anil van der Zee. The documentary is in Dutch and has English subtitles.
Documentary l Thread

Replied to Irish ME/CFS Association

**Petra van Cronenburg** @NatureMC@mastodon.online · May 3 *

May 3 *

Petra van Cronenburg @NatureMC@mastodon.online

@IrishMECFSAssociation @mecfs Another proposition for #alt4you:

Graphic explaining the name of ME = Myalgic Encephalomyelitis coming from: My (muscle) + algic (pain) and Encephalo (brain) + myelitis (spinal cord inflammation), in some countries also known as Chronic Fatigue Syndrome, CFS.

#ME #CFS