Lmst

A cartoon for anyone who has been disbelieved, and how that disbelief affects the whole of our lives. #ThereForME @theguardian.com@bsky.brid.gy @davetuller1.bsky.social@bsky.brid.gy #ME #Chronicillness #LC #PEM #POTS #LivesWeCannotLive #MissingMillions @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy

The cartoon series is called This Week in Disbelief

The image shows a sceptical doctor and a woman patient.

The dr is saying “So, you think you're suffering from long covid or #ME?”

The woman is replying “Nope, I'm pretty sure I'm suffering from your ignorance!”

The cartoon maker is #FanningTheFlames

PEM isn't deconditioning!

Short article by prominent researchers on this topic
https://bjsm.bmj.com/content/early/2026/02/09/bjsports-2025-111387

#MEcfs #longCovid #PEM
@longcovid @mecfs

Eilen riehuin. Tänään koen flunssaoireita sängyn pohjalla. PEM-oire on perseestä. #RaJU #MEtauti #PEM

After a year of waiting, the tech report on our cost and footprint analysis for hydrogen fuel cell power plants was finally published today! I did the footprint portion which generates plant footprints from a few specs and renders them super nicely.

You can find our report here if you're curious!
https://www.nlr.gov/docs/fy26osti/91146.pdf

We also got approval to open source our code but someone else has to flip the switch on GitHub.

#Research #RenewableEnergy #Hydrogen #PEM

Crawling around in the loft to find a couple of old boxes. Emptying the ashes box from the fireplace. Cleaning out and disinfecting the cat litter trays. I have a strong suspicion that my 'relaxing' Sunday morning is going return to bite me with a vengeance later.

#LongCovid #PESE #PEM

Now out of the hospital and the occupational/physical therapy evaluator came by to review my situation. While my issue was unrelated to #cfs describing my capacity and endurance caused me to mention PEM and she knew exactly what I was talking about.

#mecfs #pem #beingseen #beingbelieved

3/

“The work has to continue, the messy, mundane, bureaucratic and deeply human work: documenting symptoms, pushing for screening and access, training clinicians in #PESE / #PEM and dysautonomia, funding longitudinal research, and insisting that care be co-designed with the people who will use it”

#mecfs #longcovid #pots
@mecfs @longcovid @pots

Extract from:
"Physical Therapy (= physiotherapy) Must Catch Up: Teaching ME/CFS is No Longer Optional"

https://batemanhornecenter.org/physical_therapy_must_catch_up/

Related article:
Clinical Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Curriculum Thread to Meet Accreditation Standards in Physical Therapy Education
https://nsuworks.nova.edu/ijahsp/vol24/iss1/1/

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

This lack of training is especially dangerous because of post-exertional malaise (PEM). PEM, the core feature of ME/CFS, is the delayed worsening of symptoms due to physical, cognitive, emotional or sensory effort, sometimes for days, weeks, or longer. This means many PT strategies, especially graded exercise with automatic activity progression, can be not only ineffective but harmful. [2] Without education on ME/CFS and PEM, PTs may unintentionally cause setbacks, or long-term decline.

Trying to book an accessible holiday is marginally less difficult than trying to buy a new car and a new wheelchair at the same time! #ThereForME @davetuller1.bsky.social@bsky.brid.gy #ME #Chronicillness #LC #PEM @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy

The cartoon series is called’This Week in Disbelief’

The title is ‘Fully Accessible Holiday Rentals’

There is a winding road and a house perched on the edge of a cliff. Access to the house is up a steep sand path littered with rocks. There is a single that says ‘no cars’ and a ramp to the house which is extremely steep and has a step at the bottom

A man is standing at the bottom of the picture and saying “What do you mean
"it's not wheelchair accessible?"
We put in a ramp didn't we!”

The cartoon maker is #FanningTheFlames

Tol betalen achteraf 😑

My #longcOVID life.... #PEM in aantocht

Daggrafiek bodybattery die snachts maar tot eenderde is opgeladen.
Week grafiek heart rate variability die dalende trend toont met vannacht een val van 13 punten.

#ThereForME @theguardian.com@bsky.brid.gy @davetuller1.bsky.social@bsky.brid.gy @cgatist.bsky.social@bsky.brid.gy #ME #Chronicillness #LC #PEM #POTS #LivesWeCannotLive #MissingMillions @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @rcgpt.bsky.social@bsky.brid.gy

The cartoon series is called ‘This Week in Disbelief. Wise Cat is sitting next to the heading

There is one image - it is of a crumbling house sitting on a mountain of bodies. A dilapidated sign saying ‘Wessely School’ is hanging in midair

The title says - “As the sun sets on the BPS model of #ME … it’s foundations are revealed”

The cartoon maker is #FanningTheFlames

Another week, another opportunity for psychiatry to recognise #ME as a serious post-viral illness #ThereForME @theguardian.com@bsky.brid.gy @davetuller1.bsky.social@bsky.brid.gy #ME #LongCovid #Lyme #POTS #PEM @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy @ashleydaltonmp.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy

The cartoon series is called ‘This Week in Disbelief.

There is one image - it is of a crumbling house sitting on a mountain of bodies

The title says - “As the sun sets on the BPS model of #ME…it’s foundations are revealed”

The cartoon maker is #FanningTheFlames

2/‬
‪"I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s‬ ‪being forced to eat a box of fudge to “try” not to become hyperglycaemic"‬

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

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff (repeat)

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

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements
CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required.
Overnight Care Guidance
Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required.
Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance.
Environment: Ensure call bell, water, and medications are within reach before settling for the night.
Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal.
Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated.
Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end.
Personal Care - Showering and Hygiene
Daily shower prompts are not required. Please be guided by the patient as to when capacity allows.
General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms.
Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy

The cartoon series is called ‘This Week in Disbelief’

There is an image of an angry woman with a megaphone. She is shouting ‘THE LIMITATION IN #ME IS NOT IN WHAT I CAN DO, IT’S IN WHAT I CAN RECOVER FROM’

The cartoon maker is #FanningTheFlames

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy @georgemonbiot.bsky.social@bsky.brid.gy @profstevegriffin.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy

This Week in Disbelief

A woman with a megaphone is shouting “The problem in #ME is not what I can do, it's what I can recover from!”

The cartoon maker is #FanningTheFlames

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy

This Week in Disbelief

People with #ME and #LC are learning consistently and fast...

So the enduring mystery is why so many doctors worldwide are not learning anything new at all.

The cartoon maker is #FanningTheFlames

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy

2/‬

‪He highlights how post-exertional malaise can lead a worsening of the condition which could be permanent.‬

‪#LongCovid‬ #MEcfs #PostExertionalMalaise #PEM #CFS #PEM #PESE

@mecfs @longcovid

🧵
"Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"

https://substack.com/home/post/p-178293036

In a thoughtful blog post, the author tries to explain #PostExertionalMalaise and how people who suffer from it need to be very careful with which activities they take on.

He highlights how this symptom can lead a worsening of the condition which could be permanent.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#LongCovid #PEM

1/

#Pem

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