Brutkey

ahimsa
@ahimsa_pdx@disabled.social

Vegetarian, book lover📚📚
Living with ME/CFS since 1990 ♿♿️ She/Her

Please use #AltText on images/GIFs/videos ❤❤️

Avatar photo: Old photo of my cat, tabby with white chest & paws.
Banner photo: A group of leafy green trees in a park.

My posts, no boosts = https://justmytoots.com/@ahimsa_pdx@disabled.social?public_only=true

#MEcfs #PwME #LongCovid


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Location
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ME/CFS stands for
myalgic encephalomyelitis / chronic fatigue syndrome
What is ME/CFS?
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-596527
ahimsa
@ahimsa_pdx@disabled.social

From #MEAction -

"ICE Makes Me Sick: Fund Healthcare, Not Violence"

https://www.meaction.net/post/ice-makes-me-sick-fund-healthcare-not-violence

"No more money to ICE. Restore funding for healthcare and independent living support for disabled people."

You can help!

Email your Congress rep using this tool:

https://actionnetwork.org/letters/ice-makes-me-sick/

Read the Take Action Guide for more actions:

https://docs.google.com/document/d/1m2ildcczbynGRYAhNldmfuTLUdxnZB4z8oNhP8YPlg4/edit?tab=t.0#heading=h.cp029e1ob1r8

co-sponsored by Long Covid Justice

#USPol #ICEout #AbolishICE #MEcfs #LongCovid #ChronicIllness #Disability #Resist

ICE Makes Me Sick. Fund Healthcare, Not Violence. MakesMeSick.org
ahimsa
@ahimsa_pdx@disabled.social

This is your periodic reminder that ambulatory wheelchair users exist. Many folks think wheelchairs are only for those who can't walk at all, or folks who can only take a couple steps.

Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.

#Disability #Wheelchairs #DynamicDisability #ChronicIllness #MEcfs

Purple t-shirt with the message "ambulatory wheelchair users exist." Under the text there's an illustration, from left to right, of a stick figure getting up from a wheelchair, then an arrow, then the stick figure walking.
ahimsa
@ahimsa_pdx@disabled.social

My "to do" list for today 😁😁

A page from one of the Frog and Toad books. There's a drawing of Toad sitting up in bed and looking at a piece of paper in his hand. Under the drawing it says: "I have done that," said Toad, and he crossed out 'wake up.'
ahimsa
@ahimsa_pdx@disabled.social

From #MEAction -

"ICE Makes Me Sick: Fund Healthcare, Not Violence"

https://www.meaction.net/post/ice-makes-me-sick-fund-healthcare-not-violence

"No more money to ICE. Restore funding for healthcare and independent living support for disabled people."

You can help!

Email your Congress rep using this tool:

https://actionnetwork.org/letters/ice-makes-me-sick/

Read the Take Action Guide for more actions:

https://docs.google.com/document/d/1m2ildcczbynGRYAhNldmfuTLUdxnZB4z8oNhP8YPlg4/edit?tab=t.0#heading=h.cp029e1ob1r8

co-sponsored by Long Covid Justice

#USPol #ICEout #AbolishICE #MEcfs #LongCovid #ChronicIllness #Disability #Resist

ICE Makes Me Sick. Fund Healthcare, Not Violence. MakesMeSick.org
ahimsa
@ahimsa_pdx@disabled.social

"Multiple Abnormal Responses to Exertion Seen in ME/CFS"

https://www.medscape.com/viewarticle/multiple-abnormal-responses-exertion-seen-me-cfs-2026a10000q1

"Fundamentally, the ME/CFS patient’s response to exercise is very different and very impaired…
These are objective changes in the bodies of these patients that correspond with what the patients are saying"

@mecfs@fedigroups.social

#MEcfs #PwME #PEM #Research

Study Series Shows a ‘Profound, Disrupted Response to Exercise’ This paper is the latest in a series of studies from the Cornell research team of the same participant group. One published in 2023 showed delayed recovery from exercise, while another in 2024 showed impaired cardiopulmonary and metabolic responses in 2-day CPET testing. “The whole body of work on this very well-characterized cohort is showing that there is this very profound, disrupted response to exercise. And again and again, we find the largest changes are from immediately post-exercise to 24 hours later, which we call the ‘recovery period’ from exercise because the healthy controls have recovered, but patients have not. And it does correlate with the symptom severity data, where patients are reporting that they have increases in post-exertional malaise,” Glass said.
ahimsa
@ahimsa_pdx@disabled.social

"Why I Can’t Just Meet You for Dinner"

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

A description of PEM (post-exertional malaise) along with some tips for how to explain it to loved ones.

"Post-exertional malaise (PEM for those of us who live with it intimately) is not tiredness. It’s not even exhaustion.

It’s a systemic crash that occurs after physical, cognitive, or emotional exertion that exceeds your body’s brutally reduced energy envelope."

@mecfs@fedigroups.social @longcovid@fedigroups.social

#MEcfs #LongCovid #PEM #ChronicIllness

Here’s what most people don’t understand: PEM isn’t just a temporary setback. Frequent PEM crashes have compounding effects. Every time you push through PEM (every time you ignore the warning signs and keep going because you have to work, or because someone is visiting, or because you’re trying to maintain some semblance of a normal life) you’re not just paying the price in the moment. You’re potentially worsening your baseline function permanently.
ahimsa
@ahimsa_pdx@disabled.social

My "to do" list for today 😁😁

A page from one of the Frog and Toad books. There's a drawing of Toad sitting up in bed and looking at a piece of paper in his hand. Under the drawing it says: "I have done that," said Toad, and he crossed out 'wake up.'
ahimsa
@ahimsa_pdx@disabled.social

"A heroic pit bull helps rescue his owners with the aid of a Pittsburgh man willing to follow"

https://www.cnn.com/2025/08/09/us/pittsburgh-dog-owners-rescue

Not sure what hashtags to use - is #DogsOfMastodon only used for dogs that live with you? 🤔🤔

#Dogs #Hero #GoodNews

ahimsa
@ahimsa_pdx@disabled.social

"Lack of ME research because of ‘medical misogyny’, says top scientist"

https://www.thetimes.com/uk/scotland/article/chris-ponting-misogyny-me-research-c09hp0hfg

"Professor Chris Ponting, who led a groundbreaking study into the disease (DecodeME) says it is 'highly stigmatised and incredibly female-biased'"

"…clinicians and scientists should be asking why his work was not done 15 years ago"

#MEcfs #PwME #GWAS #Genetics #DecodeME

“I am not a clinician. But I have heard many people talking about medical misogyny in ME and endometriosis and other diseases. We need to challenge ourselves as to why it is that this type of study — genetic study — was not done 15 years ago when other diseases benefited from this type of approach." Asked why, he replied: “I think because of stigma and because there is medical misogyny and a strong bias towards funding research that is of greater benefit to males than females.”
ahimsa
@ahimsa_pdx@disabled.social

📣📣 Long awaited announcement about initial DNA results from the DecodeME project is scheduled for Wed, Aug. 6th!

Looking forward to knowing what the results are. Even if results don't end up showing much this is still an important milestone - the world’s largest ME/CFS study!

https://disabled.social/@tomkindlon/114971303918401170

@mecfs@a.gup.pe

#MEcfs #PwME #Research #DecodeME

ahimsa
@ahimsa_pdx@disabled.social

This clip is from the Masters Agility Championship (dog show) which I recorded back in February. I finally got around to posting this.

One dog, Gable, decided he needed to stop and check out the scenery right in the middle of the race. 😁😁

Enjoy!

#Dogs #DogsOfMastodon #DogsOfFediverse #Funny #Cute #JoyScrolling

ahimsa
@ahimsa_pdx@disabled.social

This is your periodic reminder that ambulatory wheelchair users exist. Many folks think wheelchairs are only for those who can't walk at all, or folks who can only take a couple steps.

Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.

#Disability #Wheelchairs #DynamicDisability #ChronicIllness #MEcfs

Purple t-shirt with the message "ambulatory wheelchair users exist." Under the text there's an illustration, from left to right, of a stick figure getting up from a wheelchair, then an arrow, then the stick figure walking.