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ahimsa-pdx.disabled.social.ap.brid.gy
ahimsa
@ahimsa-pdx.disabled.social.ap.brid.gy
83 followers 6 following 1K posts
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 […]

🌉 bridged from ⁂ https://disabled.social/@ahimsa_pdx, follow @ap.brid.gy to interact
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ahimsa-pdx.disabled.social.ap.brid.gy
This image could be intepreted in many ways. But right now, for me, it means that I can do everything "right" (pacing, etc) and yet still crash!

I didn't fail. This endless struggle with PEM is just part of living with ME/CFS.

art by @thelatestkate

#mecfs #chronicillness #kindness
Drawing of an owl (barn owl?) with this message: "Your struggle is not an indication of failure."
December 8, 2025 at 6:54 PM
ahimsa-pdx.disabled.social.ap.brid.gy
[Answer: Jojoba]

Question: How does Santa Claus talk to sheep?

#joke #silly
The late Johnny Carson doing his Carnac The Magnificent act. He is wearing a large jeweled turban with a white feather. He's holding an envelope to his forehead (the gimmick was that Carnac could read the message inside).
December 7, 2025 at 10:28 PM
ahimsa-pdx.disabled.social.ap.brid.gy
"The future of Medicaid is 'really scary' for people with Long COVID"

https://thesicktimes.org/2025/12/02/the-future-of-medicaid-is-really-scary-for-people-with-long-covid/

Key points are listed in the attached image (with alt text)

@longcovid @mecfs […]

[Original post on disabled.social]
- Cuts to Medicaid and the Affordable Care Act in President Trump’s spending bill total almost $1 trillion and will lead to some 10 million people losing their insurance in the next decade. - The bill will require Medicaid recipients to work in order to maintain their insurance, despite such measures being ineffective and discriminatory. - Though there are technically exemptions to the work requirements for people with disabilities, patients and advocates worry they will not be applied correctly. - The bill also increases bureaucratic red tape and confines eligibility, which will result in many losing insurance and access to care. For those with energy-limiting diseases like Long COVID, it will be even harder — and more harmful — to keep up. - Medicaid is the bare minimum for people with Long COVID and other complex conditions. But instead of improving it, amid skyrocketing disability claims, the Trump administration is making it worse.
December 4, 2025 at 10:45 PM
ahimsa-pdx.disabled.social.ap.brid.gy
"National survey finds virtual health ‘essential’ for Long COVID support: SFU report"

https://www.sfu.ca/fhs/news-events/news/2025/national-survey-finds-virtual-care-essential-for-long-covid-care.html

“These preliminary results suggest that virtual care is […]

[Original post on disabled.social]
“Many of the 621 survey respondents from across the country shared how lifesaving and essential these virtual services are in providing accessibility to care that reduces risk of infections, travel time, and PEM”, shared FHS Research Fellow Kayli Jamieson, who also has Long COVID herself. PEM, or Post-Exertional Malaise, is common in many people with Long COVID, meaning that physical, mental, or sensory activity triggers can cause a flare-up in symptoms lasting from hours to weeks. It is one of many factors that contributes to the chronic and frequently disabling nature of Long COVID.
December 3, 2025 at 6:35 PM
ahimsa-pdx.disabled.social.ap.brid.gy
From #meaction:

"Today is Giving Tuesday! All Donations tripled!

We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.

Donate now and be a lantern for all of us!" […]

[Original post on disabled.social]
A photo of hand loading a small lantern with out of focus city lights in the background. Text surrounding this image: "Giving Tuesday. Donate Now. Be a lantern for all of us! All donations 3x matched." Includes the #MEAction logo.
December 2, 2025 at 11:34 PM
ahimsa-pdx.disabled.social.ap.brid.gy
"After months in a car, Roscoe the pig begins new life at Oregon farm sanctuary"

gift link = […]

[Original post on disabled.social]
Close up of the face of Roscoe the pig, sleeping on a pile of hay or straw at the Lighthouse Farm Sanctuary. There's a thin blanket on his back. Photo courtesy of Gwen Jakubisin.
December 2, 2025 at 12:22 AM
ahimsa-pdx.disabled.social.ap.brid.gy
Adding this great quote from Jaime Seltzer:

“People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous,” Seltzer said.

The rationale behind these studies, Seltzer contests, is “extraordinarily naive” as “it […]

[Original post on disabled.social]
People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous. -- Jaime Seltzer, #MEAction
November 25, 2025 at 3:52 AM
ahimsa-pdx.disabled.social.ap.brid.gy
The Science for ME forum has posted the latest News in Brief (Nov. 17 - 23), a weekly summary of ME/CFS and Long Covid news plus upcoming events:

https://www.s4me.info/threads/news-in-brief-november-2025.47075/#post-656349

@mecfs
@longcovid

#mecfs #LongCovid #chronicillness #science4me
Science for ME Where Science and Community Meet www.s4me.info
November 25, 2025 at 12:30 AM
ahimsa-pdx.disabled.social.ap.brid.gy
"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 […]

[Original post on disabled.social]
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.
November 24, 2025 at 12:14 AM
ahimsa-pdx.disabled.social.ap.brid.gy
"Wilsonville math teacher rides to all 95 MAX stations for world record"

https://www.opb.org/article/2025/11/22/wilsonville-math-teacher-max-speedrun-public-transit-marty-valentine/

"Marty Valentine, a Wilsonville middle school math teacher, became the […]

[Original post on disabled.social]
A transit speedrun is the perfect side quest for nerdy transit enthusiasts: people spend months tweaking computer algorithms or spreadsheets to calculate the fastest route without repeating too many stops. In computer science, this is called the “traveling salesmen problem” and is an algorithm taught in college curricula. It’s part urban adventure, part logistical puzzle. Valentine completed his MAX marathon earlier this summer — 95 stations, five lines, and just over six hours on trains and buses. Speedrunning is popular enough that an online community keeps track of “official” runs. They set the rules: take a picture of every station, keep a GPS log, and document any important transitions between trains. “At every stop I had to get out and take a picture of the sign at the station,” Valentine said. “People were like, ‘What is this guy doing? What is going on?’”
November 22, 2025 at 11:57 PM
ahimsa-pdx.disabled.social.ap.brid.gy
From The Sick Times:

"Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise"

https://thesicktimes.org/2025/11/21/less-than-20-of-long-covid-trials-involving-exercise-even-mention-post-exertional-malaise/

"Testing […]

[Original post on disabled.social]
Key points you should know: - A swath of low-quality exercise studies are used as justification that the intervention works for Long COVID; however, the studies included in those analyses neglected to account for PEM. - Less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to their trial registration, while a handful excluded participants who experience it. - Some experts question the utility of these trials for Long COVID. However, the principal investigators running RECOVER-ENERGIZE, which is testing cardiopulmonary rehabilitation, declined to explain the rationale behind their study. - Experts say it is important to use multiple measures, including surveys and a two-day cardiopulmonary exercise test, to track PEM. Researchers say it’s important to track PEM for up to a month after the trial ends. - Despite the disproportionate focus on it as an intervention, exercise does not mechanistically connect the main pathophysiological findings or suspected mechanisms that leading Long COVID researchers are pursuing.
November 22, 2025 at 5:48 PM
ahimsa-pdx.disabled.social.ap.brid.gy
Quotes:

"Given that the trial was unblinded, responses to any self-reported or subjective measures would be infused with an unknown amount of bias …"

"In other words, don’t pay attention to any of the rosy assertions arising from this trial–and the slanted […]

[Original post on disabled.social]
Given that the trial was unblinded, responses to any self-reported or subjective measures would be infused with an unknown amount of bias. This tendency would likely be reflected in modestly positive responses from those who received the intervention–even in the absence of actual benefits. Beyond this key factor, the investigators failed to include any attempt to adjust for multiple outcomes. This is a standard strategy to compensate for the fact that, given a great many different statistical tests, some are likely to come up as positive by chance alone. Considering the amount of testing conducted in this study, adjusting the results for multiple outcomes might have meant that some positive findings were no longer statistically significant. (Whether positive findings for these secondary outcomes were clinically significant is another question.) In other words, don’t pay attention to any of the rosy assertions arising from this trial–and the slanted way in which the results have been presented.
November 21, 2025 at 10:21 PM
ahimsa-pdx.disabled.social.ap.brid.gy
Quote:

"It is important to note that no one reasonably objects to exercise interventions for Long COVID patients unless they suffer from post-exertional malaise (PEM), in which case these therapeutic approaches are contra-indicated … the participants in this […]

[Original post on disabled.social]
It is important to note that no one reasonably objects to exercise interventions for Long COVID patients unless they suffer from post-exertional malaise (PEM), in which case these therapeutic approaches are contra-indicated. It is widely understood that exercise is generally good for people! Those recovering from acute illness are likely to gain muscle strength from resistance exercise—unless this approach is contra-indicated because of PEM. In any event, the participants in this trial do not seem to have been assessed at baseline for PEM, although data are provided for its presence at at the end point. It would have been interesting to see if there were any changes from start to finish.
November 21, 2025 at 10:17 PM
ahimsa-pdx.disabled.social.ap.brid.gy
From David Tuller:

"Another Exercise Trial with Clinically Insignificant Findings"

https://virology.ws/2025/11/21/trial-by-error-another-exercise-trial-with-clinically-insignificant-findings/

"A core problem here is one we have seen before:

Statistically […]

[Original post on disabled.social]
Not surprisingly, the study received positive media attention. An article disseminated on Yahoo, headlined “Long-COVID Patients Should Focus on This Training,” included the following quote from the study’s lead investigator and primary author: “Our study shows the benefits of strength training for recovery after COVID-19 and suggests that people suffering from persistent symptoms after a COVID-19 infection could benefit from this type of training.” Not so fast! A core problem here is one we have seen before: Statistically significant results are being touted as evidence of benefits even when they fall below the threshold deemed to be clinically significant.
November 21, 2025 at 10:07 PM
ahimsa-pdx.disabled.social.ap.brid.gy
From #meaction

"Our workshop 'Chronic Illness Caregiving for Youth, Teen, and Adult Children' with Denise Lopez-Majano is this Saturday, November 22, 3 pm ET!"

"‪All caregivers welcome! New to caregiving or a veteran at it, there is something for you! " […]

[Original post on disabled.social]
A graphic advertising a virtual workshop with a photo of the facilitator. Text: "New virtual workshop. Chronic Illness Caregiving for Youth, Teen and Adult Children with Denise Lopez-Majano. Join us Saturday, November 22, 3 PM ET. Get your tickets now!"
November 20, 2025 at 8:48 PM
ahimsa-pdx.disabled.social.ap.brid.gy
"Hickenlooper, Crapo Reintroduce Bill to Protect Night Sky, Aid Research"

https://www.hickenlooper.senate.gov/press_releases/hickenlooper-crapo-reintroduce-bill-to-protect-night-sky-aid-research/

"Today, U.S. Senators John Hickenlooper and Mike Crapo […]

[Original post on disabled.social]
“There’s bipartisan agreement that we need a strong space economy and cutting-edge scientific research to unlock the mysteries of our universe,” said Hickenlooper. “The Dark and Quiet Skies Act helps us do both. This is a no-brainer solution, and we’re pushing to get it done.” “The vastness of Idaho’s wilderness allows for truly magnificent wonders in the night sky,” said Crapo. “The advancement of space technology has made these majestic spaces fewer, and collaborative approaches to mitigate interference is vitally needed.”
November 20, 2025 at 8:25 PM
ahimsa-pdx.disabled.social.ap.brid.gy
From #meaction -

"Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation?

We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver […]

[Original post on disabled.social]
Thank You Caregivers! Help yourself to these thank you messages to the caregivers in your live. We included a couple that also work for someone missing a caregiver in their life.
November 18, 2025 at 8:15 PM
ahimsa-pdx.disabled.social.ap.brid.gy
"One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis"

➡️ Cards can be sent to UK addresses only

https://theredtreeandme.substack.com/p/one-red-leaf-at-a-time-greetings

"Since so many of you have asked […]

[Original post on disabled.social]
An assortment of greeting cards displayed on a dark red background. There are many different designs but they all feature at least one red leaf.
November 18, 2025 at 8:11 PM
ahimsa-pdx.disabled.social.ap.brid.gy
The Science for ME forum has posted the latest News in Brief (Nov. 10 - 16), a weekly summary of ME/CFS and Long Covid news plus upcoming events:

https://www.s4me.info/threads/news-in-brief-november-2025.47075/#post-654993

@mecfs
@longcovid

#mecfs #LongCovid #chronicillness #science4me
Science for ME Where Science and Community Meet www.s4me.info
November 18, 2025 at 5:54 PM
ahimsa-pdx.disabled.social.ap.brid.gy
"Read all about it: What to know ahead of the 2025 Portland Book Festival"

https://theconversation.com/can-a-new-blood-test-really-detect-me-cfs-an-expert-unpacks-new-research-267099

"Hosted by nonprofit Literary Arts, the festival covers all things […]

[Original post on disabled.social]
The festival will run from 10 a.m. to 6 p.m. with events taking place at 10 stages across six venues in downtown Portland’s South Park Blocks. Adult admission is $18 in advance and $25 on the day of, plus fees. Full-priced admission includes a $5 book voucher redeemable at the book fair on the day of the festival. Those aged 17 and younger can attend for free.
November 6, 2025 at 5:18 PM
ahimsa-pdx.disabled.social.ap.brid.gy
"Judge orders White House to use American Sign Language interpreters at briefings"

https://www.npr.org/2025/11/05/nx-s1-5599118/white-house-asl-deaf-american-sign-language-judge-order

"A federal judge is ordering the White House to immediately begin […]

[Original post on disabled.social]
"White House press briefings engage the American people on important issues affecting their daily lives — in recent months, war, the economy, and healthcare, and in recent years, a global pandemic," U.S. District Judge Amir Ali wrote in issuing a preliminary injunction on Tuesday. "The exclusion of deaf Americans from that programming, in addition to likely violating the Rehabilitation Act, is clear and present harm that the court cannot meaningfully remedy after the fact." The White House stopped using live ASL interpreters at briefings and other public events when President Trump began his second term in January.
November 6, 2025 at 12:55 AM
ahimsa-pdx.disabled.social.ap.brid.gy
"Judge blocks Trump’s citizenship proof requirement for voter registration"

https://www.oregonlive.com/nation/2025/10/judge-blocks-trumps-citizenship-proof-requirement-for-voter-registration.html?gift=b8f1c0a0-e0e3-4ba8-ae66-d9fd9581c214

"The ruling grants […]

[Original post on disabled.social]
U.S. District Judge Colleen Kollar-Kotelly in Washington, D.C., sided with Democratic and civil rights groups that sued the Trump administration over his executive order to overhaul U.S. elections. She ruled that the proof-of-citizenship directive is an unconstitutional violation of the separation of powers, dealing a blow to the administration and its allies who have argued that such a mandate is necessary to restore public confidence that only Americans are voting in U.S. elections.
October 31, 2025 at 11:30 PM
ahimsa-pdx.disabled.social.ap.brid.gy
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.'
October 22, 2025 at 4:51 PM
ahimsa-pdx.disabled.social.ap.brid.gy
From my calendar:

"Your body is doing it's best and deserves kindness today" ❤️

I needed this today -- dealing with so many symptoms from ME/CFS and orthostatic intolerance 🛏️

art by @thelatestkate

#mecfs #LongCovid #pwme #chronicillness #kindness
A cute dragon with horns (and it looks fluffy? like it has fur?) is lying on its back in a grassy meadow with its front paws folded. The text says, "Your body is doing its best and deserves kindness today."
October 17, 2025 at 7:17 PM
ahimsa-pdx.disabled.social.ap.brid.gy
Here's a list of some common warning signals of orthostatic intolerance.

#mecfs #LongCovid #orthostaticintolerance #pots #Dysautonomia #MedEd
Common Warning Signs of OI So, what does OI feel like? The symptoms can vary, but some common “warning signals” include: - Dizziness or Lightheadedness: That faint, unsteady feeling when you stand up or stay upright for too long. - Palpitations or Increased Heart Rate: You may feel your heart racing or feel like it is beating very hard. - Fatigue & Heaviness: An overwhelming sense of exhaustion or heaviness in your limbs that often eases when you lie down. - Nausea: A queasy feeling, sometimes accompanied by an upset stomach. - Headache: Head pain that gets worse the longer you’re upright. - Trembling or Shakiness: Feelings of internal vibrations or shaking. - Visual Disturbances: Blurry or tunnel vision. - Brain Fog: Difficulty concentrating, finding words, paying attention or remembering information. - Sweating: Unexpected, sudden sweating without any physical exertion. - Fainting: in extreme cases, a brief loss of consciousness. - Muscle Twitching: Involuntary muscle twitches or contractions (fasciculations). - Anxiety: Feeling like you are stuck in “flight or fight” or like you are having a panic attack. I have had many patients go to the emergency department only to be told they were “just” anxious.
October 15, 2025 at 1:47 AM