ahimsa_pdx, 7 months ago to random

Day 1 of #10films

I've decided join in this hashtag. Thanks to @val for tagging me ❤️

The idea is "share one image (no posters, no titles, no explanation) from 10 films that impacted me. Every day a new person will be added: 10 days, 10 movie images, 10 friends."

I'm going to try to do 10 films, but probably won't post something every day.

These aren't favorite films, just films that somehow impacted me.

This image is from the first movie I saw with my husband when we dating.

ahimsa_pdx, 3 months ago (edited 3 months ago) to bluesky

Recently I started to sign up for Bluesky - mostly to read, not post. But sign up required a phone number. That was a dealbreaker for me.

Then someone else said it was a good way to recover locked accounts. They didn't like that Mastodon does not ask for a phone number.

So, what do you think? Is requiring a phone number for new accounts a good thing?

This question is only about social media, not bank accounts, etc.

Please boost for more responses! :boost:

#Bluesky #Mastodon #SocialMedia

ahimsa_pdx, 3 months ago to mecfs

"Long COVID can destroy your ability to exercise. Now we know why"

"As a new study shows, the answer lies in some long COVID sufferers’ muscle damage and their bodies’ ability to make energy"

https://archive.is/rd7Pm#selection-4855.0-4855.65

No paywall - archived version of National Geographic article

@mecfs @longcovid

#LongCovid #MEcfs #PwME #Exercise #PEM #Research

ahimsa_pdx, 2 months ago to mecfs

"Health outcomes for Long COVID are comparable with ME/CFS"

https://news.griffith.edu.au/2024/03/15/health-outcomes-for-long-covid-are-comparable-with-me-cfs/

"People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) …

Quality of life and disability scores were significantly poorer for both Long COVID and ME/CFS when compared with healthy people"

#LongCovid #MEcfs #Research #MedMastodon #MedEd #LongCovidAwarenessDay

@mecfs @longcovid

ahimsa_pdx, 1 year ago to random

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

ahimsa_pdx, 5 months ago to mecfs

"Introducing: David Putrino’s Research Study"

Anyone who is using Visible, an activity tracking platform that's designed for illness, not fitness, can opt-in to share their data with this research study.

Read more here:

https://www.makevisible.com/blog/introducing-david-putrinos-research-study

I don't know anything about Visible, or this research study, so please send any questions to them!

@longcovid
@mecfs

#LongCovid #PostCovid #MEcfs #MyalgicEncephalomyelitis #Research #Visible #ActivityTracker

ahimsa_pdx, 4 months ago to mecfs

I've got a new doctor (old one retired)

At my December appt. I talked about my ME/CFS symptoms & gave him a copy "Diagnosis and Management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" (link below)

At some point my doc said, "You must have a very severe case!" My response was no, severe cases are often bedbound, tube fed, etc

I can't work but I'm moderate. Doctors don't realize how severe ME/CFS can be

https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

#MEcfs #CFS #PwME #SevereME #MyalgicEncephalomyelitis

ahimsa_pdx, 1 month ago to twitter

I'm surprised to see so many folks still post links to X/twitter threads. (not common here but on other platforms/forums)

They obviously don't care about moral/ethical issues with X, but they also must not realize access to threaded replies is restricted to logged in users!

Many folks deleted their accounts long ago (🙋🏻‍♀️) & Nitter no longer works (right?) so I don't know how to see more than the first post of any X thread.

So why share links to X threads? 🤷🏻‍♀️

#Xitter #Twitter #X #SocialMedia

ahimsa_pdx, 1 year ago (edited 1 year ago) to longcovid

Solve M.E. posted about a clinical trial for a Long Covid treatment run by Hope Biosciences Research Foundation.

"Study Design:
A randomized, double-blinded, single-center, phase 2 efficacy, and safety study of allogeneic HB-adMSCs for the treatment of patients with Chronic Post-COVID-19 Syndrome"

Link: https://www.hopebio.org/Study?Name=HBPCOVID02

Attached image (with #AltText) includes contact info.

#COVID #LongCovid #PostCovid #Research #ClinicalTrial #MedMastodon

@longcovid

ahimsa_pdx, 1 year ago to mecfs

Washington Post article about part of NIH’s RECOVER initiative which includes studying exercise as potential treatment for long covid.

I've attached 2 screenshots, but this quote is a good summary:

“ 'Worst-case scenario, this would harm a lot of people,' said #MEAction’s U.S. advocacy director, Ben HsuBorger."

With all we know about PEM why do research on exercise as treatment? 😖

gift link: https://wapo.st/43j6duZ
#LongCovid #MEcfs #NIH #Research #RecoverInitiative

@mecfs
@longcovid

ME/CFS’s complicated research history. JD Davids, the co-founder and co-director of Long COVID Justice, said he fears that NIH’s exercise trials for long covid continue the scientific community’s long history of mishandling ME/CFS research. Davids, who has long covid and ME/CFS, said many patients like himself have felt shut out of conversations or ignored by researchers. “I appreciate the involvement of people with ME who understand the stakes here, who are doing everything possible to not let that history repeat itself,” he said. Historically, some patients say, doctors have trivialized ME/CFS or denied that it is a real condition and dismissed patients as having anxiety.

ahimsa_pdx, 1 month ago to Birds

"A New Birding Club Wants to Help COVID Long-Haulers Safely Enjoy Nature Together"

https://www.audubon.org/magazine/new-birding-club-wants-help-covid-long-haulers-safely-enjoy-nature-together

"Ed Yong, an award-winning science journalist who widely covered the pandemic, recently launched The Spoonbill Club to provide community—and an accessible hobby—for folks with long COVID."

@longcovid

#Birds #Birding #Nature #LongCovid #MEcfs #ChronicIllness #Spoonies

ahimsa_pdx, 24 days ago to mecfs

From #MEAction:

"Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.

... We want to say thank you to the community that has enabled this work"

Congratulations, Jaime! 😁

https://time.com/collection/time100-health/?mc_cid=87c5bb8c63

1/n

@mecfs

#MEcfs #PwME #HealthCare #Time100 #Time100Health

ahimsa_pdx, 2 months ago to longcovid

Email from Patient Led Collaborative:

"On March 15, 2024, Patient-Led Research Collaborative commemorates International Long COVID Awareness Day. On this day, we honor those with and affected by Long COVID globally. We collectively mourn those who lost their lives to Long COVID and COVID-19. Together, we raise awareness, foster community connectedness, and fight for our lives."

Their website: https://patientresearchcovid19.com/

1/n

@longcovid

#LongCovid #CovidIsNotOver #LongCovidAwarenessDay

ahimsa_pdx, 3 months ago to disability

I'm not calling out anyone specifically, and I know this usage is very common … but can we stop disparaging crutches as bad things?

Why is "it's just a crutch!" a valid criticism?

Crutches are helpful!

Mobility aids are good, actually!

(Bracing for the inevitable ableist responses to this comment in 3 2 1 … )

#Disability #Ableism #JustACrutch

ahimsa_pdx, 4 months ago to mecfs

"Life derailed: Long COVID still gnaws at Victoria long after pandemic fades"

(at least headline says "fades" vs "over")

"Long, slow path of a constrained self facing thousands dealing with lingering effects of the virus"

https://www.vicnews.com/local-news/life-derailed-long-covid-still-gnaws-at-victoria-long-after-pandemic-fades-7299085

@mecfs
@longcovid

#COVID #LongCovid #PostCovid #MEcfs #Disability #ChronicIllness #PEM

ahimsa_pdx, 4 months ago to pnw

"Orca baby alert! Newborn spotted in Puget Sound"

https://www.oregonlive.com/pacific-northwest-news/2023/12/orca-baby-alert-newborn-spotted-in-puget-sound.html

#PNW #Whale #Ocean #Wildlife

ahimsa_pdx, 10 months ago to NoStupidQuestions

Is there a way to copy the alt text from an image to the clipboard?

There are probably lots of reasons for doing this but a common one for me is seeing a photo with alt text in a language other than English. I'd like to copy the text so I can use a tool to translate it.

I'm using the web interface for mastodon right now but if there's an app that has this feature please let me know.

#MastodonTips #FediTips #Question #Help

ahimsa_pdx, 14 days ago to mecfs

💙 It's May 12th, International ME/CFS Awareness Day 💙

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

(attached photo is from last year)

1/n

@mecfs

#MEcfs #PwME #WorldMEDay #MEAwarenessDay #MEAwareness #MyalgicEncephalomyelitis

ahimsa_pdx, 3 days ago to fediverse

Testing the "Fediverse share button" feature 😁

Fediverse share button | Stefan Bohacek

https://stefanbohacek.com/project/fediverse-sharing-button/

#Fediverse #Mastodon

ahimsa_pdx, 2 months ago to mecfs

Short video (10 minutes) talking about clinical trials for Long Covid. Mentions ME/CFS as another illness that can be triggered by a virus.

https://www.youtube.com/watch?v=nLVnrb3bFC4

This is an excerpt from documentary, "Wales This Week: Clinical Trials: Life In The Waiting Room."

@mecfs @longcovid

#COVID #LongCovid #MEcfs #Wales #ITV

ahimsa_pdx, 2 months ago to mecfs

"Understanding the impact of myalgic encephalomyelitis/chronic fatigue syndrome"

A short thread 🧵

1/n

https://www.openaccessgovernment.org/understanding-impact-myalgic-encephalomyelitis-chronic-fatigue-syndrome/174788/

"We spoke to Dr Charles Shepherd, Hon Medical Adviser at ME Association, member of the NICE guideline committee on ME/CFS and DHSC Delivery Plan on ME/CFS Working Group, about the impact of myalgic encephalomyelitis/chronic fatigue syndrome and why more needs to be done to address gaps in care and research"

@mecfs

#MEcfs #PwME #UK #MEAssociation

ahimsa_pdx, 22 days ago to mecfs

It's May! That means it's ME Awareness month, with World ME Day on May 12th!

I'm going to try to post about ME Awareness events over the next few weeks.

This year #MEAction has a campaign called "Teach ME, Treat ME" which will

"… educate hospital systems and medical schools about ME/CFS by encouraging medical schools to Teach ME, and major hospitals to Treat ME"

Here's the event schedule:

https://meaction.controlshift.app/calendars/millionsmissing-2024

@mecfs
#MEcfs #PwME #MedMastodon #MedEd #MillionsMissing #TeachMETreatME

ahimsa_pdx, 17 days ago to mecfs

This short video (about a minute) from #MEAction asks people with ME/CFS, "How long did it take you go get diagnosed?"

(ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome)

https://www.youtube.com/watch?v=tnzz2QwwaMs

I'm "lucky" because it only took me 5 years to get a diagnosis vs. an average of over 8 years (from the 417 responses they got).

What's your answer? 🤔

1/2

@mecfs

#MEcfs #PwME #TeachMETreatME #MedEd #MedMastodon

ahimsa_pdx, 15 days ago (edited 15 days ago) to random

"Most extreme solar storm in 20 years brings beautiful northern lights"

"The major disturbance of Earth’s magnetosphere caused stunning aurora displays across northern Europe and very low latitudes in the U.S."

https://wapo.st/3yhyUyk

Edit: Oops, I was wrong this is behind paywall!

The link has been changed to a gift link. Click on link above ⬆️ not the preview below.

#Aurora #NorthernLights #Photos #GiftArticle #GiftLink

ahimsa_pdx, 15 days ago to mecfs

As we approach May 12, ME/CFS International Awareness Day, it's important to remember those with severe ME.

Many of them are so sick that they are on social media either very rarely or not at all 😢

This video from Anil van der Zee, The Prison of ME, explains the agony of severe ME:

https://www.youtube.com/watch?v=yLRateIQdzc

About 12 minutes. Subtitles in multiple languages.

#SevereME #MEcfs #PwME #MyalgicEncephalomyelitis #ChronicIllness #MillionsMissing