ahimsa_pdx, 1 day ago to random

I had to go to urgent care earlier today (nothing serious, needed antibiotics for infection).

I'm please to report that the nurse, the doctor, and all the patients I saw (about 8-9?) were wearing masks of some kind. I was pleasantly surprised! 😷😁

#COVID #CovidIsNotOver #CovidIsAirborne #WearAMask #MaskUp

ahimsa_pdx, 2 days ago to mecfs

From Jaime Seltzer:

"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.

The survey will be open from 5/24/2024 to 6/23/2024."

Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.

https://surveys.mayoclinic.org/jfe/form/SV_2auWxMckjo7s04u

1/n

@longcovid @mecfs

#LongCovid #MEcfs #PwME #PwLC #PEM #Research #Survey

ahimsa_pdx, 3 days ago to mecfs

"Long COVID advocates hammer Biden over ‘minimal funding’ in budget request"

https://thehill.com/policy/healthcare/4682533-long-covid-advocates-hammer-biden-over-minimal-funding-in-budget-request/

"According to a Centers for Disease Control (CDC) report from September of last year, around 18 million adults reported dealing with long COVID as of 2022."

@longcovid

#USPol #COVID #LongCovid #PostCovid #MEcfs #POTS #ChronicIllness

ahimsa_pdx, 3 days ago to disability

From The Sick Times:

"How to make spaces more accessible during the continuing pandemic"

https://thesicktimes.org/2024/05/23/how-to-make-spaces-more-accessible-during-the-continuing-pandemic/

"A blueprint for radical inclusion and living a full, safer life within the context of Covid-19 exists.

Many mutual aid groups and initiatives advocating for clean air and continued Covid-19 safety are emerging all over the world using technology and layers of protection to help mitigate the spread of viruses."

#CovidIsNotOver #Covid #CovidCautious #LongCovid #Disability

ahimsa_pdx, 4 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, 5 days ago to books

"Ten new books about Long Covid, chronic illness, and disability"

https://thesicktimes.org/2024/05/21/ten-new-books-about-long-covid-chronic-illness-and-disability/

"Here are ten recently published books on Long Covid, Myalgic Encephalomyelitis (ME), chronic illness, and disability."

#Books #LongCovid #MEcfs #Disability #ChronicIllness #NEISvoid

ahimsa_pdx, 5 days ago to oregon

"Multnomah County Sheriff’s Office swears in its first ‘comfort dog’ "

https://www.oregonlive.com/news/2024/05/multnomah-county-sheriffs-office-swears-in-its-first-comfort-dog.html

Burton is an 85-pound, 3-year-old long-haired German Shepherd. Across his furry black and brown back, he wears a harness that reads, “Please pet,” and at his ceremony, many in attendance did just that.

#Oregon #Dogs #WorkingDogs

ahimsa_pdx, 6 days ago to mecfs

Preprint:

"Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life"

Link to study:

https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1.full-text

There's an interesting discussion of this study on the Science for ME forum:

https://www.s4me.info/threads/epidemiology-of-myalgic-encephalomyelitis-among-individuals-with-self-reported-cfs-in-bc-canada-and-their-health-related-quality-of-life-2024-nacul.38579/

@mecfs

#MEcfs #CFS #PwME #Research #Epidemiology

ahimsa_pdx, 6 days ago to mecfs

From #MEAction

"#TeachMETreatME: Celebrating An Impactful Campaign"

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

"We are THRILLED to share the rolling successes of our 'Teach ME Treat ME' campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months!"

Article has lots more details along with reports of other Millions Missing events! 😁

1/2

@mecfs

#MEcfs #PwME #LongCovid #PostCovid #MedEd #MedMastodon #MillionsMissing

ahimsa_pdx, 6 days ago to oregon

🚨 Reminder:

Tomorrow is election day for Oregonians. Ballots must be taken to a drop box or postmarked by 8 PM Tuesday, May 21.

All registered voters should have received voters' pamphlets and ballots automatically (I love our vote by mail system ❤️) but here's your reminder in case you stashed them somewhere and forgot.

Local elections can have a big impact!

I spent the morning doing my research and voting at home 😁

#USPol #Oregon #Elections #Voting #VoteByMail #VoteAtHome

ahimsa_pdx, 11 days ago to mecfs

From David Tuller:

"Anil van der Zee’s New Video on Living with Severe ME"

https://virology.ws/2024/05/14/trial-by-error-anil-van-der-zees-new-video-on-living-with-severe-me/

"Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severe patient."

@mecfs

#MECFS #SevereME #MyalgicEncephalomyelitis #PwME

ahimsa_pdx, 12 days ago (edited 12 days ago) to Dogs

"Westminster dog show has its first mixed-breed agility winner, and her name is Nimble" 😍

Gift link
https://wapo.st/4bvhb4U

"A mixed-breed dog has won the Westminster Kennel Club dog show’s agility prize for the first time…

Just about a foot (30.5 cm) tall, Nimble powered through an obstacle course of jumps, tunnels, ramps and other features like a furry, black-and-white, well-targeted torpedo to cheers from the crowd in the agility finals."

#Dogs #DogShow #Westminster #Agility #GiftArticle

ahimsa_pdx, 14 days ago to mecfs

How ME/CFS shrinks your world, bit by bit

art by Kornelia Paulsen

@mecfs

#MEcfs #PwME #MyalgicEncephalomyelitis #MillionsMissing #WorldMEDay #MEAwarenessDay

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, 14 days ago to mecfs

Personal story from @ehashman for International ME/CFS Awareness Day:

https://hashman.ca/me-cfs/

Quote:

"One of my acquaintances cried when they last saw me in person. But frankly, I love my wheelchair.

I am not "wheelchair-bound" — I am bed-bound, and the wheelchair gets me out of bed. My chair hasn't taken anything from me."

Also included: a list of ME/CFS advocacy groups and what you can do to help ❤️

#MEcfs #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis #Disability #Wheelchair

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

ahimsa_pdx, 16 days ago to mecfs

May 3rd presentation by Todd Davenport (about 1 1/2 hours) on MECFS & Long Covid:

"Post-Exertional Neuroimmune Exhaustion as a Bioenergetic Condition"

https://www.youtube.com/watch?v=vuoVAP1CC1Y&t=720s

(link skips part of intro)

I've not been able to watch this myself yet but wanted to pass it on.

@mecfs
@longcovid

#MECFS #LongCovid #TeachMETreatME #MedEd

ahimsa_pdx, 16 days ago to mecfs

I've joined the "Teach ME, Treat ME" campaign from #MEAction

We're asking for ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) to be taught in medical schools and via continuing education (CME)

⭐️ And you can help! ⭐️

Please share this CME with your healthcare providers:

https://millionsmissing.meaction.net/treatme/

Need help crafting an email? Here's a template:

https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit

Thanks ❤️

@mecfs

#MEcfs #PwME #MedEd #LongCovid #TeachMETreatME #MillionsMissing

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, 17 days ago to mecfs

This amazing embroidered piece (by @lia_pas) is being showcased by Opera Mariposa for this year's "Benefit & Awareness Month"

From their website:

"Until June 1, 2024, you can enter to win art postcards and a book featuring Lia’s exquisite creations – all in support of the ME | FM Society of BC!"

(ME = Myalgic Encephalomyelitis, FM = Fibromyalgia)

https://operamariposa.com/art-showcase/lia-pas/she-breathed/

@mecfs

#MEcfs #PwME #Fibromyalgia #SciArt #MastodonArt #Embroidery

ahimsa_pdx, 18 days ago to mecfs

Only a few days left until May 12, World ME Day!

My advocacy actions may be small, but I'm trying to help spread the word! 😊

If you want to join in the MEAction group has a list of suggestions in this "Show Up From Home" toolkit (Google doc):

https://docs.google.com/document/d/163DeV93SRYNm7Aq2zC_uoaU7NIJmmydaJIi4BQDQDew/edit#heading=h.vyt35j7pvgd3

1/n

@mecfs

#MEcfs #LongCovid #MyalgicEncephalomyelitis #MillionsMissing #MEAwareness #WorldMEDay #TeachMETreatME

ahimsa_pdx, 19 days ago to mecfs

From #MEAction:

"We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME)."

https://www.meaction.net/2024/05/07/millionsmissing-week-is-here-teachmetreatme-in-action/

See link for upcoming events.

1/3

@mecfs
@longcovid

#MEcfs #LongCovid #TeachMETreatME #MedEd #MedMastodon

ahimsa_pdx, 22 days ago (edited 20 days ago) to oregon

Edit - I fixed the date! Sorry for the error!

Reminder for Oregonians: Primary is Tuesday, May 21!

Registered voters should have already gotten a voter's pamphlet and ballot, but in case it got lost in the mail here's a reminder 😁

Here's the OPB ballot guide for 2024:

https://www.opb.org/election-2024/

#USPol #Oregon #Elections #Voting #VoteByMail #VoteAtHome

ahimsa_pdx, 23 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