@ahimsa_pdx@disabled.social
@ahimsa_pdx@disabled.social avatar

ahimsa_pdx

@ahimsa_pdx@disabled.social

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

Please use #AltText on images/GIFs❤️

Yes, I'd love to see a photo of your cat😻

Avatar photo: Old photo of my cat, tabby with white chest & paws. Banner photo: Trees in a park with green leaves.

Just my posts, no boosts = https://justmytoots.com/@ahimsa_pdx?public_only=true

#MEcfs #PwME #Dysautonomia #POTS #LongCovid #Disability #Accessibility

This profile is from a federated server and may be incomplete. Browse more on the original instance.

ahimsa_pdx, to longcovid
@ahimsa_pdx@disabled.social avatar

From Jaime Seltzer:

"’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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

This study is worldwide.

Anyone who meets these three conditions can complete the survey:

  • 18+ yo
  • Have ME/CFS and/or Long COVID
  • Have tried symptom contingent pacing as an activity management strategy

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

2/n

@longcovid @mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

From the survey consent page:

"If you have specific questions about the study, you may reach out to the study contacts via email at pacingnarrative@meaction.net.

If you have any concerns, complaints, or general questions about research or your rights as a participant, please contact the Mayo Institutional Review Board (IRB) to speak to someone independent of the research team at 507-266-4000 or toll free at 866-273-4681."

3/n

@longcovid @mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Source (post on Bluesky):

https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3ktapu6o3bc2e

But there might be a news item about it on the website later?

I'll try to remember to come back to this thread if they post anything.

4/4

@longcovid @mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

" Scotland publishes impact statement"

https://www.meaction.net/2024/05/23/meaction-scotland-publishes-impact-statement/

" Scotland is pleased to publish our impact statement, which covers March 2022 to May 23. It reports on our work to campaign for effective support, create stronger advocates and raise awareness."

Full statement here:

https://www.meaction.net/wp-content/uploads/2024/05/Copy-of-MEAction-Scotland-Impact-Statement-22-23_final.pdf

@mecfs

ahimsa_pdx, to longcovid
@ahimsa_pdx@disabled.social avatar

"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

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@mecfs

Some comments from user "ME/CFS Skeptic" on Science for ME forum:

"They found that only a third of participants with self-reported CFS fulfilled ME/CFS diagnostic criteria (IOM and/or CCC).

The estimated prevalence therefore dropped from 1.1% to 0.4%."

"There are lots of caveats about this study: it only checked ME/CFS diagnosis using questionnaires, not a clinical examination and the response rate was quite low (43%)"

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From

": 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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar
ahimsa_pdx, to longcovid
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting May 13:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-533010/

This two part news summary includes articles, videos, research, advocacy, coming events, and more

@mecfs @longcovid

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

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

PwME

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar
ahimsa_pdx, to longcovid
@ahimsa_pdx@disabled.social avatar

From Yale Medicine:

"Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses"

https://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses

"Research on Long COVID may also shine light on the underlying causes of myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS."

@mecfs @longcovid

ahimsa_pdx, to longcovid
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting May 6:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-531761

The news summary includes articles, videos, research, advocacy, coming events, and more.

Note: A transcript from the CDC's May 6th ME/CFS webinar is now available:

https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf

@mecfs @longcovid

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

How ME/CFS shrinks your world, bit by bit

art by Kornelia Paulsen

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

In past years I've shared stories of my formerly active life.

I'm skipping that this year because some folks interpreted my story in an ableist way. They thought I meant:

"See how active and productive I was? We need treatments so we can be productive again!"

No, I only shared my story to push back on false narratives that being fit and healthy protects you from disabling chronic illness.

Anyone can get ME/CFS or Long Covid!

https://www.meaction.net/learn/what-is-me/

2/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Back to ME/CFS, for a few years has used the phrase "Millions Missing" which has at least 3 meanings:

  • Millions of patients are missing from their lives - work, school, exercise, socializing

  • Millions of dollars are missing from ME/CFS research

  • Millions of doctors are missing ME/CFS education - often not taught in med schools

Here's a pillowcase I made for last year's demonstration and the caption I wrote.

3/n

@mecfs

I've been sick so long, since January 1990, that I don't even recognize my former self. I've lost the ability to do so many things. I feel like a caged butterfly beating its wings against the bars. Marjorie

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

This year is focusing on educating medical professionals with a "Teach ME, Treat ME" campaign.

And you can help! 😁

Just share this link to the Mayo ME/CFS CME (Continuing Medical Education) with your doctor:

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

You can also print the document (8 pages) and bring it to your next appointment. I've given it to several doctors with good results!

4/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Sharing information about the Mayo ME/CFS document (Diagnosis and Management of ME/CFS) - and the associated CME (Continuing Medical Education) - is a great way to immediately improve patient care for people with ME/CFS.

And remember, roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.

Need help crafting an email to send to your doctor? Here's a template:

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

5/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

If you've read this far, thanks so much for listening! ❤️

And if you have the ability (only if you are not struggling yourself!) then you can make a donation to #MEAction here:

https://www.meaction.net/millionsmissing-fundraiser-2024/

6/6

@mecfs

#MEcfs #PwME #LongCovid #MEAction #MEAwarenessDay #WorldMEDay

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 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.

1/n

@mecfs

ahimsa_pdx, to longcovid
@ahimsa_pdx@disabled.social avatar

CDC post for ME/CFS International Awareness Day, May 12th:

https://www.cdc.gov/me-cfs/resources/awarenessday.html

"From May 6 to 12, CDC will light the Atlanta Visitor Center in blue to recognize ME/CFS International Awareness Day. We are honored to have people with ME/CFS and their caregivers join us to kick off this event."

ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome

About half of Long Covid patients meet ME/CFS diagnostic criteria

@mecfs @longcovid

#MEcfs #LongCovid #CDC #MEAwareness #MEAwarenessDay

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

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

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

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