ahimsa_pdx, to mecfs
@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

#MEcfs #LongCovid #ChronicIllness #MyalgicEncephalomyelitis #Science4ME

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
vlrny, to mentalhealth
@vlrny@disabled.social avatar

Following up on a side chat, what are folks doing for lazy food hacks when yer too tired to cook but don't want to eat junk?

Share yer ideas so others can steal 'em!

#spoonies #chronicIllness #longCovid #chronicPain #mentalHealth #selfcare

Kencf618033,
@Kencf618033@disabled.social avatar

@vlrny
Tuna, flax seed oil, and a few drops of ghost pepper sauce.

#spoonies #chronicIllness #longCovid #chronicPain #mentalHealth #selfcare

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

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.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Screenshot of the video summary. See the image if you can't read the text.

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting April 29:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-530486/

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

⭐️ One highlight: The Time100Health list includes several people working on ME/CFS and Long Covid (Jaime Seltzer, Avindra Nath, Ziyad Al-Aly, Akiko Iwasaki, and others) ⭐️

https://www.s4me.info/threads/time100-health-jaime-seltzer-postviral-patient-advocate.38357/

@mecfs @longcovid

britt, to random
@britt@mstdn.games avatar

More pokey pokes today … hopefully the last lab tests and vaccines before I get to start on my immunotherapy.

2 week countdown let’s go!

britt,
@britt@mstdn.games avatar

Fun fact: RA doesn’t just affect the joints… and it’s not just an ‘old person’ disease…

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
tomkindlon, to disabled
@tomkindlon@disabled.social avatar

UK Government Open Consultation
“Modernising support for independent living: the health & disability green paper”

Article with links
https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper

The government has published a series of documents including a Green paper & evidence pack

@disability @disabilityjustice
@chronicillness @spoonies

1/

ahimsa_pdx, (edited ) to mecfs
@ahimsa_pdx@disabled.social avatar

A short video (< 2 minutes) about ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome):

https://www.youtube.com/watch?v=X6f4zCe2ZtA

And a quick reminder that several research studies have found that roughly half of Long Covid patients meet ME/CFS diagnosis.

(edited for typos)

halcionandon, to mecfs
@halcionandon@aus.social avatar

Please and share to other platforms.

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an ? I need help.

@covid19 @mecfs @chronicillness @auscovid19 @neisvoid @disability @disabilityjustice @socialwork
@dysautonomia
@dysclinic
@mutualaid

halcionandon, to mecfs
@halcionandon@aus.social avatar

Please #boost and share to other platforms.

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an advocate? I need help.

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC

@covid19
@mecfs
@chronicillness
@longcovid
@neisvoid
@disability
@disabilityjustice
@socialwork
@dysautonomia
@dysclinic

horachio, to mecfs
@horachio@aus.social avatar

Super happy to see Jaime Seltzer in the 100 Health List. Used to occasionally interact with her on the bird site about She is always generous with likes, shares & comments. The information she posts is the advice I trust most. One of the first to discuss in 2020. Congratulations Jaime!

https://time.com/6967257/jaime-seltzer/

halcionandon, to disabled
@halcionandon@aus.social avatar

If you are able and would like help me escape abuse and pay for all the necessary services, I have a crowdfund at: https://www.buymeacoffee.com/ halcionandon

People with Australian bank accounts can use https://www.beem.com.au and pay to @halcionandon. It is fee free and anonymous both ends (so Visa, Mastercard and the platform charge no fees for me unlike Buy Me a Coffee)

I’m also registered at https://www.Prezzee.com.au for e-gift cards which help keep govt out of my finances. Any digital gift card for use in Australia is very appreciated. There’s plenty out there if Prezzee is not your thing. Universal or Amazon cards are best.

People help is also more than welcome - I need a place to stay, an advocate, social worker etc too. There are barely any resources allocated to my catchment area so I’m pretty much on my own. Have been trying almost 2 years to get an advocate!

Albanese’s Escaping Violence package shows no signs of including the and people with so we’re still on our own. Yes the government forgot to ‘forgot’ to include us. Current DV and family violence services won’t help us. I’ve tried them all.

Ask questions if you’re interested or need clarification. I’ve posted a lot too.

Help not expected but highly appreciated. 💜

@disabilityjustice
@chronicillness
@neisvoid
@mutualaid
@MutualAidVisibility
@auscovid19

britt, to medical
@britt@mstdn.games avatar

A fun story from my past week… I’m trying to share the positives.

I had a surgical procedure Monday and had 4 nurses involved during various steps. My 2 surgical nurses knew what POTS was and treated me so well - they gave me extra fluids. :)

My last nurse in recovery… her 16 year old daughter has . What did I do? Of course I talked to her and answered questions and was an advocate… on my surgical bed… because that’s what I do. 💜☺️

We exchanged emails 🤘🏻

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for the week starting April 22:

https://www.s4me.info/threads/news-in-brief-april-2024.37987/#post-527789/

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

@mecfs @longcovid

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Short audio segment (about 5 1/2 minutes) from Here and Now:

"How telehealth companies approach treating complex, chronic diseases"

(no transcript)

https://www.wbur.org/hereandnow/2024/04/30/chronic-diseases-telehealth

drandrewv2, to cfs
@drandrewv2@freeradical.zone avatar

So, here’s some personal and professional news… I’m going to be leaving my job pretty soon. 😬

It’s a bit of a wrench, because this job has been a big and exciting thing, for lots of reasons. But, you know, I have been having a shit of a time with the old and lately, and…

📢 🚨

If you can’t do the job and preserve your health, there will come a point when you just can’t do the job.

That’s not a choice.

It’s an inescapable law of nature.

britt, to medical
@britt@mstdn.games avatar

Going to be a bit quiet here for a few days … I’ve got a surgical procedure in the morning and will have lots of doctor follow up appts to manage.

Good vibes are always appreciated. Imma come back from this stronger, no doubt! I never give up hope 💙💙

ahimsa_pdx, to legal
@ahimsa_pdx@disabled.social avatar

As I try to recover from yesterday's medical procedure I'm sharing a reminder to myself which may also be helpful for others.

From a calendar by @thelatestkate

brianvastag, to mecfs
@brianvastag@sciencemastodon.com avatar

The Writers Guild Initiative is offering workshops for people with ME/CFS an related conditions.

May 17th deadline for applications.

https://mailchi.mp/meaction/writers-guild-initiative-writing-workshops-apply-today?e=70638fc8c9

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