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

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

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

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

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

Today is International ME/CFS Awareness Day!

I'm going to try to post a few things on this topic, and I will definitely be boosting a whole lot of posts from other folks!

Just a warning for anyone who might be overwhelmed by my higher than usual level of posting.

Feel free to mute me for the day (love that Mastodon feature!), or filter out related hashtags, or even unfollow - whatever works for you! ❤️

#WorldMEDay #MEcfs #PwME #MEAwarenessDay #MyalgicEncephalomyelitis

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

#May12 #May12th #MEAwarenessDay @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

antdesros, to mecfs
@antdesros@jasette.facil.services avatar

@mecfs
This is an entirely English-translated version of the first element of the ME awareness campaign made by CMGouin and AQEM, the ME association of Quebec.
You know Olympics and Paralympics, but do you know there are also PwMElympics.
Decathlon: working outside home
Design and illustration by CMGouin cmgouin.com
aqem.ca
You can find the other elements of the campaign at @cmgouin (though they're not entirely translated)

PwMEOLYMPICS Severity level of the ME: light (first level) Decathlon: working outside home Duration: 8 hours Level of difficulty : 9/10 Possible side effects: concentration disorders, migraine, pain, post-effort malaise, deterioration of health status with loss of capacity People with myalgic encephalomyelitis (PwME) perform daily exploits
Myalgic encephalomyelitis (ME) is a devastating, chronic and complex disease that hinders all aspects of life. ME affects children, adolescents and adults of all ages and backgrounds. Yet people with myalgic encephalomyelitis (PwME) perform daily exploits. Design and illustration: CMGouin.com Production : AQEM.ca

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.

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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

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

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

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

I realized that once again I completely forgot to spell out the abbreviations ME and ME/CFS.

So, for folks who have never heard of this illness, or who may mistakenly know it as "chronic fatigue" (which is a symptom of many illnesses and is not the same as an ME or ME/CFS diagnosis), here's a link from the #MEAction website:

"What is ME?"

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

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #MEAwarenessDay

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Recording of 21-minute Cape Talk Radio interview this morning Bettie Hough who’s lives with ME & Chair of ME & Long Covid Unite SA & Prof Resia Pretorius

https://www.primediaplus.com/2024/05/11/intense-fatigue-brain-fog-understanding-me-and-the-support-available-in-sa

Some text extracts are also at the link

#MEcfs #CFS #PwME #May12 #May12th @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Acronyms explained

#MEcfs #CFS #PwME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New from the US:

Mitochondrial DNA Missense Mutations ChrMT: 8981A > G and ChrMT: 6268C > T Identified in a Caucasian Female with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (#MECFS) Triggered by the Epstein-Barr Virus

Free:
https://www.hindawi.com/journals/crig/2024/6475425/

#CFS #PwME @mecfs

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

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Dame Shirley Conran, author and campaigner who blazed a trail with Superwoman and Lace – obituary Telegraph Obituaries"

Free:

https://www.yahoo.com/news/dame-shirley-conran-author-campaigner-102213353.html

Following my mother writing to her, she once did an interview on ME on Irish national radio

RIP

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
Sex and disease severity-based analysis of steroid hormones in ME/CFS

Free full text:
https://link.springer.com/article/10.1007/s40618-024-02334-1

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

AndrewGiffordphotography, to mecfs
@AndrewGiffordphotography@mastodon.social avatar

Summer is disgusting and should be banned!

Related, ME/CFS has made me heat sensitive, so sharing this list of house cooling tips in case it helps you similarly.

https://andrewgiffordphotography.substack.com/p/keeping-the-house-cool-as-a-heat

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

This short video (about a minute) from 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

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

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, to mecfs
@ahimsa_pdx@disabled.social avatar

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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

I gave this paper to my new primary care doctor recently (old doctor retired) During my medical history he said, "You must be a severe case."

I said, "I'm moderate. Severe cases are bedbound."

Like most doctors he didn't realize how disabling ME/CFS can be.

Doctors need accurate information! And roughly half of Long Covid cases meet the ME/CFS diagnosis so it's even more important now.

Please join the campaign ❤️

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

3/n

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

News from NIH: Registration now open for the NIH ME/CFS Webinar on May 28

Links in image:
https://nih.zoomgov.com/webinar/register/WN_X9UFe5JRT5uJRg16YR3Wgg#/
https://support.zoom.com/hc/en/article?id=zm_kb&sysparm_article=KB0060564
https://www.nih.gov/mecfs/events

@mecfs

poettonebakke, to random Norwegian Nynorsk

Det fyrste møtet med boka mi!

Musikk: Bugge Wesseltoft, Moon River
#diktbok #diktsamling #pwME

video/mp4

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The recording has just been made available for the NIH ME/CFS Symposium on May 2 on the $8M study "Deep phenotyping of post-infectious #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome "
https://videocast.nih.gov/watch=54675

Agenda is here:
https://mregs.nih.gov/channels/F1P5-F2L3

#MEcfs #CFS #PwME @mecfs

lia_pas, to mecfs
@lia_pas@vis.social avatar

'she breathed' (2018) 🫁
For #BAMonth2024, Opera Mariposa is showcasing this embroidery by me, a multidisciplinary artist with #MECFS. Check it out with exclusive insights and enter to win 'she breathed' art postcards til June 1! #SciArt #MastodonArt https://operamariposa.com/art-showcase/lia-pas/she-breathed/

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

@lia_pas That is such a beautiful piece! 😍

It took me a while to figure out that BA Month stands for "Benefit & Awareness Month" so I'm sharing this link with more info.

https://operamariposa.com/benefit-awareness/#calendar

Opera Mariposa is helping to raise money for the ME | FM Society of BC (British Columbia).

#MEcfs #PwME #Fibromyalgia #LongCovid #NEISvoid #SciArt #Embroidery

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

The prestigious Centers for Disease Control and Prevention (CDC) in the US have released their ME/CFS International Awareness Day (May 12) page for 2024

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

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Not much time left if you want a free appointment for your child (under 21) with Dr Speight in one of these venues. Email: speight [at] doctors.org.uk (email not to be used for general enquiries)

#MEcfs #PwME #CFS @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

I've heard from parents from 3 separate families who were pleased with their appointments with Dr Speight in Dublin today.

#MEcfs #CFS #PwME

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Upcoming CDC ME/CFS webinar on Monday, May 6 includes “Deep Phenotyping of Post-Infection Syndromes and the Way Forward” with Brian Walitt MD MPH & Avindra Nath MD

https://www.cdc.gov/me-cfs/programs/meetings.html

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

3/
CDC ME/CFS Program Update has just been posted in advance of today's meeting

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

#MEcfs #CFS #PwME @mecfs

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