Martin

👏👏👏 to LCAI’s co-founder @sarahoc1.bsky.social and the other mothers of children with #LongCovid in this excellent article

‘Between 5% and 10% of children and adolescents who get covid develop long covid.’

#TreatLongCovid #speirgorm #LongCovidKids #LongCovidAwareness #LongCovidIreland

Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.

I'd probably only trust someone like Jamie Ducharme to write this one. The psychologization of severe-presenting #MECFS and #LongCOVID. Worth a read. 🧪

Props to Rivka Solomon, and other people with lived experience who spoke.

time.com/7206080/long...

Graph showing increase

ME/CFS Publications have steadily increased for a while.

Despite this, ME is still one of if not the most underfunded common disabling illness on earth.

Source: @crunchme.bsky.social

#MEAwarenessHour

One in six people in Ireland have experienced long-Covid symptoms, survey finds Around one in six people in Ireland have experienced long-Covid symptoms, according to a new HSE survey.

Irish Independent: 'One in six people in Ireland have experienced long-Covid symptoms, survey finds'

'Around one in six people in Ireland have experienced long-Covid symptoms, according to a new HSE survey.'

www.independent.ie/irish-news/o...

Blaue Rose

The blue rose indicates that someone died from #MECFS community.

R.I.P. Judith🕯️
@judyintheskynet.bsky.social

May you feel better where you are now and strength for those left behind. My heart is broken.

#mekills #pwME #millionmissing

Even with my Long Covid-induced ME in a pretty good place, I still have to plan ahead for every single interaction. If I do a few hours of work on Monday morning, will I be able to structure my days so I can survive til I have time to crash on Wednesday?

not all in your head I don't want my life to be a perpetual loop of trying to recover from something after something and someone after someone. I don't want recovery to be all that I am

source: not all in your head
#chronicillness #chronicallyill #autoimmune

Six photographs about being stuck in the rut of ME/CFS Now mid-way through photo project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome. I'll share these mini series every once in a while.

Re-sharing the mini-series from my ME/CFS photo project;

substack.com/@andrewgiffo...

It's a long-form project, aiming to help raise awareness. I've lots more work to make and add, including the kinds of images more classically associated with being incapacitated by ME.

#MECFS #pwME #photography

Two t shirts laid on a deck. One is a darker pink and one is a washed out blue. The shirts has a graphic of an orange circle that reads "Long COVID Surf Club" with "ESTD 2020". In the center of the circle there is a design of one big wave breaking and a smaller wave breaking facing the first wave also including an orange sun. Around the circle it reads "Ridin' symptom waves", "Hundreds of millions sick", and "Zero Approved treatments". The graphic is on the back on the shirt.

T-shirts are now for sale on an on-demand basis. There are three designs, one for ME/cfs, one for Long COVID, and one for anyone riding symptom waves!
All proceeds go to research for LC, ME, and other IACCS.
www.bonfire.com/store/sympto...

I’m part of the coolest surf club that nobody wishes to join… but here we are, rockin those waves 🏄🏻‍♀️. Check out @symptomsurfers.bsky.social 💜
Awesome t-shirt design and the proceeds go to @openmedf.bsky.social @polybiorf.bsky.social ✨
#MECFS #LongCovid #myalgicencephalomyelitis #NEISVoid

Hello blue sky people! I have 16,000 Twitter followers to whom I am dedicated to helping with MECFS. How will I ever reach that over here? Do I need to post on both places? ❤️

What it’s like to live with severe ME I have lived with ME (also known as ME/CFS) for over twelve years now. In 2017 it turned severe. Here’s what it’s like.

Then there’s the general pain of exhaustion. Every person with #MECFS, despite the severity, will feel this. This is not something an abled person will ever have felt, even at their most exhausted. www.bedperspective.com/p/what-its-l... #pwme #longcovid #chronicillness

YouTube video by David M Tuller Karen Hargrave

Hearing how @karenlhargrave.bsky.social @emmagl.bsky.social @oonaghcousins.bsky.social
are using their professional skills & experience to do all they can to change how #ME & LC are understood treated & responded to in all areas is inspiring & moving
Grateful to them
#pwME

youtu.be/mhqMELW_oJw?...

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.

youtu.be/RiwX9Y0NbiQ?...

New starter pack, "ME/CFS advocates": "Here are some interesting accounts of #MECFS advocates to follow that are perhaps lesser known but nonetheless very valuable"

go.bsky.app/PZW1Sab

Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME

This is a good question, so I’ll answer to you this way! #MECFS is a multi-system disease, so it affects both the physical and cognitive performance. It ofc varies patient by patient how much those two are affected. For example I can nowadays do more cognitive tasks than physical. 1/8

The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.

Would love to be added, thank you Kelly 🙂

Happy Saturday, everyone! If you have a moment and would like to watch something truly hopeful for #LongCovid and #MECFS sufferers, please watch David Putrino’s #UniteToFight2024 speech. So much already discovered or on the horizon.

Thank you so much for all your work, @putrinolab.bsky.social !

Perhaps cover the way long COVID isn't new, and people have been suffering with acute post rival induced ME/CFS for many years. And as time goes on, many LC sufferers are left in the same boat as ME/CFS sufferers, with inadequate treatments, lack of research and generally forgotten about

In light of all the new faces tonight - reminder that I’ve started a “newbie spoonie” pack for anyone dealing with chronic illness or disabilities and looking to connect with mutuals on Bluesky.

Allies welcome too! It’s a place to build friendship & supportive community:

go.bsky.app/GVzeB2f

If you're writing about declining health, drop in cognition, rapid rise in disability, etc, and you don't even consider the hypothesis that it could be due to a virus that is known to do those things and continues to infect nearly everyone repeatedly, your article will be absurd.

Some great information by Steve, which should help people in the ME/CFS & LC community find people again when they migrate over 💙

Many long COVID patients adjust to slim recovery odds as world moves on There are certain phrases that Wachuka Gichohi finds difficult to hear after enduring four years of living with long COVID, marked by debilitating fatigue, pain, panic attacks and other symptoms so severe she feared she would die overnight.

Many long COVID patients adjust to slim recovery odds as world moves on - www.reuters.com/business/hea...

Not that I want to adjust to how #LongCovid has disabled me, but it's been 4 years and 100s of medical appointments and I am so very limited now.

Exactly, I try to tone down the horror of my situation when talking with friends. Shouldn't have to of course, but only a certain amount of misery is tolerated.

If you are ME/CFS community, please find useful information in below posts 💙❤️🫂

Thank you for this Steve 🙂

I am only at 81 followers 🥲 Can you guys re-post this so I can reconnect with more people here. It's me, Ramy 👋

"well you need to search for a better doctor!"

I've heard them all. It's so difficult for people to imagine that there's no real treatment. Easier to indirectly blame us for not seeking help, not "trying" hard enough, than to realize if it happened to them they'd be in the same situation.

“If it were really THAT bad you would be getting help.”

No. There’s NO help available for the lions share of chronic illness & disabilities

Don’t punish us because you need you need to remain in denial about the frail nature of our bodies. About our crumbling healthcare systems. About disability.