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#pwme

22 posts15 participants2 posts today
ahimsa

In case you missed it:

"Scientists Find Links to Chronic Fatigue Syndrome in Genes and in the Gut Microbiome"

smithsonianmag.com/smart-news/

A report on two recent studies on ME/CFS. One study found markers in the gut microbiomes of ME/CFS patients. The other study, DecodeME, published a pre-print that identified genetic signals in ME/CFS patients.

DecodeME is the largest DNA study of ME/CFS that has ever been done!

@mecfs

#MEcfs#PwME#DecodeME
Replied in thread
Irish ME/CFS Association

⬆️ Content warning: suicide attempt

Mary previously said we could describe it as follows:

A fictionalisation of the struggles of a woman with (ME), and the obstacles she faces on a daily basis as a wheelchair-using mature student.

In Irish with English subtitles

@mecfs
@chronicillness
@spoonies
@disability
@disabilityjustice






@marytynan

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ahimsa

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and COVID"

counterpunch.org/2025/08/19/my

COVID has sharply increased the number of ME/CFS cases in the USA but research still badly underfunded

"Assuming a 2% ME/CFS incidence rate, we predict roughly 4.38 million cases of post-COVID ME/CFS …"

Adding these COVID cases to current ME/CFS numbers = about 5.7 million cases of ME/CFS

Annual lost income = between $225 - $305 billion

@mecfs @longcovid

#MEcfs #PwME #LongCovid @PwLC #ChronicIllness

CounterPunch.org · Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and COVIDMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), already a long-neglected condition, has been thrust into the spotlight by COVID-19. ME/CFS is
MEActNOW

From Ronald W. Davis, PhD: Community Symposium on the Molecular Basis of ME/CFS returns!

👉 Register for the Community Symposium:
stanford.zoom.us/webinar/regis

ZoomWelcome! You are invited to join a webinar: Community Symposium on the Molecular Basis of ME/CFS. After registering, you will receive a confirmation email about joining the webinar.The Stanford Genome Technology Center will be hosting a virtual Community Symposium on Friday, September 5th from 8:00am-2:30pm (PST)! You will have the opportunity to hear from speakers who will present their findings on ME/CFS, what they believe is the cause of the disease, and how they are working towards a solution. Join us on September 5th to learn more!
#pwME#MECFS
JB 🐎 :neuro:

Just watched one of the most interesting and helpful scientific talks, hosted by Dysautonomia International on:

Neurological Mechanisms of Itch and the Connection to Dysautonomia - by Dr Brian Kim, Director of the Mark Lebwohl Center for Neuroinflammation and Sensation at Mount Sinai.

Everyone dismisses itching as if it’s trivial, but this lecture dives into the evolutionary origins (and why it has been well conserved all these years), connections with the immune system and even pain.

Ultimately, our illnesses are often forcefully placed in a single category when they actually connect many different biological systems. E.g. Itching, POTS, MCAS, post viral syndromes, heart arrhythmias… they could be seen as neurological, immunological and more. If you see a neurologist, they’ll say it’s neurological; if you see an immunologist and they’ll say it’s immunological. And they’re both right! But as patients, we understand this as conflicting messages, especially because it seemingly excludes other mechanisms or causes. Medical professionals from different fields need to talk MORE with one another! (I dream of the day when our medical systems are fully integrated and prioritise truly personalised medicine ❤️‍🩹)

What I appreciated most about Dr Kim’s talk was that he wasn’t bothered about classifying conditions; instead he advocates that scientists discover functional pathways for symptoms and connect them with drugs to accelerate the journey toward successful clinical trials without getting bogged down in definitions of conditions. I.e. prove a drug can make a tangible difference to patients and the illnesses will be validated and recognised in the process. I think most people with ME would especially appreciate this. We have already been waiting many years for not a lot of progress. DecodeME and the new PRIME network could really catalyse this!

The talk gets quite scientific so not sure how watchable it is for the average audience, but I think Dr Kim goes a good job of breaking concepts down to be more easily understood.

youtu.be/007UszgLeBA?feature=s

#pwME #POTS @mecfs #mecfs #MCAS #dysautonomia

YouTubeNeurological Mechanisms of Itch and the Connection to DysautonomiaBy Dysautonomia International
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illmarks

Symptom: MCAS Bucket Explosion
Triggers Include: Drinking Water, Brushing Teeth, Being Inside

Seattle area folks who can attend IRL events:
I will be teaching a respirator-required art workshop related to this project, Bookmarks on the Body, at QTBIPOC Arts Space The Fishbowl on August 27, 6-9pm. I would love to see you there.

While this is not a hybrid event, I am creating virtual-only and disability-focused workshops! I will be using what I learn from this first workshop to improve the format, structure, and content.

If you have any questions, please feel free to reach out to me illmarks @ nyx mir dot com

https://www.illmarks.com/symptom-mcas-bucket-explosion/

#allergy#art#autoimmune
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