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tessapinto.bsky.social
ME [+ comorbidities] post-vax in 2021. 100% bedbound since July 2023. Hope one day to become an advocate for this life destroying disease. Exponent of patient-led research & advocacy, and the right to try.
38 posts 85 followers 254 following
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Posts 16 Comments 34

www.medrxiv.org/content/10.1... Finally we are getting some recognition from scientists - vaccines can cause ME. Now we need to learn how to talk about this productively.

submitted 70 days ago • 0 comments

Leisk is not a doctor, nor as I understand it does he have any relevant qualifications as a scientific researcher. Why is he now dressing up as one?

submitted 92 days ago • 1 comment

Truly ground breaking research here from the NIH, just five years into the pandemic 💀

submitted 118 days ago • 1 comment

Despite being severely unwell @katiamek.bsky.social spent her precious energy to speak out about this negligent treatment she’s been through in an effort to stop others experiencing the same. time.com/7206080/long...

submitted 118 days ago • 0 comments

📢 Today @karenlhargrave.bsky.social and @binitakane.bsky.social will be representing #ThereForME on the Task & Finish group for the new delivery plan for ME. Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised. www.thereforme.uk/p/a-delivery...

submitted 120 days ago • 7 comments

Amatica Health in London are undertaking groundbreaking, patient-led research into ME blood (across a spectrum from mild to very severe), testing a huge range of 31 markers, in order to understand what drives different disease subtypes in ME and Long Covid.

submitted 124 days ago • 0 comments

As a person with ME I’m sick of the notion that I should just accept progress is slow. We need radical and dynamic leadership from our charities and supporters. We need allies to fight for us relentlessly and work collaboratively to change the reality we live every day.

submitted 167 days ago • 0 comments

submitted 159 days ago • 0 comments

In PEM from advocacy last few weeks but just coming on to share this follow up letter and petition to ME Association calling for accountability and action. www.change.org/p/me-associa...

submitted 160 days ago • 4 comments

Next Monday, @tessapinto.bsky.social’s friends are watching Unrest to understand more about ME/CFS and raise awareness of the condition that’s left our friend unable to move, stand, or live without extreme pain for over a year. Please feel free to (virtually) join us - Unrest is free on YouTube

submitted 161 days ago • 2 comments

Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades. His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

submitted 164 days ago • 8 comments

Proud to be an ambassador for #ThereforME. This campaign was launched earlier in the year on BBC Breakfast. It brings together 14 main Long Covid and ME charities. The team are lobbying hard for change. Please support and follow; youtu.be/7u40KIuz8Y4?...

submitted 164 days ago • 0 comments

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...

submitted 208 days ago • 49 comments

Deeply conflicted on the assisted dying bill being voted on today.

submitted 166 days ago • 2 comments

Fantastic that this photography project by Jeremy Jeffs about ME is on display @wellcomecollection.bsky.social Hope lots of people see it. (Was meant to take part but wasn't well enough to have anyone here, and have been shielding also.) #pwME #MEcfs wellcomecollection.org/stories/livi...

submitted 167 days ago • 5 comments

Today’s @yougov.co.uk survey into why the public back assisted dying (or don’t) is a stark insight into how prejudice against disabled people lurks. The belief that needing care is inherently undignified and that ill people are a costly burden on the state are not red flags to ignore.

submitted 167 days ago • 17 comments