Tessa
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tessapinto.bsky.social
Tessa
@tessapinto.bsky.social
92 followers 250 following 38 posts
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.
Posts Replies Media Videos
tessapinto.bsky.social
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.
Immunological and Antigenic Signatures Associated with Chronic Illnesses after COVID-19 Vaccination
COVID-19 vaccines have prevented millions of COVID-19 deaths. Yet, a small fraction of the population reports a chronic debilitating condition after COVID-19 vaccination, often referred to as post- va...
www.medrxiv.org
March 5, 2025 at 7:36 AM
tessapinto.bsky.social
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?
February 10, 2025 at 5:13 PM
tessapinto.bsky.social
Truly ground breaking research here from the NIH, just five years into the pandemic 💀
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Jan 13
3/
The NIH have sent out a press release. Hopefully this will lead to a lot of coverage.

"NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2"

www.nih.gov/news-events/...

#MEcfs #LongCovid
NIH logo News Releases Media Advisory Monday, January 13, 2025 NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2 What New findings from the National Institutes of Health’s (NIH) Researching COVID to Enhance Recovery (RECOVER(link is external)) Initiative suggest that infection with SARS-CoV-2, the virus that causes COVID-19, may be associated with an increase in the number of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases. According to the results, 4.5% post-COVID-19 participants met ME/CFS diagnostic criteria, compared to 0.6% participants that had not been infected by SARS-CoV-2 virus. RECOVER is NIH’s national program to understand, diagnose, prevent, and treat Long COVID.
January 15, 2025 at 1:43 PM
Reposted by Tessa
alexisme.bsky.social
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...
A screenshot of the article with the text: Katiana Mekka, a 26-year-old Long COVID patient from Greece, says education is especially needed outside the U.S. Last fall, she says, she was involuntarily committed to a psychiatric ward and held for three days, until she passed a thorough screening test for mental-health disorders. The ordeal worsened her already severe illness, leaving her virtually unable to eat, move, or talk for days after. "These illnesses are so mistreated and misdiagnosed," Mekka says, adding that so few doctors in Greece know about Long COVID that she has been forced to seek virtual support from specialists in other countries. "The patients that I know, we all have so much will to live and so many dreams. This is not a mental issue. We have severe symptoms."
January 15, 2025 at 11:07 AM
Reposted by Tessa
thereforme.bsky.social
📢 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...
January 14, 2025 at 9:08 AM
tessapinto.bsky.social
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.
January 9, 2025 at 5:17 PM
Reposted by Tessa
alexisme.bsky.social
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.
November 27, 2024 at 7:55 PM
Reposted by Tessa
alexisme.bsky.social
Black tax on the white reads ignoring the very people who your charity exist to protect us mocking them for raising legitimate concern seems incredibly lacking an empathy
December 5, 2024 at 4:49 PM
Reposted by Tessa
alexisme.bsky.social
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...
Sign the Petition
ME Association Chair Neil Riley must step down
www.change.org
December 4, 2024 at 7:15 PM
Reposted by Tessa
celiasilvani.bsky.social
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
December 3, 2024 at 4:18 PM
Reposted by Tessa
thereforme.bsky.social
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”
A pretend polaroid shows Dr William Weir posing for a photo holding a #ThereForME Christmas card. The design shows two presents, one labelled "patient safety", the other "research". The photo is labelled "1". This second image displays Dr Weir's handwritten message. It reads “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”
December 1, 2024 at 9:00 AM
Reposted by Tessa
binitakane.bsky.social
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?...
November 30, 2024 at 10:22 AM
Reposted by Tessa
georgemonbiot.bsky.social
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...
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot
www.theguardian.com
October 18, 2024 at 6:39 AM
Reposted by Tessa
elizacharley.bsky.social
Please share for those able to contribute. (But If you are sick yourself please save your $ for your own needs!) 🙏💙

Thank you to Mum @rgleadow.bsky.social and my sister Lucinda Hartley for helping me organise & manage

www.gofundme.com/f/help-eliza...

2/2
Donate to Help Eliza Access New Critical Apheresis Treatment, organized by Eliza Charley
Eliza Charley suffers from Myalgic Encephalomyelitis (ME): a devastat… Eliza Charley needs your support for Help Eliza Access New Critical Apheresis Treatment
www.gofundme.com
November 29, 2024 at 8:13 AM
tessapinto.bsky.social
Deeply conflicted on the assisted dying bill being voted on today.
November 29, 2024 at 7:32 AM
Reposted by Tessa
paulaknight.bsky.social
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...
Living with ME
Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.
wellcomecollection.org
November 28, 2024 at 9:18 AM
Reposted by Tessa
francesryan.bsky.social
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.
For some, the suffering is doubly pointless because of the additional burden it places on the system and the cost of the treatment given. “Many people suffer unnecessarily, depressed, lonely, isolated and unable to take care of themselves. If they are ready to move on, they should be allowed to do so. Beyond the morals, it would relieve pressure on social care and save the NHS money.” Many also bring up the alleviation of suffering as a reason for their willingness to see assisted dying laws introduced. “For some terminally ill patients, they may face prolonged and intense pain, discomfort, and loss of self-care. In such cases, euthanasia can be used as a means of alleviating the suffering of patients, allowing them to maintain dignity and comfort in the final stages of life.”
November 27, 2024 at 1:08 PM
Reposted by Tessa
thereforme.bsky.social
Make sure you’re following #ThereForME on our new social media accounts!
You can find links here: linktr.ee/ThereForME

#ComingSoon
On a bright orange background sits a dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top. It sits on the ground, which also looks like a “programme loading” bar. Underneath are the words “Coming soon…”
November 26, 2024 at 9:00 AM