Sarah Weston RD
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sarahwestonrd.bsky.social
Sarah Weston RD
@sarahwestonrd.bsky.social
520 followers 1K following 32 posts
Dietitian, #LongCovid since Jan 21 #dysautonomia, #patientexperience, lover of languages, all things #textile & costume.

Member research team @long_covid🧮 🩻 Trustee @healthedtrust 🍴🍲🍐🌍
Facilitator PACE program 👣🫂🌈
Posts Replies Media Videos
Reposted by Sarah Weston RD
decodemestudy.bsky.social
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).

We're letting you know the timing in advance so you can pace beforehand.

Thank you to our participants & supporters.
Dark blue background with image of DNA helix. At the top of the DecodeME ‘the results’ logo. Two spotlights shine on a speech bubble that says ‘Initial DNA results’. To the right of this is an image of a research paper. At the bottom of the graphic it says ‘Wednesday 7pm BST’.
August 4, 2025 at 5:23 PM
Reposted by Sarah Weston RD
tomkindlon.bsky.social
3/

“(Contd) Pasman contracted the similar long covid during the pandemic and, as a patient, did notice that cognitive behavioral therapy as a treatment has risks for people suffering from diseases such as long covid and ME/CFS.”

#PwME #MEcfs #CFS
June 19, 2025 at 10:45 PM
Reposted by Sarah Weston RD
tomkindlon.bsky.social
2/

“The realization that I may have wronged young people with ME/CFS, often seriously ill, is painful," says former GZ psychologist Wieke Pasman, one of the signatories. (contd)”

#MEcfs #CFS #PwME
June 19, 2025 at 10:42 PM
Reposted by Sarah Weston RD
tomkindlon.bsky.social
"Healthcare colleagues call pediatricians [in the Netherlands] to order over exhaustion disease ME/CFS" (& the recommendation to use CBT)

Google English translation
nos-nl.translate.goog/artikel/2571...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
NOS News • today, 17:47 Healthcare colleagues call pediatricians to order over exhaustion disease ME/CFS Share this article Sander Zurhake Health Care Editor More than a hundred doctors, psychologists and other healthcare providers are calling on pediatricians and behavioral therapists in an open letter to acknowledge that the therapies they recommend for people with the chronic exhaustion disease ME/CFS do not help but actually make them sicker. "It is time for recognition. For nuance. For humanity." The letter writers believe that the Dutch Association for Pediatrics and the Association for Behavioral and Cognitive Therapies should adjust the treatment guidelines for patients with ME/CFS based on current science. It has happened that children have physically collapsed, ended up in a wheelchair or were bedridden for the rest of their lives. Some have subsequently chosen euthanasia as adults. Recently, NOS reports revealed that in the Netherlands, children with ME/CFS are still dealing with this risky treatment: Cognitive behavioral therapy. This treatment teaches children to ignore warning signals when the body indicates to take it easy, for example because an effort is becoming too great.
June 19, 2025 at 5:49 PM
Reposted by Sarah Weston RD
tomkindlon.bsky.social
Links to some replies to flawed Miller and colleagues BMJ editorial on severe #MECFS

www.bmj.com/content/389/...
www.bmj.com/content/389/...
www.bmj.com/content/389/...
www.bmj.com/content/389/...
www.bmj.com/content/389/...

Screenshot from Science for ME update

#CFS @elisaperego78.bsky.social
BMJ Several new rapid responses have appeared on the BMJ website, commenting on the article by Miller and colleagues on severe ME/CFS. Claire Every, Associate Professor, On behalf of Long Covid Advocacy. Hope Must Be Grounded in Biomedical Evidence for ME/CFS. Freda Dier, Carer. STOP REST PACE. Elke Haussman, General Practitioner. Re: Patients with severe ME/CFS need hope and expert multidisciplinary care - Hope comes from progress through biomedical research. Simon Price, retired GP. Re: Patients with severe ME/CFS need hope and expert multidisciplinary care. Elisa Perego, Researcher and advocate University College London. ME/CFS care must be grounded in lived experience and biomedical research
June 3, 2025 at 1:00 AM
Reposted by Sarah Weston RD
bhanlon15.bsky.social
Global Health Review: 'A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles'

By Violet Affleck

'Long COVID poses a threat to even the healthiest individuals...'

'Some half (half!) of Long COVID cases trigger ME..'

yaleglobalhealthreview.com/2025/05/18/a...
A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles
BY VIOLET AFFLECK I spent the January fires in Los Angeles arguing with my mother in a hotel room. She was shell-shocked, astonished at the scale of destruction in the neighborhood where she raised…
yaleglobalhealthreview.com
May 20, 2025 at 12:46 PM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
🚨1/3. Birmingham & Solihull NHS #LongCovid clinic has been informed by their ICB that it might be closed.
They’ve apparently been given until 7th April to justify their existence.
Is this is your clinic? If so, contact the ICB & tell them why it should remain open! Contact info. below. ⬇️
Grey image of a hospital corridor in the background over which is a red sign with white border and white writing saying CLOSED.
April 4, 2025 at 9:01 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
📣 1/2. #LongCovidClinics Watch UK!!
Are you UK based & have you recently been notified of changes to your local #LongCovid Clinic?

If so, we want to hear about it!

🧑‍💻 Head to our clinics webpage & complete a simple survey:
longcovidclinics.co.uk
Light background with black text saying IS YOUR LOCAL LONG COVID CLINIC CLOSING? We want to hear about it! There is also a white and orange coloured megaphone with a Long Covid Support logo on it, lying on a table.
March 31, 2025 at 8:36 AM
Reposted by Sarah Weston RD
alexisme.bsky.social
We need medical research funding for long covid and ME.
We need NHS services that can manage symptoms and prescribe experimental medications.
We need care, understanding and health professionals to be trained in ME.

www.bbc.co.uk/news/article...
Leeds doctor still 'bedbound' three years after Covid infection
Dr Alexis Gilbert was working in public health when he fell ill and now struggles with daily tasks.
www.bbc.co.uk
March 20, 2025 at 11:01 AM
Reposted by Sarah Weston RD
francesryan.bsky.social
At the heart of every attack on disability benefits is the myth disabled people “get perks”: a free car, loads of cash, a life off work. It misrepresents the reality of disability, whilst exploiting low wages and high living costs to make the public envy people in daily pain.
March 18, 2025 at 7:52 PM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
🚨1/11. NEW: #LongCovid services are failing patients!!

A joint report from us at Long Covid Support & @longcovidkids.bsky.social reveals:

🔴 There are clinics closing

🔴 Care is inconsistent & often falling short of NHS commissioning guidelines

More & link below!! ⬇️

#ClosingClinics
Grey background with teal writing. 'Disabled, discharged and disappearing from view. A snapshot review of Long Covid services across the UK' Long Covid Support and Long Covid Kids logo. There are photos of people on the left of the image.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
2/11. More on our key findings is below, and here’s a link to our report:

t.co/KCvyVU6g3q

#LongCovid
#ClosingClinics
https://tinyurl.com/yc9awcyz
t.co
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
3/11. OVER HALF of adults & children with #LongCovid told us they consider themselves #disabled. Yet services are closing & care is inconsistent.

Long Covid must be recognised as a serious, disabling condition!

Report: tinyurl.com/yc9awcyz
Grey background on the left with writing saying Findings 01 Levels of disability. The Long Covid Support and Long Covid Kids logos are at the bottom. On the right is a pale background with grey writing saying Long Covid is driving high levels of disability. Over half of adults and CYP considered themselves disabled by the condition.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
4/11.  61% of children & 28% of adults told us they didn’t know #LongCovid services existed.

How can people access care if they don’t know it’s available?

📢 We need awareness & proper investment.

Read the report: tinyurl.com/yc9awcyz

#ClosingClinics
On the left is an orange background with writing saying Finding 02 Insufficient awareness. Long Covid Support and Long Covid Kids logos are at the bottom. On the right is a grey background with writing saying Awareness of specialist Long Covid services remains insufficient amongst those with Long Covid. Over a quarter of adults and three-fifths of CYP were not aware of any local specialist Long Covid services. 28% Adults 61% CYP.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
5/11. NHS commissioning guidelines require #LongCovid clinics to be physician-led & offer in-person care.

❌ 25%+ said they’ve never had an in-person or remote appointment with a physician.

📢 Patients deserve physician-led care!

#ClosingClinics

Report: tinyurl.com/yc9awcyz
On the left is a teal background with writing on saying Finding 03 Inadequate care. Long Covid Support and Long Covid Kids logos are at the bottom M. On the right is a grey background with white writing saying Specialist Long Covid services are falling short of NHS commissioning guidelines, which stipulate that services should be physician-led and require the option for in-person consultations. Over a quarter of adults and CYP have received neither an in-person appointment nor a remote consultation with a healthcare professional. 28% Adults 26% CYP.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
6/11. Half of adults & over a quarter of children with #LongCovid told us they were discharged despite ongoing symptoms.

THIS ISN’T CARE - IT’S ABANDONMENT

📢 We need a sustainable care model.

#ClosingClinics

Report: tinyurl.com/yc9awcyz
On the left is a grey background with writing saying Findings 04 Lack of follow-up. Long Covid Support and Long Covid Kids logos are at the bottom. On the right is a pale background with grey writing saying Half of adults and over a quarter of CYP reported that they had been discharged despite still having ongoing symptoms. 51% Adults 28% CYP.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
7/11. Satisfaction with #LongCovid clinics is low, but higher than NHS care overall.

🔴 48% adults & 55% children reported low satisfaction with clinics. Without access NHS dissatisfaction jumps to 77%

📢 Don’t cut specialist care!

#ClosingClinics

Report: tinyurl.com/yc9awcyz
Orange background on the left with writing saying Finding 05 Satisfaction with service. Long Covid Support and Long Covid Kids logos are at the bottom. On the right is a pale background with grey writing saying Satisfaction with specialist Long Covid services is low but is higher than that for NHS services overall.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
8/11. Specialist UK #LongCovid services are already limited - and more are set to close.

❌ Shut down
❌ Merging with local providers
❌ Facing closure by March 2025 without ring fenced funding

📢 We need action NOW!

#ClosingClinics

Report: tinyurl.com/yc9awcyz
Green background on the left with text saying Finding 06 Diminishing services. Long Covid Support and Long Covid Kids logos are at the bottom. In the right is a grey background with white writing saying Specialist Long Covid service provision in the UK is already limited and is set to diminish further. Some services have already closed, others are merging with local providers and many face the risk of closure unless funding is secured beyond March 2025. There is a hanging sign saying CLOSED.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
9/11. Only 6% of adults & 1.4% of children told us they were consulted on #LongCovid service changes.

Patients MUST have a say in the care they rely on.

This is not acceptable.

#ClosingClinics

Report: tinyurl.com/yc9awcyz
Grey background on the left with writing saying Finding 07 Limited Public Consultation. Long Covid Support and Long Covid Kids logos are at the bottom. Pale background on the right with grey writing saying Public consultation about specialist Long Covid service change is absent or tokenistic. Few adults and CYP reported participating in public consultations and none felt that the outcomes met their expectations. 6% Adults 1.4% CYP.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
@ashleydaltonmp.bsky.social @joplatt.bsky.social @jodiegoslingmp.bsky.social @adrianramsay.bsky.social @ruthjoneslabour.bsky.social @labourlewis.bsky.social @laylamoran.bsky.social
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
11/11. Long Covid services are at risk. We call for urgent action. Key recommendations:

🔹 Reinstate surveillance
🔹 Reverse clinic closures
🔹 Ring-fence funding
🔹 Recognise #LongCovid as a disabling condition.

📢 Take action!

#ClosingClinics

Report: tinyurl.com/yc9awcyz
Grey background with teal writing. 'Disabled, discharged and disappearing from view. A snapshot review of Long Covid services across the UK' Long Covid Support and Long Covid Kids logo. Photos of people on the left.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
longcovidsupport.bsky.social
10/11. Health authorities use GP referrals to justify cutting #LongCovid services, ignoring true demand.

❌ This method is deeply flawed

❌ Many needing care aren’t referred

⚠️ Cuts based on bad data put lives at risk!

#ClosingClinics

Report: tinyurl.com/yc9awcyz
Pale background on the left with writing saying Finding 08 Demand for Long Covid care. Long Covid Support and Long Covid Kids logos are at the bottom. Grey background on the right with white writing saying Health authorities are underestimating the true demand for Long Covid care.
March 17, 2025 at 10:09 AM
Reposted by Sarah Weston RD
nisreenalwan.bsky.social
Our study on the prevalence of #LongCovid analysing data from over 750K people in England. Will do a thread of main findings later today. Watch this space.
www.euronews.com/health/2025/...
1 in 10 people aren’t sure if they have long COVID. Why?
Five years after the COVID-19 pandemic began, here’s a look at how many people are still grappling with the medical consequences of the virus.
www.euronews.com
March 18, 2025 at 8:29 AM
sarahwestonrd.bsky.social
1/3
Considering new research from @long_covid & @LongCovidKids yesterday which shows 1 in 2 people with #LongCovid now consider themselves to be disabled by the condition, wonder where this sudden, staggeringly huge, entirely novel group of disabled people fit into the #GreenPaper?
Infographic from Long Covid Support and Long Covid Kids showing that Long Covid is driving high levels of disability. Over half of adults and CYP considered themselves disabled by the condition.
March 18, 2025 at 5:03 PM
Reposted by Sarah Weston RD
brendancrabb.bsky.social
If you’re interested in a crash course from the beginning in chronic issues with COVID I recommend this excellent interview with David Putrino. Perhaps the least well understood consequence is the damage every infection likely causes everyone, symptomatic or not.

www.cbc.ca/player/play/...
Beyond long COVID — how reinfections could be causing silent long term organ damage
It’s now been five years since the COVID pandemic stopped the world in its tracks. The virus is still with us, and continues to make people sick. As many as 1 in 5 Canadians have experienced symptoms ...
www.cbc.ca
March 15, 2025 at 9:42 PM