@sarahwestonrd
Dietitian, #LongCovid since Jan 21 #dysautonomia, #patientexperience, lover of languages, all things #textile & costume. Member research team @long_covid🧮 🩻 Trustee @healthedtrust 🍴🍲🍐🌍 Facilitator PACE program 👣🫂🌈
That's awful Sammie. I can imagine how distressing it must be to fear/know as a parent that we're risking harming our own kids' health further by trying to send them in. Kids w LC need protections to prevent further harm and help meet them where they are.
Yes unmet needs (which need supporting, not punishing) and a bunch of them will have things like Long Covid, ME and types of dysautonomia who are physically too ill to attend and learn (but this might not be visible/the kids might look like other kids who are fit and well with boundless energy).
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’.
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.
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
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
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.
"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
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
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
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...
Grey image of a hospital corridor in the background over which is a red sign with white border and white writing saying CLOSED.
🚨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. ⬇️
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.
📣 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
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...
Hi Till - sorry for the delay.
Here is a link to the Exec Summary: tinyurl.com/Clinic-repor...
Here is a link to the full report: tinyurl.com/Clinic-repor...
All feedback welcome.
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.
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.
🚨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
2/11. More on our key findings is below, and here’s a link to our report:
t.co/KCvyVU6g3q
#LongCovid
#ClosingClinics
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.
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
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.
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 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.
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 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.
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
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.
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
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.
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
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.
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
@ashleydaltonmp.bsky.social @joplatt.bsky.social @jodiegoslingmp.bsky.social @adrianramsay.bsky.social @ruthjoneslabour.bsky.social @labourlewis.bsky.social @laylamoran.bsky.social
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.
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
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.
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
It's a pleasure, we spent the last few months working on it.
Can you get to the news item & download from there? It's at the bottom of the news item. Keep scrolling down!
If not let me look into it. Mt nd to be tomorrow if it reqs a new upload but will reshare to you.
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/...
Report links below to executive summary and full report:
Exec summary here: www.calameo.com/brand-and-soul/read/0005611769c6970ed066f
Full report here: www.calameo.com/brand-and-soul/read/000561176764ca62668fd?page=1
Pls share 🙏🙏🙏
