#ThereForME
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thereforme.bsky.social
We’re absolutely delighted that today’s #ThereForME blog is a guest piece from @wendychambld.bsky.social!

Wendy writes about the situation facing her constituents in North East Fife, calling for the Scottish government to step up.

Link in next post 👇
“For too long, ME has been underfunded, under-researched, and poorly understood. Patients deserve better.” Wendy Chamberlain MP. New #ThereForME Substack post.
November 4, 2025 at 9:25 AM
tomkindlon.bsky.social
Rosie Barrett, writes on #SevereME & hospital care
www.thereforme.uk/p/sensory-he...

"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm."

Screenshot from @chronicliving123.bsky.social
newsletter

chroniclivingtherapy.com/5-elsewhere-...

#MEcfs
Rosie Barrett, writes on Severe ME and hospital care Rosie Barrett, full time carer for her sister who has very severe ME, writes for ThereForME‘s website about the way that hospitals fail people with ME/CFS and what is needed to support patients better. She writes about the UK but readers from around the world will recognise shared issues. Hospitals should be places of healing – but for people with severe ME, they are often sources of harm. The NHS urgently needs to create sensory-safe spaces. These aren’t ‘nice-to-haves’ – they are essential for people with ME and others with complex neurological conditions. The one-size-fits-all approach to hospital care simply does not work for patients like Alice. from Sensory Hell and Medical Harm by Rosie Barrett on the ThereForME website
October 31, 2025 at 1:51 AM
thereforme.bsky.social
In today's Substack post we share news about what steps are currently being taken to support those with ME and Long Covid.

Link in next post 👇
Campaign update 27. What’s next? #ThereForME advent calendar; Action for ME’s 2025 Big Survey; UK & international research; steps forward? New #ThereForME Substack post
October 28, 2025 at 11:41 AM
thereforme.bsky.social
Today's guest blog is from Rosie Barrett, who writes about her sister Alice's experiences.

Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.
"Alice agreed to be hospitalised reluctantly. She knew she needed help but also knew how damaging a hospital environment would be for her symptoms". Rosie Barrett. New #ThereForME Substack post
October 21, 2025 at 8:29 AM
somethingchronic.bsky.social
@ris-law.bsky.social is there anything the #MEcfs community can do to help besides fundraising to help the #JusticeForME campaign please?

Many of us could share links to info or videos etc that may be helpful. If you tell us what you need, we will no doubt try to provide!

#ThereForME #UnitedForME
ris-law.bsky.social Rook Irwin Sweeney @ris-law.bsky.social · Sep 1
Our client, supported by #JusticeforME, is crowdfunding for legal advice with the aim of ensuring that specialist health services needed by everyone living with ME/cfs are made available – find out more here: www.crowdjustice.com/case/justice... #MyalgicEncephalomyelitis @swastrosarah.bsky.social
A painting of a woman lying in a bed with a landscape of hills in the background.
October 21, 2025 at 7:20 PM
thereforme.bsky.social
We know that support for people with ME isn't anywhere near as good as it should be - & we're working hard to change that.

But this Christmas we wanted to take a moment to celebrate those in the UK who are in our corner.

Can you help us find our #ThereForME advent calendar stars?
A large white star with an orange question mark in the centre. It is on a pale blue background with many small stars. Beneath it “ThereForME Advent Calendar 2025”
October 11, 2025 at 2:32 PM
karenlhargrave.bsky.social
📣 Help us spread the word!

Yes I know it’s October - but at @thereforme.bsky.social HQ it’s already beginning to look like Christmas 🎄

📆 You have until Oct 26 to help us find our #ThereForME 2025 Advent Calendar stars!

🌟
thereforme.bsky.social ThereForME @thereforme.bsky.social · Oct 11
We know that support for people with ME isn't anywhere near as good as it should be - & we're working hard to change that.

But this Christmas we wanted to take a moment to celebrate those in the UK who are in our corner.

Can you help us find our #ThereForME advent calendar stars?
A large white star with an orange question mark in the centre. It is on a pale blue background with many small stars. Beneath it “ThereForME Advent Calendar 2025”
October 11, 2025 at 2:41 PM
thereforme.bsky.social
From Lib Dem conference to Washington DC - today's #ThereForME campaign update shares an update from advocacy in the UK and overseas.

Read on to find out more 👇

(Link in next post)
Campaign update 26. This week: What's happening in Westminster? Long Covid advocacy overseas. New #ThereForME Substack post.
October 7, 2025 at 8:23 AM
thereforme.bsky.social
Today's #ThereForME blog shares findings from a mini survey.

We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like.

Link in next post 👇
Speech bubble with “What would an NHS service for very severe ME look like?” At the bottom of the image: “Perspectives from carers & clinicians. #ThereForME”
September 23, 2025 at 8:20 AM
thereforme.bsky.social
We'd also love to see your creative ways to get involved if making a video of yourself isn't possible - whether that's, recording a video without your face in shot or sharing a message in writing.

Don't forget to tag us, use the hashtag and make some noise! #FundThePlan
The graphic shows the words “#FundThePlan” displayed as if each word is on a step going up. The wording and “steps” are angled slightly on a pink background. It says “#ThereForME” at the bottom.
February 21, 2025 at 9:06 AM
thereforme.bsky.social
Who do you think is behind door number 19?
#ThereForMEAdventCalendar
The image shows 3 baubles. One is fairly gaudy, one has a big question mark in it, and one contains a very blurry photo with the number 19. The caption reads "Guess who's #ThereForME!" Here's a clue for alt-texters: clock
December 18, 2024 at 5:00 PM
drjogreer.bsky.social
@ukparliament.bsky.social #PatientSafety #MyalgicEncephalomyelitis #pwME #APPGME #LongCovid #CovidInquiry Thank you @carolinenokes.bsky.social for being #ThereForME
thereforme.bsky.social ThereForME @thereforme.bsky.social · Dec 6
Dec 6: Caroline Nokes, Conservative MP & Deputy Speaker of the House of Commons.

Her message: “For everyone with ME and Long Covid- I wish you a very Happy Christmas and want you to know that you’re not forgotten. They are hideous conditions, we need more research & much better understanding.”
A pretend polaroid shows Caroline Nokes MP in her office posing for a photo holding a #ThereForME Christmas card. The image on the card shows the dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top, in a snowy landscape against a starry backdrop. The design is in the #ThereForME colours. This second image displays Caroline’s handwritten message. It reads “For everyone with ME and Long Covid- I wish you a very Happy Christmas and want you to know that you’re not forgotten. They are hideous conditions, we need more research & much better understanding. Best wishes, Caroline Nokes MP, Deputy Speaker of the House of Commons”
December 7, 2024 at 12:12 AM
chrissie4btrwrld.bsky.social
Happy Christmas Dr Weir, you are one of our heroes! Thanks for this, & thanks to #ThereforME
December 1, 2024 at 12:39 PM
murtoz.bsky.social
Well done Karen & the rest of #ThereForME - we appreciate you so much!
May 8, 2025 at 6:30 PM
meownersclub.bsky.social
#ActionForME
#ThereForME
@WesStreeting
@theguardian.com
@davetuller1.bsky.social
@lcaireland.bsky.social
#MEActionUK
#25%MEgroup
May 19, 2025 at 2:36 PM
thereforme.bsky.social
The Xmas season can be really hard for those dealing with ME or Long Covid so we hope this advent calendar can bring a little joy.

Tomorrow we’ll see who is behind the first door in our #ThereForME advent calendar. We'll give you a little clue later!

Who would you like to see there?
It’s an advent calendar. The same Christmas tree as in yesterday’s post appears on a snowy landscape with a starry backdrop. Next to the tree lie two presents, one is labelled “research”, the other “patient safety”. Overlaid are 24 empty polaroid style frames, numbered 1-24.
November 30, 2024 at 9:00 AM
thereforme.bsky.social
It’s @joplatt.bsky.social, MP for Leigh & Atherton! Jo is a @teamlabouruk.bsky.social champion in parliament for #pwME & #pwLC + new chair of the APPG on ME.

Her message: “My Christmas wish is for people with ME and Long COVID to be recognised and supported through healthcare and the workplace.”
A pretend polaroid shows Jo Platt MP posing for a photo holding a #ThereForME Christmas card. The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "2". The design is in the #ThereForME colours. This second image displays Jo Platt’s handwritten message. It reads: “My Christmas wish is for people with ME and Long COVID to be recognised and supported through healthcare and the workplace. Jo Platt MP”
December 2, 2024 at 12:00 PM
thereforme.bsky.social
Steve Race MP has been #ThereForME in parliament this year, asking questions about research funding 👩‍🔬💰

questions-statements.parliament.uk/written-ques...
December 18, 2024 at 9:00 AM
stevefifield.bsky.social
🔥 Game Changer notifications for Bluesky.
"Blue Notify" App allows 'following' people you choose.
So - Notifications when they post.
Brings Bluesky alive. Get to see conversations started by people you respect, and the opportunity to join in immediately.

#pwME #pwLC

apps.apple.com/gb/app/bluen...
BlueNotify is an App on App Store - Post Notifications for Bluesky Blue Notify ThereForME posted: 7m ago We've been busy working on something behind the scenes for #FundThePlan and it's very nearly ready. Carole Bruce reposted: 52m ago Five years on and we're still going round and round with whether Covid is airborne. There's no scientific doubt. Denial broke us. ... Binita Kane reposted: 1h ago 1/3. Next in the Fireside Chat series from The #LongCovid Clinic - What You CAN Do! Long Covid Kids posted: 2h ago When you order your any of the #LongCovidAwareness pins we post by Royal Mail. Order now - with first class post & the... Why are so many people out of work? Why are claims soaring ? More than 2 million & it's never mentio... Example notifications 2: Long Covid Kids posted: When you order your any of the 2h ago #LongCovidAwareness pins we post by Royal Mail. Order now - with first class post & the... Sammie McFarland posted: 2h ago Why are so many people out of work? Why are claims soaring ? More than 2 million & it's never mentio... John Peters reposted: 3h ago So if MAGA is correct and X is under massive attack from Ukraine. Then there's only one course of action. Musk must immediately cede half of X's ass... C.H. Romatowski replied to la... 03:31 Wow thank you for running that down (and so fast!! I hope this doesn't become too onerous!) Tom Kindlon posted: 02:28 Update on Science for ME complaint to Cochrane regarding CFS graded exercise review
March 11, 2025 at 9:52 AM
murtoz.bsky.social
Please take some time to check out Karen's post and campaign below. She is a pwLC and an amazing advocate and activist for us and she co-founded the #ThereForME campaign which has been very successful here in the UK in getting *much* better media coverage than we used to get. #ME/CFS #LongCovid
karenlhargrave.bsky.social Karen Hargrave @karenlhargrave.bsky.social · Nov 12
I found some time recently to sit down and write for our #ThereForMe blog.

In my day job I’ve spent a lot of time lately thinking about narratives. Some thoughts on why #ME and #LongCovid narratives matter - and how we can change them for the better.

www.thereforme.uk/p/from-yuppi...
From ‘yuppie flu' to ’anti-recovery activists’
Why narratives around ME and Long Covid matter – and how to change them
www.thereforme.uk
November 12, 2024 at 2:53 PM
tomkindlon.bsky.social
2/

(Contd) Secretary of State for Health and Social Care, inviting signatures by 2nd August. Aims include implementation of the NICE guideline, more research, and use of technology.

Website with link to letter linktr.ee/ThereForME

#MyalgicEncephalomyelitis #LongCovid #PostCovid
@ThereForME | Linktree
We're calling for an NHS that's there for Long Covid and ME.
linktr.ee
July 28, 2024 at 10:14 PM
thereforme.bsky.social
We've already had some lovely nominations! Keep 'em coming!
“Friend” in orange writing overlaid on a while star, which is on a pale blue pack ground with lots of small white stars. Underneath: “Do you have a friend you’d like to thank for being #ThereForME this year? Let us know! #ThereForME Advent Calendar 2025”
October 14, 2025 at 4:23 PM
tomkindlon.bsky.social
New @thereforme.bsky.social blog post today by David Tuller @davetuller1.bsky.social :

"When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial"

www.thereforme.uk/p/when-bad-s...

#MEcfs #LongCovid #PACEtrial
#ThereForME When bad science becomes orthodoxy Reflections from a decade of debunking the PACE trial Emma Gore-Lloyd and Karen Hargrave Jan 21, 2025 Today’s guest post is from David Tuller. David Tuller, DrPH, is a senior fellow in public health and journalism at the University of California, Berkeley. Since 2015, his Trial by Error project has investigated scientific, methodological and ethical problems with research in the field of ME/CFS and, more recently, Long Covid. His position at Berkeley is supported by crowdfunded donations to the university, largely from patients and advocates.
January 21, 2025 at 5:48 PM
stchris.bsky.social
Social Security will be there when you retire. At least if you’re a Boomer! Right? Oh. Jeez. Well. Tough break.

(But go get your Social Security statement at ssa.gov)
From a United States Social Security statement: Social Security will be there when you retire The Social Security taxes you pay go into the Social Security Trust Funds that are used to pay benefits to current beneficiaries. The Social Security Board of Trustees estimates that, based on current law, the Trust Funds will be able to pay benefits in full and on time until 2035. In 2035, Social Security would still be able to pay about $830 for every $1,000 in benefits scheduled. Learn more at sa.gov/ThereForMe.
February 2, 2025 at 3:14 AM
rose-mary-x.bsky.social
Natasha Devon from LBC has arrived!
#pwME #MECFS #LongCovid #ThereForME

@natashadevon.bsky.social
November 14, 2024 at 11:11 AM