7 days to go- a new film, a project close to our hearts, in collaboration with #CombinationDance Together, we’re giving young people with #LongCovid the voices & visibility they deserve. Because no child should be left behind. 🙏 @bendybrain.bsky.social @sedsconnective.org #Dancers #LongCovidKids

A warning for those pursuing a ketogenic diet for their Long C-19 👇🏻👇🏻👇🏻👇🏻 www.science.org/doi/10.1126/...

Thank you @swastrosarah.bsky.social Through our work with service providers, and partners, we are committed to finding solutions that improve the experiences of children and young people living with complex medical conditions including Long Covid & ME.

I have every confidence in the advocacy coming from @longcovidkids.bsky.social at the Public Inquiry. Thanks to the expertise that comes from lived experience.

Hope to see a few of you at this 👋 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

People are dying from ME without a specialist service, please support this important campaign! #Justice4ME

Unfortunately she will have to wait for a judicial decision for another 2 weeks, unacceptable in this case but apparently this is how the system works 😔 @swastrosarah.bsky.social

We only post about Sanne, I will pass it on to her (team). So much depends on today... 🤞

⚠️Please be aware that if you book for a private Covid v*ccine with Pharmadoctor & tick the evolving neurological condition box (which they count ME as being) you are ineligible for the v*x. They won't tell you this in the online consultation & will refuse you onsite.

Livestream link shared in the email: www.hhs.gov/live/live-2/... It looks like the event is scheduled to end at 5 p.m. ET.

🌟 Final Peer Perspectives & Connections → Sept 18, 11:30am MDT Theme: Favorite Things—what helps, comforts, or uplifts you. 💙 Join us one last time in this shared space. 🔗 Register: https://buff.ly/WRhsRXQ

Thinking of you today.

That the new duty of candour Bill has to be introduced at all is why I have resigned from statutory Social Work in England. The job attracts the wrong people. I know what they are supposed to do though, and will help them do it.

We are with you @erinmg.bsky.social #pwvsME

I've gathered this in less time than any of those working in these departments. It's not hard.

@ashleydaltonmp.bsky.social there is much more to what Becky is saying here that you should know. Andrew Gwynne MP can update you on details re early intervention & preventing severe disability vs false economy of ongoing neglect.

Most common offer is group in person support, which exposes to further viral infection and uses up valuable mitochondrial energy someone might want for valuable QOL activity. Totally contradicting understanding of causes and management.

🤩 @vladvexler.bsky.social has a public profile DESPITE #MEcfs & #LongCovidME on top. Ty @alastaircampbell2.bsky.social @restispolitics.bsky.social for the acknowledgement. #MEKills (mostly females) #Justice4ME Justice4me.uk please share

Jeepers Aotearoa, that line isn't heading the right way at all

Tree of the Day

1 a/ *type error, including .... and I am so sorry. but this happens to a lot of people because it's completely overlooked in the entire field of multi-systemic illnesses

I was thrown into Menopause way too early - guess what - through the toxic antibtiotics called #Fluoroquinolones 😫

Hand painted watercolour gift tags on white card tags, on a green mat. Coming soon. #Christmas #Wreath #Watercolour #Art

Visited for 3 minutes today. A NHS London hospital doing everything it can. The contrast with how it was before #MaeveInquest made me weep. Staff are protecting Savannah from visitors, without intruding on her autonomy. Very high bar. Strain could learn much from them. @ashleydaltonmp.bsky.social

Visited for 3 minutes today. A NHS London hospital doing everything it can. The contrast with how it was before #MaeveInquest made me weep. Staff are protecting Savannah from visitors, without intruding on her autonomy. Very high bar. Strain could learn much from them. @ashleydaltonmp.bsky.social

I'd love some suggestions for #photographers to follow on here... mostly interested in #documentary and socially engaged work but love a great #portrait or bit of #streetphotography too. #documentaryphotography #photographersofbluesky #starterpack

Looking forward to 3 mins with #Savannah this weekend. Tube strike delayed my visit. #ME/cfs delays her participation in everyday life. #Justice4ME justice4ME.uk

It's beginning to look a lot like... Yep, finally been able to photograph some of the Christmas decorations that I'm listing. #Christmas #Craft #GiftIdeas #Mhhsbd

Ayrshire Post and Troon Herald, Scotland, 12th September 1986. Thirty-nine years ago today. "Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis

So, if BBC Radio 4 Today says @bsky.app is Left Wing, is it a fact checked statement or political bias from its (largely) Right Wing presenters?? I miss Sarah Montague - left (sic) for WATO; & James Naughty. They ask intelligent questions, and stay up to date with the science.

"everything has to be meticulously planned & paced to ensure I give myself #RecoveryTime. I want to make the world a better place for other people W #ChronicIllnesses ..have to remember that this can’t be at my own expense. - Pippa": buff.ly/HzpMPKz via @wellcomecollection.bsky.social #pwME #MECFS

#WhatILoveAboutMaeve'sLegacy She read Foucault before I did. I am 33 years older than her.

The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group The process so far has been extremely progressive I am hugely optimistic that a world-leading guideline will be produced #pwME #MECFS

and as a first and very simple step, MCAS should be investigated. I've had ME with ibs like symptoms for 10 years. None of the usual ibs meds do much for me. But when dr Taylor prescribed antihistamines, they took away 85% of my symptoms pretty instantly. After only 8 years of suffering with IBS

🔥🔥🔥🔥🔥 ♥️♥️♥️♥️♥️ 💙💙💙💙💙 #pwME #Justice4ME justice4ME.uk

Thank you. I do understand and I certainly wouldn't want to put you in a difficult situation. It is really hard to get access to these resources mostly. Thank you for sharing your comments as they have been very useful too.

#Savannah #vsME update. A good MDT which ran over to twice the length of time allocated. Dr Weir and I were both invited, spoke at length and were heard. The absence of NHS ME specialists _anywhere_ in the UK is the biggest probem for every ICB, including Lewisham and Greenwich.

@ashleydaltonmp.bsky.social @rthonwesstreeting.bsky.social this is so far from cost efficient, I am surprised it has not occurred to DHSC (or the Cabinet Secretary) that the policy you inherited (devolving NHS service development to ICBs) is in urgent need of review. #Justice4ME

Update from Dill's advocacy team. They also have MDT with Dill's ICB today, 9 Sept. Their ICB is self evidently unaware of NHS Devon's clinical guidance on ME/cfs, published but buried on the RDUH website - where other patient safety leads have struggled to find it! www.change.org/p/the-nhs-mu...

@rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social this is on your watch

🧵 Savannah update - please share widely. Formerly known as Gigi, Savannah (S) is in Room 4, Ward 1, Queen Elizabeth Hospital, Woolwich with very severe ME. All her energy is being spent on calling for help. There is a virtual MDT 10.30 tomorrow. S has asked that Dr Weir and I be invited to join 1/2

@ashleydaltonmp.bsky.social @rthonwesstreeting.bsky.social please can we make a date to meet in person in London after Party conference?

It's terrifying to think no HCP understands PEM or the catastrophic risks involved. It took 3 months to recover from NOT being admitted (i.e. a morning with paramedics, talking through options)! I think my life as I know it would have been over had I gone in. No HCP would have cared/known/helped.2/2

The risk of suicide is mitigated by family care. The risk of heart failure is mitigated by being bedbound with 24 hour care. The risk of malnutrition is directly linked to PEM; module 3 fails to make this explicit. Strain is a fool of great magnitude; he cannot learn. @ashleydaltonmp.bsky.social

@ashleydaltonmp.bsky.social @actionforme.bsky.social @meactionuk.bsky.social @thereforme.bsky.social @meassociation.org.uk @binitakane.bsky.social @longcovidkids.bsky.social @longcovidadvoc.com

#pwME NHS module 3 is everything I feared it would be for very severe ME. Strain is not fit to author a #ME training modules. He presided over #MaeveInquest premature death, & almost killed another very severe ME px less than a year later. Why was he appointed to replace Dr Muirhead?

🎶 Today’s the day! 🎶 The LCK Choir is back tonight at 5pm (UK time) 💛 Come join us to sing, connect, and lift each other up. ✨https://www.longcovidkids.org/book-online #Choir #LongCovidKids #MECFS #MyalgicEncephalomyelitis #PoTS #LongCovid #Sing

@ashleydaltonmp.bsky.social Please note

London researchers argue Epstein-Barr virus is not just linked to multiple sclerosis but may drive it by cycling between latent and lytic states. They call for antivirals and immunotherapies that directly target EBV as new MS treatments. academic.oup.com/brain/articl...