Swiftsandswallows (@swiftsswallows) 's Twitter Profile
Swiftsandswallows

@swiftsswallows

@swiftsandswallows.bsky.social
My daughter had Severe ME/POTS & MCAS and died in 2024
I am also a parent and carer of a younger daughter with ME & POTS

ID: 390940709

calendar_today14-10-2011 19:56:26

513 Tweet

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Dr Siobhan O'Dwyer (@siobhan_odwyer) 's Twitter Profile Photo

Our research shows that carers who feel trapped in the caring role are at risk of killing themselves or the person for whom they care. Access to regular breaks will prevent deaths! Sign Carers Trust petition to give carers the legal right to respite. carers.org/news-and-media…

Paul Keeble ME/LC (@paulrkeeble) 's Twitter Profile Photo

My conclusion so far - they correctly identified the feedback themes on lack of research, training and service provisions and then decided not to do anything they were told was required. This is a plan to plan at best, it lacks little of substantive change.

Dr Jay Watts (@shrink_at_large) 's Twitter Profile Photo

Ok, possibly less bad /actually good news perhaps as a result of our lobbying. For the Severe Conditions Criteria, a diagnosis will count IF recorded in the NHS system i.e. recognised by the NHS. So a private autism or ADHD diagnosis will qualify IF your NHS GP has it on record.

Swiftsandswallows (@swiftsswallows) 's Twitter Profile Photo

To think that we waited so long for this plan. How the hell am I meant to reassure my daughter with #ME that she won't end up dying as her sister did if this is the best they can come up with after all this time.

Dr Jay Watts (@shrink_at_large) 's Twitter Profile Photo

The Universal Credit Bill has passed. The Motion of Regret did not. I am heartbroken. We got powerful truths spoken in the Lords which may help later in legal and public fights. But.... What is this thing called Labour. Not something I morally recognise Love to all x

Rae (@raea_smith) 's Twitter Profile Photo

A society that forces unpaid carers to hold up signs just to ask for rest is a society that’s failing. Sleep isn’t a luxury. It’s a basic human need. Why is no one in government calling out this abuse? #ProtestFromHome #GiveCarersABreak

Adam (@abrokenbattery) 's Twitter Profile Photo

“We didn’t even see his eyes for over a year.” “It was like dealing with someone almost in a coma.” Clip from Channel 4 News: Nick Benton (Nick Benton) and his family on life with severe #MECFS — as the government finally releases its delivery plan.

Swiftsandswallows (@swiftsswallows) 's Twitter Profile Photo

Thank you so much to #ThereForME. When it feels like we're screaming into a void, you offer the hope we all need. You've achieved so much in one year. Thank you 💙

Jo Greer (@drjogreer) 's Twitter Profile Photo

Katy B As a psychologist and carer of a young adult with very severe ME, I'm increasingly horrified by the pseudopsychological nonsense that permeates collective narratives, obstructs treatment & care, impacting patient safety, & erodes the confidence of patients & carers. Enough!

Swiftsandswallows (@swiftsswallows) 's Twitter Profile Photo

I've been a parent carer to kid/s with ME for over 13 yrs. In this time we've had new NICE guidelines and now the Delivery Plan but really nothing has/seems like it will change for the better. We'll still be left pleading for care & hoping that any professional we see believes us

💙Rachael Maskell MP (@rachaelmaskell) 's Twitter Profile Photo

Handing in a petition to the House of Commons for economic sanctions, to cease all arms sales to Israel and to stop the genocide in Gaza. #York #Gaza #Petition

Frances Ryan (@drfrancesryan) 's Twitter Profile Photo

Labour HQ can mock “Your Party” but it is an enormous failure that the Left has felt it necessary to set up an alternative. Even Blair managed to keep Labour a broad church. “Your Party” isn’t just a new party - it’s an indictment of Starmer’s immoral policies and dire leadership

Memorial ME Victims R.I.P. (@memorialme) 's Twitter Profile Photo

Schon wieder hat eine wunderbare junge Frau ihren Kampf gegen #MECFS verloren, einen Kampf den sie nicht gewinnen konnte. Sie war seit ihrer Jugend erkrankt, ihr letztes Lebensjahr musste sie unermessliche Qualen ertragen. #RIP tapfere Kämpferin!

Schon wieder hat eine wunderbare junge Frau ihren Kampf gegen #MECFS verloren, einen Kampf den sie nicht gewinnen konnte. Sie war seit ihrer Jugend erkrankt, ihr letztes Lebensjahr musste sie unermessliche Qualen ertragen.
#RIP tapfere Kämpferin!
Jo Greer (@drjogreer) 's Twitter Profile Photo

Dr Nigel Speight and his 15 year old grandson, Finn, have already raised 80% of their target to support Medical Aid for Palestinians Medical Aid for Palestinians. There is no greater cause in the world than this right now. Please support if you are able. #GazaGenocide

Michael Rosen 💙💙🎓🎓 NICE 爷爷 (@michaelrosenyes) 's Twitter Profile Photo

You must not see what we have done. You must not see. You must not look. You must not know. You must not tell. You ask, why not? Simple. Because we say so.