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
My daughter Isla suffered so much, ill with ME from age 6, told to push through the pain to get better, years of deterioration and disbelief. Involvement of Social Services because of concerns of Fabricated Illness and later her MCAS symptoms put down to anxiety. She died in May
CONTENT WARNING Isla was only 18 years old when she died in May. She had been ill with ME since 6, later with POTS & MCAS. Her family say she faced disbelief & neglect from many professionals. Things have to change for ME patients #VerySevereME #POTS #MCAS Andrew Gwynne MP
I make each of my flower necklaces by casting real flowers in recycled silver: snowdrop,bluebell, lily of the valley, wild carrot, forget me not seedheads,tiny heather wreaths. I also hand-sculpt much-loved bird species to make tiny wearable versions: wren, blackbird, swift. 20%…
On SNJ Today: New @CerebraCharity research reveals widespread patterns of ‘systems-generated trauma’ by public bodies caused to desperate families asking for help. Cerebra CEO Jess Camburn Rahmani says action is urgently needed: specialneedsjungle.com/report-asking-… #parentblame
That little thing you do may seem like nothing to you, but it can truly mean the world to someone.
People suffering from Myalgic Encephalomyelitis currently struggle to access healthcare due to our condition. Please sign my petition to ask government to review barriers with us & fund an accessibility pathway for M.E & Chronic Illness patients 🙏 petition.parliament.uk/petitions/7384… #MECFS
A depressing but not at all surprising read.
NEW POST: A shocking report by @CerebraCharity reveals widespread ‘systems-generated trauma’ by public bodies that’s breaking vulnerable families who’ve asked for support. In a post for SNJ, Cerebra CEO Jess Camburn Rahmani is calling for urgent action: specialneedsjungle.com/report-asking-…
Tessa Munt MP: “ME is perhaps the only condition where the sicker you become, the less care you receive from the NHS.” NHS care for severe ME is nonexistent, over 200 healthcare workers were so concerned they wrote to the Health Secretary 14 months ago but received no response.
Tessa Munt MP highlights how Germany is taking post-infectious diseases seriously, committing €500m over 10 years to research #MECFS & #LongCOVID. She asks if the UK Government will make a comparable commitment, or wait a decade for the Germans’ conclusions before taking action?
Labour coaxed you to vote for it with nature promises. Steve Reed told me to my face that Labour would mandate swift bricks and then blocked them. Are they mocking their own voters?
If you value Britain’s countryside, vote for it 🇬🇧 Vote Labour on Thursday.
Today is the start of children's grief awareness week. Our boy has been through more loss in his short life than most do in a lifetime. He still shows up to with joy and love in his heart, but we know he will need lots of support as he grows. Much love to all grieving children.💙
#ME #LongCovid Something to remind the health care professionals who continue to run basic tests and then decide it’s all psychosomatic.
Hear hear 👏
Ancient woodlands aren’t a blocker. Wildlife isn’t a hindrance. Chalk streams aren’t anti-growth. Our wildlife is on the brink - one in six species faces extinction. These species help define who we are as a nation - we won’t get a second chance to save them.
Swifts so desperately need our help. How any nature advocate could ever vote against fundemental nesting habitat for one of the most rapidly declining birds with one of the lowest populations especially when swift bricks are simple is the worst kind of low. #TheTimes today, p.13
Thank you @tessamunt for securing a debate on providing much needed government support for #pwME next Wednesday. Anyone who is able, do ask your MP to attend. The DHSC care plan was a bad joke, a great blow to many extremely sick people. We need real help. #ME
Delighted that I’ve secured a debate in Parliament on ‘Government support for ME’ next Wednesday 19 November. This provides a valuable opportunity for MPs to share views - the first in years. I hope that many MPs will join me. Do encourage yours! #pwME
This is a hugely important and useful thread. We know how little coverage #ME and #LongCovid are getting. It’s boring/too worrying for many readers, so when we are able to post, to advocate, we must make it count. We can work as a team by reposting etc. We can do our own PR now!
Thread: 🚨 Long Covid and ME voices are being quietly hidden on X. Let’s talk about what’s happening - and what we can do together to push back. 🧵
The UK is one of the most nature depleted countries on 🌍 yet a 🧱is too much of a stretch for Labour to save our swifts.This symbolic 🎥 is for those who care that the existence of swifts is on the line.I hate campaigning but I’ll never give up on the birds.If you care,share🙏
20,000 bricks make up the average 2 storey new house & all we ask is that 1 of them has a hole in it - to save a species and preserve an entire category of birds who live alongside us. Labour hated the idea to put a 3 line whip against it. Talk about betrayal.
This is appalling. What on earth was the reason for the three-line whip to vote this down? The Labour party supported the swift brick amendment when it was tabled on Conservative government legislation in 2023. Has the government offered an explanation for blocking it now?
#birds Swifts fly thousands of miles to breed in the UK—only to find their nest sites blocked up. Their ancient forests with nest hollows now gone, they relied on cavities in buildings, but these, too, have disappeared. To stop their steep 2/3rds decline since 1995, an…
I’m horrified and so very sad that @hopefullizzy is having to contend with this woeful ignorance alongside the distress of a hospital stay with her #ME. So far advocacy has got us nowhere, nothing has changed. It’s hard to know what we can do next to stop this endless abuse.
Anddd so it begins. Today I was asked how many times I’ve left my hospital room… Then how much am I getting out of bed? You’ll lose muscle you know if you just lay in bed. What challenges do you think we can set? Sit in the chair? 1/3
‘If you’re disabled, you’re not ill.’ Sir Charlie Mayfield (author of the Keep Britain Working review) This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics. I’m disabled because I’m chronically ill with #MECFS.
Sir Charlie Mayfield, author of the Keep Britain Working Review, endorses the BioPsychoSocial model (mispronounces it) and also says he thinks we should mainly focus on the Psycho and Social parts…
These are the people who blocked the swift brick amendment last night. 102 Labour Peers thanks to the rather extreme 3 line whip which just goes to show how much #Labour do NOT want to help nature let alone swifts. Normally a 3 line whip is used for fairly extreme amendments.
Honestly medical consent is so hazy and it shouldn’t be at all. I think about this a lot. It’s such a huge violation, yet consent is only spoken about in the context of sexual consent. Consent should be normalised in all aspects of life without coercion. It’s ok to say no.
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