Swiftsandswallows
@Swiftsswallows
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@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
Uk
Joined October 2011
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
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RT @MichaelRosenYes: Thank you Netanyahu, .we'll remember the word 'mishap'. A word useful for such things .as a matter of a lost key,….
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RT @jeremycorbyn: Today is a day of national and international shame. This famine could have been prevented, if only our government treat….
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Remembering Isla today on what would have been her 20th birthday.
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RT @RichardBurgon: A famine has now been formally declared in Gaza for the first time. To stop this genocide, Israel must be hit with the….
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RT @DecodeMEstudy: (1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in….
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RT @UKPoTS: 1/4 This @DailyMail article discusses #PoTS, difficulties obtaining a diagnosis & medication Ivabradine👇. 'For more than 20 yea….
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RT @KatyBruce108: #MedTwitter .We urgently need #ME experts working in @NHSuk .Please take the free 1 hr CPD course by Dr Nina Moorhead .h….
dialogues-mecfs.co.uk
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RT @hopefullizzy: I desperately wish people (and in particular medics) could leave their prejudice aside, step quietly into a room of someo….
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RT @amyrochlin: “I don’t need sympathy. I need change.” should galvanize the entire patient community. It is not just belief and individu….
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My garden has a few of these butterflies at the moment, they're loving the Verbena & Sea Holly. What butterflies are they? Google lens can't make its mind up.
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RT @ABrokenBattery: Paediatrician Dr Nigel Speight, said parents of sufferers of ME are “a sitting duck” for allegations of FII (Fabricated….
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RT @ApsanaBegumMP: Disgraceful and unjustifiable. Over 400 arrests, all while the UK continues to send arms to a state that is committing….
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Such a beautiful voice 💙.
Kara Jane's father on channel 5 talking about the hopes that the new album will raise funds for research and the needs to spend more on research into the disease. #severeMEDay.
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RT @hopefullizzy: Thinking of everyone enduring #SevereME or #verysevereME today, yesterday, tomorrow, 10yrs ago, or 10 from now. Those we….
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RT @DrJoGreer: The most severely affected are too sick to appear on camera - way too much exertion. They live in the shadows, in dark rooms….
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RT @JanetDafoe: On severe MECFS day I take a moment of silence to remember the suffering of very severe patients. I remember their caregive….
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RT @DecodeMEstudy: Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encep….
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We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.
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