@Starseeker1986 My daughter has very severe ME her MCAS is finally more stable since starting Omalizumab 300mg IM injections every 3 weeks. It’s dramatically reduced her significant daily reactions. Has your friend tried this?
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Debs Dakin
442 posts
Debs Dakin
@Dakin2Debs
Paediatric Emergency Nurse Practitioner @Leic_hospital, Children’s ED and a Mum to a Myalgic Encephalomyelitis and MCAS warrior.
Quorn Katılım Ekim 2016
284 Takip Edilen286 Takipçiler
@thisistheillme I think trying to find joy in small things. My daughter is 16yrs, she’s been severe for 8yrs and very severe for 2yrs. Today we are changing her bedding to Christmas ones, this will give her joy and she has had something to look forward to even if it seems so so simple to most.
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@karenphysiocouk She has very severe ME, POTs, MCAS, POTs plus others. 100% bed bound. She developed migraines rather than cluster headaches about 7yrs ago but only had O2 in the last 15 months. She has 20 mins on waking, then when required. She’s not had to have Sumatriptan since starting O2.
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@Dakin2Debs That's amazing! May I ask if her headaches are linked to another health condition? So pleased she got such good support
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"high flow oxygen is the most effective therapy for headache response"
Where can I get me some of that then? 🤔
pubmed.ncbi.nlm.nih.gov/35343597/
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Debs Dakin retweetledi
No one should starve to death in the UK. This is what happened to Maeve Boothby O’Neil due to the lack of awareness, expertise & services for people with severe #ME.She was disbelieved until she died.
Coroner has issued a prevention of future deaths notice to NHSE & other bodies
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Debs Dakin retweetledi
Coroner will be issuing a Prevention of Future Deaths report - the 1st for #ME
"There is a need to dispel the deeply entrenched view, held especially by older medics, that ME is a psychological condition." @TimesONeill #MaeveInquest
telegraph.co.uk/news/2024/09/2…
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Debs Dakin retweetledi
Debs Dakin retweetledi
"There isn't a single bed anywhere in England set aside for #ME"
Poignant & eloquent piece on BBC Breakfast with @swastrosarah & @BinitaKane
The NHS urgently need to commission specialist ME services
@wesstreeting #MaeveInquiry
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Debs Dakin retweetledi
Today (8 August) is Severe ME Day. It's a day when we remember people who've lost their lives to ME and think of all those who are still suffering from the most severe forms of #MyalgicEncephalomyelitis. Vid link for #MedTwitter. #SevereME #severeMEday
dialogues-mecfs.co.uk/films/severeme/
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@sintydavid Just connect more eero’s? Even in my little home we have 2 but amazing WiFi speed that covers our entire house, garden and drive.
My parents have x3 pro eeros in their large property and have fab connection/speed.
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Finally cable speed WiFi has arrived at the Sinton rural homestead, came with Amazon eero 6 router but that only covers around 1/4 of the house, any advice on compatible mesh devices that work through thick walls and importantly allow streaming in the garage
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Debs Dakin retweetledi
Sometimes it feels like we've been shouting into a void for the last 4 years. Health professionals who did not strive to learn how to manage this condition have a lot to answer for - frankly, there is no excuse now.
theguardian.com/society/articl…
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Debs Dakin retweetledi
Debs Dakin retweetledi
It's World ME Day - #MyalgicEncephalomyelitis is more common than you realise. It is EVERY health professional's duty to be aware of how to work safely with #pwME
#WorldMEDay
@thecsp @thecspstudents @WorldPhysio1951 @theRCOT
Physios For ME@PhysiosForME
A thread of resources for physiotherapists and all Allied Health Professionals for #WorldMEDay You might work with someone with #MyalgicEncephalomyelitis in ANY specialism. 1. For those in specialist services, an in-depth book on understanding and management (with 25% off)
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Debs Dakin retweetledi
M.E. takes away so much from those we love.
Was pleased to lead a Westminster Hall debate @UKParliament yesterday in support of this community and very much welcomed the fresh commitments from Government. @actionforme
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Debs Dakin retweetledi
This is distressing footage but I'd like any AHPs to watch with the knowledge that people with severe ME can suffer extreme hypersensitivity to light. This isn't being overly dramatic. She doesn't need to "stop being upset".
#SaveCarlasLife
@TheChronicCollaboration@TheChronicColab
CW: distressing We want you to meet Carla #SaveCarlasLife #ExposeMENow With family's permission we're sharing some videos of her experience in West Middlesex hospital. This first video is what happens when she is exposed to bright light. Staff won't cover the door window.
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Debs Dakin retweetledi
Millie is in 🏥 suffering from gastroparesis caused by severe #MyalgicEncephalomyelitis. Drs insist she has an eating disorder. There's a risk she could starve to death if she's forced to stay there + not treated properly. Pls #BringMillieHome. #DontLetMEDie @gmcuk @RCPhysicians
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Debs Dakin retweetledi
Millie fears she may die in hospital unless doctors start taking her severe ME symptoms more seriously. She says the hospital enviornment is 'torture' but medics 'won't listen' @MEAssociation @MEActNet
mirror.co.uk/news/health/se…
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Debs Dakin retweetledi
'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients – Byline Times
Thank you so much @TinyWriterLaura for writing this amazing article about Millie! #severeME bylinetimes.com/2024/03/19/a-r…
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Essential read for anyone involved in medical and nursing care of teenagers with #ME
Dr Nicola Clague-Baker@ClagueNjc36
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Debs Dakin retweetledi
Save Millie's life!
Another very severely ill #pwME is being mistreated & we share another call for help. Please sign & share this petition as widely as you can.
chng.it/PPKvy6j2 via @UKChange
#MyalgicEncephalomyelitis #VerySevereME
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