Debs Dakin

Paediatric Emergency Nurse Practitioner @Leic_hospital, Children’s ED and a Mum to a Myalgic Encephalomyelitis and MCAS warrior.

[Debs Dakin @Dakin2Debs]

@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?

[Debs Dakin @Dakin2Debs]

@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.

[Debs Dakin @Dakin2Debs]

@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.

[Long Covid Advocacy 💙 @LongCovidAdvoc]

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
https://t.co/q5LKONwJsS

[John Peters @johnthejack]

Letter in Times today.

#MEcfs

[Long Covid Advocacy 💙 @LongCovidAdvoc]

"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

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

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
https://t.co/13Qv9GKEFN

[Debs Dakin @Dakin2Debs]

@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.

[KarenLesliePhysio @karenphysiocouk]

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.

https://t.co/etN8FMagDy

[Carole Bruce @CaroleBruce17]

#GreatestMEdicalScandal

[KarenLesliePhysio @karenphysiocouk]

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

[Sajid Javid @sajidjavid]

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

[KarenLesliePhysio @karenphysiocouk]

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

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

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

[Ellie Fry @iEllieFry]

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
https://t.co/7XBJuwkGY4

[Etta Loveday @EttaLovedayME]

'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 https://t.co/y7HmWdTKem

[Debs Dakin @Dakin2Debs]

Essential read for anyone involved in medical and nursing care of teenagers with #ME

[Dr Nicola Clague-Baker @ClagueNjc36]

https://t.co/OdtYGxpkEC

[#MEAction Network UK @MEActNetUK]

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.

https://t.co/ue8s6WSiV5 via @UKChange

#MyalgicEncephalomyelitis #VerySevereME