Medical Mistreatment Of Millie In UK Hospital: ME/CFS

[@Julia-ik9wf]

🙏💙 Sweden here. We’re with you Millie

[@c.b1566]

Hundreds of U.S. have sent cards to Millie. Dr Weir (ME specialist) traveled up to the hospital and spoke to staff but they are still resisting giving her a PEG and she is declining daily. There are two other severe ME patients in similar situations in other hospitals in the UK at the moment. Sadly the new NICE guidelines aren’t clear enough about severe and very severe ME, this was an omission. Thanks for the support Simon. I’ll get the video to Millie’s mother.

[@MECFSExplored]

@c.b1566 Thanks. So sorry to hear that. I am happy to help if I can - I have been involved with campaigning in the past. I am happy to write to the Chief Executive of the NHS Trust, contact local press etc, with the permission of the family. Feel free to pass on my details: mecfsexplored.com/contact

[@joyoung7804]

My heart is with millie. She should be home and feeling safe with all her needs met .I was a severe m.e youngster and its horrendous its still happening. I'm up for action and will be googling. Please let me know if help needed .

[@MECFSExplored]

@joyoung7804 sorry - I didn't get a notification. She is home now. I am trying to get an update..

[@synnevashaustveit9825]

This has to change!

[@MECFSExplored]

It does have to change @synnevashaustveit9825 It will take work.

[@Ghill77777]

Thankfully the section order was lifted a few weeks ago when Dr Weir went & examined Millie as a second opinion & gave his report at a hearing & the judge immediately revoked the section order. Her family are now allowed to freely visit & stay with her. However, her poor Mum has ME & all the physical, mental & emotional load has unsurprisingly taken its toil on her health & she's not well at all. The latest update from the family say Drs do believe she has ME but are assessing her for mental illnesses on top of that! ... 😩 She currently has an ng tube and food is offered to her each meal but she's too poorly & no energy to eat it. I think it's been 6 or more weeks in hospital so far & her body weight continues to drop. 😢 A lady at my local hospital was treated exactly the same 18mths ago. Drs need to reframe their thinking that majority of people who refuse to eat or talk or walk from ME is because there's a real pathological cause - it's not because they want attention, or don't want to get better. 😠

[@MECFSExplored]

Thanks for the update. Someone else did tell me that the section has been dropped. What a disgrace. I am now in touch with someone who is in touch with the family. I’m happy to support them in any way I can.

[@leaperrins8373]

@@MECFSExplored Simon, do you have an update please? I know its several months later, but I've often wondered how things went and whether Millie is finally home with a tube?

[@MyFriendPeter]

Thank you for getting the word out Simon. I have signed the petition. I hope things are put right and Mille is helped and taken care of in the correct manner.

[@MECFSExplored]

You are welcome Peter. Rates that you have signed the petition. To be honest I’m not quite sure at what point they send the petition to the relevant authorities or what their strategy is.

[@joyoung7804]

I've just joined the group and would like to spread some awareness about kings college hospitals Londons care of m.e patients. Would I be able to share ?

[@MECFSExplored]

Hi Jo

[@MECFSExplored]

You are the first to join Jo. `yes, do share what info you have.