Family push for daughter's removal from Lancashire hospital bbc.in/3UfwQPV

BBC News (UK) Millie has a diagnosis of ME from the UK’s foremost expert. This is not a case of “the family believes she has ME”, she does have ME and she is experiencing extreme suffering and deterioration in hospital, where they are not providing the care she needs.

Every day I sit in my bay window and wave hello/goodbye to members of the family as they come and go. I now can’t remember when I last left the house. #ME

Sign & share the Solve ME/CFS Initiative open letter asking Bernie Sanders & the Senate HELP Comm. to include #IACCIs to proposed #LongCovid Moonshot legislation & help 73M+ Americans impacted by IACCIs like #MECFS #POTS #Dysautonomia #Fibromyalgia #Lyme #MCAS .
ow.ly/tTn350RfhZy

We’re pleased to see that the government has finally put things right and made the Minister for Disabled People a full Minister of State.

This is an important win for everyone that called for the reinstatement of this position 👏

Save the date!
Live Wednesday 17 April 6pm BST
Fireside chat

Dr Binita Kane & Helen Oakleigh present 'The Long Covid Clinic - What You CAN Do'. In partnership with Long Covid Support.

Micro-pacing for recovery, Binita Kane talks to Robin McNelis Robin McNelis Physiotherapy

#LongCovid

Part 1 from Bernie Sanders on Long COVID moonshot:

“The first thing we wanted to do, was to tell these 20 million people - you’re not alone.”

“We brought in some of their critics for a meeting with the new Director of the NIH & her staff to say, look, you’re not doing enough..”

Petition
change.org/p/save-millie-…

Fundraiser
justgiving.com/crowdfunding/b…

#BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie

UPDATE on Carla.

We spoke with the family, supporting them writing a letter to PALS making a formal complaint.

The psychiatrist 'treating' Carla was linked to PACE trial crew & involved in the inception of the disastrous 'liaison psychiatry' model #BringMillieHome #DontLetMEDie

Trying to factor in energy levels when deciding if it’s a good day to wash your bed sheets.

I got it so badly wrong today.

Literally put the washing machine on and had to go straight back to bed for a nap. 🤦🏻‍♀️

BBC Northwest Tonight Clip about Millie who has Severe #MECFS - 'A family's campaign to have a teenager removed from Lancaster Hospital is attracting international attention'. Millie has been there for 10 weeks unable to eat without a feeding tube and can barely move.

Clip of Fran Haddock Fran Haddock on BBC Radio 5 Live yesterday talking about how she had mild #MECFS , became bedbound after developing #LongCovid and the devastating impact it has had on her life.

Interventions I’ve done to regain lung capacity:

0. Bone marrow MSCs intravenously infused
1. Nebulized azithromycin (14 days)
2. Lung training (oumua and IMT)
3. Nurosym (HRV) used post covid to lessen damage and have used longer term. An indirect relationship and theoretical.…

My lungs aged 19 years after having COVID.

After 18 months and numerous interventions, my lungs still have not regained full capacity.

+ In 2021, my lung capacity was age 26.
+ By Nov 2022, after getting covid, my lung capacity was age 45.
+ Now 2024, my lung capacity is age…

A message from our board of trustees.

Meet our members of the board here: longcovidkids.org/trustees

Returning to work with #LongCovid is very different to sustaining working with #LongCovid ie staying at work . Is anyone researching this ?

#BringMillieHome

We've just had a long conversation with Lucy & Abbie regarding the detail of the below update. To say we are disgusted would be an understatement. We've advised them what to do next & will be speaking to them again later today #DontLetMEDie We're not having it.

#BringMillieHome #DontLetMEDie

We have an update from Karen's family. Karen is severely ill and being threatened with legal action if she doesn't move to a hospital unit with a strong psychiatric approach. Please sign and share her petition.

ow.ly/VRyH50RcpuG

#MyalgicEncephalomyelitis #VerySevereME

There is no specialist HSE clinical care for Severe ME patients anywhere in Ireland.

Education & advocacy is left to volunteer non charitable orgs made up of people ill with ME, & the care of patients is only available from 1\2 private drs
Stephen Donnelly
Dr Colm Henry, CCO HSE Ireland
#DontLetMEDie