United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

Update on Karen's situation (change.org) —

Karen was admitted to hospital because the inner balloon that holds in the PEG- J feeding tube broke and because of other problems with the feeding tube.

We phoned 111 on Tuesday the 19th and Karen was taken to Eastbourne A&E by ambulance. Spent 26 hours in the treatment area of A&E. Very noisy and bright lights. Transferred to Conquest Hospital Hastings approx. 3:30pm, Wednesday. A gruelling 20-mile journey away which made Karen feel much worse and more nauseated and increased her pain. Heather is staying with Karen 24/7. Karen was admitted to a bright noisy six bed bay. Karen has been vomiting, her pain is increased and she feels much more unwell than usual. She is exhausted. Karen cannot rest or do energy management and is having very little sleep. There is a huge infection risk for Karen.

Dietician visited late Thursday morning and told us that Karen is to be started on TPN later that day.

We need to get Karen moved to a single room without delay. Being in a bay is causing her unnecessary suffering and difficulties and risks a relapse in the ME.
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There appear to be multiple patients in extreme physical danger dealing with NHS failures right now.

Someone is reporting on Phoenix rising about a teenager who is unable to eat or drink and is no longer responsive being denied care and advised to do Get. Am I allowed to link to PR?
https://forums.phoenixrising.me/thr...r-articles-on-me-about-to-be-published.91562/

there is also this report on Twitter about Maria Louise Williams:
https://twitter.com/user/status/1756698970099781707


And the case of 37 year old Karen Gorden.
https://twitter.com/user/status/1757438812374945822
 
There is now a change.org petition relating to Millie’s current situation, see https://www.change.org/p/save-milli...-Dgk1uGl2QENZ50lkpRLiIWJsqTtP-KqLqR5wqaapMQo8

It was posted by Abi Mills with the following objectives:

We want:

• Millie to be treated in accordance with the NICE guidelines for ME

• Millie to be believed and it to be recognised that this is not a psychological/mental illness

• Millie to be seen by specialists with extensive knowledge of severe ME

• Millie to have a PEG tube, being fed at 5 degrees and to come home as soon as possible

• Millie to be able to have family visit whenever, as Millie is so unwell, she needs support and advocacy all the time

Thank you,

Millie and her family
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A reminder this thread is for social media and general media items about people in the United Kingdom with both ME/CFS and severe problems in achieving adequate nutrition. Please avoid speculating about the health or other personal aspects of people mentioned.

There is general discussion about severe problems with achieving adequate nutrition here: Severe difficulties with eating in ME/CFS. That thread is also a good place to post about any personal experience of tube feeding and other methods of medical assistance for feeding that you have had.
 
Update from change.org
https://www.change.org/p/save-milli...mary-must-stop-causing-millie-harm/u/32390351
PETITION UPDATE
UPDATE ON MILLIE'S CARE
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Abi Mills
Gateshead, United Kingdom
1 MAR 2024 —



Thank you to everyone who has signed and shared this petition.
 
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