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

I asked Jenny and she said this could be shared publicly (so I've shared to my Facebook page)

 

From Dr Hng's fb page, Jenny Wilson

Adam Broderick has agreed to record the interview with Dr Weir and upload it to utube and fb.

The interview should take place at 3.30 pm today, and it is expected to be shown on Spotlight SW at 6.30pm and maybe 10.30pm.

 

Jenny Wilson has shared that Dr Weir was interviewed by the BBC this afternoon but that it will not be televised until tomorrow.

 

Trial By Error: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

"I recently wrote an article for Codastory.com about Maeve Boothby O’Neill, who died from complications of severe ME in October, 2021, after three separate admissions to her local National Health Service hospital in Exeter, England. During her hospital stays, she and her family fought with the hospital over the need for tube-feeding or an alternate approach called total parenteral nutrition that bypasses the digestive system altogether.

Conflicts involving malnutrition are also at the crux of a dispute involving Alice Barrett, a current patient in the same facility, the Royal Devon and Exeter Hospital. The issue is the hospital’s tube-feeding policy, which requires patients to be able to sit up at an incline of at least 30% in order to minimize the risk of complications like aspiration pneumonia. This policy conforms to standard medical practice."

https://www.virology.ws/2023/02/28/...ns-about-severe-me-patients-at-nhs-hospitals/

 

https://twitter.com/user/status/1630693942613114882

@dave30th, @Jonathan Edwards

 

If they're that concerned about risk of aspiration lying flat, then why won't the team consider nasojejunal feeding? That's well established to run continuously at low flow overnight, with the patient flat (eg in older children or adults with CF). We have loads of patients with shorter term NJTs or long-term gastrostomies, GJTs or direct jejunostomies (years).

From Nutritional Care in Children with Cystic Fibrosis (2023, Nutrients) —

I just don't understand this. What is the thinking? If this is the same Trust, surely they realise that they're already about to come in for some real criticism. It's really not going to go well for them if Maeve's inquest resumes and there is another high profile case with identical circumstances.

 

Petition at https://www.change.org/p/save-alice-barrett-life. Currently 10,800 have signed.

 

https://www.youtube.com/watch?v=KySoy0vm6jc

 

The 'what happens when other diseases become similarly debilitating' was something I wondered too as highly relevant.

Agree with this and @Hutan 's comment

 

I don't have experience of the details of options and risks but it does appear that the healthcare professionals are making things more difficult than necessary and potentially putting the patient at much greater risk.

 

Does anyone know if there has been any BBC coverage.

 

YouTube linked in post #29

 

I had thought I had seen a National News clip but can now only find local BBC TV Channel clips as in @SNT Gatchaman ‘s post above.

 

do you mean national BBC coverage? isnt the above youtube clip of a report from local BBC news? there's a BBC logo top left of the screen

cross posted with @SNT Gatchaman he links to the video post

 

The hospital in the utube clip ( Royal Devon and Exeter) say they are relying on NICE guidelines and "the expertise of national specialists" for advice.

I wonder who the national specialists are and whether alternative ways of treating ME patients could be conveyed to them?

 

https://twitter.com/user/status/1631031041753509890

 

https://twitter.com/user/status/1631016573178728453

 

In 2018 this issue of feeding and risk was made public via an excellent stakeholder petition to the NICE review by the 25% Group.
I found it today and have attached here it as it is buried within the extensive records of stakeholder engagement for NICE. I also am aware that NICE requested a nurse expert in NG feeding to give evidence. One was found, a paediatric nurse who had worked in our Eastern area. Not sure why her expertise was not used on Guideline Development Committee?