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

Wonderful to have some happy news at this time.

Best of luck to Millie & family

 

And still it goes on...
Update from Karen Gordon's family

https://www.change.org/p/save-karen...nd-dehydration-due-to-nhs-failings/u/32765124

 

Coverage for Karen Gordon
It would help if journalists covering Maeve' s inquest could join dots

https://www.itv.com/news/meridian/2...oman-with-me-uncertain-about-future-treatment

 

Seen on social media, not an ME case but relevant to eating difficulties being treated as a mental problem not physical: https://www.justgiving.com/crowdfunding/Help-Megan-debs-wood

 

iNews:
I had ME and almost died – my doctors gaslit me

There is a lot about Maeve in this article, clearly the current inquest into her death was the reason Lucy Rowett's story inspired an article too but Maeve's thread can get very busy, so I thought it was a better idea to post this article here instead.

Lucy Rowett, who currently lives in Austria with her husband but grew up in the UK and developed ME at a similar age, describes the care Ms Boothby-O’Neill received from the health professionals as “tragic but standard practice. Her story is one of many”.

Ms Rowett includes herself in that category. As her health began to deteriorate, she was met with greater and greater resistance from her GP. By the time she was 15, she was in a wheelchair, one that her family had to buy themselves. One GP she saw “kept trying to make me stand up. He seemed frustrated with me[…] A psychiatrist I saw asked if I just thought about getting better and going outside[…] GPs would do blood tests, and when the test came back clear they’d shrug and say there was nothing more they could do”. This reaction meant “my mental health was in the gutter, and so was my mother’s”.

At the time, Ms Rowett and her family were involved with the church which gave them emotional support, and, she says, the teachers were also supportive, allowing Ms Rowlett, an A-grade student, to attend part-time, although she was forced to miss sitting her GCSEs.

Yet medically, “We felt completely isolated and alone”, she says. “There wasn’t the medical or mental health support that we desperately needed”. Eventually, like Ms Boothby-O’Neill, aged 16, Ms Rowlett found herself unable to sit up or chew, weighing just five stone, her mental health deteriorating even further. “I can remember being taken to A&E and thinking that I’m going to die. I couldn’t see a way out at this point. I wanted to give up and end my life.”

According to Dr Charles Shepherd, of the ME Association, cases like this aren’t uncommon. “Around 25 per cent of people with ME/CFS are severely or very severely affected. This means they are housebound or bedbound. Some are so severely affected that they require tube feeding. The new NICE guideline on ME/CFS makes it clear that people with very severe ME/CFS may have difficulty with eating, swallowing and digesting food. They are therefore at risk from life-threatening malnutrition and require specialist care both at home and in the hospital to prevent this from occurring”.

In 2006, Ms Rowett was admitted to the UK’s only inpatient unit at Queen’s Hospital in East London, led by Professor Leslie J Findley, paid for by the local primary care trust. Here she was put on a structured programme which involved rest, relaxation techniques and physical recovery.

“One week I’d start by trying to sit slightly up for 10 minutes, the next week I’d sit up a bit more and for a bit longer. We did the same with walking to the end of the bed”. That helped gradually build back her ability to sit up, chew and walk.

“It made the world of difference to be believed and feel like you were being treated by people who knew what they were doing.”

The inpatient unit that looked after Ms Rowett has long closed and currently there is nowhere for people like her or Ms Boothby-O’Neill to go. “There are no longer any hospital-based referral services with dedicated inpatient beds for ME/CFS which provide the type of specialist care that is consistent with NICE guideline recommendations,” confirms Dr Shepherd. And it’s having disastrous consequences. “In some cases completely inappropriate treatment is being given because a feeding problem has been misdiagnosed as a psychogenic eating disorder.”​

The article continues. Some questionable therapies (reiki, somatic experience therapy, etc) are mentioned as helpful in her recovery.

 

Letter from Whitney Dafoe to Karen's hospital. Largely echoes the points people have been making on the Maeve inquest thread.

https://www.whitneydafoe.com/mecfs/?post=dear-nhs-don-039-t-kill-karen-gordon

 

Article about the recent sectioning of Carla Naoum, an inpatient West Middlesex University Hospital with very severe ME, in the Canary, see

https://www.thecanary.co/long-read/...1BCKwfjMFAt2x-nxtw_aem_eDdpBztvigesJx-fanbrdg

Do we need a separate thread on this? This very much seems to reinforce @Jonathan Edwards ’ point about the dangers of treating people with very severe ME in the light of unevidenced theories rather than responding to the presenting symptoms.

Note: the liaison psychiatrist is named in the article but I hesitated to repeat the name here.

[edited to add point on treating by unevidenced theory rather than responding to the presenting symptoms]

 

I hesitate to comment on individuals, and this sounds like an extremely difficult and desperate situation, but the Canary piece is somewhat unhelpful and frankly it is more confusing than clarifying. You can't just say "well clearly she has MCAS and gastroparesis and dysphagia"; that's not how medicine works. I wonder if the seizures that are mentioned are a factor in this case; the article doesn't say what kind. Naming the psychiatrist will just rile the hospital and perhaps even have them worried about their staff members, which definitely won't help her.

There is a right to a tribunal and I think legal aid is available for representation by accredited solicitors. It would probably be best to have legal representation who have acted in similar cases before.

 

Yes, yet again we seem to have a poor individual wedged between two sets of doctors' unhelpful beliefs -on the one hand everything physical being affects by the mental and on the other:

And to cap it all we have gastroenterologists who believe in both sorts of theory.

If only people would admit we have no idea what is going wrong.

 

What is most frustrating is that no one is learning from experience. If people had listened to their patients and responded just to the symptoms, we would have at least cumulative experience of what seems to happen with non oral feeding in ME, which could then lead to testable hypothesis.

 

https://twitter.com/user/status/1848390565521485835


The NHS just sectioned a very severe ME/CFS patient under the Mental Health Act

Carla's been in West Middlesex Hospital for 7 months; she has been utterly neglected. Now they're claiming she's mentally ill & have sectioned her. @MrTopple has the story:
thecanary.co/long-read/2024…

 

Sadly another death with feeding tube ( lack of)
https://twitter.com/user/status/1905685296299327658


Found out today that a lady in a Bristol hospital who had M.E, EDS and MCAS passed away this week from starvation.

How tf is that possible in this day and age to allow that to happen? To be refused TPN because the ‘infection risk is too dangerous’ … more dangerous than? Death?

 

Is this official NHS policy now, not offering TPN for fear of infection, even if it means death of a patient?

Because the reasoning seems exactly the same as in Maeve’s case.

 

More like Promotion of future deaths. Horrible. Barbaric.

 

Urgh I just read the thread, there were a lot of people saying “ well yes because you only have that if your gut is beyond saving…” it’s amazing how many people seem to think the very real proven outcome of “death” is fine when balanced against using a last-chance measure like TPN.

You’d think it was “medicine seeking” behaviour asking not to perish in hospital from starvation.