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

Dx Revision Watch said:
https://twitter.com/user/status/1813628615570972769


ALT TEXT:

Thank you to every single person who liked, retweeted, quoted, commented, signed and donated to Millie’s case. A special thank you to the courageous, wonderful, caring people who, most without even knowing Millie or her family, have tirelessly supported her and family in so many ways! Millie and family will be forever deeply grateful to this community and the kindness, support and strength they have shown them. You have restored their faith in humanity at a time when they couldn't believe the extreme challenges Millie was facing to get the care she so desperately needed. They will never forget you and your genoristy of mind, heart, spirit and practically. Wishing you all well on your own journeys.

Etta Loveday
@EttaLovedayME
Thank you so much for all the lovely comments and support on Millie’s lastest update! Millie is home and recovering from the ambulance journey. Millie’s family would like to share the below message. #BringMillieHome
6:35 PM · Jul 17, 2024
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Wonderful to have some happy news at this time.

Best of luck to Millie & family :emoji_four_leaf_clover:
 
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.

The worldwide scientific and medical communities do not know what causes GI issues with ME patients. None of the doctors at any NHS hospital will find anything wrong, and then they will try to deny Karen treatment. But Karen’s GI symptoms are very common with ME, in mild to severe patients. Thousands of ME patients around the world have the same GI issues as Karen.
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If you do not let Karen Gordon go home with a PEG/J tube or TPN installed there at the Conquest Hospital in Hastings UK, and instead require her to travel 100 miles and endure weeks of superfluous new assessments, she will die. It is that simple. She cannot be transported to a different hospital and start a new unnecessary diagnostic process all over again with Doctors who will abuse her by ignoring the NICE guidelines for caring for ME patients. Her health will deteriorate to the point that she will not recover. You already know what the problem is. She cannot eat enough food to survive. This is a common health problem that you know how to solve.
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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

She has now been in West Middlesex Hospital for seven months. Late on Thursday 17 October, an external psychiatrist and a nurse assessed Carla and deemed she met the criteria to be sectioned; in effect weaponising the Mental Health Act.

Doctors have now convinced themselves that her severe gastrointestinal pain is partly psychosomatic. The psychiatrist who did her Section 2 assessment told Carla’s father that “the physical is always related to the mental” or words to that effect.

… … …

One of the major issues with Carla’s case is that West Middlesex Hospital has generally been following NICE guidelines on ME for around four months, now. At first, it did repeatedly breach them – for example, pulling back the curtains in an attempt to ‘get her used to the light’.

This was done by Dr xxx xxx, an NHS liaison psychiatrist who worked with professor Michael Sharpe at Oxford. Yousif has now been put back in charge of Carla’s care after he tried to change her ME diagnosis when she first went into West Middlesex. He was the one who repeatedly tried to expose Carla to light.
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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]
 
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Steve Topple writing in The Canary said:
The repeated calls I am seeing for the Labour government to commission specialist NHS services for severe ME/CFS patients are well intentioned. This narrative around the Royal Devon and Exeter Hospital having a protocol for severe ME in an inpatient setting is admirable.

But let’s be realistic: all any of this will do is possibly – not definitely – stop severe/very severe ME patients from starving to death. It is my understanding that Alice Barrett, who prompted Devon and Exeter to change its protocol, is still being tube fed 18 months later and is severely ill. Sami Berry, who was in a similar situation at the same time, is also still being tube fed.

That’s not a success or an outcome. That’s the bare minimum that the NHS should be doing.
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https://www.thecanary.co/long-read/2024/10/21/severe-me-cfs-nhs-carla/
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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.
 
Peter Trewhitt said:
treating people with very severe ME in the light of unevidenced theories rather than responding to the presenting symptoms.
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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:

Nightsong said:
well clearly she has MCAS and gastroparesis and dysphagia'
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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.
 
Jonathan Edwards said:
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.
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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.
 
From what I have seen, no current strategy is going to make a difference.

This is where we are at. Not only have the NICE guidelines not been allowed to deliver what is needed in the UK, they are being actively abused and perverted to block reform and progress, and insted keep things as they have been for the previous several decades.

When are we going to see the sanctioning of those who do the sectioning? Or are they going to go right on being protected from accountability, and indeed rewarded for their 'services to the state'?
 
Amw66 said:
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…
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I wonder how Carla is doing now - does anybody know?
 
Amw66 said:
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?
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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.
 
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