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

BBC: 'I'm scared my daughter will die in hospital'

A man says he is terrified his daughter will die in hospital due to what he says are failures in care by NHS staff.

Pierre Naoum, 62, from Hounslow in west London, says his daughter Carla, 23, who was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is in severe pain and now weighs about 5st 9lbs (35kg) - down from 8st 3lbs (52kg) - after being admitted to West Middlesex Hospital due to problems with her feeding tube.

Even though there are no ME/CFS specialists at West Middlesex University Hospital (WMUH) in Isleworth, west London, Mr Naoum says a psychiatrist assigned to oversee her care has insisted on removing accommodations for her condition such as reduced light, has suddenly reduced her opioid dosage to nothing, and told them she needs to "calm down".

A spokesperson for Chelsea and Westminster Hospital NHS Foundation Trust said it was working "alongside Carla and her family to provide the best possible care and support".

The BBC has gained Carla's consent for her parents to tell her story.​

 

I think there may be more coverage of this problem in the coming week, prior to Maeve Boothby O'Neill's inquest. The BBC piece seems straightforwardly written.

 

Based on my own experience with the problem I'm unusually sympathetic to cases where pwME have feeding issues, and I do not want to comment on anyone's personal situation - these are very concerning cases, and I'm deeply troubled by the frankly horrific way in which very severe pwME have been and continue to be treated by parts of the NHS - but I also think journalists and those who advise them should take care not to give the impression that features such as hemifacial symptoms or involuntary movements (mentioned in more than one recent account) are in any way features of ME/CFS when there is no evidence for any such association.

I don't think it has been mentioned on S4ME before but the MEA have previously produced a number of pieces of material (link to one piece) suggesting that "atypical convulsions" and similar symptoms are associated with ME/CFS, which is simply wrong, and which may be a source of confusion in such cases.

 

It’s really a shame they do the a whole long piece like this while never even mentioning PEM. Surely PEM is a lot better explanation for why things can’t be done to severe ME patients than “doing things is painful”, it is the PEM that makes them so, and I’m worried people who don’t really understand will not be as sympathetic to how it is portrayed as being simply a pain problem, especially in our “no pain no gain” societal mantra.

 

Merged thread

A man says he is terrified his daughter will die in hospital due to what he says are failures in care by NHS staff.

Pierre Naoum, 62, from Feltham in Hounslow, west London, says his daughter Carla, 23, who was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is in severe pain and now weighs about 5st 9lbs (35kg) - down from 8st 3lbs (52kg) - after being admitted to West Middlesex Hospital due to problems with her feeding tube.

Even though there are no ME/CFS specialists at West Middlesex University Hospital (WMUH) in Isleworth, west London, Mr Naoum says a psychiatrist assigned to oversee her care has insisted on removing accommodations for her condition such as reduced light, has suddenly reduced her opioid dosage to nothing, and told them she needs to "calm down".


LINK

 

Oh - this sounds terrible.

 

Imagine being told to 'calm down'. This IS abuse by neglect.

 

A psychiatrist using torture as treatment, really disgusting.
When do those stubborn docs start learning about ME/CFS?
How many Millies and Carla's will it take to get through to all those thick skulls.
I wish Carla all the strength there is, she'll need it.
And to her parents please get mad, when you have to, at such doctors; they don't always know what is best for Carla, you do!!

 

This is so sad to read of yet another catalogue of errors in the treatment of a severe PWME, this time from the NHS psychiatric staff at WMUH who clearly don't understand what they are dealing with.

Its good Dr Charles Shepherd is giving some measured input and referring them to the NICE guidelines.

Shows how important the changes made to the NICE guidelines are and how they effect the lives of PWME, if only people read them and then if they understand them and then if they believe them.

If I won the lotto I would set up a hospice for older PWME so this kind of thing can be avoided in future when young person services end and adult care begins. Maybe we could crowdfund one.

Also there needs to be some kind of NHS recognised ME/CFS treatment helpline or advice centre so this kind of advice does not need to be routed via the BBC. The MEA would be a pretty good candidate.

Poor Carla and her parents, I hope they can find someone to provide better oversight for her treatment. A psychiatrist is not appropriate.

 

Come on man.

 

Telling a very sick person who has been bedbound for this long and is effectively being starved to death that they need to calm down sure is a choice. It's not a choice I could ever make, but it is a choice. Ideologies and belief systems are very effective at making good people do horrible things while reassuring them that they are doing good.

It would be great if there were reporting about the other patients facing this, if some journalist decided to do some *gasp* investigative reporting. We only hear about the ones who have loud advocates making a fuss, there must be so many we never hear from, they simply disappear down the bureaucratic black hole, their suffering never accurately recorded.

If we ever reach a point where it's possible to make people experience things without leaving a mark, where it would be possible to have people truly experience the subjective experience of others, it should become a standard in medical training. Nothing else will make them understand what they did to millions. It will be traumatic, but nothing makes people learn quickly like pain, especially pain that they can feel until they learn the lesson, then only leave memories of that experience, without any actual injury.

I think it will be possible, the technology. The hardest part will be to convince them that not only was it that bad, they won't believe it, but to make them understand how it's so much worse when it never ends, when the very people responsible for solving this horror chose instead to keep it going in perpetuity. They'll be able to stop it at any moment. And if the training is to be any effective, they shouldn't be able to until they truly get it, but that would probably be perceived as torture.

 

Even the old one didn't say that. But it doesn't have to, because it's all in sub-text, in secret rules. It's a secret playbook that they all follow, and see nothing wrong with it.

You are not dealing with good faith professionals when they so blatantly lie, knowing there will not be any repercussions because this is what they are expected to do. They have models of reality that completely reject reality, and they choose the models over reality. Somehow they don't think that there are good reasons why this should never happen, and is in fact normally forbidden, similar to why you do not ever want a government with a secret, unaccountable, police and private tribunals without any due process from which people can simply 'disappear'.

 

I might email the BBC because I think it should be clearly stated that NHS England were unable to refer to any guidelines that stated it’s psychological/referred to NICE which states it’s not a psychological illness.

 

https://www.youtube.com/watch?v=Os74emLs_4Q

 

That's a very respectful report from the BBC, much better than the written report.

 

So grim. Another case of a criminally negligent psychiatrist (imho) doing "behavioural exposure therapy" on a very very physically vulnerable pwME and ignoring medical specialists who specialise in ME.

Suddenly stopping pain medication (perhaps it was a wash out after increasing pain relief too quickly leaving her overly sedated, is my only thought of what the hell they were trying to do!). Either way sounds like a poorly thought out plan without any consultation with family and ME specialists. Or if they did consult, they just ignored it.

The primary concern should be increasing her weight and controlling pain in a very low stimulus environment. She is 35 kg (this is a very dangerously low weight) that will effect many processes in many systems (including her brain) as evidenced by her level of sedation and jerking movements. She is starving to death. Hope she gets the care she needs urgently.

 

Yes I feel more confident this is getting across the nub of the issue

 

https://twitter.com/user/status/1812801094038294677


Etta Loveday
@EttaLovedayME
Millie is going home today! #BringMillieHome #MillieSevereME #saveMillie

11:47 AM · Jul 15, 2024