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.

 

I don't think PEM is an explanation. It is just a useful specific term for the way doings things can lead to symptoms like pain in ME/CFS.

I am not sure this is actually PEM though. Being intolerant of stimuli in severe ME is an immediate thing as I understand it. It certainly is for me if I am feeling very ill.

 

It may be different for different people, but in the large majority of people I’ve talked to sensory sensitivities in severe ME is directly because of PEM. Having too much sensory input directly causes PEM and worsens the condition. @JemPD had an excellent comment explaining this here: https://s4me.info/threads/gabapentin-for-pem-related-hypersensitivies.38919/#post-537908

 

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'.

 

Sensory intolerance, if that's the right term, is very immediate. It's probably similar to migraines, the intolerance to light and sound seem very similar. I agree it seems nothing like PEM, although mine developed largely as a result of loud noises, was certainly aggravated by it. But as far as I'm aware it has never been researched. It's simply disbelieved, just like what they're doing to her.

It's horror. I had severe sound intolerance for years and the slightest noise was pure pain. I only experienced a deeper level of this, where even light was painful, and it's probably the only event in my life that I could consider traumatic, something I would do anything to avoid experiencing again. This experience is pure torture, the kind that leaves anyone with the thousand-yard stare. What they are doing should 100% qualify as torture, but they'll never understand it, and feel entitled to make it worse precisely because they are wholly ignorant of it.

 

I don't really follow that @Yann04 because 'PEM' is just what we call the time pattern of symptoms. It isn't a 'thing' that causes things in the sense that we know what it is. Having too much sensory stimulation may well cause PEM but for these very severe patients the account we hear is that stimuli are disturbing and can lead to pain straight away. Either way I am not sure that the PEM term helps much in an account designed for people who have never heard of the term.

Edit: and rvallee confirms the immediacy at least for him.

 

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.

 

I had extreme Sound and Light sensitivity in the early years of ME (early 8 years). The more sick I was the worse the sensitivities were. Sound was devastating, fully disorientating in the short term, but wiped me out in ME energy terms in the longer term. Sirens and motorbikes sounds caused actual sharp pain inside my ears. At worse just a small rustle of paper was devastating.

The light sensitivity was so extreme I had to have the curtains closed for weeks/months on end, but that was not enough, I wore an eyemask, but that was still not enough and any tiny chink of light was agony. The pain was behind my eyeballs, intransigent pain, burning. I worked out that I had to wait for the pain to fully go before being near any light. After the main pain had gone (weeks/months) there was a kind of residual soreness. I worked out over time that I had to wait for the soreness to subside and go before being around any light, however dim. Even just the light from the video machine that told me it was on (small green light) was agony.

These days (year 29) the sound light sensitivities are not so extreme but still a problem. At home I live in a kind of twilight zone - I have all lights low, and not within the range of my sight. ie I place lights in my living room behind me, or in an alcove, so I am not looking directly at any light source. I shade all bulbs very well. If I am around very bright lights for hours I start sensing pain. When I have PEM the sound and light sensitivities are worse.

The thought of being subjected to regular bright lights, perpetual sounds, whilst severely sick and unable to regulate my environment, is horrifying. An early GP (year 2) suggested to me that she admit me to hospital to 'hurry up the diagnosis'. I refused. I was far too sick, weak, light and sound sensitive to survive a hospital ward.

It makes my blood run cold that severely sick ME patients are disbelieved about the pain of sound and light sensitivities.

.

 

It's both.

BOTH

So at my worst its an excruciating pain - an immediate one, sound particularly, but light also, the slightest sound, even the rustle of the duvet, causes a wave of full body pain, never mind just in the ears & head, it has its 'hand' on the 'dial' of the 'volume' & intensity of ALL my symptoms, not just the ones you'd expect, but all of them.

But it ALSO causes PEM in & of itself. It must not be forgotten that processing sensory input is exertion, its activity.

So the effort of processing the sensory stimuli, is 'activity' in the same way that moving, talking, thinking etc are. Sensory stimulus processing has same effect as 'exercise', for me at least.

So subjecting someone who is very severe to stimulus challenge, will be BOTH torture in the moment, AND send them further into a post activity crash where all symptoms worsen (whether we call that PEM or PESE or whatever). And the sensory sensitivity will get worse

Its torturous hell in the moment, and something which will only make the person more ill and MORE sensitive to it, in the same way that forcing a person to exert 'physically' beyond their tolerance will only make them less able to exert in the long run... Forcing sensory input beyond their tolerance will only make them more ill and MORE sensory sensitive in the long run....

Which is likely why the poor girl is screaming despite the fact that the sound of the screaming is probably agony - because its a natural uncontrollable response to both the agonising pain that the light causes in the moment... and also the terror of the hell that she knows is coming as all the symptoms & pain are only going to get WORSE as a result of the light. And she knows that through long bitter experience.

That light exposure, while torture at the time that doctor is inflicting it, comes also with the promise of even worse torture to come, when the impact of it hits later on. When the effort of processing the light he's let in, causes even more exacerbation of every ME/CFS symptom.
Inc sensory sensitivity & therefore it will be even MORE painful than it is currently.

I dont know how to further describe it to people who dont get it, they are unable to hear.
Ending up in Carla's position scares me to death, its just flat out torture, and the staff think they're helping. Its like a horror movie.

From my post @Yann04 linked to above