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

When I talk with providers, I use the term stamina for sensory stimuli. If I need to explain further, I point out that dodgy governments all over the world (including my own) use sensory overload/deprivation as forms of torture. At Guantanamo, it was common to use loud heavy metal music and strobe lights for extended periods in "enhanced" interrogations. Even very healthy young men will find too much sensory stimuli intolerable. But in ME/CFS, the threshold at which sensory stimuli becomes torture is much lower, especially so the sicker the person is.

While it is, of course, impossible to say whether these symptoms are due to ME/CFS or not given that we do not know what the mechanism of action is, I, too, have developed these symptoms as my ME/CFS worsened (seizure-like episodes, hemifacial symptoms, weird involuntary facial movements described deep in the bowels of this post) and I know of at least 2 other severe ME/CFS patients who have these symptoms. In the article mentioned above, they simply say the patient is having these symptoms but don't say they are due to ME/CFS. When I talk to providers, I simply note that I have them but don't state they are due to ME/CFS (though I try to speak as little about them as possible because they make me feel like they will think I'm overly anxious when the symptoms seem to be related to PEM, changes in temperature [especially going from warm to cold], and sensory stimuli). That said, it would be interesting to know how many pwME/CFS do have them.

 

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.

 

The point being that it’s not an unknown phenomenon that some people have issues with sensory stimuli. It’s not a mysterious, never before encountered quirk, my local supermarket does “quiet shopping hour” so why qualified medical professionals should find it so difficult to appreciate, I just don’t know.

maybe they just aren’t as clever as a supermarket manager.

 

Agree. And I think the important part about PEM is that any of these, but remember we still get subjected to actual noise etc that norms would find gave them headaches, is that it is exertion so there is the snowball effect if you are being subjected constantly to these over one’s threshold. Or they are just part of the mix using up one’s energy.

other people's noise - and I use noise because it was deliberate and appalling and no normal person would have put up with it fir two days, but hey we get horrifically bullied because the rumour crap gives license for no one to step in and every nutcase to join in (because noone healthy wants that noise and they excuse themselves doing nothing and pushing it at you by suggesting you'd be ill anyway, 'they have to live their lives', but mostly because you aren't able to do what others do and knock on their door and shout at them) - daily was a big part of what really decline my health further and took all my independence from me.

I’m wary of them getting to use terms like sensitivity because infers we are just persnickety types. And I've found that my situation was caused mainly by well people 'not wanting that noise' so having it directed at me so that it wasn't something they were putting up with, then having the gall to pretend - you know the classic game-playing that happens. People eventually believe their own rewriting.

It’s like being ill with migraines but worse but all this often starts with not being so severe or being bad but the right conditions stop it getting worse, and then we get hammered by it until it destroys us. And at that point we can’t speak to protect ourselves or stop it and we end up in horrific situations like this where other people ‘behaviour when you can get away with it’ gets shown up.

so it is PEM and exertion snd gets made worse by that cycle and the disbelief of how long each incident takes to recover from. And it’s also being ill. Because that’s why we have PEM, we are ill and overdoing it for that. But the difference is Because most with flu and migraine don’t have someone thinking it’s funny to disregard their needs and keep on at it as they get made worse and worse.

I guess you don’t need PEM do describe it because you would expect someone with migraine to not get worse if you never let up shining torches in their eyes but…

 

Agreed. But then the issue - whether you use tolerance, sensitivity etc is the horrible people and attitude who choose to twist and interpret (because of the cod psych that has been allowed to take over and proliferate, but also just a dodgy osychology ie not science too many have and belief is wisdom rather than a personality shortcoming the conceal by telling themselves stories)

so they use take the mick out of new terms or words. It normally just stems from them not liking anything that might inconvenience them a tiny bit one day perhaps. Or not wanting to feel they have to take others needs into consideration. I say this because the people who do this tend to be one and the same. The whole exposure ideas are just nonsense ti sugarcoat what is actually their intolerance and lack of flexibility etc

so I don’t know the term that suitably gets across the issue in terms they don’t feel they can barter with.

 

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

 

In an attempt to discuss the impact of sensory hypersensitivity and PEM in ME, I can only speak for myself but for me there are two types of PEM. One is immediate and the other is delayed by 24 hours, to the hour usually suggesting a link to circadian rhythms.

Severity fluctuates for me so sometimes if I try to do something like hoover the front room or heaven forbid tidy the garden, the immediate PEM happens and causes a crash then I get 24hr PEM on top of that, other times I can push it a bit but dont crash yet I know the kind of exhaustion which spells trouble and means I will get PEM 24hrs later even if I dont crash completely in the short term.

Either way short term exertion contributes to both short and long term PEM and is very exhausting and I have to rest completely for three days to even begin to recover back to baseline. Exhaustion and fluctuation both seem to exacerbate my nervous system's hypersensitivity which, once I was finally diagnosed after ten years undiagnosed, I was glad to read the late Dr Paul Cheney had addressed as a feature of ME, in the context that it is also common in brain injuries as it is a natural response for the nervous system to upregulate itself in this way. I dont think people with normal nervous function can easily appreciate the pathological extent this can reach.

I have always been able to stay out of bed, at the cost of PEM, which I attribute to rowing training and learning to function beyond the pain barrier. Its a curious thing but when you push yourself beyond the pain barrier the brain starts shutting down unecessary processing and I remember one race finishing with what is described as gun barrel vision, where the perceived world is seen as though through a pipe or gunbarrel, seeming distant, further cognitive processing shut down.

During ten years undiagnosed I was often out on my feet, racking up PEM trying to do simple things like a bit of shopping and at such times my nervous system would collapse due to the fatigue and the inflammatory responses both types of PEM involve. During those times I could not understand the world around me properly and used to do things like walk into street furniture because I did not realise it was in my way. Surprisingly I could see it e.g. a lamp post but could not recognise it for what it was and walk around it!

Sensitivity to sound aka hyperacusis has always been a feature, very different from before onset, any little noise is disturbing and loud bangs shoot right through me and hit a nerve as it were and make me feel very angry. I have no control over this feeling but can suppress my impulse to respond aggressively, as though attacked and injured. I also found daylight too bright and painful after onset so I have learned to shield my eyes, lurk in shadows, wear shades and squint etc when before I adapted easily.

One undiagnosed experience I had which parallels the severe ME cases I have read about was when at one point I was so exhausted my referential system broke down completely. Perceptually I could not comprehend the nature of the sources of sounds or how they were related to me in my environment properly and had odd but lucid experiences like sitting on a bus and everyone on the bus was chatting but I perceived they were all chatting to me or about me. It felt like the cognitive filters which tell you "that is someone chatting to her friend over there and nothing to do with me" had simply collapsed and for some reason, possibly exhaustion as with gun barrel vision, my brain had shut them down. In the absence of filters all the noise in the world seemed to pour in to my core like a cognitive waterfall in flood and so I perceived them as though they were all directed at me which was itself very disturbing and even more exhausting, which is a vicious spiral of course. I knew things couldn't be as they appeared but that was how I percieved them, hence lucid but also deeply demoralising.

During that phase I experienced some very unpleasant phenomena for a while which are best decribed as a trip to hell, where every noise I heard was painful to hear, like the screech of a dinosaur in my ear, or a cosmos filled with fingernails scraping on blackboards. Any sound was screechingly painful and caused involuntary terror and overstimultion of my nervous system. This is the closest experience I have had to the descriptions by people with severe ME I have read.

Something else which is similar and more common is rigors which I get sometimes, where just a hint of cold air on my skin can cause me to feel as if I am freezing cold when I am not and to shake and clench my abdominal muscles in involuntary spasm due to the intense feeling of cold, so I can barely walk to get back inside or to somewhere very warm.

Attempting to interpret such experiences using my education in neurophysiology (mostly from Prof Steve Simpson, who was a kind teacher, thanks Steve) as part of my zoology degree at Oxford (I was deeply fascinated by animal behaviour and how it evolves), I think all these kinds of experiences are similar in the way they result from sensory hypersensitivity due to neurological upregulation combined with the shut down of cognitive processing due to neurological exhaustion (exacerbated by neurological upregulation), leading to sensory inputs impacting the midbrain directly in a way they don't normally do, leading to immense pain. I think the problem with this is the great potential for spiralling exhaustion because of the strong neurological responses such hypersensitivity stimulates, which are themselves exhausting, leading to short term PEM and contributing to the backlog as it were of longer term PEM.

I hope this account makes sense and helps comprehension of these phenomena or at least a discussion of them and I fully understand my experiences may not be the same as other people who are more severe. But that is what happened to me FWIW. Importantly, since I was told to rest and pace by Westcare in Bristol before they joined Action For ME, the neurological/cognitive hellhole I was trying to function within has gradually improved the more I rested, though if I get exhausted or fluctuate downward due to infections etc these problems do come back again.

An appropriately educated psychologist ought to be able to understand all that from a neurophysiological perspective and respond appropriately, the question is whether they are trying to interpret their observations and accounts from patients using the right or the wrong models. The latter obviously leads to completely the wrong kind of response which makes everything worse.

 

I'm be interested in reading this - access?

 

I agree with what you've written & thank you for doing that.
Sometimes there's nothing that can (currently) be done & the Doctors job is just to say that -- not come off with some misleading crap.
Oh & Doctors should point patients to this type of forum - I was tempted to say this forum may not be for everyone -- but hey I'm here!

 

It's both constant and exacerbated during PEM.

 

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


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

11:47 AM · Jul 15, 2024

 

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

 

Yeah me too, heightened emotion helps.

 

Wonderful to have some happy news at this time.

Best of luck to Millie & family