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

Yep. For me when I hear too loud a sound or too loud a light. The symptoms I get are the exact same as if I’d just pushed myself too far physically in another way. It’s my “PEM warning sign symptoms” and sure enough, the next day, I crash.

 

Maybe more important than this is the mainpoint I was trying to make in my Qeios piece - that management should be based on evidence not theory. If one physician says the patient should be treated this way because they are in PEM another physician can say, 'but that's your theory, my theory is that this is the effect of childhood trauma and need sot be overcome'. Meanwhile the patient is in agony, just made worse by doctors arguing.

 

Yes, I think that is how the message has come through to me over the last ten years.

 

Its so heartening to know that at least you, have heard Jonathan.

I think i said in the thread devoted to it, but JIC i didnt... Thank you so much for that Qeiros piece you published, i hope they will read it & take it in.

The time you've taken to properly listen & hear is valuable beyond measure, it makes such a difference.

Lol sorry if i belaboured the point in my long post above, it was more for anyone reading who hasnt heard, i just happened to quote your post at the top

 

The hideous irony is that even if that theory were accurate, 'assisting' the patient to overcome it in such a brutal, agonising & terrifying manner manner, would only retraumatise the poor patient & further exacerbate any anxiety/trauma related response.

 

This is a great point, what therapy guidelines say immediate exposure therapy to all sources of distress is the way to treat them?

 

Yes, immediate. And as painful, debilitating and simply wretched as severe light & sound sensitivities can be, there are also other forms that either fewer people experience or we don't tend to discuss as much that can be harder to adapt to. For instance sensitivity to touch (in my case probably best described as cutaneous allodynia) can be unusually isolating as well as painful & overwhelming; not sure how many pwME experience something like this.

 

I was extremely sensitive to touch/weight on my skin during the worst years, in addition to the light and sound sensitivities. Sensitivities is too mild a word to describe the pain and horrors of those severe ME symptoms.

Also the word 'sensitivity' leads some seriously misguided HCPs to believe that the person needs to be gradually exposed to the aggravating issue (light, sound etc), to 'desensitize' them. ie to inflict actual pain torture on the sick person.

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Now that is what I call nous psychology. Like it is.

 

agreed.

Sensitivity is a terrible word, i've long been banging on about the inappropriateness of it, both here & elsewhere, but what can one replace it with? i dont know

 

I know that I come across as a bit hard hearted at times. And I have always suspected that my mum had my ears done and that my real dad was from Vulcan but when I wrote the Qeios piece I decided to publish it after all my doubts because I did think I had heard some things worth trying to express. I have come a long way in ten years and every inch of it is in the direction of discovering how important listening is.

 

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

 

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

 

Yesterday I wrote but then discarded a post in response on this thread. @rvallee's post states precisely what I wrote in my first paragraph. It is pure torture, basically the agony booth from Star Trek. I then stated that this was medical torture and linked to the sadism/psychopathy/dark personality thread which discusses the higher rates in medicine generally and psychiatry in particular. It's like dripping boiling acid on a burn and telling the patient to heal.

Everything @Lou B Lou, @JemPD and others have written is absolutely accurate. I don't know what it is (microglial activation, dysfunctional aquaporin-4 channels or whatever) but it is just so far beyond normal human experience. You see people with photophobia with meningitis, but they don't seem to report or respond to this degree - it seems a whole other level.

 

Surely it’s a sensory processing difference?

 

Around year 4 I had eyesight testing for reading glasses. Ha! Not that I could actually read much but I couldn't see anything close up. My eyes were sore at the time, not agony but sore. The Optician was concerned with what he described as redness/inflammation at the end of my optic nerves (as far as I can remember). He was concerned enough to refer me to an ophthalmologist.

However by the time the appointment came up my eyes were not sore or painful at that time. The Ophthalmologist noticed nothing untoward so nothing came of it.

With hindsight I should have sat in front of a lightbulb for hours a day to ensure I had the eye pain symptom at the actual time of the consultant eye assessment. But I hadn't totally worked out the pattern of eye pain at that time. It was just sod's law that I did not have the eye pain at the precise time the appointment came up. Just weeks before, and weeks after was when I did have pain. It's also the fact that at worse levels of illness you can't actually get to medical appointments.


The only medication that even touched the eye pain was high dose Voltarol (diclofenac), an anti inflammatory, in suppository form. Some Dr had prescribed it for something or other (cant remember) and as I was throwing up a lot he prescribed the suppositories. I noticed it eased the eye pain so asked my GP for more. She wouldn't prescribe the standard tablets as she had at least taken it on board I had memory problems, and she feared I would take double doses by accident - it can irritate the stomach lining.

The slow release Voltarol tablets were rubbish, too little too late, so I asked the GP for the suppositories and ended up on the highest dose of the suppositories. I am pretty sure I took more than the highest dose in desperation on a regular basis. But it did give relief from the worst of the eye pain. I recall stumbling to the bathroom in the dark, where the medication was, I would have cried with the pain but crying made it worse, then having to stick small waxy torpedoes up my bottom .... they are messy, but when you're that sick and in in that much pain you are not going anywhere anyway.

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I dont experience that way at all, straight talking yes, but always kind.

Just to clarify (because when i re-read my post now i think its meaning seems perhaps a little ambiguous). When i said "at least you, have heard".

I really meant that i was encouraged that at least you have heard - i put the emphasis in the wrong place.

It heartens me no end that you're out there, listening & actually taking it in, rather than just being quiet while people talk. To have a Dr, even if you're not my Dr, actually take in whats being said, is sooo unusual! It gives me hope and reminds me that i'm not completely banging my head on a wall or yelling into the wind.

What drives me crackers, is that you can hear, why cant they?!

Edited to add: because they are too busy protecting their egos nd needing to be 'above' the patient in some way, needing to be 'right'. There are so few Drs, in my experience, who actually consider themselves as no more important than anyone else. Who want the facts more than they want to be right. You dont patronise people, it makes such a change, especially in this field.

 

this is why i cant understand why researchers are not interested in it, well i guess because what would you look at? but its just so outside of standard neurotypical experience that surely it should give some clues? i dunno, obviously not.

I'd be interested to hear more from autistic people who developed severe ME as adults, on the similarities/differences.

Its unfortunate that it's repeatedly confused with the heightened & more 'alert' senses which come when the sympathetic nervous system is triggered - i assume this is why psychs get it muddled. And of course plenty of pwME/CFS have anxiety problems. Its really common i hear people say that since having ME they cant emotionally cope with noise etc & that crowds make them anxious, so picking out the different types of sensitivity would be key to any research.

But for me at least my sensory tolerance increases when i'm anxious. And as i keep repeating to anyone who'll listen, sounds that calm me emotionally have just the same impact in terms of pain & leading to PEM as sound which i hate... so how can it be an anxiety thing?

In fact if i am very scared or angry i can cope with at least 4 times as much sensory stimulus as when calm, it still exertion so after the fear/anger producing event is over the exertion takes its toll as normal (impacts according to the amount), but while i'm scared/angry its glorious bliss frankly, i can listen to music almost loud (compared to my normal), i can be around so much more stimulus.

But that's the same for all my symptoms - they all lessen & function temporarily imporves while i'm 'adrenalined-up'.
So if poor Carla is anything like me, the very last thing she'll be looking forward to is 'calming down'!

 

well i dont know... is it? i mean of course it is, but...?

I dont think that term conveys the problem either, i mean is a 'sensory processing difference' capable of triggering all the symptoms of ME/CFS to get worse - including digestive issues & flu-like stuff such as swollen glands etc.

Not saying it doesnt.... just wondering... It may be probably s little off topic anyway

 

exactly so.