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

JemPD said:
Its absolutely not an excuse! But in answer to that question - yes often they do, at least according to the autistic people i know.

And it appears that for the ones who wouldnt do that, ME/CFS is a special case in their minds anyway - its not like being autistic, or even having a brain injury or something, - because being autistic, for those who have any awareness at all, is understood to be neurological & not a form of hysteria/conversion disorder. So it seems like for many medical staff, sensory difficulties due to autism are 'real', while sensory difficulties due to ME are not. Or at least that in autistic people they are not in any way under the person's control as they believe they are in ME.
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But the point is to make the request early and follow the legal pathway, so eventually the hospital can explain to the court why the staff didn’t follow the reasonable request.
 
MrMagoo said:
I don’t think in 2024 it’s an excuse that a HCP doesn’t understand sensory difficulties, it happens not infrequently.
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I am afraid that this is all about 2024. It didn't happen in 1984. My family member is a medical professional used to wards at night from the other side. Apparently things have changed out of all recognition the last twenty years. Hospitals cannot get night staff other than those who really don't care a damn about patients. And I am talking about the most prestigious university hospital neurology ward in the country here.
 
Jonathan Edwards said:
I am afraid that this is all about 2024. It didn't happen in 1984. My family member is a medical professional used to wards at night from the other side. Apparently things have changed out of all recognition the last twenty years. Hospitals cannot get night staff other than those who really don't care a damn about patients. And I am talking about the most prestigious university hospital neurology ward in the country here.
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I don’t have a strong expectation the request will be followed, but that it may be leverage and/or be pursued as a legal challenge.

And I’m talking about in Millie’s case where the psychiatrist is clearly deliberately ignoring the sensory issues.
 
MrMagoo said:
But the point is to make the request early and follow the legal pathway, so eventually the hospital can explain to the court why the staff didn’t follow the reasonable request.
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Have you been in a hospital recently and seen the reality?

In most wards allocating side rooms is a matter of deciding which patients are most at risk of dying from catching infections from other patients, or passing on their infection to someone else. It is pretty much like it was in 1880 these days.
 
Jonathan Edwards said:
Have you been in a hospital recently and seen the reality?

In most wards allocating side rooms is a matter of deciding which patients are most at risk of dying from catching infections from other patients, or passing on their infection to someone else. It is pretty much like it was in 1880 these days.
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I don’t know how many ways I can make this point about an easier legal challenge on the failure to make reasonable adjustments, which isn’t tied to a diagnosis and so eliminates the “it’s not ME, it’s a psychiatric disorder” issue

Again, here is the link
https://www.scope.org.uk/advice-and...reasonable-adjustments-and-making-complaints/
 
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FMMM1 said:
Reminds me of my last job (I've just retired from a junior level post in policy development) - you're strategy is a "go to" - problem x --- anyone else got a strategy to address this?
If there are good examples from other jurisdictions, countries, then worth highlighting this.

I agree with Jonathan - e.g. numbers in England are nX higher than Scotland, Wales & NI.
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Per capita ?
 
JemPD said:
I think part of the problem is that for a healthy person lots of bustle & noise & clatter is unpleasant, but nurses (in general, as evidenced by their actions) dont care about whether your hospital experience is 'pleasant' or not. They dont expeience it as loud because they've gotten used to tuning it out and the patients arent humans equal to them they are in some way "them", they dont see themselves as gossiping loudly in the middle of the night in someones bedroom.

And to add to the problem where these specific cases are concerned... honestly, prior to my developing ME i would have seen Millie (for example, but i saw a video of Carla on the % news piece) i'd have see them in their black eye masks, lying there limp & thin, & whimpering when the curtain was opened &, depending on what mood i was in i'd have thought 'oh for F's sake a tiny bit of light like that cant possibly be that painful!', (to my shame i wasnt the most compassionate person to PwME when in my ignorance i believed it was 'extreme tiredness'. i'd honestly have thought this was a problem of 'teenage girl molycoddled by her parents' syndrome).

Or at best i'd have thought 'ah bless her, of course the light hurts when you're not used to it, i know its hard now but you'll soon get used to it, if i open the curtain it'll help you in the long run'.
(yes i know, prior to having ME i was an ignorant ____!)

I dont know how to get accross to them that its not that, it just not a problem of exposure - where you lie in the dark/silence so 'of course' light & sound are painful & extreme when you first reintroduce them.

But rather it is the opposite... the more exposure there is then the louder/brighter/more painful it gets. So the longer i have spent in dark & silence, the more sound & light i can tolerate. ITs as i begin to 'tire'... its as exposure continues that it becomes more & more painful.
So if i've been resting for long enough & then i turn the computer/light on, after the immediate ouch that we all get when turning the light on initially... but after a moment or 2 i can turn the main light on, and turn some music on too & enjoy it, but after a short while the sound & light become uncomfortable, then painful, & then agony. If i turn the light off the sound goes from agony to merely painful & vice versa.

So Exposure reduces tolerance it does not improve it. IF only it made it better! but do they are think we are so thick as to still have the problem if exposure made it better?!... we are not imbeciles! even at age 12, and parents certainly arent. Of course every parent said 'you need to get used to it' to their kids before accepting that exposure was making it worse.

I dont know how to communicate that to doctors/nurses in a simple way they can understand, because they all just persist in hearing 'you're sensitive because you're not used to it', regardless of how much you explain.
I think its not helped by the use of the word 'sensitive' or 'intolerant' but i haven't been able to work out a better term.

But i am just recovering from a 3hr trip onto a very small hospital ward (2 beds) for an investigatory procedure, i explained till i was blue in the face, they were otherwise kind & helpful, & they understood a wheelchair....

they did not understand any kind of sensory difficulties.

They dimmed a light but continued crashing about and shouting, and then turning the light back on... ''oh arent you used to the light yet?'', & i explained, but they just couldnt hear it.
It was awful, just awful it made me so ill, & i was only there a short while. What Millie & co are experiencing must be a hell of epic proportion.
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Insightful point actually given elsewhere it has been noted that there were due to be experts speaking alongside said news pieces and these keep being cancelled by the news orgs whilst the patient bit remains. With maybe the family on their own trying to explain. I can't help but think that choice being made seems significant.
 
Maat said:
Excellent.
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Depends on who is writing the protocol.
JemPD said:
So Exposure reduces tolerance it does not improve it.
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MrMagoo said:
Exposure reduces the tolerance
Same with exercise. Almost like it’s a consistent issue with ME!
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This.
MrMagoo said:
I don’t have a strong expectation the request will be followed, but that it may be leverage and/or be pursued as a legal challenge.
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We are still having to play the get stuff on the (relevant) formal public record so nobody can say that they couldn't possibly have known, that it is not reasonable to expect them be informed of these things.

It's a ratchet game. Each click might be small, but it constrains them that little bit more each time, and is not reversible.
 
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Jonathan Edwards said:
I am afraid that this is all about 2024. It didn't happen in 1984. My family member is a medical professional used to wards at night from the other side. Apparently things have changed out of all recognition the last twenty years. Hospitals cannot get night staff other than those who really don't care a damn about patients. And I am talking about the most prestigious university hospital neurology ward in the country here.
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Yea "in 1984" systems were in place to train lots of nurses --- now they system trawls the world + it's a competitive international market + the UK presumably isn't paying well in comparison to others +++ --- perhaps explains the outcome!
 
Evidence of ME/CFS patient experiencing harm through insistence on following the BPS model of ME/CFS, which liaison psychiatry refer to the 'grey' area, and thereby denying standard clinical tests until a formal complaint was raised!

United Kingdom: Leeds and York Partnership - CFS centre

I wonder how this clinical incident was recorded on Datix?

Particularly in view of this statement: Joint statement in response to NICE guidance on ME/CFS (rcgp.org.uk) undated, but obviously in response to the NICE NG206 Guideline which was published on 29 October 2021.

Quotes:

"Which is a chronic, poorly understood condition and can be highly disabling and distressing. It is important that all patients with this condition are given access to the best possible services and treatments available."​

"Specialist rehabilitation medicine services and exercise medicine services regularly look after patients with ME/CFS (and also provide complex care and long-term support for very severe ME/CFS) but are not specifically recommended in the guidance. There are very few dedicated ME/CFS specialist services either in the community or hospital settings. If commissioners do not use specialist rehabilitation medicine services and exercise medicine services, these patients will lose out."​
 
Compare with this situation.

Multisystem Inflammatory Syndrome in Children (MIS-C) > Fact Sheets > Yale Medicine Covid-19

and this view of MIS publicly expressed and reported on 2 July 1999 in the Bristol Evening Post

Results for 'simon wessely' | Between 1st Jan 1950 and 31st Dec 1999 | British Newspaper Archive

"is triggered by media hype public concerns about food safety and modern stress levels Professor Simon Wessely said: “MSI is essentially a mental illness which spreads through sight or association “People see or hear of one person..."

I'll take a wild guess at what the rest of this is referring to 'hysteria'.

ETC: See correction to this post United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media
 
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Maat said:
Compare with this situation.

Multisystem Inflammatory Syndrome in Children (MIS-C) > Fact Sheets > Yale Medicine Covid-19

and this view of MIS publicly expressed and reported on 2 July 1999 in the Bristol Evening Post

Results for 'simon wessely' | Between 1st Jan 1950 and 31st Dec 1999 | British Newspaper Archive

"is triggered by media hype public concerns about food safety and modern stress levels Professor Simon Wessely said: “MSI is essentially a mental illness which spreads through sight or association “People see or hear of one person..."

I'll take a wild guess at what the rest of this is referring to 'hysteria'.
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Apologies, just skimmed a bit through recent posts and wondered about that Wessely reference...

Not sure what you searched for regarding Wessely - but got confused and thought your reference meant Wessely classified Multisystem Inflammatory Syndrome (MIS) as 'Mass Sociogenic illness' (MSI or MPI).

https://en.wikipedia.org/wiki/Mass_psychogenic_illness

Maybe a typo in the article? Or did he really say that MIS is MSI?
 
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MSEsperanza said:
Apologies, just skimmed a bit through recent posts and wondered about that Wessely reference...

Not sure what you searched for regarding Wessely - but got confused and thought your reference meant Wessely classified Multisystem Inflammatory Syndrome (MIS) as 'Mass Sociogenic illness' (MSI or MPI).

https://en.wikipedia.org/wiki/Mass_psychogenic_illness

Maybe a typo in the article? Or did he really say that MIS is MSI?
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No, that's my bad, thank you well spotted. My apologies Wessely.

I was looking for a specific article and couldn't remember what year it was, not related to MIS or MSI at all, but you can't narrow down the year on that site, so it comes up with everything. I was intrigued by what it was so looked it up to see what it was transposed and found the Yale reference. Cognitive disfunctioning showing up there.
 
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