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

I could ask my MP to e.g. ask a (Westminster) Parliamentary question - but before even attempting that I'd need to be convinced that it would be worthwhile - thoughts?

 

What is the treatment for SSD, is it to ignore the “believed” distress and expose the patient to stressors? Because that’s what they’re doing opening the curtains.

 

I'm curious as to why these cases mostly only happen in England. I think there was one in Wales wasn't there? The health service is devolved in Wales, so they don't share the same health regulations. Mostly similar but they are not bound to follow those which England create.

None in Scotland or Northern Ireland, that I've seen reports of anyway.

What England & Wales do share is the same legal jurisdiction... and of course I suppose the healthcare professionsals are all regulated by the BMA and GMC guidance. Consent?

 

Of course most UK people do live in England. And I gather there are several cases in NI in fact.
There have been cases in Scotland too. I doubt there is much in it.

 

Not really, if you’re just put on a general ward. Which most are from the start - there are often skylights and strip lights and Wards are busy with TVs, they aren’t going to tell the whole ward not to speak and the staff on wards can be extremely loud and rambunctious too. Feeding below 45% goes against all the teaching nurses & drs are given and They, as we have seen will be Reluctant unless fully understanding the seriousness of not doing so.

 

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.

 

https://twitter.com/user/status/1782348192111034560


Etta Loveday
@EttaLovedayME
1h

Update about Millie - 22/04/24 Petition https://change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm… #MillieSevereME #SevereME #pwME #saveMillie #BringMillieHome #DontLetMEDie #ExposeMENow

 

Wondering what a possible question would look like -
"Secretary of State/Minister may be aware of --- Will the SOS/Minister ensure that there is an urgent review of NHS practices re provision of adequate nutrition to people with ME/CFS who are hospitalised and that this is provided in a way that addresses issues like light & noise sensitivity?

I think any [(Westminster) Parliamentary] question would need to align with the much more significant work @Jonathan Edwards & others are doing - I'm also not sure that it would achieve much!

 

Yes, a member of my family was on a neurology ward for several months following a stroke. The 24hr noise was almost intolerable - and included nurses gossiping at 4am about their boyfriends in loud voices at the observation station. If you have leukaemia and have to be in isolation facilities are provided, but not for anyone else much.

The 45° angle business is the one thing I find hardest to get clear information on. While liquid is actually being poured down the tube I think there may be a good argument for an angle. It may be that if the person has normal reflexes and gastric function lying flat issue but the whole point about very severe ME/CFS is that we understand so little about it that it is difficult to assume that either of these will be guaranteed to be normal.

We need some expert centres where detailed physiological analysis is done so that we have some data.

 

If you make a request immediately then you can be considered for a side room when one becomes available.As I said, it’s not asking for something unreasonable like a private ward just for one person!

We know that in this case the Psychiatrist is coming into the room opening the curtains on purpose. He shouldn’t be doing that. Whether on a ward or side-room.

It’s reasonable that people minimise noise and light around you where they can do so easily

The request for the adjustment is not based on any diagnosis, just on the ongoing symptom, so Pooh-poohing the MECFS diagnosis isn’t a “get out”

 

A question was asked in Parliament on 12 April 24
https://meassociation.org.uk/2024/0...ion-people-with-me-cfs-at-risk-of-starvation/

apparently a protocol is being written

 

Excellent.

 

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.

 

Is there an opportunity to push for this through the group you sit on (which deals with research priorities?)?

 

-Exposure reduces the tolerance
Same with exercise. Almost like it’s a consistent issue with ME!

I don’t think in 2024 it’s an excuse that a HCP doesn’t understand sensory difficulties, it happens not infrequently. Would they charge into the room of an autistic person, booming MORNING and open the curtains, if they’d been repeatedly asked not to?

 

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.

 

Photosensitive epilepsy. Photosensitive epilepsy - Epilepsy Action

Would they go to a patient's bedside and start flashing lights?

News reports stated that Millie had a seizure shortly after they began their aversion therapy approach regarding light exposure.

 

Does it say that?
I am trying to put together a model for a protocol but I am not aware that anyone else is actually doing an official protocol and that did not seem to be the case when I had an email exchange with most of the relevant people.

But yes, I think several people are trying to work out how to do something.

 

in the blurb

 

No. It was about research and is winding up.