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

No. It was about research and is winding up.

 

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.

 

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.

 

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.

 

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.

 

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/

 

Per capita ?

 

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.

 

No, I’m housebound.

 

Sorry, I didn't mean that, I meant the general content of the MEA statement.

 

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!

 

In this post on X by Pierre, Carla's father, he mentions a specialist inpatient unit for ME in Leeds.
https://twitter.com/user/status/1783215961102839830


It's not this one, is it? https://www.leedsandyorkpft.nhs.uk/...npatient-centre-psychological-medicine-nicpm/

If so, do they really have the facilities required for those with severe ME?

 

I think that is it and the ME service stopped accepting patients from outside of the Leeds area as they have too many patients.

 

If it is the same one, then they don't seem to be set up for patients as severe as Carla or Millie, or am I missing something?

The thread for this clinic is here: https://www.s4me.info/threads/united-kingdom-leeds-and-york-partnership-cfs-centre.13916/

 

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

 

There are no severe/very severe beds in the NHS

 

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?

 

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.