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

I'd feel confident saying this is certain. Over the last 20yrs I have seen dozens of doctors for things other than ME, i never met a single one who didnt strongly believe 'CF' was feeling TATT/a mental health issue. None of them would ever have believed it could lead to a person being bedbound (other than of their own volition), let alone struggle to intake nutrition.

 

Awful for those involved and their families and health care shouldn’t require social media campaigns and TV programmes, however at least issues around maintaining adequate nutrition in very severe ME are getting a wider discussion.

 

I’m glad the hospital changed its stance and provided the recommended tube feeding. This recent case has shown me it will take social media campaigns and TV programmes to provide public scrutiny into how pwME, especially the severe, are treated by the health and social care system.

When NICE said ‘it will take time’ to implement the guideline, the organisation seemed to have missed that people with severe ME do not have ‘time’. Several factors, including medical neglect, mean they are likely to enter hospitals in critical condition.

 

This

 

I'm relieved they finally relented. You shouldn't need to beg doctors, consult outside specialists, post angry Twitter threads, create a change.org petition, and get the attention of national media in order to get the healthcare you need.

 

https://twitter.com/user/status/1633457166848802817

 

https://twitter.com/user/status/1633517026470764562

 

https://twitter.com/user/status/1633592465767759872

 

Sadly seems to be a theme.
https://twitter.com/user/status/1633386103636934659

 

https://twitter.com/user/status/1633449376675758080

 

Is their any other disease where the patients with the severest forms are neg1ected by the hea1th care system and actua11y abused? The on1y ones I can think of are menta1 i11nesses and autism.

 

Interesting stuff, and good points - I've been as a layperson thinking that the only solution in the interim term is protocols that ensure safety, rather than necessarily the 'getting everyone on board everywhere' long-term need in the short-term there needs to be named responsibility for making sure that someone in a hospital does do what is needed (and that they read the needs re: noise/exertion impact).

Then, just because I saw someone elsewhere to here mentioning Bristol I was having a squizz and found the following: https://medicine.severndeanery.nhs....enterology/hospitals/bristol-royal-infirmary/

I really have no expertise or familiarity with this area or the ins and outs of what hospitals have what depts and how they interact but reading your example - which seemed to be from CF (for clarity, assuming Cystic Fibrosis?) and that this in the first line notes it was some sort of dedicated ward regionally. Is it things like this that need to be asked to develop some expertise regionally that could work for ME/CFS where it overlaps with more acute needs that would involve various depts? at least on the basis of having a few 'centres of expertise' that could then roll out such knowledge ?

Agree that we have a bit of an issue where those most severely ill were perhaps least well planned for still (partly because there was such a long way to go for them, but also I suspect because even on the guideline committee those who were 'from' BPS-type clinics would have had no experience to speak of for those who were severe or worse. As for the last decade such clinics didn't see anyone who wasn't mild-moderate so have no knowledge of either that severity and its needs or what the illness as a spectrum, when it gets worse, actually is - in as far as where it can end up if v severe).

And that I sense an issue where ME/CFS guidelines are at best perceived as 'something for ME/CFS workers' rather than now it really needing to be a guideline just as much for those outside clinics, for as long as the NHS isn't providing such specialist services locally in biomed clinics that can do all this stuff, and that the stigma created by old guidelines and cultures causes issues?

 

https://twitter.com/user/status/1637947621607198723

 

https://twitter.com/user/status/1638651008686366720

 

I'mhttps://twitter.com/user/status/1638905514628366337


Where are charities and press. This is horrific

 

The head of safeguarding at a local authority is easily identifiable. One of the many reasons why advocacy through Twitter is a bad idea for individual cases.

Edit: for context, this post referenced a tweet which disappeared from this thread, but is now here.

 

https://twitter.com/user/status/1650467545185492992