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

SNT Gatchaman said:
I fear all these datapoints are suggesting that there is a fundamental failure of understanding across a substantial part of the health service.
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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.
 
Peter Trewhitt said:
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.
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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.
 
livinglighter said:
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.
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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.
 
Amw66 said:
Sadly seems to be a theme.
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So much for the new NICE guidelines. Completely worthless if they can just be ignored like this.

The medical profession, especially in the UK, has simply gone rogue on this matter. Become a law unto itself.

Thank you so much, Sir Simon and Friends. You must be so proud of the violent BPS monster you have spawned, nurtured, and turned loose on us.
 
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SNT Gatchaman said:
Maeve's mother replying on Twitter —




LucyLou on Twitter said (her caps, my bold) —







I fear all these datapoints are suggesting that there is a fundamental failure of understanding across a substantial part of the health service. I'm starting to think that organisations like the NZMC and GMC are going to need to make a definitive statement on this: even institute mandatory training/CME, similar to basic/intermediate resuscitation requirements, across the entire profession before we have a COVID/ME-related wave of avoidable deaths in young people.
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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/

Luminal: there is a dedicated ward, which is shared with the CF service in the southwest. Much of the inpatient work supports our nutrition service (3 nutrition nurses) as we are currently the regional referral centre. There is a weekly biologics MDT, histology and IBD radiology meetings.

There is a weekly gastrohep departmental meeting with presentations as well as the medical grand round.

We have a research unit on site so there is ample opportunity to become involved in clinical trials. There are also a great deal of ‘non commercial ‘ research opportunities – we support several research fellows
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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?
 
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A reminder of the moderator note at the start of this thread:

This thread is for social media and general media items about people in the United Kingdom with both ME/CFS and severe problems in achieving adequate nutrition. Please avoid speculating about the health or other personal aspects of people mentioned.

There is general discussion about severe problems with achieving adequate nutrition here: Severe difficulties with eating in ME/CFS. That thread is also a good place to post about any personal experience of tube feeding and other methods of medical assistance for feeding that you have had.

If you want to discuss particular issues related to children and young people (without referring to specific cases from social media), there is also this discussion thread:
FII (fabricated and induced illness), and the new ME/CFS guideline
 
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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.
 
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