MrMagoo
Senior Member (Voting Rights)
PEG-J was already in place and not delivering enough.
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Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings
- Thread starter Dolphin
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rvallee
Senior Member (Voting Rights)
For severe patients I can't see this working out. They are already do so little activity that deviations wouldn't be noticeable. For mild patients you could observe going down from 3-4K steps per day to something like 500. This would be noticeable. But actimetry wouldn't capture much data for people who are largely immobile. Karen likely takes 0 steps per day.
But even if so, how would it be good evidence? I can't see any clinician who has been fed the behavioral version looking at this data and thinking anything other than the usual "chose to be less active / afraid to do more / whatever". The only useful source of information is the patients, which medicine is incapable of using as good information. So this is something about which there can't be evidence a clinician would accept unless the clinician accepts the patient's perception as valid. About an illness redefined as a disorder of invalid perception where evidence against the model actually counts for it.
This is literally the basis of Catch-22: your perception will be used against you, whichever way it goes. The problem isn't data, it's humans armed with bad pop psychology and more sophistry than in an intro to logical fallacies class.
Update today via change org
https://www.change.org/p/save-karen...nd-dehydration-due-to-nhs-failings/u/33008237
Everyone
It was good to have Karen’s case publicised in articles in ‘The Times’ newspaper and on-line. Thank you to Fiona Hamilton, chief reporter for ‘The Times’ who wrote the articles and thank you to ‘The Times’ for publishing them.
[...]
Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to everyone who has chipped in to promote the petition. It is very generous of you and it makes a big difference. Thank you for your supportive comments. It is all much appreciated by us.
Please keep sharing this petition and telling people about Karen’s situation.
Thank you to everyone for your support.
Best wishes to you all.
Karen, Heather & Michael
Support now
Take the next step!
https://www.change.org/p/save-karen...nd-dehydration-due-to-nhs-failings/u/33008237
Everyone
It was good to have Karen’s case publicised in articles in ‘The Times’ newspaper and on-line. Thank you to Fiona Hamilton, chief reporter for ‘The Times’ who wrote the articles and thank you to ‘The Times’ for publishing them.
[...]
Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to everyone who has chipped in to promote the petition. It is very generous of you and it makes a big difference. Thank you for your supportive comments. It is all much appreciated by us.
Please keep sharing this petition and telling people about Karen’s situation.
Thank you to everyone for your support.
Best wishes to you all.
Karen, Heather & Michael
Support now
Take the next step!
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Sasha
Senior Member (Voting Rights)
Just saw an interview with Karen's mum, the Chair of BACME, and Chris Ponting on Sky News about this. The interviewer was very good but obviously wasn't in a position to understand what BACME really are.
I was horrified that Karen has been stuck in hospital for a year because she's too ill to travel 100 miles to be assessed for home feeding. I wondered why no one raised the question of why the doctors couldn't travel that 100 miles instead.
@Jonathan Edwards, don't doctors ever travel to patients who are too ill to be moved? Or is there no concept in the NHS of 'too ill to be moved'?
I was horrified that Karen has been stuck in hospital for a year because she's too ill to travel 100 miles to be assessed for home feeding. I wondered why no one raised the question of why the doctors couldn't travel that 100 miles instead.
@Jonathan Edwards, don't doctors ever travel to patients who are too ill to be moved? Or is there no concept in the NHS of 'too ill to be moved'?
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Jonathan Edwards
Senior Member (Voting Rights)
I don't understand what is going on here.
Very few people are too ill to be moved unless they are on a ventilator and unstable.
There may also be no point in a doctor just visiting for an hour to assess someone - the assessment may need to be over a period of days.
The situation certainly seems to be getting nowhere.
Sasha
Senior Member (Voting Rights)
I can easily imagine a severely ill PwME being made permanently worse by the exhaustion involved in travelling, even on a trolley (I think we've discussed this before). Karen's mum said that Karen was exhausted just by the stimulation of noise and disturbance in the hospital, and long-distance ambulance travel would be brutal. I've had long-term setbacks from over-exerting myself, and I'm nothing like as ill as Karen.
It would be interesting to know.
20 minutes from 20:18 - 39:58
@Chris Ponting was excellent as always. I haven't seen Anna Gregorowski before, but I am aware of some of the long history of BACME as discussed on S4ME. At face value what she said seemed reasonable.
I was concerned with the response from the local hospital (East Sussex Healthcare Trust) — they responded with "We have been working with a specialist NHS centre that has this expertise, as a national leader in their field, to arrange a course of treatment that we believe can improve Karen's condition."
Now that might simply refer to home intravenous nutrition to prevent death from starvation/dehydration. If so why is it a "course" which implies it would be intentionally time-limited? But there is also the possibility that this course of treatment is something else entirely — and based around stimulus challenge under a psychological paradigm.
@Chris Ponting was excellent as always. I haven't seen Anna Gregorowski before, but I am aware of some of the long history of BACME as discussed on S4ME. At face value what she said seemed reasonable.
I was concerned with the response from the local hospital (East Sussex Healthcare Trust) — they responded with "We have been working with a specialist NHS centre that has this expertise, as a national leader in their field, to arrange a course of treatment that we believe can improve Karen's condition."
Now that might simply refer to home intravenous nutrition to prevent death from starvation/dehydration. If so why is it a "course" which implies it would be intentionally time-limited? But there is also the possibility that this course of treatment is something else entirely — and based around stimulus challenge under a psychological paradigm.
If Royal Devon and Exeter now have a management plan for nutritional support , why is this made so difficult ( rhetorical )
Beth
Established Member
Petition update 20th April 2025 https://www.change.org/p/save-karen...nd-dehydration-due-to-nhs-failings/u/33449974
Utsikt
Senior Member (Voting Rights)
What are the issues at play here?
I don’t know anything about TPN, but google tells me that she needs to have a catheter inserted and that you need an x-ray to check that it’s where it’s supposed to be. Is the current hospital unable to do this procedure?
Google also tells me that many patients use TPN at home. But do you have to replace the catheter at some point?
I also found this about mobile x-ray machines that can be used at home. Would those be an option if it’s possible to do the procedure at home?
https://www.bbc.com/news/business-67871981
I don’t know anything about TPN, but google tells me that she needs to have a catheter inserted and that you need an x-ray to check that it’s where it’s supposed to be. Is the current hospital unable to do this procedure?
Google also tells me that many patients use TPN at home. But do you have to replace the catheter at some point?
I also found this about mobile x-ray machines that can be used at home. Would those be an option if it’s possible to do the procedure at home?
https://www.bbc.com/news/business-67871981
Yann04
Senior Member (Voting Rights)
I know Whitney Dafoe managed to get TPN without the hospital trip.
I’d imagine the standard procedure is to have it replaced at hospitals?
But I think it’s definitely possible to do at home — its just dependant on the NHS willing to spend resources that way.
I also think you could use an ultrasound. No need for xray. But yeah not all homecare services have portable ultrasound.
Utsikt
Senior Member (Voting Rights)
I understand that things doesn’t work this way, but surely it would be less expensive to get a team to do it for her at home than to have her permanently at a hospital?
I know it’s less expensive to transport her to the other hospital, but it’s far more expensive to do nothing (i.e. stay where she is now).
Jonathan Edwards
Senior Member (Voting Rights)
I find it very hard to understand what the options are and how decisions are being made on them.
Jonathan Edwards
Senior Member (Voting Rights)
As I understand it she has a TPN line in, so there is no heed to 'do it at home' but the information we are getting may be garbled.
BrightCandle
Senior Member (Voting Rights)
What is happening in Karen's case is hard to explain with normal NHS available procedures, capabilities within a hospital and home care. The reasoning for what is happening seems very opaque to the Gorden's and doesn't seem to meet what we would consider care that is normally available from the NHS, care that is available for those who don't have ME/CFS. Its got similar hallmarks of withholding of care to the Maeve case to me, all be it not quite so fatally yet.
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If you want to discuss feeding issues please go to this thread: Severe difficulties with eating in ME/CFS
This thread is now fully moderated. This means your post will be checked by a moderator before appearing on the thread.
Please be mindful of this rule:
Please confine your comments on this thread to updating information, general expressions of concern and good wishes.
If information about an individual's health and medical care is in the public media you may copy short excerpts. Any comments should avoid speculation.
If information about an individual is on social media, including petitions, please only provide links, not copies or screenshots.
If you want to discuss feeding issues please go to this thread: Severe difficulties with eating in ME/CFS
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In the UK there are only a handful of hospitals that can arrange and provide home TPN, which is then delivered by private TPN companies to your home. Karen currently isn’t in one of these special hospitals, she is in a normal hospital receiving TPN as an inpatient.
Normal procedure is for people to transfer from their local hospitals, to one of these special hospitals, where by they are assessed and feeds and TPN maybe changed. If they need a line or a different type of line that’s also done. Lots of people who go there aren’t stable on TPN yet. Training to go home on TPN is done and your given to one of these private companies who takes you on as a patient.
Karen’s family are saying she is stable on TPN in hospital. Instead of going to one of these centres which will make her ME worse, please could they just arrange the private TPN company to provide it at home and the training and then they can go directly home.
The special hospital is saying no, you have to come here first.
Unfortunately her updates are rather confusing but this is how it works.
Mods, I'm not revealing any private information in this post about Karen. Just clarifying for confused people how it works with the different hospitals and what the petition is about, before it got distracted but lots of other random updates.
Normal procedure is for people to transfer from their local hospitals, to one of these special hospitals, where by they are assessed and feeds and TPN maybe changed. If they need a line or a different type of line that’s also done. Lots of people who go there aren’t stable on TPN yet. Training to go home on TPN is done and your given to one of these private companies who takes you on as a patient.
Karen’s family are saying she is stable on TPN in hospital. Instead of going to one of these centres which will make her ME worse, please could they just arrange the private TPN company to provide it at home and the training and then they can go directly home.
The special hospital is saying no, you have to come here first.
Unfortunately her updates are rather confusing but this is how it works.
Mods, I'm not revealing any private information in this post about Karen. Just clarifying for confused people how it works with the different hospitals and what the petition is about, before it got distracted but lots of other random updates.
The procedure is done in interventional radiology or a theatre depending on whether you’re having sedation or a GA. PICC lines can be done bedside and xrayed. Most have a Hickman for it unless they can’t get one in.
Yes, I’ve known children as young as 9 on NG tubes for severe ME. A friend was forced into hospital via child protection when young and NG fed. There’s lots of children sadly who have needed NG feeding due to ME over the years.