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

According to Sarah Boothby on Twitter, there has been a request to "respect the #SaveMillie call for a pause [on all direct activism]".

I have asked Sarah if there is a statement from the family to this effect that I can post here as it's not entirely clear to me what is being asked specifically to be put on pause.

Edited to add: No statement directly from the family that I can find but it appears that a call, on behalf of the family, for a pause in the sending of letters directly to the hospital is being asked for in the context of the issue of multiple copies of a letter by a high profile patient and advocate being sent to the hospital or to PALS:




Edited to add:



The Real M.E.
@therealmecfs


1/2 Hi everyone, there is a lot of confusion and about sending letters to the hospital. I am currently speaking with the family about what they want but they are understandably busy caring for #Millie if I could kindly ask everyone to pause sending letters to the hospital, https://x.com/therealmecfs/s/therealmecfs/status/1763708678543200603

11:03 PM · Mar 1, 2024
 
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If you would like to send a card to @Mariararoo it would be so appreciated. Maria asks that no letters are sent to the drs as they are treating her well now.

Maria Williams
Room 8
Cuckmere Ward
Eastbourne District General hospital
Kings Drive
Eastbourne
East-Sussex
BN21 2UD
 
Mirror Exclusive:

https://www.mirror.co.uk/news/health/severe-killing-me-doctors-wont-32491644


'I can't walk, talk or eat - doctors don't believe what's wrong with me and I think I'm going to die'

Millie McAinsh says she's 'constantly hurting' and claims doctors 'won't listen' to her wishes. The distressed teen is believed to be suffering with ME, a debhilitating illness that is often misunderstood

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Millie is 'constantly hurting' and fears she could die (Image: Supplied)

By Ellie Fry Deputy Online Features Editor

  • 15:48, 4 Apr 2024
  • UPDATED 15:57, 4 APR 2024

Long article
 
Dx Revision Watch said:


Etta Loveday
@EttaLovedayME

Latest update from yesterday (4/04/24)
Petition https://change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm
Fundraiser https://justgiving.com/crowdfunding/bake-mecfs-formillie #MilliesevereME #verysevereME #pwME #saveMillie
Click to expand...

We need a legal precedent. Without that this will simply continue .
It's galling that this is still the reality.

I've had a crap week and am frustrated that our charities haven't done better . Education , awareness and empathy seems to be zilch with professionals .
All these years and noone really has a clue ..
 
Amw66 said:
We need a legal precedent. Without that this will simply continue .
It's galling that this is still the reality.

I've had a crap week and am frustrated that our charities haven't done better . Education , awareness and empathy seems to be zilch with professionals .
All these years and noone really has a clue ..
Click to expand...

We do! They're continually being treated as if they have an eating disorder which is a mental health illness. They may have already sought out legal advice.

Just in case they haven't, they need to get legal advice. Here are some tips:

Cost is the first issue, but Legal Aid is available for patients for representation at mental health tribunals. They might be eligible for half an hour's free advice to see if they can find someone who'll available to help.

To make the most of that time, they need examples to show the solicitor of the deaths which have occurred so they can see what they're up against. These are are two short read and listen media items, which won't take up much time in a 30 min appointment and he can see on their phones.

LINKS

ME is often dismissed – but sufferers like Emily Collingridge are dying | Scott Jordan Harris | The Guardian Worth checking the petition signatories, if that's possible or easy, as I know that Emily's mum signed a similar petition for another lass in the last six months, and she left a comment about her daughter's death. If she saw this petition she's likely signed Millie's too.

The Channel 4 recent news item with Merryn and Maeve's parents being interviewed. This is to show the lawyer that Millie's fears and not unfounded.
M.E.: Lives devastated - and sufferers told it's made up (youtube.com)

Obviously that's as well as the work that MEA and Dr William Weir

Link to NICE Guideline Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

A specialist lawyer will have experience of dealing with doctor's position on eating disorders so they'll know how to approach that. It's just the ME aspect they'll possibly need a bit of background on.

Hope this little bit of info helps, and thinking of them all.
 
Twitter update said:
NJ tube put in on Tuesday 26/03/24 radiologically, however after only a few hours Millie was sick and the tube came out. It's not being revisited because of the radiation involved in placing it in this way.
Click to expand...

Yes this happens and you just put it back in: repeatedly if needed; or move to a long-term gastrojejunostomy. If the clinicians, or indeed the radiologists, are claiming radiation dose is too risky, they need to think again or build experience by putting a few more in. I've positioned hundreds of these and you can use very low dose radiation. It's entirely possible (if the tube "behaves itself") to position an NJT with total radiation dose at the threshold of recordability.

And let's get real. If the patient can't eat and dies of malnutrition, what possible risk did the radiation represent? (Therapeutic high dose radiation has a potential secondary cancer-latency of 10 years+) By the same logic she also shouldn't be treated with a simple nasogastric tube, because of the risk she might improve or recover, leave hospital, go on holiday with her family and take an international flight that exposes her to a higher level of cosmic radiation than the medical imaging for NJT placements.

This whole area of NHS feeding in ME and the ideas driving it needs an external review. It's just completely unsafe.
 
@SNT Gatchaman

As an aside, what is the current view on the number* of CAT scans for the ionising radiation dose to start becoming a significant lifetime risk?

*I realise that this number depends on more than the literal number of individual scans, and includes stuff like the particular machine being used (with newer ones using less radiation), the part of the body being scanned (because of different levels of exposure being required), age of patient, etc.
 
@Sean hard to answer for an individual, but the principles are 1) As Low As Reasonably Achievable (ALARA) for both number and radiation dose profile and 2) if it's needed it's needed.

Additionally, modern scanners often use much less radiation dose than 20 years ago. The later you have the CTs in life the better — we're pretty careful with youngsters.

One of the problems is the lag so that often by the time a cancer occurs people are in the age range where cancers occur. Did this one happen because of cumulative prior medical radiation exposure? We can't really answer so we just go with the precautionary principle. We have some patients who've had a frightening number (as in 100s) of CT scans but they were necessary and without them life would have been lost. Eg 15 years later and they're still doing perfectly fine now living a completely normal healthy active life.

Personally I and I think most radiologists would be pretty relaxed about having had say 5-8 CT scans in a lifetime (for eg whole chest or abdo). The odd limb CT for fracture management is probably irrelevant. Radiation exposure from medical imaging is increasing at a population level, so anytime a non-ionising radiation technique (US/MR) is available, that's preferable. But when you look at hospital referrals for imaging studies, typically people have already had a few CT scans.

Thinking of risks overall though, I have to wonder what the cancer or cardiovascular or neurodegenerative risk of common (or novel!) viral infections is compared to radiation. It's possible that cumulative infection exposure is worse for us than cumulative radiation exposure.
 
Update on Karen Gordon



Petition update
Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.
More stress and a plea to St Marks
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Michael Gordon
Polegate, ENG, United Kingdom
UmNLVubvdvWXUig-800x450-noPad.jpg

6 Apr 2024
Hello Everyone,

We have been told that Karen might be given a deadline for when she has to give a decision about whether she agrees to go to St Marks Intestinal Rehabilitation Unit. Karen was told again that if she does not agree to go to St Marks then East Sussex Healthcare NHS Trust (ESHT) might take legal action, might say that she has to have another capacity assessment and say that her case may go to the Court of Protection. Or ESHT might send Karen home without IV feeding which she could not survive without. Karen has already been formally assessed as having capacity twice in about the last 18 months.

Karen is extremely stressed and exhausted.

We submitted Karen’s first set of questions for St Marks near the end of February but still have not been given any of the answers yet. We have also submitted Karen’s second set of questions.

Karen is worried that she will not be given enough time for someone with very severe ME and bearing in mind Karen’s ME dips (flare ups) and other things that are happening at the hospital to have the answers read to her, consider the information and make an informed decision.

Karen is still asking for another phone call with St Marks after she has been given the answers to her written questions and had them read to her. Karen has always said that she would need more than one phone call with St Marks.

The 100 mile journey to St Marks and being in the unit would make Karen much more unwell and cause relapses in the ME. It would cause a lot of unnecessary suffering which could be avoided. It is Karen who would have to suffer the worsening of her symptoms. Her quality of life would be made worse. A relapse could be permanent. It could cause a major relapse which could involve paralysis, being unable to speak, for example. It could be life threatening.

The unit has a strong psychiatric approach.

We have sent a letter by email to St Marks asking them for remote setting up of home PN for Karen while she is in the hospital she is in now – Conquest hospital.

Karen’s cat Sweety was seen by the vet recently. He has lost more weight again. The vet said Sweety is on palliative care. Sweety is very poorly and we are all very upset – even more so as Karen and Heather are not with him at home giving him love and support.

During the phone call on the 14th of February, the St Marks consultant said that St Marks do set up home PN remotely in exceptional circumstances. Karen having very severe M.E. is an exceptional circumstance. Another exceptional circumstance is Karen’s urgent need to get home to be with her very ill cat.

Karen is worried that if the team at the unit ignore the reasons for giving her remote setting up of home PN that they would not accept the things that she could not do because of the very severe M.E. if she was at the unit. Karen is worried that the team have unrealistic expectations of what she would be able to do while at the unit and what would be achieved.

Over exertion and physical and emotional stress are harmful for people with M.E.

If St Marks give Karen the option of remote setting up of home PN it would immediately relieve her severe stress and worry.

We do not think that it is fair or right if Karen is not given the option of remote setting up of home PN when there are so many valid problems and risks for her of going to and being at St Marks and knowing that there will be serious consequences for Karen if she does not get home PN as she needs it to survive.

Thank you so much to everyone who has signed and shared the petition. Thanks also to those of you who have chipped in to promote the petition. It is much appreciated by us.

Please continue to tell people about this petition and continue to share it on-line.

Thanks again for your support.

Best wishes to you all.
Karen, Heather & Michael

118 people signed this week

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Forced treatments, sectionings, deaths, assisted suicides: the reality of #MEcfs in the UK in just THREE MONTHS of 2024.

People aren't going to like what I've written here. But it needs saying. I would urge everyone involved with #BringMillieHome to read:
 
While I share Steve Topple's anger, I don't think it's entirely fair to blame the lack of proper care for people with severe ME/CFS on 'the ME community' and its failure to protest loudly enough. For one thing, there is no such thing as the ME community, just lots of sick people trying to get through the day.
 
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