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

Petition update (4 March 2024):

https://www.change.org/p/save-milli...mary-must-stop-causing-millie-harm/u/32398665

 

https://twitter.com/user/status/1765484650334417027


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

 

https://www.thecanary.co/uk/news/2024/03/08/millie-severe-me-update/

Severe ME patient Millie’s sister tells the Canary the situation is ‘heartbreaking’
She is still 'declining daily'

by Steve Topple

8 March 2024

 

Update 2024-03-10 on Millie

 

‘A Rollercoaster Of Awful Emotions’: Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients
Millie McAinsh’s family sought help when the ME sufferer could no longer eat – only for her to to be sectioned

https://bylinetimes.com/2024/03/19/...o-prevent-deaths-of-severely-ill-me-patients/

 

A well written article.

 

Update on Millie:

https://twitter.com/user/status/1775808652579848500



Update: The last week and a half have been extremely stressful and awful for Millie and the family. Thank you everyone for being supportive and waiting for updates

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 #SevereME #pwME #saveMillie

 

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




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

 

https://twitter.com/user/status/1776152572354494639


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

 

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 ..

 

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.

 

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.

 

@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

Michael Gordon
Polegate, ENG, United Kingdom

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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https://twitter.com/user/status/1777263067992047905


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:

 

Re: Steve Topple piece

If we protest or complain this often has a negative effect on people's perceptions of "the community" i.e. ME patients as a whole. It's unclear that any protests would have a positive effect either on the medical profession or the general public due to the false narratives, beliefs, and lies that are already out there about us. Patients protesting and complaining would just be seen by many as further evidence of how "difficult" "these people" are, etc.

To be clear, I do think there should be protests and actions - they just need to be thought through correctly in terms of what they are hoping to achieve and who the intended audience is. But if there had been a lot of actions in the past when a lot of these narratives were more easily accepted I'm sure they would have just strengthened the position of those who compared us to terrorists and animal rights activists. We are at a different moment now in being able to reach people, as these kinds of narratives are harder to maintain and control mainly due to changes in culture and social media's ability to directly reach people with no or little intermediary.

In any case, most of us are completely unable to go and protest. Perhaps those more mildly affected could be criticized for appearing to "turn away" from a group of people they may or may not know exists. Often I have noticed that they also believe that "these people" (i.e. longer term patients who are more severely affected) are miserable people who don't really want to get better and have a poor attitude. I know that some people are told this by practitioners and by other patients who sometimes identify themselves as "ex ME" sufferers. It's a confusing landscape for ME patients and there are many factors that cause a potential lack of solidarity between the differently affected patients - but in general they are all the victims of the nonsense that has been put out there about us by authorities and "researchers" over the years. We are all just sick people trying to live life and potentially get well.

We are also not able to go out there and risk being arrested or detained as a result of any actions. It is not like what happened with ACTUP and so on. I do believe we need to build solidarity with eachother, other disability groups, and non-disabled allies. It's the only way. Blaming "the community" is a view which lacks context and a deep understanding of both the effects of the disease on patients physically and the power dynamics that got us into this situation - the epistemic injustice, the attitude from both authorities and the general public - in the first place. This was historically and is still something that is being actively carried out to basically lock us out of "the system" and away from sympathy, medical knowledge of our illness and condition, at others' convenience and to further their own agendas, and so on, and fighting that requires a different approach.

I appreciate the coverage of the predicament ME patients find themselves in, but it is disappointing to read more patient-blaming in this story in which a lot of extremely sick and disabled people have been blamed for their own ill-health and predicament by most people they come into contact with. I hope more can come to understand the context that we were just supposed to go away; it's the same dynamics you see now in the attempt to bury Long Covid, so people have the chance to see it happening on a mass scale in real time.

Thanks for reading. I hope anyone affected by these terrible stories of mistreatment by authorities is okay. It's awful and terrifying to hear about and witness. xo