CALL TO ARMS, FOLKS!.....well, cards, actually. One of our community is hospitalised and about to be subjected to harmful treatment against her will

Countrygirl

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CALL TO ARMS, Folks!


.......WELL TO CARDS, ACTUALLY.

Dear All,

One of our community is severely ill in hospital and the medical staff are planning to subject her to very harmful treatment. Please may I ask you to deluge her with cards, not just to lift her spirits but as a warning shot across the bows of the medical staff? The unspoken message, of course, is that a large number of us are watching what you are doing to the patient.

This patient has been severely ill for several years, and, now unable to eat, is severely frail as she has lost a massive amount of weight. She does have a feeding tube in place now but her food is not being digested. Despite being over 5ft 6 inches she is only 40kgs and lost another 4 kgs last week.

She is bedbound, and, I am informed, often paralysed with only the use of fingers. She cannot sit up. The medical staff have diagnosed her years of severe ME as just deconditioning and they have told her their aim is to make her independent. They plan to prop her up in a wheelchair and get her to propel herself increasing distances as they approve of GET as a treatment for ME patients. She has told them she doesn't agree with this but they are ignoring her objections.

On Friday, she was told they are sending in a psychiatrist to assess her (!). She does have mental competence, and psychiatrists in the past have also confirmed she does not have a mental health condition, but perhaps this consultant is doctor-shopping until he gets one to say what he wants so the way is clear for removing her objections. An eating disorder's team is also coming to assess her. An eating disorder has already been ruled-out in the past when she was in a different hospital back in 2016.

The best adult UK ME doctor has already tried to pass on his advice to the consultant and also written messages, but the medical staff have told the patient that they regard any anti-GET stance as 'quackery'. GET is the treatment of choice for ME, apparently.

There is one complicating factor in this patient's case; her mother firmly believes that GET is the best treatment for ME. (She is also a medical professional.) She has moved into a side room and is ensuring that her daughter co-operates with the planned treatment as she oversees all what is happening.
Please be very careful what you write in the card as the medical staff and her mother will read what you have written and we don't want to inflame the situation. However, not only will a card lift her spirits it will also alert the staff that the GET they are inflicting on an unwilling patient (probably with the help of the psychiatrist's input) will be witnessed a the ME community to be used in evidence when it is needed. The patient does have a mobile phone and she can use a finger to text us.

I am going to include this paper in my card for her to give to the consultant: https://www.mdpi.com/2227-9032/9/4/459

Others might like to print and include other papers from this edition that is solely on severe ME. https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue
There are other steps being taken which, if they materialise, I will tell you about another time.

If you are able to send a card here are the details:
Patient's name : EVETTE LEE
WARD 17,
STOKE MANDEVILLE HOSPITAL
MANDEVILLE ROAD,
AYLESBURY HP21 8AL
Thanks Everyone.
 
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nerd

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Is she a minor that her mother can decide for her? Or is the mother just caring for her and thinks she knows best?

I don't know the UK's legal system but there might also be the possibility to send a lawyer to her room and clarify the legal consequences, based on the diagnosis/certificate of the ME doctor. Do I remember correctly that GET is classified as harmful for ME in the UK?
 
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Aspen

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Thanks for sharing this, how truly awful, and I hope the post results in truckloads of cards and support for Evette! I’m bedbound and not able to get a card out to her any time soon, is there a way to participate over the internet?
 

Countrygirl

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Is she a minor that her mother can decide for her? Or is the mother just caring for her and thinks she knows best?

I don't know the UK's legal system but there might also be the possibility to send a lawyer to her room and clarify the legal consequences, based on the diagnosis/certificate of the ME doctor. Do I remember correctly that GET is classified as harmful for ME in the UK?
@nerd. She is in her mid-30s but Mum has very firm views as a medical professional and she is determined on rehabilitation. Evette is too sick to make her voice heard.
 

Countrygirl

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Thanks for sharing this, how truly awful, and I hope the post results in truckloads of cards and support for Evette! I’m bedbound and not able to get a card out to her any time soon, is there a way to participate over the internet?
There might be a twitter campaign if it proves to be necessary.

We are waiting for the assessment of the psych. and the Eating Disorders' Team first.
 

nerd

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I have the impression that we all are still too unorganized. If there was an index for one MD and one lawyer for every country, who accept anyone from the same country. So that these are prepared for such cases and respond immediately. It's different when the legal system also works against CFS/ME patients like in Sweden (or was it Finland?), but everything else is just a matter of preparedness and organization. These cases happen and happen again and practitioners ignore it, harm patients because they are misinformed while not taking the legal consequences seriously. Such people and researchers who wilfully ignore evidence for their own ego's interests should be pulled to court so that the public finally sees that there are consequences for this kind of abuse. Pushing a CFS/ME patient to exertion is abuse.
 

Jennifer J

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@Jennifer J, I'd be happy to send a card on your behalf. PM me if you have a personal message you'd like to add.
Thank you! :hug: Too foggy to think of a personal message right now. If you're ok with it, please write something for me. If not, please give me a few days or longer (getting vaccinated tomorrow not sure how it will go).
 

Revel

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Thank you! :hug: Too foggy to think of a personal message right now. If you're ok with it, please write something for me. If not, please give me a few days or longer (getting vaccinated tomorrow not sure how it will go).
You're very welcome, @Jennifer J! I will go ahead and send a card on your behalf later today. Hope all goes well with your vaccination.
 

Countrygirl

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Thanks @Countrygirl - I'm sending a card with some info re the 2-day CPET. I know she's too ill to do this, but hoping someone might look at it and see the evidence for PEM, and that Evette is not ill due to deconditioning (one can always hope! :sluggish: )
Thanks very much, Mary! She will appreciate that. It will also let the ward know that people are watching them.
We are now in the process of setting up two very good and experienced advocates which is good news. I will keep you posted as best as i can although I have a busy week coming up now as it is clinic week when people come from all over the UK to see Dr Weir set up shop in my dining room.
 

Countrygirl

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Just to update you, we now have Helen from the 25% Group for ME preparing to be E's advocate. She has sent her a form to fill in she she will be able to speak on her behalf. Also, we have an excellent clinical psychologist who is part of our community who is getting in touch with E. to tell her her rights. For example, E. requested that she be transferred from the consultant to another who is working as a locum there who just happens to be the consultant who runs the ME clinics from my home. Her consultant refused to allow this as he disagrees with our view of ME. Apparently, he is not permitted to block the patient's request.

Cards are beginning to arrive. Thanks everyone. Keep them coming as it does help to change the attitude of the staff.