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.
.......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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