Invest in ME Research
Christmas Fund Appeal Advent Calendar
Listen to the Patients
Stories of ME.
Nowadays patient involvement in research and healthcare projects seems to be a mandatory requirement.
Patients and their opinion seem to be of value.
So why is listening to patients now demanded yet seemingly missing from the reality of patients' everyday experiences?
'
It is always surprising that the old adage “listen to the patients” is something often ignored.
Invest in ME Research has received many stories over the years of people enduring ME, and people who have experienced the lack of knowledge about the disease, and
exhibited a high degree of ignorance.
Some long stories, some short.
All of the stories reaffirmed the incomprehensibility of retaining a status quo in terms of research, treatments and services regarding ME.
We pointed this out
in Listen to the Patients https://www.investinme.org/IiMER-Newslet-1809-01.shtml
where it seems to go wrong, even in a country which has everything required for providing an example of how to perform research into ME,
how to develop services for people with ME and how to treat ME as the organic illness that it is.
It is sobering to read some of the stories received from patients, and carers – even just clips.
The story of the family of Rose is -
"The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME
could be a cloak for PRS (Pervasive Refusal Syndrome)."
from 'An ME Carer’s View
Here we have some, just a few of the many stories written or told or emailed over the years –
https://www.investinme.org/MEstorygallery1.shtml
Some examples –
Dr D.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS."
Jim
"And because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.”
R
""you have ME, I am not going to waste time doing tests on you" "
C
"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health,
but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. "
Cindy
“Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness."
Shelley
" I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. "
Sandra
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal.
She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because
I was straining the section as they had to cover for my absence"
Clare
"At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!"
Julie
" I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description "
Rose
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities.
This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
There are longer stories too - see Further Reading below.
So for Day 5 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.
If you believe in COVID-19 and its effects then
listen to patients and believe in ME.
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
It is always surprising that the old adage “listen to the patients” is something often ignored.
Invest in ME Research has received many stories over the years of people enduring ME, and people who have experienced the lack of knowledge about the disease, and
exhibited a high degree of ignorance.
Some long stories, some short.
All of the stories reaffirmed the incomprehensibility of retaining a status quo in terms of research, treatments and services regarding ME.
We pointed this out
in Listen to the Patients https://www.investinme.org/IiMER-Newslet-1809-01.shtml
where it seems to go wrong, even in a country which has everything required for providing an example of how to perform research into ME,
how to develop services for people with ME and how to treat ME as the organic illness that it is.
It is sobering to read some of the stories received from patients, and carers – even just clips.
The story of the family of Rose is -
"The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME
could be a cloak for PRS (Pervasive Refusal Syndrome)."
from 'An ME Carer’s View
Here we have some, just a few of the many stories written or told or emailed over the years –
https://www.investinme.org/MEstorygallery1.shtml
Some examples –
Dr D.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS."
Jim
"And because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.”
R
""you have ME, I am not going to waste time doing tests on you" "
C
"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health,
but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. "
Cindy
“Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness."
Shelley
" I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. "
Sandra
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal.
She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because
I was straining the section as they had to cover for my absence"
Clare
"At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!"
Julie
" I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description "
Rose
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities.
This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
There are longer stories too - see Further Reading below.
So for Day 5 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.
If you believe in COVID-19 and its effects then
listen to patients and believe in ME.
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
Some long stories, some short.
All of the stories reaffirmed the incomprehensibility of retaining a status quo in terms of research, treatments and services regarding ME.
We pointed this out
in Listen to the Patients https://www.investinme.org/IiMER-Newslet-1809-01.shtml
where it seems to go wrong, even in a country which has everything required for providing an example of how to perform research into ME,
how to develop services for people with ME and how to treat ME as the organic illness that it is.
It is sobering to read some of the stories received from patients, and carers – even just clips.
The story of the family of Rose is -
"The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME
could be a cloak for PRS (Pervasive Refusal Syndrome)."
from 'An ME Carer’s View
Here we have some, just a few of the many stories written or told or emailed over the years –
https://www.investinme.org/MEstorygallery1.shtml
Some examples –
Dr D.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS."
Jim
"And because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.”
R
""you have ME, I am not going to waste time doing tests on you" "
C
"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health,
but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. "
Cindy
“Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness."
Shelley
" I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. "
Sandra
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal.
She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because
I was straining the section as they had to cover for my absence"
Clare
"At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!"
Julie
" I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description "
Rose
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities.
This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
There are longer stories too - see Further Reading below.
So for Day 5 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.
If you believe in COVID-19 and its effects then
listen to patients and believe in ME.
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
We pointed this out
in Listen to the Patients https://www.investinme.org/IiMER-Newslet-1809-01.shtml
where it seems to go wrong, even in a country which has everything required for providing an example of how to perform research into ME,
how to develop services for people with ME and how to treat ME as the organic illness that it is.
It is sobering to read some of the stories received from patients, and carers – even just clips.
The story of the family of Rose is -
"The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME
could be a cloak for PRS (Pervasive Refusal Syndrome)."
from 'An ME Carer’s View
Here we have some, just a few of the many stories written or told or emailed over the years –
https://www.investinme.org/MEstorygallery1.shtml
Some examples –
Dr D.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS."
Jim
"And because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.”
R
""you have ME, I am not going to waste time doing tests on you" "
C
"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health,
but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. "
Cindy
“Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness."
Shelley
" I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. "
Sandra
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal.
She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because
I was straining the section as they had to cover for my absence"
Clare
"At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!"
Julie
" I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description "
Rose
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities.
This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
There are longer stories too - see Further Reading below.
So for Day 5 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.
If you believe in COVID-19 and its effects then
listen to patients and believe in ME.
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
The story of the family of Rose is -
"The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME
could be a cloak for PRS (Pervasive Refusal Syndrome)."
from 'An ME Carer’s View
Here we have some, just a few of the many stories written or told or emailed over the years –
https://www.investinme.org/MEstorygallery1.shtml
Some examples –
Dr D.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS."
Jim
"And because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.”
R
""you have ME, I am not going to waste time doing tests on you" "
C
"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health,
but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. "
Cindy
“Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness."
Shelley
" I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. "
Sandra
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal.
She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because
I was straining the section as they had to cover for my absence"
Clare
"At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!"
Julie
" I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description "
Rose
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities.
This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
There are longer stories too - see Further Reading below.
So for Day 5 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.
If you believe in COVID-19 and its effects then
listen to patients and believe in ME.
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
"The consultant said that some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME could be a cloak for PRS (Pervasive Refusal Syndrome)."
https://www.investinme.org/MEstorygallery1.shtml
Some examples –
Dr D.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS."
Jim
"And because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.”
R
""you have ME, I am not going to waste time doing tests on you" "
C
"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health,
but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. "
Cindy
“Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness."
Shelley
" I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. "
Sandra
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal.
She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because
I was straining the section as they had to cover for my absence"
Clare
"At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!"
Julie
" I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description "
Rose
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities.
This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
There are longer stories too - see Further Reading below.
So for Day 5 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.
If you believe in COVID-19 and its effects then
listen to patients and believe in ME.
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
Dr D.
"I saw 2 GP's in the summer holidays. They were cold to the point of hostile when I had the temerity to suggest that I had ME/CFS."
Jim
"And because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause.”
R
""you have ME, I am not going to waste time doing tests on you" "
C
"I hope it demonstrates how utterly distressing it is for sufferers to not only cope with their ever deteriorating health, but to cope with supposedly professional people who use every opportunity to psychologically batter them into submission. "
Cindy
“Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness."
Shelley
" I went to a Manchester hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. "
Sandra
"I was interviewed by this supervisor every Monday and every Friday from then on. I felt like I was a criminal. She took me into a small office and every time asked how I was doing and how long would it be before I worked full time again because I was straining the section as they had to cover for my absence"
Clare
"At work I have been asked to go to see the company doctor as no-one believes I'm unwell yet they see me struggling to walk on occasions!"
Julie
" I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description "
Rose
"So Rose had to do a 6 week diagnostic test for PRS with two 6-second sessions of physio, adding on 10% each week and starting with 10 minutes high activities. This included education, art therapy and visitors.
Even if Rose was unconscious from blacking out then someone had to read to her and the curtains had to remain open - 10% each week."
So for Day 5 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.
If you believe in COVID-19 and its effects then
listen to patients and believe in ME.
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
The stories above reflect decades of suffering.
Remember, nobody really wants to live like this.
Further Reading:
Further Reading:
