Invest in ME Research
Christmas/New Year Fund Appeal Advent Calendar


Listen to the Patients


Stories of ME.

Over the years Invest in ME Research has received many stories of people enduring ME, and who have experienced the lack of knowledge about the disease, the ignorance.

Some long stories, some short.

All underlying the incomprehensibility of retaining the status quo in terms of research, treatments and services – that has suited some organisations, and individuals and benefited those taking salaries or maintaining careers based on this state of affairs.

So it is always surprising that the old adage “listen to the patients” is something often ignored.

We pointed this out in Listen to the Patients http://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 from patients, and carers – even just clips.

We alluded to some in them in the Advent Calendar Day 14 article Humour and ME article

But definitely not with any humour is the story of the family of Rose -

"The consultant said that the 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 –

http://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 20 of the Advent Calendar for ME a request for doctors and healthcare staff to believe in patients.

The stories above reflect decades of suffering.

Remember, nobody really wants to live like this.

Further Reading:





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