BBC Radio Scotland: John Beattie show will feature discussion of ME/CFS, 14th Feb 2018

I'm listening now. Brief notes
Controversial treatment debated in parliament next week
Patients say it makes me them feel more unwell
£5 million pounds
Vance Spence - explain what ME is? Chronic long term condition muscle and brain. 2 types onset infection and 2nd longer
What causes it ? - no known cause and whether it is caused by infection - continuing - unknown
 
Patient being interviewed (Emma Shorter?). Larger housebound and without research facing rest of life
Diagnosed quite quickly. Had virus and never recovered
Deteriorated with CBT - blamed for not improving
You took part in trial funded by DWP ? Supposed to make you feel illness is due to false illness belief and exercised
Archaic view of medicine - 80's hysterical paralysis
Comes from a shameful place in medical history
 
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What happened when you followed treatment in this trial - became housebound, wheelchair
My consultant told me that I should have tried harder
Patients told to try this harmful treatment or you won't get disability payments
Now interviewing Emma's Mother
Emma was told she was at fault. Emma's Mother excluded from appointments as they were ... her false illness beliefs
 
PACE finally mentioned by name in statement by Govt
Also says NICE guideline is being looked at

MP says she hopes exercise will be removed from guideline
Needs huge amount of education of GPs

Very damaging headlines "exercise your way out of ME"

Need better guidelines
 
Sly Saint said:
If you have a radio you may be able to listen.
Analogue Radio
Tune in to BBC Radio Scotland on 92 - 95 FM and 810 MW.
You may be able to pick it up on a DAB radio.
Other ways:
To listen through a digital TV, select the following channels: Freeview: 719. Sky: 0116. NTL (now Virgin Media): 930
Click to expand...

Freeview 719 just gets me my local BBC station, not BBC Scotland (though presumably it works in Scotland!).
 
Vance Spence - Feels like a "Hamster on a wheel"
CMO report on ME "mike Armstrong" 12 principle recommendations and not one acted on
why - politics medicine barriers
30 decades of ME and he is 69 (not worked since 39)
He thought the report would set up a center of excellence and clinics. This would start research
There are no clinics in Scotland and no resurces
 
Talking about PACE trial debate......
Dr Spence........explaining what ME is, what causes it, no known cause.
Emma Shorter; talking about how she got ME and how it affects her. Because of lack of research will likely be for the rest of her life. She had a virus was given CBT/GET and deteriorated.
Explaining about CBT............illness is due to false illness belief.
Archaic idea about hysterical paralysis.......really good run down of how the belief of psychs has impacted on treatment or lack of.
She got worse, could walk before, ended up in a wheelchair, she was told it was her fault and should have tried harder........happening to children and parents are being blamed, people claiming benefits being turned down.
Janet (Emmas mother) talking about how Emma was told she was staying ill because she wasnt trying hard enough.
Debate in Westminster:
CM: impact of the PACE trial.......now regarded deeply flawed.
Starts from position of the illness being psychological, people being forced to do exercise which can be hugely damaging.
DOH: statement NICE are reviewing guidelines.........usual blurb.
CM: good they are looking at the guidelines and hope we get a removal of GET, but there are so many medical practitioners who still believe in it. Plus public perception.

Symptoms, Drs not being educated.

Dr Vance: 15 years ago CMO Scot released a report with 12 recommendations not one has been acted on. Barriers, politics. Problems of recruiting patients for research, no clinics in scotland or specialist.

CM: this is not a Scotland only issue. People in England are also not getting appropriate treatment.
Need better guidelines. NICE guidelines has bigger reach than just UK.
I have had correspondence from Australia ,canada, etc the PACE trial has had far reaching cons3quences.
 
Patient (Emma ) asked what her day is like - make choices, wash hair/talk to friends. Every day choice of small activities. Large activities in bed in pain. Toll on mental health she is asked? It can be really difficult. Enjoy what you can do. Achievement making breakfast. Main problem is energy
Scottish Govt part funded the trial
Scottish good practise guidelines include exercise - need to be changed
Barely have the energy to care for onself

Asks Vance Spence - have to find the energy to fight all this. No infrastructure to carry out research. Huge problem. 2003 report needed to be acted on. ME Research UK funding 12 project but most overseas. 2 in the UK. No application for research in ME
 
ES: every day is a choice of small activities.
Interviewer: It must take a toll on your mental health
ES you have to learn to take enjoyment from things you like.
The main problem: PACE trial. Scottish good practice guidelines should be changed as well as NICE.
Dr Spence:
patients having to fight for this illness, no infrastructure in Scotland.......most research being done overseas.
CM: PACE trial has to be exposed. One of the difficulties is that the patients is they are not seen.
mentions millionsmissing.
 
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