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NHS in the UK asking for the public to submit suggestions of illnesses to be researched

A

anniekim

Senior Member
Messages
779
Location
U.K
The UK National Institute for Health Research, apparently only second to MRC in terms of spending power, are looking for suggestions from patients, carers and members of the public for tests and treatments that need to be researched. A great opportunity to tell them why it's vital that potential ME tests and treatments be researched.

For those interested and well enough to write, submission is simple - it just requires answers to three questions at this link http://t.co/7DoWC1Lapp
 
halcyon

halcyon

Senior Member
Messages
2,482
Bob said:
I haven't seen anything to say you can't. So, yes please. :)
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Thanks Bob, I did so. I brought attention to the following statement:
'We still know nothing about the nature and cause of epidemic myalgic encephalomyelitis, but outbreaks are still occurring. Future epidemics should be studied by a collaborative team of neurologists, epidemiologists, virologists, and immunologists. Its findings would be important not only for the study of epidemic myalgic encephalomyelitis but also for other neurological disorders, including multiple sclerosis'. It is hoped that as a result of the meeting sufferers from this miserable illness will, in future, be more sympathetically managed and more closely studied.
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While this statement could have been made yesterday it was actually made following a 1978 British symposium on ME. Someone diagnosed with this disease in 2015 really is no better off than someone diagnosed in 1978. There are very few major diseases where you could say the same thing.
 
SilverbladeTE

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Bob said:
lol, Is that the comment that you submitted, silverblade? I wonder if they will categorize it and respond to it? ;)
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"Tempting....but, no!" :p

willow-woman.jpg
 
Apple

Apple

Senior Member
Messages
217
Location
UK
How have people answered the 2nd question? 'What outcome should we measure?' Maybe i'm just a dimwit, but that wording is confusing to me :redface:
 
Seanko

Seanko

Senior Member
Messages
119
Location
Swindon, UK
@Apple don't worry, just brain fog,it happens to us all. There is no real right or wrong answer :)

If your first research request os to look into studying buomarkers associated Post Exertional Malaise (PEM), the outcome could be measuring hormones after a period of activity over a few days and asking patients to fill in a questionnaire.

The main idea is that you fill in the form asking and raise the issue of ME/CFS. In the third answer, you could mention the economic loss to the country and the cost to the NHS of untreated patients. Your own experiences are the best oens to talk about.

Have a look at the other PR thread
http://forums.phoenixrising.me/inde...r-is-consulting-the-public.39661/#post-637213

& Emily Beardall's blog post for some ideas.
Help Shape research in the NHS
 
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