olliec
Senior Member
- Messages
- 111
- Location
- London, UK
I made a complaint to NHS Choices recently:
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Your page on Chronic Fatigue Syndrome says "Most people improve over time"
I don't believe this to be true. Can you please check your sources as I'm not aware of any studies that show this to be true, and in fact studies show the illness does NOT get better over time and can in fact get worse.
http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx
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They replied:
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The information on the prognosis was taken from a number of studies, such as:
Chronic fatigue syndrome: aetiology, diagnosis and treatment - BMC Psychiatry 2009
Outcome and Prognosis of Patients With Chronic Fatigue vs Chronic Fatigue Syndrome
Arch Intern Med. 1995;155(19):2105-2110.
The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review - Q J Med 1997; 90:223233
NICEs clinical guidelines on CFS (http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf) also state:
Most people with CFS/ME will improve over time and some people will recover and be able to resume work and normal activities.
However, others will continue to experience symptoms or relapse and some people with severe CFS/ME may remain housebound.
The prognosis in children and young people is more optimistic
So at the current time we do not see a need to change the information, though we are always willing to consider any new evidence on any issues we cover on our website.
Many Thanks,
Editorial Team,
NHS Choices
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Can any of you super-organised folk who keep track of research give me a set of high quality studies to respond with to refute their position?
David Bell seemed to suggest at the IiME conference that many people get better, temporarily, at about five years, but that long-term the majority remain sick, but just adjust their mindset to make life tolerable (which I suspect some studies have not taken into account - subjective assessment of illness seems particularly poor for ME/CFS people).
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Your page on Chronic Fatigue Syndrome says "Most people improve over time"
I don't believe this to be true. Can you please check your sources as I'm not aware of any studies that show this to be true, and in fact studies show the illness does NOT get better over time and can in fact get worse.
http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx
======
They replied:
=====
The information on the prognosis was taken from a number of studies, such as:
Chronic fatigue syndrome: aetiology, diagnosis and treatment - BMC Psychiatry 2009
Outcome and Prognosis of Patients With Chronic Fatigue vs Chronic Fatigue Syndrome
Arch Intern Med. 1995;155(19):2105-2110.
The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review - Q J Med 1997; 90:223233
NICEs clinical guidelines on CFS (http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf) also state:
Most people with CFS/ME will improve over time and some people will recover and be able to resume work and normal activities.
However, others will continue to experience symptoms or relapse and some people with severe CFS/ME may remain housebound.
The prognosis in children and young people is more optimistic
So at the current time we do not see a need to change the information, though we are always willing to consider any new evidence on any issues we cover on our website.
Many Thanks,
Editorial Team,
NHS Choices
=====
Can any of you super-organised folk who keep track of research give me a set of high quality studies to respond with to refute their position?
David Bell seemed to suggest at the IiME conference that many people get better, temporarily, at about five years, but that long-term the majority remain sick, but just adjust their mindset to make life tolerable (which I suspect some studies have not taken into account - subjective assessment of illness seems particularly poor for ME/CFS people).