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New help for ME sufferers

2nd August 2012

A new study has claimed that exercise and behavioural therapies are the most cost-effective and successful ways to treat chronic fatigue syndrome.


Findings published in the journal PLoS ONE, which focussed on 640 patients, showed that the treatments for the condition also known as ME had the potential to save the economy millions of pounds if they were widely adopted.

Around 250,000 people in the UK have chronic fatigue syndrome - though its cause remains unknown - with symptom including tiredness, poor concentration and memory, disturbed sleep and pain in joint and muscles.

Patient groups reacted with a degree of anger when some of this research was published earlier in the year which suggested that cognitive behavioural therapy and graded exercise therapy were the most effective treatments, as many said that therapies where patients learn to live with limits were better and safer for them.

With the latest published results, research compared improvements in levels of fatigue and activity with the cost to the NHS of providing the treatments and concluded that only cognitive behavioural therapy and graded exercise therapy could be considered cost-effective.

Professor Paul McCrone, a health economist from King’s College London, said: “There is now a strong case for the NHS to invest in providing these therapies.”

Professor Michael Sharpe from Oxford University said the research should encourage health service commissioners to “provide these treatments to all those patients who need them.”

However, the charity Action for ME, said patient choice should not be reduced “as a result of this costing exercise.”


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Susan Wenger

Friday 3rd August 2012 @ 1:29

1. Cognitive behavioral therapy and graded exercise therapy are not new treatments. Certain psychiatrists have been promoting them as ME therapies for years.

2. Studies done on the effects of these therapies leave out the most severe sufferers -- the ones who are incapable of making it to a therapist's appointment, much less exercise.

3. ME patients suffer from post-exertional morbidity. That is, they get worse after even mild exertion. Exercise -- including "graded" exercise -- can do very real harm.

Andrew Kewley

Friday 3rd August 2012 @ 5:20

To quote the authors in the PLOS One article:

"There was no clear difference between treatments in terms of lost employment."

Anyone who has read the article would note that also found that economic costs increased by over ten thousand pounds per patient regardless of the treatment arm - eg none of the treatments were cost effective.

Given the prevalence and the economic costs quoted in the paper, we are talking about economic costs in the billions of pounds. Who cares about saving a few million pounds due to lower medical service utilisation when the disease is costing billions?

Barry Savage

Tuesday 7th August 2012 @ 12:41

I don't see how this is any help for patients with ME. Maybe I don't understand it. Is the following layman's analysis correct?

The study says "Participants were selected using the Oxford diagnostic criteria for CFS which required disabling fatigue to be the primary problem" so they had fatigue which "affects both physical and mental functioning" for the previous six months "present for more than 50% of the time"

The definition excludes patients with "a suspected disease that is likely to cause fatigue". Therefore it would exclude patients with ME because they also have, by definition, other symptoms such as gastrointestinal problems, sleep disturbance, temperature instability, CNS impairment, cerebral dysfunction, muscular pain and post-exertional malaise. Fatigue isn't usually the primary problem for people with ME.

The study says that CBT is the most cost-effective treatment at £18000 per patient. CBT is a series of talks "aimed to change behavioral and cognitive factors assumed to be responsible for perpetuating symptoms and disability" and it costs £110 per hour or about £900 per patient.

So the conclusion is that if 20 patients, who complain that they have felt too tired to function properly more that half the time for the past six months or more. are treated with several talks to attempt change the way they think and behave then just one of them will get better.

Am I mistaken?


Wednesday 22nd August 2012 @ 15:01

I have a condition called Fibromyalgia which is associated with ME and Chronic Fatigue Syndrome. (Some see them as different conditions, i.e ME is created by an epidemic breakout of something, e.g. a virus, as it is often found in clusters, where as CFS does not have a connection with epidemics, however the symptoms are mostly the same).

Three years ago I crashed and had extreme chronic fatigue. My doctors said accept it, this is part of your fibromyalgia condition.

I just wasn´t prepared to accept this and I searched relentlessly for 2 years to find a way to recover from this, but I just couldn´t establish why this had happened to me.

After pestering doctors over and over again and reading lots of blogs of people with similar symptoms, I found out I had candida and a parasite infection.

I have been treating myself for around about a year and I can now say that my health is back to 90% of what it was. I still have fibromyalgia, but I do not feel now that I have CFS.

I am a student studying a health psychology masters and as part of this I have been studying the effects of CBT on ME and CFS.

From what I can see, yes CBT can help some sufferers to cope with ME, especially those who have been suffering over time. However, studies show that improvement may be due in some part to the fact that sufferer is being given some professional attention, this helps when you are suffering from a condition that makes you feel depressed and isolated from the rest of the world and there is no obvious cure! It would make sense that CBT could potentially help any chronic disease sufferer. Also some studies showed that graded exercise therapy, in fact made the fatigue worse in many cases.

In my case, despite being recommended to see a Psychologist, I didn't believe CBT or exercise would have helped me recover from my fatigue.

It has taken a year of treatment to bring my health back to where it is now.

To all those suffering from diagnosis of ME, CFS or similar don't give up hope.

I also recommend you look at the work of Dr Jason Leonard, he himself admits that in most cases it is a question of searching for the underlying cause, although in some cases it cannot be identified.

I believe that there is an underlying cause to ME, some of which may not be treatable. CBT and exercise may help with coping strategies, depression and improved wellbeing in some cases, however, I am glad I looked at all the other possibilites and found that mine was a gut problem. I think this area is complex and the underlying cause may not be obvious in many cases....but my advice is keep on searching :)

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