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New PACE paper, more SMC spin.
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Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study
Researchers say belief that activity will make ME worse can limit effectiveness of graded exercise therapy or CBT
A man walks through the Yorkshire Dales. Guiding CFS patients through a gradual increase in activity could help in treating the disease. Photograph: Barry Lewis/Corbis
Haroon Siddique
Wednesday 14 January 2015 00.02 GMT
Patients’ fear that exercise or activity will make chronic fatigue syndrome worse can significantly hinder treatment of the debilitating condition, according to researchers.
Exhaustion is a defining condition of CFS, also known as myalgic encephalomyelitis (ME), which is thought to affect around 250,000 people in the UK, and can be crippling in severe cases.
Previous research, by some of the same authors, suggested graded exercise therapy (GET), where the level of activity is built up over time, and cognitive behaviour therapy (CBT) are the most effective treatments for the condition. But in a paper published in the Lancet on Wednesday, they say “fear avoidance beliefs” can account for up to 60% of the treatment effect of CBT and GET.
Prof Trudie Chalder, from Kings College London, who led the study, said: “By identifying the mechanisms whereby some patients benefit from treatment, we hope that this will allow treatments to be developed, improved, or optimised.
“Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity (as in GET).”
She said fear was understandable given the nature of the condition but that people with ME often did too much on days when they felt the symptoms less, hence the importance of experts guiding them through a gradual increase in activity.
It is unclear what causes ME and the Lancet study does not try to address this. There is deep resistance among some to the idea that it may have a psychological component. The authors of the original 2011 paper detailing the results of the so-called Pace trial, the biggest ever study of treatments for ME, were attacked for suggesting that CBT, one of the psychological “talking therapies”, could help some sufferers. Critics insist that it is a physical disease, which probably has a viral cause.
The findings about fear avoidance did not imply a psychological cause, said Chalder. “We know that beliefs are incredibly powerful, as are behaviours, and they are an incredibly powerful aspect of the nature of the illness. It doesn’t matter whether you’ve got cancer, MS [multiple sclerosis ], depression or CFS, your beliefs are going to be incredibly important.”
Not understanding the exact genesis of a disease did not preclude treating its symptoms, she added.
ME charities raised concerns that fear avoidance would be misinterpreted. The chief executive of Action for ME, Sonya Chowdhury, said: “This does not mean that ME or CFS is a psychological illness. Nor do we believe that people with ME are afraid of taking part in appropriate activity or exercise – appropriate activity might involve a short walk or, for someone with severe ME, small movements or even sitting up in bed.
“In this context, fear avoidance is a well-documented factor that can affect the experience of any chronic pain condition, regardless of pathology.”
Dr Charles Shepherd, medical adviser for the ME Association, said: “We fear that the way in which the results of this study will be reported in the media, and in other medical publications, may help to reinforce the view that rest is bad and exercise is good for people with ME/CFS, and that any reluctance to increase activity levels are more related to fear or avoidance behaviour rather than any underlying disease process involving brain and muscle.”
http://www.theguardian.com/society/...ients-fear-exercise-hinder-treatment-study-me
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Esther12
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Esther12
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ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers
Kings College researchers found patients who were able to overcome their fear about exercise showed the greatest improvement in symptoms
ME is characterised by fatigue, muscle aches and memory loss Photo: Alamy
By Sarah Knapton, Science Editor
12:01AM GMT 14 Jan 2015
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People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King's College has found.
Research found that therapies which encourage regular activity are the best way to tackle chronic fatigue syndrome but many patients are afraid it will make them more tired or achy.
The condition, once dismissed as ‘Yuppie Flu’, is now a recognised illness which affects around 250,000 people in Britain.
Sufferers report extreme fatigue, joint pain, headaches and memory problems, but doctors still do not know the cause or how to cure it.
To find out the best way to alleviate symptoms, King’s scientists put more than 600 patients on various treatment plans over the course of a year, including cognitive behavioural therapy, specialised medical care and exercise.
They found that many patients had a 'fear of exericse' but once they were encouraged to be more active through behavioural therapies, they started to improve.
Professor Trudie Chalder, of Kings College London said: “CFS is a chronic and debilitating condition which is characterised by severe fatigue.
“People may experience sleep disturbance and muscle and joint pain. It stops them engaging in normal activities that we all take for granted such as seeing friends or going to the shops.
“The results suggest that therapists could encourage more physical activities, such as walking. We don’t suggest telling somebody to just get on their bike. It should be done gradually and carefully.
“Some people are bed-bound, so it may be initially to get them sitting up, or sit out of the bed for a few minutes.”
When asked whether the illness was purely psychological, Professor Chalder said: “I think everything is in the brain. Some people are going to say that, but we know that beliefs are incredibly powerful as are behaviours irrespective of the nature of the illness"
However charities said the report was unhelpful as it insinuated that sufferers were simply lazy.
Dr Charles Shepherd, medical advisor at the ME Association said more needed to be done to find individual treatment plans depending on symptoms.
“We fear that the way in which the results of this study will be interpreted may help to reinforce the over-simplistic view that rest is bad and exercise is good for people with ME/CFS,” he said
Sonya Chowdhury, CEO for Action for ME added: “This does not mean that ME or CFS is a psychological illness.
“Nor do we believe that people with ME are afraid of taking part in appropriate activity or exercise – appropriate activity might involve a short walk or, for someone with severe M.E., small movements or even sitting up in bed.”
Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.
Most cases of CFS are mild or moderate but some people experience symptoms which are so severe they struggle to do even simple tasks like brushing teeth.
Previously experts have suggested it could be triggered by a viral infection; problems with the immune system; a hormonal imbalance or an emotional trauma.
Professor Chalder said it was wrong to think of sufferers as lazy.
“They tend to be the opposite,” she said: “Sufferers of ME tend to be conscientious and hard-working and there is quite a lot of evidence that they are not lazy.”
The research was published in The Lancet Psychiatry.
http://www.telegraph.co.uk/news/sci...chronic-fatigue-syndrome-say-researchers.html
Esther12
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Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition
By Jenny Hope for the Daily Mail
- Helping patients overcome fears was key to getting back to a normal life
- Gradually increasing exercise regime can help overcome symptoms
- Cognitive behavioural therapy was likewise effective
- Both treatments enabled at least one in three to recover from the disorder
- Syndrome leaves many bed-bound or in a wheelchair
Published: 00:03, 14 January 2015 | Updated: 00:03, 14 January 2015
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Sufferers of chronic fatigue syndrome are being held back from recovery by fears about exercise, claim researchers.
A new study found some people with the disorder were worried about doing activity such as walking in case it aggravated their symptoms.
Helping them overcome those fears was key to getting back to a normal life through supervised exercise and talking therapies, it is claimed.
Researchers claim sufferers of chronic fatigue syndrome are being held back from recovery by fears of exercise, as they are scared activity such as walking could aggravate their symptoms
The study found the two treatments enabled at least one in three people to recover from the disorder, which leaves many bed-bound or in a wheelchair.
But 60 per cent of the benefit gained was reducing people’s concerns that exercise or activity would worsen symptoms.
Professor Trudie Chalder from King’s College London, who led a team of researchers, said ‘We should encourage patients to engage in activity but do it consistently and gradually.’
She said people with CFS, including myalgic encephalomyelitis (ME), could not be expected to ‘get on a bike’ if they had been ill for years.
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Many of the UK’s 250,000 sufferers have symptoms such as flu-like illness, extreme tiredness and mental lethargy that can last for years, possibly triggered by a viral infection.
The study in The Lancet Psychiatry medical journal is a new analysis of data from research four years ago which showed a gradually increasing exercise regime can help overcome the debilitating symptoms.
Cognitive behavioural therapy (CBT), which encourages patients to think differently about their symptoms and try increasing activity, was equally effective, despite resistance from some campaigners to psychiatric approaches.
About one-third were able to live a normal life again, with 41 per cent saying they felt much better.
Helping patients overcome those fears was key to getting back to a normal life through supervised exercise and talking therapies such as cognitive behavioural therapy
The researchers used a statistical method called mediation analysis to identify factors such as beliefs about activity and physical fitness through which CBT and a gradually increasing exercise regime (GET) had beneficial effects on fatigue and physical function.
Of all the mediating factors analysed, the researchers found a reduction in fears that exercise or activity will make symptoms worse was the strongest, accounting for up to 60 per cent of the overall effect.
Prof Chalder said ‘Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity.
‘Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.’
One of the study co-authors, Professor Peter White, from Queen Mary, University of London, said ‘It is important to bear in mind that this paper addresses how CBT and GET work for CFS.
‘It does not speak to how CFS arises in the first place.’
NHS guidelines currently recommend CBT or graded exercise.
http://www.dailymail.co.uk/health/a...e-anxious-activities-aggravate-condition.html
Bob
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Well at least there's a slightly more sensible comment at the end of the Healio article:
Esther12
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Bob
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I wish someone had pre-warned us about this onslaught! 
charles shepherd
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We were also contacted by The Independent, The Sun, BMJ and Daily Telegraph
Esther12
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Could you do more drawing attention to the fact that CBT did not lead to an improvement in 6mwt results type stuff?
Talking about problems with perceptions is a bit besides the point. I realise that it's hard for you if you've not seen the paper, and that the British medical press has had a lot of spin from the sMC on this stuff, but I worry that otherwise it sets up a science vs politics dynamic.
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Statement from The ME Association - issued to health journalists and editors on 12 January 2014
The ME Association believes that energy management, which involves both physical and mental activity, is the most important aspect of managing ME/CFS.
Consequently, we welcome research which aims to improve our knowledge of how this can best be achieved.
Energy management programmes should be individually tailored. And they must take account of the wide range of clinical presentations and disease pathways that come under the ME/CFS umbrella.
We are therefore very critical of over-simplistic exercise regimes which are based on deconditioning, fear of activity and the assumption that people just need to 'try harder' in order to get better.
This approach does not acknowledge the muscle, brain and immune system abnormalities in ME/CFS, which help to provide a physical explanation for the debilitating central (brain) and peripheral (muscle) fatigue that occurs in this illness.
Feedback from patients, who are not normally treated as part of research studies, consistently indicates that around 25% find exercise programmes to be of no value. Around 50% report that their condition worsens as a result.
So the real reason why cognitive behaviour therapy and graded exercise therapy are not producing significant benefits across the whole ME/CFS population is that they are based on a flawed model of illness causation. They are are not taking account of the medical complexities involved.
In our experience, patients with ME/CFS are highly motivated to get better.
They are very willing to take part in energy management programmes that establish a safe baseline of activity, take account of the stage and severity of their illness, involve increases in physical and mental activity that are gradual, flexible and do not result in the person going beyond their limitations and causing symptom exacerbation.
We fear that the results of this study will be interpreted to reinforce the over-simplistic view that rest is bad and exercise is good for people with ME/CFS.
And without discussing the medical complexities involved, they also infer that any reluctance to progressively increase activity levels is far more related to fear or avoidance behaviour than any underlying disease process.
What we desperately need are high quality research studies that are aimed at producing a range of individual energy management programmes based on clinical presentation, stage, and severity of illness.
Dr Charles Shepherd
Hon Medical Adviser, MEA
Background information:
The MEA submission to NICE, regarding their recommendations relating to the use CBT and GET in their current (2007) guideline on ME/CFS:
CBT, GET and Pacing
Our principal reason for requesting a fundamental review of the NICE guideline on ME/CFS relates to the recommendation that CBT and GET should be automatically offered to everyone with mild or moderate ME/CFS.
This is coupled with the continuing failure of NICE to take note of highly consistent patient evidence, dating back to evidence that was published in the 2002 Chief Medical Officer’s report on ME/CFS, regarding the efficacy and safety of these two behavioural treatments.
The largest ever survey of patient evidence relating to all aspects of the management of ME/CFS was carried out by The ME Association and published in 2010 (ME Association). The report provided important evidence regarding concerns over the efficacy of CBT and the safety of GET.
For CBT (997 responses) Greatly improved: 2.8% Improved: 23.1% No change: 54.6% Slightly worse: 11.6% Much worse: 7.9%
For GET (906 responses) Greatly improved: 3.4% Improved: 18.7% No change: 21.4% Slightly worse: 23.4% Much worse: 33.1%
For Pacing (2137 responses) Greatly improved: 11.6% Improved: 59.6% No change: 24.1% Slightly worse: 3.5% Much worse: 1.2%
The MEA is currently in the final stages of preparing a further report covering the use of CBT, GET and Pacing – but this time in much greater depth. The report will be based on the answers to questions on the above three treatments that were provided through 3142 responses given by 1429 respondents during 2012.
Overall, the patient evidence contained in this new MEA report is very similar to the evidence contained in the 2010 report. The two MEA surveys show a total of 6599 responses about the effect of treatments on symptoms, and a total of 6838 responses about appropriateness of courses, effectiveness of self management and helpfulness of consultations and general satisfaction.
However, to date NICE has failed to consider any of this patient evidence and both MEA reports support the findings from patient surveys referred to in the Chief Medical Officer’s Working Group report into ME/CFS.
We are therefore looking at a consistent picture from patients with regard to all three approaches to management going back over at least a decade and the picture has not improved.
As a result of growing concern amongst people with ME/CFS about the efficacy and safety of CBT and GET, we will be making a number of radical recommendations regarding the future use of CBT and GET in ME/CFS in this report.
This is clearly important new evidence that cannot be ignored by NICE.
The PACE trial and the March 2011 surveillance review
Finally, in relation to CBT and GET and Pacing, we assume that the NICE guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial results in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET.
However, there has been widespread and valid criticism about the way in which the PACE trial was carried out, as well as the way in which the results were presented and reported.
In addition, it should be noted that the cost effectiveness paper by McCrone et al reported that take up of state sickness benefits had increased during the PACE trial for all four treatments (ie CBT, GET, Pacing and Standard Medical Care). The MEA report will also contain similar information on benefit status.
The ME Association believes that energy management, which involves both physical and mental activity, is the most important aspect of managing ME/CFS.
Consequently, we welcome research which aims to improve our knowledge of how this can best be achieved.
Energy management programmes should be individually tailored. And they must take account of the wide range of clinical presentations and disease pathways that come under the ME/CFS umbrella.
We are therefore very critical of over-simplistic exercise regimes which are based on deconditioning, fear of activity and the assumption that people just need to 'try harder' in order to get better.
This approach does not acknowledge the muscle, brain and immune system abnormalities in ME/CFS, which help to provide a physical explanation for the debilitating central (brain) and peripheral (muscle) fatigue that occurs in this illness.
Feedback from patients, who are not normally treated as part of research studies, consistently indicates that around 25% find exercise programmes to be of no value. Around 50% report that their condition worsens as a result.
So the real reason why cognitive behaviour therapy and graded exercise therapy are not producing significant benefits across the whole ME/CFS population is that they are based on a flawed model of illness causation. They are are not taking account of the medical complexities involved.
In our experience, patients with ME/CFS are highly motivated to get better.
They are very willing to take part in energy management programmes that establish a safe baseline of activity, take account of the stage and severity of their illness, involve increases in physical and mental activity that are gradual, flexible and do not result in the person going beyond their limitations and causing symptom exacerbation.
We fear that the results of this study will be interpreted to reinforce the over-simplistic view that rest is bad and exercise is good for people with ME/CFS.
And without discussing the medical complexities involved, they also infer that any reluctance to progressively increase activity levels is far more related to fear or avoidance behaviour than any underlying disease process.
What we desperately need are high quality research studies that are aimed at producing a range of individual energy management programmes based on clinical presentation, stage, and severity of illness.
Dr Charles Shepherd
Hon Medical Adviser, MEA
Background information:
The MEA submission to NICE, regarding their recommendations relating to the use CBT and GET in their current (2007) guideline on ME/CFS:
CBT, GET and Pacing
Our principal reason for requesting a fundamental review of the NICE guideline on ME/CFS relates to the recommendation that CBT and GET should be automatically offered to everyone with mild or moderate ME/CFS.
This is coupled with the continuing failure of NICE to take note of highly consistent patient evidence, dating back to evidence that was published in the 2002 Chief Medical Officer’s report on ME/CFS, regarding the efficacy and safety of these two behavioural treatments.
The largest ever survey of patient evidence relating to all aspects of the management of ME/CFS was carried out by The ME Association and published in 2010 (ME Association). The report provided important evidence regarding concerns over the efficacy of CBT and the safety of GET.
For CBT (997 responses) Greatly improved: 2.8% Improved: 23.1% No change: 54.6% Slightly worse: 11.6% Much worse: 7.9%
For GET (906 responses) Greatly improved: 3.4% Improved: 18.7% No change: 21.4% Slightly worse: 23.4% Much worse: 33.1%
For Pacing (2137 responses) Greatly improved: 11.6% Improved: 59.6% No change: 24.1% Slightly worse: 3.5% Much worse: 1.2%
The MEA is currently in the final stages of preparing a further report covering the use of CBT, GET and Pacing – but this time in much greater depth. The report will be based on the answers to questions on the above three treatments that were provided through 3142 responses given by 1429 respondents during 2012.
Overall, the patient evidence contained in this new MEA report is very similar to the evidence contained in the 2010 report. The two MEA surveys show a total of 6599 responses about the effect of treatments on symptoms, and a total of 6838 responses about appropriateness of courses, effectiveness of self management and helpfulness of consultations and general satisfaction.
However, to date NICE has failed to consider any of this patient evidence and both MEA reports support the findings from patient surveys referred to in the Chief Medical Officer’s Working Group report into ME/CFS.
We are therefore looking at a consistent picture from patients with regard to all three approaches to management going back over at least a decade and the picture has not improved.
As a result of growing concern amongst people with ME/CFS about the efficacy and safety of CBT and GET, we will be making a number of radical recommendations regarding the future use of CBT and GET in ME/CFS in this report.
This is clearly important new evidence that cannot be ignored by NICE.
The PACE trial and the March 2011 surveillance review
Finally, in relation to CBT and GET and Pacing, we assume that the NICE guideline surveillance review that took place in March 2011, and which followed publication of the PACE trial results in February 2011, simply ‘rubber stamped’ the 2007 NICE guideline recommendations on the basis that the PACE trial had supported the recommendations relating to CBT and GET.
However, there has been widespread and valid criticism about the way in which the PACE trial was carried out, as well as the way in which the results were presented and reported.
In addition, it should be noted that the cost effectiveness paper by McCrone et al reported that take up of state sickness benefits had increased during the PACE trial for all four treatments (ie CBT, GET, Pacing and Standard Medical Care). The MEA report will also contain similar information on benefit status.
Esther12
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Here's the Independent:
http://www.independent.co.uk/life-s...ndrome-can-benefit-from-exercise-9976254.html
Sufferers of chronic fatigue syndrome ‘can benefit from exercise’
There is now a consensus that CFS, which affects 250,000 in the UK, is real
Charlie Cooper
Health Correspondent
Wednesday 14 January 2015
People who suffer from chronic fatigue syndrome (CFS) can improve their symptoms of exhaustion by reducing their fear that exercise will make their condition worse, researchers have said.
Exercise therapy and cognitive behavioural therapy were shown to be the most effective treatments for CFS, also known as myalgic encephalomyelitis (ME), in a major trial in 2011. The condition has been subject to controversy in the past. Some doctors once doubted that it existed at all, but there is now a broad consensus that the condition, which affects 250,000 people in the UK and is characterised by extreme exhaustion, is real. However, evidence of the benefits of graded exercise therapy, which involves a gradual increase in physical activity, remains contentious, with some CFS patients saying it brought them no benefit.
The new study, from the same team at Kings College London that carried out the 2011 trial analyses the factors through which the cognitive and exercise therapies proved effective.
They found that “reduction in fear avoidance beliefs” was the main factor – contributing up to 60 per cent of the overall effect of the two therapies.
Professor Trudie Chalder, who led the research, said that the findings only related to how cognitive or exercise therapy could benefit patients – not to how CFS is caused.
Fear that exercise could lead to a worsening of symptoms was an “understandable reaction” to having CFS, researchers said, and some patients have reported that too much exercise too soon does indeed lead to even more extreme exhaustion. The findings are published in The Lancet Psychiatry journal.
Sonya Chowdhury, CEO of the charity Action for ME, said: “This does not mean that ME or CFS is a psychological illness... Nor do we believe that people with ME are afraid of taking part in appropriate activity or exercise – appropriate activity might involve a short walk or, for someone with severe ME, small movements of even sitting up in bed.”
http://www.independent.co.uk/life-s...ndrome-can-benefit-from-exercise-9976254.html
For people who want to discuss the details of the paper, I've started a separate thread: http://forums.phoenixrising.me/inde...ndary-mediation-analysis-of-pace-trial.34927/
There's an accompanying commentary in Lancet Psychiatry and I've started a thread on this: http://forums.phoenixrising.me/inde...mmentary-on-pace-trial-mediators-paper.34928/
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Nice try, but you don't see CBT and GET listed on the CDC website as the only appropriate treatments for cancer or MS, do you? Sheesh, it's like these people are in a cult.
Exactly.
Esther12
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The Daily Mail one is clearly the most misleading, but to be fair to them, the same reporter did also write the article 'Homeopathy works!' At least they're consistant.
http://www.dailymail.co.uk/health/article-4040/Homeopathy-works.html
I realise that charities are in a really difficult position on this stuff, but I'd have really like to see some detailed criticism of the specific problems we've seen around PACE.
Is that true? Which charity said that?
I'm totally open to the possibility that I'm ignorant and misguided about this, and don't want to act like I'm slamming them (for this), but I think that the charity responses were not really helpful.
LOL at this from Knoop and Wiborg after their actometer data:
I thought they'd stopped trying to claim this after realising they had no evidence for it?
The evidence indicates that CBT is not able to lead to a sustained increse in activity levels. We now have evidence that neither CBT nor GET lead to an improvement in fitness levels either.
http://www.dailymail.co.uk/health/article-4040/Homeopathy-works.html
I realise that charities are in a really difficult position on this stuff, but I'd have really like to see some detailed criticism of the specific problems we've seen around PACE.
Is that true? Which charity said that?
I'm totally open to the possibility that I'm ignorant and misguided about this, and don't want to act like I'm slamming them (for this), but I think that the charity responses were not really helpful.
LOL at this from Knoop and Wiborg after their actometer data:
I thought they'd stopped trying to claim this after realising they had no evidence for it?
The evidence indicates that CBT is not able to lead to a sustained increse in activity levels. We now have evidence that neither CBT nor GET lead to an improvement in fitness levels either.
Esther12
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Also - it would be good if there was a recording of their press conference available.
Bob
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I've only just discovered the Lancet's commentary, by Knoop & Wiborg, so I'm posting the link in case anyone else missed it (i don't know if it's posted in this thread and I missed it):
http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00145-X/abstract
http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00145-X/abstract