Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)
Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway...
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KCL on PACE recovery, with amusing quote from Chalder

Discussion in 'Latest ME/CFS Research' started by Esther12, Aug 15, 2013.

  1. Esther12

    Esther12 Senior Member

    'Recovery means being able to get on and partake in life without significant fatigue,' says Professor Chalder.

    Seeing as their new 'recovery' criteria allowed patients to be classed as 'recovered' even if they filled in their fatigue questionnaire in exactly the same way as when they were classed as suffering from severe and disabling fatigue, and PACE showed CBT and GET leading to no improvements in rates of employment or disability benefit claims, this is a bit funny. Also, recovery doesn't mean that to most people. One can manage one's disability in a way which allows one to get on and partake in life without significant fatigue, but unless one is able to partake in the level of activity one was able to enjoy before falling ill, one has not recovered. There is a bit of a trend for dodgy mental health workers (not just with CFS) to try to redefine what recovery means. To me it seems that this is largely to help themselves feel less useless (and they are sometimes quite open about the fact that the major benefit is for staff rather than patients). I find it pretty repulsive.

    CBT for Chronic Fatigue Syndrome

    Researchers at King's College London's Institute of Psychiatry pioneered cognitive behaviour therapy for chronic fatigue syndrome - now a recommended treatment by NICE.
    Specialised cognitive behaviour therapy (CBT) is one of two treatments recommended by the National Institute for Health and Care Excellence (NICE) for chronic fatigue syndrome (CFS). Researchers at King's College London's Institute of Psychiatry (IoP) were among the architects of this bespoke talking therapy.

    People who have CFS are often unwell for considerable periods of time and the symptoms can have an enormously detrimental effect on their everyday lives: in some cases, people can become housebound or even confined to bed. In addition to the characteristic profound and disabling exhaustion – which isn't alleviated by rest – other medically unexplained symptoms can include joint and muscle pain, headaches, disturbed sleep, short-term memory problems and difficulty concentrating. NHS Choices estimates that around 250,000 people in the UK have CFS.

    Professor Trudie Chalder is director of the Chronic Fatigue Research and Treatment Unit, jointly run by the IoP and South London and Maudsley NHS Foundation Trust. The Unit offers treatment to people referred from all over the country.

    When she and her colleagues in the Unit (also known as the Chronic Fatigue Service) first piloted CBT for CFS in 1991, there were no established treatments for people who had been given the diagnosis (a diagnosis is made when other potential causes for the overwhelming fatigue have been ruled out).
    The CBT for CFS they developed is based on the premise that the way people cope with the symptoms may contribute to their continuance. People often believe that if they don't rest, their symptoms will get worse, says Professor Chalder, professor of cognitive behavioural psychotherapy. Yet extended periods of rest can make people feel more tired and unwell by weakening muscles and disturbing the body clock.

    'We think that what starts the fatigue is not the same thing that perpetuates the symptoms,' she says. 'People might initially develop the fatigue as the result of an illness, such as a virus, or after a period of stress, for example. But once triggered, the fatigue is maintained by other factors, including some coping styles.

    'Beliefs and attitudes towards illness are important in many physical and mental conditions. In CFS, fear that exercise or activity may make symptoms worse is a common belief that can hinder recover and inadvertently perpetuate the symptoms.

    'CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms.

    'It also helps address any beliefs that may make recovery more difficult. CBT helps patients understand their symptoms, tackle the understandable fears they have about activity and encourages people to do more despite their tiredness.'

    Professor Chalder has developed a version of the specialised therapy for young people that involves the whole family. Family-based CBT is routinely offered to 11 to 18-year-olds referred to the Chronic Fatigue Service. For them, the consequences of CFS are dire, impacting on education, and physical and social development as a result of long periods out of school.

    The choice between rest and activity as a treatment for CFS has often been at the core of a controversial debate. Both CBT and the other NICE-recommended treatment for CFS – Graded Exercise Therapy (GET) – encourage people to become active again.

    The results of the landmark PACE trial (first published in 2011 in The Lancet) showed that CBT and GET were more effective treatments for CFS and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment.

    The PACE trial team – including Professor Chalder and colleagues – stayed in touch with the participants to assess their symptoms in the months following their treatment. One year after a course of CBT or GET, a fifth of people had recovered. 'Recovery means being able to get on and partake in life without significant fatigue,' says Professor Chalder.

    The PACE trial used the 'Chalder Fatigue Scale', first created in 1993 to measure physical and mental tiredness. Nowadays, the 11-question form is used in both research studies and specialist clinics all over the country to monitor people's progress, says Professor Chalder. 'At our clinic, for example, people fill in the questionnaire before they come to some appointments so we can assess how effective the treatment is,' she says.

    July 2013

    Professor Chalder is the co-author of two self-help books based on CBT for CFS: Overcoming chronic fatigue, a self-help guide using CBT techniques (Constable and Robinson and Read How You Want) and Self help for chronic fatigue syndrome: a guide for young people (Blue Stallion Publications).
    Sources used
    Cognitive behaviour therapy in chronic fatigue syndrome. Butler S, Chalder T, Ron M, Wessely S. 1991, Journal of Neurology, Neurosurgery and Psychiatry. 54; 153-158.
    Development of a fatigue scale. Chalder T et al, 1993, Journal of Psychosomatic Research, 37(2): 147-153.
    Cognitive behaviour therapy for chronic fatigue syndrome: a randomized controlled treatment trial. Deale A, Chalder T, Marks I, Wessely S. 1997, American Journal of Psychiatry, 154 (3): 408-414.
    Family cognitive behaviour therapy for chronic fatigue syndrome: an uncontrolled study. Chalder T, Tong J, Deary V. 2002, Archives of Disease in Children, 86(2): 95-97.
    Cognitive behaviour therapy for chornic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial. Quarmby L, Rimes K, Deale A, Wessely S and Chalder T. 2007, Behaviour Research and Therapy, 45(6): 1085-1094.
    Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children, NICE guideline, 2007
    Family focused cognitive behaviour therapy versus psychoeducation for chronic fatigue syndrome in 11-18 year olds: a randomised controlled treatment trial. Chalder T, Deary V, Husain K, Walwyn R. 2010, Psychological Medicine, 40(8): 1269-79.
    Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. White PD, et al: PACE trial management group. 2011,The Lancet, 377(9768): 823-36.
    Adaptive pacing, cognitive behaviour therapy, graded exercise and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. McCrone P et al. PLoS One, 2012, epub August 1.
    Recovery from chronic fatigue syndrome after treatments given in the PACE trial. White PD et al: PACE trial management group, 2013, Psychological Meidcine, Jan 31: 1-9 (epub).
    British Association for CFS/ME (BACME)
    NHS Choices: Chronic fatigue syndrome
    Information about the Chronic Fatigue Research and Treatment Unit (run jointly by King's College London and South London and Maudsley NHS Foundation Trust).
    Chronic Fatigue Service, South London and Maudsley NHS Foundation Trust (no date on publication)
    Overcoming chronic fatigue, a self-help guide using CBT techniques, Mary Burgess and Trudie Chalder, Constable and Robinson 2005, Read How You Want, 2013.
    Self help for chronic fatigue syndrome: a guide for young people, Trudie Chalder and Kaneez Hussain, Blue Stallion Publications, 2002.
    biophile and Valentijn like this.
  2. biophile

    biophile Places I'd rather be.

    CBT/GET proponents' talk of increasing activity levels in general is quackery, not because it is unproven, but because it even disproved by their own research, so there is no excuse for them to keep claiming, alluding to, or implying such.

    Roy S, Esther12, Artstu and 2 others like this.
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi biophile, I like the cartoons. We need more of this kind of thing. Alex.
    biophile likes this.
  4. xxRinxx


    Paducah, Kentucky
    Good grief I don't know how these people are still allowed to 'treat' people with CFS/me. If some one told me 'all you need to do is exercise' I would have to punch them square in the mouth. Oh yes, thousands of people have 'thought' themselves into a debilitating illness. There is a limit to how much BS a person can believe. Their own study shoots them in the foot..Anyone that even takes time to look at the 'results' can see they adjusted them to fit their needs, and line their pockets with fabricated success. Its insulting to us for people to continue to perpetuate this idea of Exercise 'treatment'.
    Yes we should still be active..but only as much as we think our body can handle. After my normal functions of the day, like laundry and cooking, the idea of talking a jaunty stroll around the neighborhood makes me want to puke. Dumbbells and five minutes on the exercise bike is my threshold on moderate days. :/
    Valentijn likes this.
  5. Esther12

    Esther12 Senior Member

    Be sure to put the dumbbells down before you give them a smack... or it could get serious!
    Valentijn and xxRinxx like this.

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