In a large UK trial, chronic fatigue syndrome (CFS) patients who received cognitive behaviour therapy (CBT) or graded exercise therapy
(GET), combined with specialist medical care, were three times more likely to recover than those who received other treatments.
Researchers from King's College London, Queen Mary University of London, the University of Oxford and the Medical Research Council , write
about the results of the PACE trial in a paper published in the January online first view issue of Psychological Medicine.
Co-author Trudie Chalder, a professor in the Department of Psychological Medicine at King's College London's Institute of Psychiatry, says in a
"The fact that people can recover from chronic fatigue syndrome is excellent news."
"Healthcare professionals can now be more confident in sharing this possibility with patients, many of whom are understandably concerned about
their future," she adds.
Chronic Fatigue Syndrome (CFS)
Chronic fatigue syndrome (CFS), also referred to as ME or myalgic encephalomyelitis, affects some 250,000 people in the UK. It is a long-term,
debilitating condition that causes profound physical and mental fatigue (often made worse by exertion), accompanied by muscle and joint pain,
disturbed sleep, and problems with concentration and memory.
The affected person feels exhausted and not able to carry on with normal everyday life. It doesn't go away with sleep or rest, but for most people,
the symptoms gradually go away over time.
There is currently no cure for CFS/ME, although some treatments can ease symptoms. Trials like PACE are evaluating which treatments work
There is some controversy surrounding CFS/ME, as reflected in the two names. CFS is the term mostly used by the medical profession, because the
main symptom is usually chronic fatigue, and many argue there is not enough evidence that the condition is accompanied by brain and spinal cord
inflammation, as the name ME suggests.
ME is the term most patients prefer because they see fatigue as too general a way to describe their symptoms; it insufficiently
describes the severity and types of fatigue, and does not convey the fact fatigue, despite being the most common, is only one of several
For this reason, there are several ways to diagnose CFS/ME, each with its own set of criteria.
The PACE Trial
The PACE trial started in 2005 and compared four of the main treatments available for CFS.
640 participants, recruited from six secondary care CFS clinics in England and Scotland, were randomly allocated to one of four treatment groups,
with a final follow-up 52 weeks later.
The researchers used a range of criteria to define CFS/ME. These included the Oxford Criteria for CFS (all patients met these) and the London
Criteria for ME (51% of patients met these).
The four treatment groups were:
Specialist medical care (SMC) alone. In SMC, specialist doctors give the patient an explanation of CFS, and general advice about
how to manage it. They also prescribe medicines for symptoms such as insomnia and pain, or they advise the patient's GP (general practitioner)
as to which medication is most appropriate. In the SMC only group, patients are also encouraged to use the self-help methods that make most
sense to them.
Cognitive behavioural therapy (CBT) with SMC. In CBT, a trained clinical psychologist or nurse helps the patient understand how the
way they think affects their symptoms and how they cope with them, and gradually encourages them to increase activity.
Graded exercise therapy (GET) with SMC. In GET, a trained physiotherapist helps the patient adopt a gradually increasing tailored
exercise programme that is designed around their individual symptoms and current level of activity and fitness.
Adaptive pacing therapy (APT) with SMC. In APT, a trained occupational therapist helps the patient to match their activity level to the
amount of energy they have. The idea is to help them adapt to the illness rather than assuming they can gradually do more.
Previously published results from PACE showed that many patients improved with CBT and GET but did not answer the question about how many
Funds from the Medical Research Council, Department of Health, Chief Scientist Office, Scotland, and Department for Work and Pensions paid for
the PACE trial, which is thought to be the largest ever randomized controlled trial of treatments for CFS.
The Latest Study
The researchers examined the evidence for recovery after the one year follow-up.
Previously published results from PACE showed that both CBT and GET with SMC led to bigger reductions in symptoms and disability than either APT with
SMC, or SMC alone.
In this latest analysis, the researchers went a step further and looked at how many patients had recovered.
They classed recovery as no longer meeting several diagnostic criteria for CFS, including no longer suffering from significant fatigue or physical
disability. These were the same criteria that were used to select the patients for the trial in the first place.
Patients also had to rate their overall health as being "much" or "very much" better.
The results showed that patients who received CBT or GET in addition to SMC, were three times more likely to meet the criteria for recovery
than patients who only received SMC on its own, or APT with SMC.
The findings show that overall, 22% of patients receiving CBT or GET with SMC recovered, compared to 8% who received APT with SMC, and 7%
who received only SMC.
Even when measured against different criteria for CFS, the patterns were similar, including when the diagnostic criteria were confined to myalgic
encephalomyelitis (ME), which some people consider to be different to CFS.
Co-principal investigator of PACE, Peter White, is Professor of Psychological Medicine at Barts and the London School of Medicine and Dentistry,
part of Queen Mary, and lead author of the latest paper. He says:
"This is good news and shows that recovery from this debilitating condition is possible for some patients."
"We now need to go further to understand why only a relatively small proportion of patients recover, which shows how much this condition varies
between individuals; one treatment is unlikely to work for everyone."
Questioning Use of Term "Recovery"
White touched on the issue of how to define "recovery" and accepts some people reading about this study may question their use of the term. He
says this was a key issue in the design of the study, and they chose to focus on "recovery from the current episode of the illness", so they "used
several measures of both symptoms and disability to give ... the most complete picture possible."
However, he concedes that "further analysis is needed to see if recovery is sustained in the long-term."
Co-author Michael Sharpe, a professor at the University of Oxford and the other co-principal investigator of the PACE trial, says:
"The rehabilitative treatments of CBT and GET for CFS have been controversial. This analysis of the PACE trial data shows that not only do they
achieve improvements in the majority, but that they can also lead to recovery in a substantial minority."
Written by Catharine Paddock PhD
Copyright: Medical News Today
Not to be reproduced without permission of Medical News Today
"Recovery from Chronic Fatigue Syndrome after treatments given in the PACE trial"; P. D. White, K. Goldsmith, A. L. Johnson, T.
Chalder, M. Sharpe, and PACE Trial Management Group; Psychological Medicine, Published online January 2013;
DOI:10.1017/S0033291713000020; Link to
Additional sources: University of Oxford, and Kings College London.
Please use one of the following formats to cite this article in your essay, paper or report:
Paddock, Catharine. "Chronic Fatigue Treatments Lead To Recovery In Trial."Medical News Today. MediLexicon, Intl., 1 Feb. 2013. Web. 25 May. 2013. <http://www.medicalnewstoday.com/articles/255720.php>
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Visitor Opinions (latest shown first)
posted by Bart on 15 Feb 2013 at 6:39 am
@Dr Peter Tylee, I want to remind you to your own bias. And bias it is. CFS is a heterogene condition that makes it so hard for scientific research. The problem with CBT and psychology is that we are not talking about hard science but sloppy science. CBT do not work for the most CFS patients. Therapist must acknowledge this and stop the debat that CBT is good for everybody with this condition. Researchers as White et.al. are biased if you analyse there research by proper statistics it shows perpectly. The Nice guidlines are economic guidlines, not science. Bias it is based on an idea instead of objective data. at you i want see: show your data to suppot your statement instead of spreading anecdotes.
posted by Dr Peter Tylee on 14 Feb 2013 at 10:09 pm
I was right with you Joy, until I saw your phrase "a proper cure for the illness." That phrase contains some very loaded words: "proper," "cure," and "illness." These all could be explored to deconstruct just what your own biases and assumptions are. Regrettably they remind me of some doctors I know who would agree wholeheartedly. The trouble is that they want research to find "the virus" that "causes" this "illness" so that a "proper treatment" (meaning a pharmaceutical) can be developed. The ignorance is truly breathtaking.
These ignorant and biased individuals would be pleased to see an end to CBT as just so much psychobable that distracts from real treatment. All they achieve with such opinions is to expose their own limited understanding. No illness or disease, to use terms you seem comfortable with, is either just physical or just psychological. Further, every one has a social dimension, unless the sufferer is a hermit, then again, perhaps especially if a hermit.
CFS and ME are just labels, and ones that are not particularly brilliantly used. Labels are powerful, can be controversial (as the article above suggests) and in general can be useful. They can also be obstacles to further assessment, sources of stigma and sometimes so wrong as to be dangerous. At the end of the day one is wise to remember that they are just labels.
The condition or conditions to which those labels refer are associated with considerable personal suffering. The sufferers need and ask for help. No one yet has all the answers as to how best to provide the help. Given the complexity of the condition, when properly understood, every approach that seems at all reasonable and certainly all that have already proven of some benefit, should be pursued.
So please think again before calling for any doors to be shut. I treat chronic fatigue with a quite holistic approach with good results. Indeed, with excellent results compared with many others who don't seem able to achieve any improvement that could not reasonably have been expected to occur without treatment. My reasoning based on careful observation leads me to the conclusion that we certainly don't need yet another pill. People are insanely over medicated already. People recover from these conditions without "anti-CFS" drugs.
"There are three kinds of lies: lies, damned lies, and statistics", Benjamin Disraeli.
White et. al., have worked verry hard to uprate there outcomes of 'recovery'.
1. The population is not representatieve because the patiënts were able to travel to therapists (much patiënts can't),
2. Changing protocol after research is scientifcly not done,
3. White e.a. suits are standard for recovered CFS patients in the following objective way:'' The mean (SD) scores for a demographically representative English adult population were 86.3 (22.5) for males and 81.8 (25.7) for females (Bowling et al 1999) . We derived a mean (SD) score of 84 (24) for the whole sample, giving a normal range of 60 or above for physical functioning''.
The minimum score or above for normal physical functioning according table 3 presented data (Bowling et al 1999) compared with the norm of White e.a. but now taking statistically correct age into account gave us the following results: (16-24) score: 83.4 (25-34) score: 81 (35-44) score: 79.9 (45-54) score: 66.3 (55-64) score: 51.7
‘’The average age of the participants in the study of White et al, 38, 77% of them were female and 93% were of white ethnicity’’. The average age of CFS patients is 38. You can see in table 3 that the studied group of CFS patients have a mean age of 38 and falls in category age (35-44 years) tabel3. The minimum score or above for normal physical functioning for this group (35-44) is a score of 79.9. This is much higher then the score 60 stated by white e.a.
In summary: You can see that the average score in the rise of the age significantly decreases. A certain group of age may thus greatly affect the outcome. According to White et al 2013, 22% of CFS patients after following cognitive behavioral therapy restored. These researchers use a minimum score or above 60 physical functioning Rand-36 in general 84 (24). This data was not broken down into different groups of age. The average age in the study by White e.a. was 38 years. This requires a minimum score or above 79.9 for physical functioning according to the presented dat table 3 (Bowling et al 1999). The norm of recovery need to be adjusted for each group by age. The percentage of CFS patients (22%) that meets the standard definition of recovery state to discussion.
White e.a. would have to make a breakdown into different age groups and adjust the standard recovery norm for these groups by presenting the data.
The authors of this PACE trial study are using a deceptive trick to get their apparently good results.
These researchers concluded in the abstract of their PACE study that:
"This study confirms that recovery from CFS is possible, and that CBT and GET are the therapies most likely to lead to recovery."
However, these authors are distorting the truth by using trickery of language centered on the word "recovery."
Their deceptive trick is this: these authors redefine the meaning of the word "recovery" within body of the text of their study, so that, under this new meaning of the term "recovery," many ME/CFS can be said to be, ahem, "recovered" following the GET/CBT therapies used in the PACE trial.
However, if you only read the study's abstract, there is no indication that the word "recovery" used therein has been totally redefined by the authors, and thus the causal reader will erroneously assume that the word "recovery" just carries its normal English meaning, which in the dictionary is defined as "a return to a normal state of health, mind, or strength."
Thus many people causally reading this PACE study authored by White, Goldsmith, Johnson, Chalder and Sharpe will be led to erroneously believe that GET/CBT therapies can return a ME/CFS to a normal state of health, which is not the case at all.
I think this deceptive trick used by the authors is a genuine case scientific misconduct.
If you are going to redefine your terms and the words you use, you need to make sure that the precise definitions of these terms are clearly given, so that there can be no misinterpretations.
It seems apparent that the authors of this PACE study actually want their completely redefined word "recovery" to be misinterpreted. Thus, this is not a mistake by the PACE study authors, but is deliberately deceptive.
This deceptive PACE study publication should be reported to an appropriate body within the UK National Health Service (NHS), otherwise busy NHS doctors, who only have time to scan study abstracts, may read this PACE study abstract, and then get the completely incorrect impression that the GET/CBT therapies used in the PACE trial can actually cure ME/CFS, which they cannot at all.
It is a well know fact that many patients live by the boom and bust cycle of CFS/ME so it could be statistically stated that the 22% of so called recovered patients were in the boom cycle of the illness and that in the following year they could easily suffer a relapse and be as ill or even worse than before. Research money would be better spent on finding a proper cure for the illness rather than repeating old research studies that have been done before.
The previous pace trial tells me all i needed to know that CBT and GET it did not cure ME there is in fact no cure . I dont need another pace trial to tell me what i already know that the majority are not cured by CBT OR GET . The Minority that did recover did they have ME or were they just chronically tired and is this trial just as flawed as the first? My other concern here is will they ever stop researching their own psychalogical back of beyond for reasons keeping themselves busy as psychiatrists messing around with ME CFS without ever wanting or needing to do anything meanigful or constructive , the money keeps comeing in and they want more reaserch into a psychalogical cause to promote the non cures CBT and GET why? Maybe the answer is simple ME is not psychological at all, CBT and GET do not cure ME and you don't need to waste any more research funding on psychiatrists to find out.
Accurate reporting please - study does not include the housebound/severely effected
posted by Paul Gadsden on 2 Feb 2013 at 5:17 am
This is dangerously misleading.
The PACE trial was conducted using incredibly vague criteria i.e the oxford criteria and still only 1/5 reported improvement, around 15% over standard medical care. We have no idea which subset of patients this is thanks to the entry criteria.
The term recovery has been twisted to such an extent that people who still remain fairly sick are considered recovered.
This study does not include the housebound/severely effected.
I'm glad some people found improvement but lets not break open the champagne just yet. The PACE trial clearly states "moderate improvement" but it seems it's acceptable to use the term recovery which will filter down to GPs and the public giving an unrealistic belief in the effectiveness of these treatments.
Misdiagnosed in 1995 I received only drug therapies. CFS/FMS were treated as the same thing. Now on the right tract. I know drugs alone are not the complete answer. CBT along with as much exercise as I can tolerate has finally combined to not just mask but improve symtoms. These all need to work together. The right meds with therapy and activity that's not punishment.
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