Esther12
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http://webcache.googleusercontent.com/search?q=cache:ya-oQep9QR8J:results.ref.ac.uk/(S(1x5usno2sjtyyfwoj2a5u0g5))/DownloadFile/ImpactCaseStudy/pdf?caseStudyId=18135 &cd=3&hl=en&ct=clnk&gl=uk
Nothing that important.
I pulled out about 25% of it for people who only want a taster, but it's not that long.
Why the contorted 'recovered their health' rather than 'recovered'? Anyone want to guess? The phrasing is repeated later too.
The P2P Evidence Review was critical of the PACE trial's recovery paper, and this commentary pointed out a number of problems with it too: http://link.springer.com/article/10.1007/s11136-014-0819-0
Maybe people are starting to see through the BS.
Funny to have them acting like BACME's support is impressive.
Ho-ho-ho-ho-ho-ho.
Nothing that important.
I pulled out about 25% of it for people who only want a taster, but it's not that long.
White (with Fulcher, an exercise physiologist) designed graded
exercise therapy (GET), based on the existing literature (Richard Edwards had already published
an open study of exercise for “effort syndrome”).
This work has been successfully replicated four times; systematic reviews and meta-analyses of
these studies have confirmed the efficacy of GET for CFS. White went on to show (unexpectedly)
that the effect of GET on global improvement was not mediated by a physical training effect [2], a
finding since replicated by others. However, increased exercise tolerance, measured objectively,
was mediated by increased fitness after GET [3]. This suggested that GET works as much as a
behavioural graded exposure therapy as a physical training programme; something that was
incorporated into later designs of GET trials.
In spite of this scientific support, several surveys by patient organisations claimed that GET was
often damaging, and that “pacing” (living within the limits of the illness) was most helpful. White
therefore approached a patient charity, Action for ME, who agreed to help him design and
implement an RCT to compare specialist medical care (SMC) alone against such care
supplemented by either adaptive pacing therapy (APT), GET or cognitive behaviour therapy (CBT),
the last of which had also been shown to be effective and was recommended by NICE
(www.pacetrial.org) [4].
22% of patients in the trial recovered their health after either of these treatments, compared to 7%
following SMC alone [6].
Why the contorted 'recovered their health' rather than 'recovered'? Anyone want to guess? The phrasing is repeated later too.
The P2P Evidence Review was critical of the PACE trial's recovery paper, and this commentary pointed out a number of problems with it too: http://link.springer.com/article/10.1007/s11136-014-0819-0
Maybe people are starting to see through the BS.
In a nutshell, gradually doing more is better for CFS than staying within limits
imposed by the illness. Consequent research includes an NIHR-funded RCT of guided self-help
using GET for patients with CFS (White is the PI). The Cochrane Collaboration have a systematic
review update of GET for CFS in review, and an individual patient data meta-analysis is due for
submission this year (White is a co-author).
4a: Informed and affirmed NICE guidelines for CFS and ME
As a major recommendation within its guidelines, NICE recommends: “Cognitive behavioural
therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME
and provided to those who choose these approaches, because currently these are the
interventions for which there is the clearest research evidence of benefit.” (page 30) [7]. There
have been no trials of GET in severe CFS/ME. However, partly because of an open study
conducted at Queen Mary, showing that GET helps severely disabled patients (Essame CS et al.
Journal of Chronic Fatigue Syndrome 1998; 4: 51-60), NICE recommend an activity management
programme for such patients that “draws on the principles of CBT and GET.” Since publication of
the PACE trial in 2011, NICE have publicly affirmed their recommendation of GET (and CBT) [8].
4b: Graded exercise therapy has been adopted as a standard treatment for CFS in the UK
The British Association for Chronic Fatigue Syndrome/ME (BACME) “champions evidence-based
approaches to the treatment of CFS/ME” and represents clinicians of NHS specialist services in
the UK [9]. BACME welcomed the findings of the PACE trial saying: “The PACE trial ... provides
convincing evidence that GET and CBT are safe and effective therapies and should be widely
available for patients with CFS/ME.”
BACME is supported by the National Outcomes Database [9], which holds clinical assessment and
outcome data on ~9,000 NHS patients, to allow benchmarking of effectiveness. Crawley and
colleagues compared patient outcomes across six of the largest NHS services against outcomes
after both CBT and GET in the PACE trial. Three of the services used GET; three used activity
management incorporating the principles of GET. Symptomatic improvement was similar to that
achieved after GET provided within the PACE trial [10]. However, the mean improvement in
physical disability was about a quarter of the size achieved by GET in the trial, which may be partly
explained by the fidelity of the intervention not always being optimal when implemented outside a
trial setting. One obvious difference is that some services deliver interventions in a group setting,
rather than individually as in the trial [10].
Funny to have them acting like BACME's support is impressive.
4d: Graded exercise therapy is included in guidelines for treatment of CFS internationally
Guidelines published in other countries recommend GET. For example:
• In USA, the Mayo Clinic states: “The most effective treatment for chronic fatigue syndrome
appears to be a two-pronged approach that combines psychological counseling with a
gentle exercise program.” [12]
• Also in USA, the Centers for Disease Control recommend GET; specifically White’s clinical
website: “The GET Guide 2008 by Chronic Fatigue Syndrome/ME Service at St.
Bartholomew's Hospital can be helpful in structuring your graded exercise plan.” [13]
• Australian clinical guidelines for ME/CFS recommend GET “unless severely affected” [14]
• The Norwegian Knowledge Centre for Health Services, commissioned by their
government, concluded: “Cognitive behavioural therapy and graded exercise therapy is
likely to be effective for people with chronic fatigue syndrome.” [15]
4c: Engagement with ‘lay epidemiology’ and improving public understanding of science
This research succeeded in spite of considerable opposition from activists. Some people in the
CFS/ME community have developed a ‘lay epidemiology’ comprising purely organic explanations
and hypotheses for the condition, and view psychological hypotheses as dismissive of patients’
‘real’ experiences. A vocal minority has actively opposed any research into this condition with a
psychological component and has even sought to sabotage such studies [16]. Pressure from such
activists (including threats of violence) has led some researchers to pull out of researching CFS
altogether. The approach taken at Queen Mary, as described in Section 2, has been to seek
dialogue with patients, carers and the lay public, engage with their concerns, try to understand their
explanations and seek as far as possible to work with them rather than against them.
CFS is so controversial that the House of Lords held a debate about the PACE trial in February
2013 [17]. One peer was critical, but seven others supported the trial. Baroness Northover replied
for the Government, and later wrote to White: “PACE was an example of a well conducted, robust
research study. It is with thanks to you and your team that we now have some very good evidence
that CBT and GET are moderately effective when provided alongside specialist medical care.” [18]
As part of a public relations policy to disseminate the PACE trial results, The Science Media Centre
hosted a press conference for the main paper [19]. This led to positive, world-wide coverage,
including almost all UK national newspapers as well as the New York Times, Wall Street Journal,
Sky, BBC, and ITV, and radio stations in the UK, USA and Australia.
Ho-ho-ho-ho-ho-ho.
6. White PD, Johnson AL, Goldsmith K, Chalder T, Sharpe MC. Recovery from chronic fatigue
syndrome after treatments given in the PACE trial. Psychological Medicine, 2013, 1-9. (Three
times more patients recover their health after either GET or CBT than alternatives.)