Will Bavinton respond to the specific points about spin?

This clinic did not cover questions in regard to funding, research or complaints against the NHS. Such questions need to be addressed to the local GPC (General Practitioner Council). However as there was so much interest on these subjects we have left many of them under this heading for viewing but they are intentionally not answered by the panel.

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by Laurellen on Tue Aug 20, 2013 12:50 pm

Will Bavinton respond to the specific points about spin?

It seems that we have fallen into a strange situation where, when Bevinton mentions or quotes from research this is seen as acceptable. When patients point out how misleading some of Bevinton's claims are, this is treated as a 'research discussion' which should be deleted or locked. There is a serious danger that this will lead to some patients being misled by claims on this forum.

As an example of one of my own earlier comments:
Jessica Bavinton wrote:Here is a small snippet that helps people understand a bit more about the PACE trial and what it showed:

"Both cognitive behaviour therapy (CBT) and graded exercise therapy (GET), when combined with specialist medical care (SMC), were more effective in reducing fatigue and improving physical functioning than adaptive pacing therapy (APT) when combined with SMC, and SMC alone. Approximately 12 out of 20 patients made a clinically useful reduction in fatigue and improvement in functioning with either CBT or GET compared to about 8 out of 20 with APT and 9 out of 20 with SMC. Twelve months after starting in the trial, 3 out of 10 participants were within normal population ranges for both fatigue and function, following CBT and GET, which were approximately twice as many participants than after APT and SMC. This means patients were more able to do things we all take for granted such as carrying shopping, or walking up a flight of stairs. This level of improvement is what we would expect in the treatment of other chronic disabling conditions. Being within the normal population range for these two outcomes does not necessarily mean the patient had recovered from CFS, so we are analysing separately the numbers of patients who recovered after treatment." http://www.pacetrial.org

There are some Frequently Asked Questions also on this site for people wanting to know more:

This is a useful snippet.

It needs to be recognised that the PACE paper came up with a new criteria for a 'clinically useful' improvement which was far looser than their protocol's criteria for overall improvers. However, even by this weak criteria, which required only minor changes in patient questionnaires, and using their approximations, the addition of CBT and GET to patient's medical care only saw an additional 3 in 20 patients report improvement. Given the likelihood or response bias, and the similar rates of improvement we see for placebo interventions or homeopathy, this is not an impressive results, or indicative that CBT or GET are worthwhile interventions for the typical patient.

The claims about 'normal' levels of fatigue and disability are particularly misleading. Both fatigue and disability were measured using questionnaires, so will be prone to response bias if patients are encourage to think 'positively' or believe that they have greater control over symptoms, but more importantly, the PACE researchers had redefined what they claimed were 'normal' levels of fatigue and disability after they had ended the trial. A patient who had been classed as suffering from severe fatigue and disability at the start of the trial could be classed as having 'normal' fatigue and disability at the end of the trial even if they completed their questionnaires in exactly the same way. For the measure of disability used, they could even have got worse! An SF36-PF score of 65 was taken to indicate severe and disabling fatigue at the start of the trial, while the protocol required a score of 85 for a patient to be classed as recovered. By the end of the trial, when the researchers decided that they needed to come up with new definitions of 'normal', a patient scoring just 60 could be considered 'normal' or even 'recovered'.

I would encourage everyone to check this for themselves. The PACE protocol (where the PACE researchers laid out the criteria they would used at the start of the trial - publishing protocols is one way of preventing researchers from manipulating results when they know how a trial is going, but it only works if researchers do not deviate from their protocol) is available here: http://www.biomedcentral.com/1471-2377/7/6

The PACE paper is available here: http://www.thelancet.com/journals/lance ... 2/fulltext

In the PACE paper it is claimed that a score of 60 represents the mean - 1 sd of the scores for the working age population, however this is not true, as can be seen when you check the paper they cite, available here: http://jpubhealth.oxfordjournals.org/co ... 3/255.long

By responding to the concerns of patients with links to supportive letters from members of the House of Lords, Jessica Bavinton seems to be trying to encourage people to trust authority rather than look at the evidence, as if the opinions of a Baroness matter more than what the data shows. This is a serious mistake. The truth is important, and that so many of those making money from CFS seem to think it is acceptable to make misleading claims to patients is a serious problem. ... Hopefully Jessica Bavinton will now attempt to start responding to some of the specific problems being mentioned.

Further discussion can be found throughout the forum:


There now seems to be an attempt to pretend that a statement from the PACE trial PIs is an adequate responce to the concerns expressed by patients, but again, responses to this are locked, and no attempt to engage in any real discussion is made. If there were any real confidence in the claims being made, then one might expect a more genuine and open debate to occur.