For Jessica Bavinton
Posted: Fri Aug 16, 2013 9:24 pm
I had thanked TalkHealth for providing a place where patients could discuss the available evidence for treatments they may wish to pursue with those who are providing them. However, as my post was deleted, and the thread locked, I would instead be interested in having them explain why they seek to prevent patients discussing the evidence we have available to us? I saw that the moderators had edited someone else's post as they claimed it included an unfounded claim about Jessica Bevinton, but I have referenced my statements.
If we are not able to discuss these matters, or if patents are expected to meekly accept whatever story is being presented to them, then it is likely that misleading claims will continue to be spread, harming patient's ability to make informed decisions about their own lives and health-care.
Re: GET - useful or risky?
Post by Laurellen on Fri Aug 16, 2013 7:07 pm
It is sad to see that, despite having started by talking about the need to look at the evidence rather than being distracted by anecdotes, we now see Jessica Bavinton respond to the specific points being made by patients about the available evidence with links to anecdotes, just like those which she uses to promote herself on her website.
What about research which is run by those who have built their careers on promoting CBT and GET as highly effective interventions for CFS, and claims to show CBT and GET are somewhat effective interventions for CFS?
How sceptical should we be of the claims of someone who makes their money from GET for CFS?
I think that we should always try to look very carefully at the available evidence, to see if their self-interest has led them to make misleading claims.
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.
If we are not able to discuss these matters, or if patents are expected to meekly accept whatever story is being presented to them, then it is likely that misleading claims will continue to be spread, harming patient's ability to make informed decisions about their own lives and health-care.
Re: GET - useful or risky?
Post by Laurellen on Fri Aug 16, 2013 7:07 pm
It is sad to see that, despite having started by talking about the need to look at the evidence rather than being distracted by anecdotes, we now see Jessica Bavinton respond to the specific points being made by patients about the available evidence with links to anecdotes, just like those which she uses to promote herself on her website.
Jessica Bavinton wrote:I will give you an example to consider: We shouldn’t trust research telling us the cure lies in eating lots of tomatoes if it’s sponsored by the tomato producers, had only 5 people participating, 3 drop-outs and wasn’t accepted by a credible publication. Before tomato producers get upset with me, that was just an example!!
What about research which is run by those who have built their careers on promoting CBT and GET as highly effective interventions for CFS, and claims to show CBT and GET are somewhat effective interventions for CFS?
How sceptical should we be of the claims of someone who makes their money from GET for CFS?
I think that we should always try to look very carefully at the available evidence, to see if their self-interest has led them to make misleading claims.
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:
http://www.pacetrial.org/faq/faq2.html
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.