research & funding

Moderator: talkhealth

For Jessica Bavinton

Postby Laurellen on 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.

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.
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Re: For Jessica Bavinton

Postby laelowse on Sat Aug 17, 2013 9:23 am

Yes, I don't understand why so many of these threads are being closed down. I have not seen any reason for this. There has inevitably been some disagreement but this has always been polite and logically put. Surely the point of this forum is to encourage discussion on the issues that effect people with ME? We shouldn't be worried about people having different opinions!
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Re: For Jessica Bavinton

Postby Valentijn on Sat Aug 17, 2013 10:28 am

I can see why threads get closed after the question is thoroughly answered, but in many cases the answer seems to include incorrect assumptions or unasked questions. In that case, it seems important that additional information can be provided by the person asking the question, or that followup questions regarding the answer can be asked.

It felt like a bit of a hit-and-run when I asked how to differentiate between temporary symptoms and a relapse during GET, and got a response about deconditioning, sleep problems, and anxiety. How can we get meaningful answers when we can't clarify that we aren't having the problems assumed in such answers? I "worked around" it by making a new thread for my question, but it was such a pain to have to write the post out all over again. Hopefully I won't get in trouble for that.
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Re: For Jessica Bavinton

Postby ChrisofCabra on Sat Aug 17, 2013 3:06 pm

Having had a quick look at a couple of the past clinics, I get the impression those of us with CFS/ME/Fibromyalgia have both generated a higher volume of questions than average, and also shown a greater tendency to be active and challenging.

It's understandable
We get enough forced passivity at home, as we try and pace down to our limitations.
And for some of us, we get more than enough of not being listened to by medical professionals.

The experts who have kindly consented to staff this forum have been on the receiving end of both barrels of the result of the above even if not really the prime targets.

We should find space for a thread of thanks, perhaps?

Chris.
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Re: For Jessica Bavinton

Postby reneMEFMS on Sat Aug 17, 2013 4:40 pm

yes it is very kind of them to spend time and effort to do this forum I doubt very much that any of them thought that it would be simple as ME FMS is such a hard to live with hard to treat illess frustrating for those who suffer the familys and friends and the care givers themselves but all we have asked those who have offered to answer questions is to respond to our questions about why are they so sure they are right and other researchers are so wrong it isn't us patients who are at odds with their theorys etc it is other researches who are just as qualified and just as dedicated to study and help those with ME CFS FMS etc so by not answering our queries as to why their original answer isntt quite right locking the thread instead they are acting like the four psychiatrists who walked out of the meeting when the CMO report on ME was being discussed or was it NICE quidelines they walked out because they didn't get all their own way

I am just an ordinary person who happens to have degenerative joint disease ME FMS IBS TMJ allergic rhinitis BLADDER INCONTINENCE AND SLEEP DISSORDER all diagnosed by different hospital speciialists I am not out to cause trouble I am no activist just need more detailed reassurance when answers don't add up
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Re: For Jessica Bavinton

Postby reneMEFMS on Sat Aug 17, 2013 4:43 pm

They even locked down the medical advisor to the ME associations thread on pacing verses GET before any answer came from the panel and I think he was invited to the forum to answer questions
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Re: For Jessica Bavinton

Postby reneMEFMS on Sat Aug 17, 2013 4:48 pm

From 14 - 20 August 2013 NHS Choices and talkhealth will team up with ME Association, Action for ME, AYME (Association of Young People with ME), CFS Research Foundation, FibroAction and Fibromyalgia Association UK to present an Online Clinic on CFS/Fibromyalgia/ME


he was invited the list is above and it does say welcoming you to a lively discussion
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