Countrygirl
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Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol
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Countrygirl
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It did leave me with the impression that Jen was being invited to meet Esther C, possible with the aim of EC taking back control of the narrative. I hope Jen is aware of the problem there.
Molly98
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Yes, Dr Hammond really pushed the "well many patients do respond to GET CBT approach".
I wonder if Jen knew beforehand that he works for/ with Esther Crawely and that children with severe ME at this clinic are labeled with psychiatric conditions and families referred to child protection services.
I wonder if she also knew that the research he was referring to was probably FITNET and the SMILE trial.
I thought Jen did a great job considering and showed his knowledge to be greatly lacking, especially when she talked about the two day CEPT test etc to provide accurate measurements of what exercise/ activity is safe.
And pointed out that what he was describing ie. reducing exercise was known as PACING not GET.
I wonder if Jen knew beforehand that he works for/ with Esther Crawely and that children with severe ME at this clinic are labeled with psychiatric conditions and families referred to child protection services.
I wonder if she also knew that the research he was referring to was probably FITNET and the SMILE trial.
I thought Jen did a great job considering and showed his knowledge to be greatly lacking, especially when she talked about the two day CEPT test etc to provide accurate measurements of what exercise/ activity is safe.
And pointed out that what he was describing ie. reducing exercise was known as PACING not GET.
NelliePledge
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Not listened yet. I’d be very surprised if #MEaction folks hadn’t fully briefed Jen. I’m sure she relished the challenge.
Edited to add and of course only a local radio station programme not widely disseminated to the general public across the UK so limited impact compared to ITV news etc
CFSTheBear
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The thing is, is that without a biomarker, many patients diagnosed under the incredibly vague umbrella of ME/CFS will continue to benefit from GET. It's highly unlikely they have ME/CFS, but another disorder (POTS seems like it could be a big misdiagnosis). This makes it very difficult for Joe Public to understand the nuances of the debate. I think the nuances need to be addressed when trying to convert people too.
There's really no evidence that many patients with ME/CFS/CF or whatever definition you take benefit from GET. PACE was so inclusive that all it really studied was people with some sort of fatigue and they came up empty.
CFSTheBear
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I'm not disputing that. PACE was a mess and GET is a waste of time. My point is that because some people will inevitably benefit, when it comes to a radio programme which doesn't allow for anything like real-time correction - it can be truthful and easy to say "some of the people we see benefit from this". It doesn't mean they have the same illness as us.
I'm quite sure that Jen is highly informed on EC, GETSET, FITNET, SMILE and who Phil Hammond is etc. Even I have a detailed knowledge about these topics and I'm just a foreign sickie in bed.
The topic ME is her life, she spent years researching the history and politics and talking to pwME around the world, works with MEAction UK, prepared a letter for MPs, is informed on NICE, Unrest has a special professional impact team based in the UK - so I'm convinced that she's perfectly prepared and knows exactly what she's getting into. These topics might even be one reason that the UK gets its own impact campaign.I agree. I interpreted her words like she did that but was too polite to say "well you seem to misdiagnose these kids, no wonder if you use the NICE criteria" and instead talked about "stricter diagnosis criteria in the US".
NelliePledge
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Yes I think the prize gained through talking with him is that patients carers who maybe know him and the Bristol service & take it on face value may be encouraged to see the film and be educated with a wider non NHS perspective that they might not be seeking.
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The point Solstice is making is actually an incredibly important one. Even in the ME/CFS community a lot of people seem to think that some people in the various CBT / GET trials have been benefiting from CBT / GET. What PACE and other trials seem to show is that actually no one, benefits from CBT / GET if you look at the objective outcomes. Even non-ME/CFS patients do not get better. Which honestly, even I had not foreseen.
This is also one of the reasons behind a lot of the problems / controversy behind the PACE trials. The PACE trial scandal is part of a bigger problem where psychiatrists have relied on subjective outcomes to get the results they wanted in the past. If a psychiatrist went out and criticized the PACE-trial for lack of objective outcomes, they would often end up indirectly criticizing their own work.
So instead the trial had to be criticized for other weaker points, which has sadly helped spread misinformation about PACE, and hasn't given the trial the strongest criticism it deserved. Yes, the trial has countless severe flaws. But in the end, none of them really matter.
A trial with over 600 participants showed that none of the participants actually got better from the treatment they received, and in the end, isn't that the only argument we need?
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Or we could say something along the lines of
"due to the high rate of poor and mis-diagnosis in the UK some people report responding to all kinds of things"
or
"that's why we need better testing of patients in the UK so they can be split into those with ME and those will other illness that respond to exercise"
or
"That's why we need a bio-marker to cut down on mis-diagnoses which is a big problem in the UK"
There are lots of ways of saying this and sure to be much better ways than I could when put on the spot.
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Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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I'm quite sure that Jen is highly informed on EC, GETSET, FITNET, SMILE and who Phil Hammond is etc. Even I have a detailed knowledge about these topics and I'm just a foreign sickie in bed.
Joh, I think you mean:
MEAction Network UK
http://me-pedia.org/wiki/MEAction_Network_UK
which is the UK arm of
http://www.meaction.net/
not to be confused with
Stephen Ralph's
MEActionUK
http://www.meactionuk.org.uk/
which has been established since 1998.
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I just listened and thought she did a great job when he waffled. It seems he's not clear on the problems with the research, or maybe he is but he has to toe the party line. He did concede that more research is needed in general, and also mentioned the severely affected in particular.
The film maker, Lindsay, was excellent, clearly was well briefed and I think it was she who brought up the nice guidelines review.
The film maker, Lindsay, was excellent, clearly was well briefed and I think it was she who brought up the nice guidelines review.
meandthecat
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Just listened to the interview, Dr Phil was outclassed. He waffled, his lack of precision emphasised the weakness of his intellectual position.
Well done Jen and Lindsey, a formidable team.
Well done Jen and Lindsey, a formidable team.
Me neither.
They got nothing on objective measures, results on subjective measures that are marginal at best and of no practical benefit, and no correlations between objective and subjective measures.
In short, they got nothing.
And the "definitive" PACE confirmed it.
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Cinders66
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The MAGENTA GET trial recruits with NICE criteria
It seems an unethical trial because it's GET vs Activity management. In the GET group only exercise levels are monitored and advised on, how can one activity be treated in isolation within the kids general lives (assuming the kids are at school, the days will vary). The activity management group aren't advised on exercise beyond brief advice in terms of duration, explicitly they are not to be told about heart rate monitoring yet these kids might still be doing PE, walking around in their daily lives
Here are some quotes:
Activity management will be delivered by CFS/ME specialists (occupational therapists, physiotherapists, nurses, psychologists). As Activity Management is currently being delivered in both services, therapists will not require further training however therapists will receive guidance on the Mandatory, Prohibited and Flexible components detailed below. Activity management aims to convert a “boom-bust” pattern of activity (lots one day and little the next) to a baseline with the same daily amount. For children/adolescents with CFS/ME these are almost entirely cognitive activities: school, school work, reading, socialising, and screen time (phone, laptop, TV, games). Those allocated to this arm will receive advice about the total amount of daily activity, including physical activity, but will not receive specific advice about their use of exercise, increasing exercise or timed physical exercise.
.........
"When participants have managed the baseline for 1-2 weeks, they will be asked to increase this by 10-20% each week5. Therapists will discuss problems encountered by participants and provide possible solutions.
Managing setbacks will be discussed (how much to reduce school and other cognitive activity and for how long). Participants will continue to increase activity until they are able to do at least 8 hours of cognitive activity a day.
Therapists will complete a tickbox checklist for each session to record which mandatory elements were provided.
Prohibited: Discussion about number of steps, minutes of exercise, aerobic, versus non aerobic activity. No discussion about increasing physical activity (only discussion about increasing overall activity). No advice on exercises or using a strengthening programme"
Flexible: Advice on PE in school (no PE, half a lesson, full lesson). Attendance at sporting events (do not attend, attend limited period of time). Children and young people can record physical activity within the total cognitive activity but are not required to do so.
https://www.whatdotheyknow.com/request/368381/response/902419/attach/3/MAGENTA Protocol.pdf
It seems an unethical trial because it's GET vs Activity management. In the GET group only exercise levels are monitored and advised on, how can one activity be treated in isolation within the kids general lives (assuming the kids are at school, the days will vary). The activity management group aren't advised on exercise beyond brief advice in terms of duration, explicitly they are not to be told about heart rate monitoring yet these kids might still be doing PE, walking around in their daily lives
Here are some quotes:
Activity management will be delivered by CFS/ME specialists (occupational therapists, physiotherapists, nurses, psychologists). As Activity Management is currently being delivered in both services, therapists will not require further training however therapists will receive guidance on the Mandatory, Prohibited and Flexible components detailed below. Activity management aims to convert a “boom-bust” pattern of activity (lots one day and little the next) to a baseline with the same daily amount. For children/adolescents with CFS/ME these are almost entirely cognitive activities: school, school work, reading, socialising, and screen time (phone, laptop, TV, games). Those allocated to this arm will receive advice about the total amount of daily activity, including physical activity, but will not receive specific advice about their use of exercise, increasing exercise or timed physical exercise.
.........
"When participants have managed the baseline for 1-2 weeks, they will be asked to increase this by 10-20% each week5. Therapists will discuss problems encountered by participants and provide possible solutions.
Managing setbacks will be discussed (how much to reduce school and other cognitive activity and for how long). Participants will continue to increase activity until they are able to do at least 8 hours of cognitive activity a day.
Therapists will complete a tickbox checklist for each session to record which mandatory elements were provided.
Prohibited: Discussion about number of steps, minutes of exercise, aerobic, versus non aerobic activity. No discussion about increasing physical activity (only discussion about increasing overall activity). No advice on exercises or using a strengthening programme"
Flexible: Advice on PE in school (no PE, half a lesson, full lesson). Attendance at sporting events (do not attend, attend limited period of time). Children and young people can record physical activity within the total cognitive activity but are not required to do so.
https://www.whatdotheyknow.com/request/368381/response/902419/attach/3/MAGENTA Protocol.pdf
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NelliePledge
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Yes @Cinders66 this ties in with GETSET Julie doesn't it where the "working out the baseline" phase lasted one or two weeks. So either the people on the trials are given something different to what happens in normal practice in the Bristol clinic. Or when Phil Hammond says they tell people to reduce activity he is talking about this 1-2 week baseline period. And I seem to remember the activity GETSET Julie had to reduce significantly was sleeping!!!!!
So literally anything objective is intentionally disallowed? Do they give any reasons for that apart from words they made up for this specific situation (i.e. 'this is a behavioural intervention, what this means depends on what would suit us in any given context')?