Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

Dx Revision Watch said:
Indeed. One thing's for sure, it will be interesting to see what Crawley does next (and how much funding she's awarded for doing it).

I see she's getting funding from the Prudence Trust for mental health studies:
May 2022
Improving adolescent mental health by automating and optimising remote treatment using STTAMP: Sleep Tracking & Treatment for Adolescent Mental health Problems. 1.1 million (including clinical PhD funding). 2022 – 2025. Funder Prudence Trust. Esther Crawley (PI), Co-applicants: Lucy Yardley, John Macleod, Ian Nabney

February 2022
Prudence Trust Early Career Fellowship: £400,000 for adolescent mental health. Crawley E: Commencing summer 2022

November 21
Esther Crawley: Partnership grant with the Prudence Trust: Prevention and Early Intervention of adolescent mental health problems. Lead: Esther Crawley.
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From the Prudence Trust website:
Very few people now doubt the importance of mental health and illness to individuals, families and society. What makes the Prudence Trust different is that they want to help build the evidence to decide what to do and, what not to do.

PROF SIR SIMON WESSELY
MEMBER OF THE PRUDENCE TRUST MENTAL HEALTH ADVISORY PANEL
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Dx Revision Watch said:
https://www.bristol.ac.uk/academic-...arch/cfsme/magenta/magenta-trial/magenta-pis/

MAGENTA study documents for participants

Patient information sheets

All our patient information sheets have received ethical approval and were developed with support from with the CFS/ME Patient Advisory Group (PAG). The information sheets have been designed with the patient's age in mind and as such we have three different versions which can be viewed below:

Patient Information Sheets for Participants Aged 8- 11 Years of Age PIS 8-11 (PDF, 270kB)

Patient Information Sheets for Participants Aged 12- 17 Years of Age ‌PIS 12-17 (PDF, 354kB)

Parent/ Carer Information Sheet ‌PIS parent/ relative (PDF, 376kB)



Patient Information Sheets for Participants Aged 12- 17 Years of Age ‌PIS 12-17 (PDF, 354kB)

"In addition you will get either Activity Management or Graded Exercise Therapy.

"Activity Management

If you are in this group you will have a detailed assessment of the activity you do. This includes thinking activity such as school work, homework, time on the computer and screens, reading and hobbies that require concentration and physical activity such as walking or PE. We call MAGENTA PIS 12-17 31082016 v0.9 3 this high energy activity. We will ask you to record your activity on paper or our iPhone app “ActiveME”. We will then help you find your “baseline” activity which is the average amount of activity that you can do each day. When you have found your baseline activity, we will help you increase this by 10-20% each week. This is called activity management. Graded Exercise Therapy If you are in this group you will receive a detailed physical assessment including how far you can walk in 2 minutes and how many times you can move from sitting to standing in one minute. This will help us set a safe exercise programme. You will be asked about the exercise you do each day and will be helped to find you exercise baseline. The baseline is the average amount of exercise you do each day. It will be less than you do on a good day. When you have found your baseline, we will ask you to slowly increase you exercise. When you are able to do 30 minutes each day, we will increase the intensity of your exercise. You will be asked to record exercise using either charts or the iPhone app ActiveME. You will not be asked to record other activities, only your exercise. To make sure you do not over do your exercise, we will ask you to use a heart rate monitor.

"What is the difference between Activity Management and Graded Exercise Therapy?

"Activity Management will mainly be working on activities that take up most of the day like school work. It does not focus on exercise or include a physical assessment or heart rate monitoring. Graded Exercise Therapy gives detailed advice about exercise with an assessment of your exercise and uses a heart rate monitor. Graded Exercise Therapy will not ask you to monitor other activities such as school work."


From the info sheet for parent/carers:

"Children in both groups will be asked to wear an accelerometer. This is a small box that they will wear on a band around their hips. Lots of young people have used these to measure exercise. We may ask your child to record when they wear it and when they take it off. In addition, your child will get either Activity Management or Graded Exercise Therapy Activity Management If your child is in this group they will have a detailed assessment of the total activity they do each day. This will mainly be thinking activity such as school work, homework, time on the computer and screens, reading and hobbies that require concentration. It will also include the amount of time spent doing physical activity such as walking or PE but we will not ask for any detail of exercise or for this to be recorded separately. We call all of this “high energy activity”.

"We will ask your child to record this on paper or our iPhone app “ActiveME”. We will then help them find their “baseline” activity which is the average amount of activity that they do each day. When your child has found their baseline, we will help them increase their activity by 10-20% each week.

"Graded Exercise Therapy

"If your child is in this group your child will receive a detailed physical assessment including how far they can walk in 2 minutes and how many times they can move from sitting to standing in one minute. This will help us set a safe exercise programme. Your child will be asked about the exercise they do each day and will be helped to find their exercise baseline. The baseline is the average amount of exercise they do each day. It will be less than they do on a good day. When they have found their baseline, we will ask them to slowly increase their exercise. When they are able to do 30 minutes each day, we will increase the intensity. They will be asked to record exercise using either charts or the iPhone app ActiveME. They will not be asked to record other activities, only their exercise. To make sure your child does not over do the exercise, we will ask them to use a heart rate monitor.

"What is the difference between Activity Management and Graded Exercise Therapy?

"Activity Management will work on the total amount of activity done each day. This is mainly thinking activities. It does not provide specific advice about exercise include a physical assessment or heart rate monitoring. Graded Exercise Therapy provides specific advice about exercise with a physical assessment and uses heart rate monitoring."
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"If your child is in this group ***GET*** your child will receive a detailed physical assessment including how far they can walk in 2 minutes and how many times they can move from sitting to standing in one minute. ****This will help us set a safe exercise programme.****"

What? Like how? How was this ever allowed in CHILDREN when there was already evidence of exercise and activity intolerance in pwME.

No more.
 
MEMarge said:
They now call their "service":
Specialist Treatment for Children & Young People with Fatigue

https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp?menu_id=1
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Professor Crawley and her team see over 450 children with Chronic Fatigue a year and provide a specialist service for the assessment, diagnosis and treatment of any child or young person who has Chronic Fatigue and needs help.

We have particular expertise in helping and supporting children who are severely affected, as well as children whose case may be complicated by more than one problem. The outlook for children with Chronic Fatigue who access appropriate treatment is excellent, with most making a good or complete recovery. We therefore aim for recovery.
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Most making a good or complete recovery? How are they able to get away with these shameless statements?
 
Re the very recently set up Prudence Trust that has been funding Crawley and has Wessely on the advisory panel handing out the grants:

It seems to give out small sums to lovely sounding mental health charities and then each year it gives out great whacks of money e.g. 600,000 pounds each, to the 4 universities that are hotbeds of BPS thinking - Bristol, KCL, Oxford

I did wonder if there was an insurance company link e.g. the insurance company Prudential has a Prudence Foundation operating in Africa and Asia.
But the founder of the Prudence Trust is Prudence Murdoch MacLeod, which probably is a satisfactory explanation for the very large amount of capital put into the charity. And, from Wikipedia, it sounds as though she had a tough childhood, so that might explain her focus on mental health in young people.
 
It occurs to me that this trial might be the first one in which the investigators essentially reported that the actigraphy and the subjective data match. In other studies, they always hide the actigraphy data and/or publish it later because it contradicts the increases they can eke out from the subjective ones. In this case, no point in hiding it since they already had null results on the primary outcome. But, in a backhanded way, thanks to Esther for publishing her actigraphy findings alongside her main findings--this crowd is known for the opposite,
 
Keela Too said:
Do studies never have to define this?
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Not psychosomatic studies. They can use whatever 'methodology' they want, and change it arbitrarily whenever they want.

Plus they will always have the fallback that there simply must be a psychological component to everything humans do, a 'functional overlay', to use their current parlance.

Sid said:
How are they able to get away with these shameless statements?
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Because not only is there no (or only minimal) cost to them, they are being well rewarded for them.

The only possible conclusion is that those in political and economic power value very highly the excuses that the likes of Crawley offer for them to hide their shitty inaction and policies behind, and are prepared to provide lots of support and protection to prevent those excuses from being taken off the table.

There is simply no way to get away with that kind of shameless behaviour for so long without consistent high level support and protection from the rest of the power structure.

That is why it is taking so long and such a high cost to get it changed. It is not just one little corner of medicine that has gone rogue on this. It is a deeply entrenched systemic failure in governance.
 
Sean said:
Not psychosomatic studies. They can use whatever 'methodology' they want, and change it arbitrarily whenever they want.

Plus they will always have the fallback that there simply must be a psychological component to everything humans do, a 'functional overlay', to use their current parlance.


Because not only is there no (or only minimal) cost to them, they are being well rewarded for them.

The only possible conclusion is that those in political and economic power value very highly the excuses that the likes of Crawley offer for them to hide their shitty inaction and policies behind, and are prepared to provide lots of support and protection to prevent those excuses from being taken off the table.

There is simply no way to get away with that kind of shameless behaviour for so long without consistent high level support and protection from the rest of the power structure.

That is why it is taking so long and such a high cost to get it changed. It is not just one little corner of medicine that has gone rogue on this. It is a deeply entrenched systemic failure in governance.
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Terrifyingly true.
 
Hutan said:
Re the very recently set up Prudence Trust that has been funding Crawley and has Wessely on the advisory panel handing out the grants:

It seems to give out small sums to lovely sounding mental health charities and then each year it gives out great whacks of money e.g. 600,000 pounds each, to the 4 universities that are hotbeds of BPS thinking - Bristol, KCL, Oxford

I did wonder if there was an insurance company link e.g. the insurance company Prudential has a Prudence Foundation operating in Africa and Asia.
But the founder of the Prudence Trust is Prudence Murdoch MacLeod, which probably is a satisfactory explanation for the very large amount of capital put into the charity. And, from Wikipedia, it sounds as though she had a tough childhood, so that might explain her focus on mental health in young people.
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Thanks for looking into this, Hutan.
 
It’s very surprising to see this trial so transparently reported. Perhaps the huge pushback on SMILE (and the whole debacle of having nearly the whole article corrected post-publication) made them think it wasn’t worth going through the same hassle this time. Magenta results are so bad there’s simply no way to spin them. So they sat on the results for 5 years and strategically dumped them long after the NICE literature review etc.
 
Hutan said:
From the Prudence Trust website:...PROF SIR SIMON WESSELY
MEMBER OF THE PRUDENCE TRUST MENTAL HEALTH ADVISORY PANEL

It seems to give out small sums to lovely sounding mental health charities and then each year it gives out great whacks of money e.g. 600,000 pounds each, to the 4 universities that are hotbeds of BPS thinking - Bristol, KCL, Oxford
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Mmm, that's very cosy.
 
Sid said:
Most making a good or complete recovery? How are they able to get away with these shameless statements?
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Hence why they go back and forth between claiming that trials prove them right, when the latest trial or review sort of claims so, but when the latest one shows otherwise, they move back to their clinical experience, which cannot be proven since it's all private and no records are kept.

The thing about politically motivated research is that it can be argued to be apolitical when there is an overwhelming belief in the specific outcome they are creating. It only seems political when it goes against the culture. So they can do the most politically-motivated pseudoscientific research while demonizing us as activists who are against research, even though they're completely wrong and we were always completely right.

Humans are freaking weird.
 
rvallee said:
Hence why they go back and forth between claiming that trials prove them right, when the latest trial or review sort of claims so, but when the latest one shows otherwise, they move back to their clinical experience, which cannot be proven since it's all private and no records are kept.

The thing about politically motivated research is that it can be argued to be apolitical when there is an overwhelming belief in the specific outcome they are creating. It only seems political when it goes against the culture. So they can do the most politically-motivated pseudoscientific research while demonizing us as activists who are against research, even though they're completely wrong and we were always completely right.

Humans are freaking weird.
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Prof Crawley had started a number of research projects looking at new psychological interventions (modified CBT) to use with children who were not cured by her clinics previous intervention, even though by her previous claims such children didn’t exist. Is it a mixture of her realising that her outcomes were not actually as perfect as she thought and struggling to get sufficient subjects for GET/CBT research, whereas the clinic provides ongoing opportunity to select compliant primed subjects?
 
I feel so worried for the children who’ve been put through any of this stuff, because when you have ME you’re so desperate not to have ME. You’re also deprived of kindness. A few kind words from a researcher said in a gentle tone can give such relief and comfort. But it seems that too often that dries up if or when one fails to thrive under the researchers requirements.

But even if a researcher is nothing but kind no matter how a child responds, sooner or later any child who remains sick after being reassured that they would improve if only they worked hard and smart enough on a consistent basis will likely feel either horribly betrayed or like a failure.

I was an adult when I did something similar and I already had an understanding that ME wouldn’t be amenable to positive thinking and routine making. But I still thought that learning new tips and techniques for optimisation of general management of life stuff
would help me make more efficient use of the little energy I had, and leave a bit more space for life enhancing activities.

I have never gotten over the psychological damage caused by that psychological therapy, considering my physical capacity actually decreased substantially following the therapy taking my psychological resilience down with it.

The clinic people were genuinely working hard to help and they did give specific and essential practical assistance. But these efforts were sucked into the vortex left by their collective underlying conviction that ME was somehow something manageable, and that doing rehab and being disciplined makes it better.
 
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Ash said:
their collective underlying conviction that ME was somehow something manageable
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Whereas it's more like my neighbour's toddler grandson. When shown his favouritest soft toy, she said "Oh, you've got a green dragon!". He then had a half hour tantrum because he didn't want it to be a green dragon, he wanted it to be a blue one.

There's no reasoning with it.
 
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