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

"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.

 

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

 

Most making a good or complete recovery? How are they able to get away with these shameless statements?

 

For those, like me, who didn't understand the reference, she is the eldest daughter of billionaire Rupert Murdoch.

 

No way so the most notorious of these evil invisible hands behind the media people has funding links to BPS research, who would have guessed.

 

Wow, thanks!! I'd completely forgotten about that post, and even seeing the headline here I don't remember anything about what I wrote. I'll have to read it before I write my write-up on the final product!!

 

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,

 

Terrifyingly true.

 

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.

 

Mmm, that's very cosy.

 

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.

 

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.

 

the article was 6,000 words, the correction was 3,000 words, and it took a 1,000-word editor's note to explain why they were letting the findings stand rather than, you know, retracting them.

 

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.

 

Ophh.