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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Have they supplied the paper to the press it doesn't seem to have been published yet or are they expecting journalists to write the story off the press release/conference and hence not letting them see potential issues.

"Online, though not yet in print, we have a report of a good quality randomised controlled trial of the Lightning Process as part of CFS therapy, showing that it works."

Not online, yet, at least, not visible to those without a subscription for Archives of Disease in Childhood.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
Adolescents know what gaslighting is ..selection is key to results. For simple post viral fatigue and/ or anxiety and depression, ritualistic thought processes may make a difference , for ME i have serious reservations.
As i do not have much of a statistical skillset, i hope others will be able to thoroughly analyse to assess adherance to protocol and any manipulation issues.
More importantly, i hope there is a way to raise any concerns publicly
What is / was the follow up period as this is a key factor ?
@docsimsim thoughts?
 

duncan

Senior Member
Messages
2,240
I have seen an entire medical philosophy rise on the back of only three RCTs with virtually the same methodological flaws, released almost in rapid fire fashion. Because the media was won by a) the reputation of the groups endorsing the RCTs, and b) the fact that these were stamped with the scientific imprimatur of RCTs, potentially tens of thousands of patients were left with arguably inadequate treatments.

It all started with the first of those flawed RCTs, and an agonizing inability to get the media listen.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Some light entertainment while we wait


'You just walk in, I make you smile
...
Stop right now thank you very much
...
Do do do do
Do do do do
Do do do, always be together'

Always best enjoyed together with the gestures.

Dû dû dû dû*
Dû dû dû dû
Dû dû dû dû
Dû dû dû, always be together.

*‘Dûing’

"The word ‘dûing’ comes from the new verb dû (dô, dôes, dîd). It has a similar
meaning to ‘doing’ except the û signifies that although the person is involved in this
situation at some level, that involvement is at an unconscious and unintentional
level. So they are not to blame for it in any way, but because they are involved, they
do have the power to influence what happens next.

So I am stressed

becomes

I am dûing stress" Phil Parker
 

Cinders66

Senior Member
Messages
494
Tom fielden doesn't seem to have an independent brain and he's happy to swallow SMC spoon feed, like most uk press & bash our vulnerable community. He wrote an awful piece in the SMC literature when Crawley decided she was the victim, yes that's right, forget the tube-fed, poor Esther has to do FOIs bless her. I think on radio 4 he even implied it was a psychiatric illness which we just wouldn't accept (Lord, king , sir Wessely, who he was interviewing, ofcourse didn't correct him, a free smeer(sneer bc it's inaccurate not bc psychiatric illness aren't distressing).
Whilst I'm selfishly fearing of the consequences for me as an adult, how many kids with pushy parents are now going to be going to Phil parkers brain programming for treatment ? What's the advice pretend you don't have symptoms, stop "doing" ME? No risk there then.
 
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Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Quacks gonna quack.

sly duck.jpg
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
Didn't get much further than the claim 1 in 100 school children have CFS, also known as ME. This claim seems a little unlikely to me and made me suspect the rest wouldn't be worth reading - at least partially coz it suggests in 10 years time there would be over 6 million people with ME in the UK, an increase of about 2400%.

I don't know what, if anything, the particular children "studied" have wrong with them, or the 1 in 100 claimed, but I'm pretty sure the bulk of them may not have M.E.
 

Cinders66

Senior Member
Messages
494
Humble opinion, I'd take opportunity to get hard facts about severity and research out there so that readers think hang in it doesn't make sense. I don't want balance I want our serious disease recognised.

E.g. Something like
It really doesn't accord with the emerging serious ME/CFS science (such as ...) and we really don't know why this small number respond, perhaps they share symptoms of ME but with a different underliying cause.
if for the majority under the CFS/ME umbrella this type of simple brain training worked, the Norwegian MRC wouldn't have Given over a million dollars to test a cancer type drug, which incidentally has the phase three trial finishing very soon and could establish that there's actually autoimmune part of some of these people's illness. The Norwegian cancer Drs doing the trial had some of the severely affected in their hospital and said they were as sick as their cancer patients a few days before death.
Perhaps say of the CPET studies that they are evidence that for those with PEM, ignoring symptoms and ending pacing can push the body into dangerous territory (science quote) which is why LP has big risks.

I also think we need to get across that If LP is going to help some it's a small subgroup only and we must not let ideas of the mind curing the illness in a few, adversely affect the perception of , treatment of and research for the many very sick, people with devastated lives etc. What this research shows is that we really need to be subgrouoing the CFS umbrella so that those with probable serious physical pathophsysiolgy aren't being lumped in with perhaps very different fatigue syndromes and harmed by that, which has happened too long regarding a small portion responding to exercise whereas most it actively harms but uk Diageo out spcheap exercise for all and did nothing for the unhelped
. Uk has been offering various types of behavioural therapy for many years now, its those who need medical treatment that have to be urgent focus because there isn't any.