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

Cinders66

Cinders66

Senior Member
Messages
494
Dx Revision Watch said:
Apologies if we have this one already:

Children with chronic fatigue helped by training course

22 September 2017 By Isobel Sims

http://www.pulsetoday.co.uk/clinical/mental-health/children-with-chronic-fatigue-helped-by-training-course/20035330.article
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Pulse still classifies Cfs under mental health and neurology. They've lapped it up, when I bet in any other situation it would attract scorn.
Esther particularly emphasised anxiety and depression in the media and the paper as if they're core CFS symptoms, they're not, although I guess the less functionally impaired someone is the more happy they are and that's important. But I still feel it's unhelpful
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Blog by Spoonseeker
Wearing a Forced Smile
Posted on September 23, 2017 by mrspoonseeker
Time after time over the years, people with M.E. (myalgic encephalomyelitis) have had to put up with hearing total bunkum about their condition, but rarely does the ‘science’ get as flaky as last Thursday’s announcements on the ‘Smile’ Trial, a study which purported to assess the efficacy of the ‘Lightning Process’ for children with M.E. This process (known as LP for short) could be described as a cross between neuro-linguistic programming (NLP) and amateur dramatics, or (to put it less kindly though perhaps more accurately) as a form of brainwashing.

The precise nature of LP is wreathed in secrecy and participants are told not to disclose the details. However, according to anecdotal reports, patients undergoing the process are told that they are responsible for their illness and are free to choose to live their life without it if they wish. They are told they can achieve this through LP but it will only work if they believe in it. Everything they think and say must be positive. They must tell everyone they are better. When they feel any symptoms or negative thoughts, they must stretch out their arms with the palms facing out and shout “Stop!” If the process doesn’t work, they’re doing something wrong: it is their fault if they’re still ill.

Can you guess what results this trial has achieved?
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https://spoonseeker.com/2017/09/23/wearing-a-forced-smile/
 
Esther12

Esther12

Senior Member
Messages
13,774
BS3boy said:
Hello Esther12 - I finally get approved on here (!) - thanks; & yes, my talk wasn't perfect at all; but never mind (I *Was* very nervous). I was representing a patient advisory group primarily - though obviously some points (the quips) were my ideas.

Am absolutely not in the business of getting into slagging matches, but (dear Yogi) I refute absolutely that I am any sort of "AfME stooge" ; I am a volunteer, and therefore, impartial, and 100% make my own mind up about things. Additionally, I do know a hell of a lot about the controversy surrounding the illness (I myself was ill 1997 - 2007) , and follow very closely recent developments & research "findings" (including ones that disappoint me massively - ie. SMILE - one of my PWME friends died in 2014 after trying the LP as a last resort. She'd been severe for 20 years. One of the reasons i am back in the ME/CFS world is as a tribute and memory to her short life).

I'm here to do the right thing, and FWIW I have no support for the BPS model of the illness, or any further behavioral trials. I was hoping they'd died down by now (eg. PACE ended in 2011; SMILE was started in 2011... a while ago), but sadly one or two remain. Here's hoping more great biomedical findings can come out of research - it was a privilege to witness some inspiring talks at the CMRC conference last week.
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Welcome to the forum! We've had some drama here with moderation, so things might be a bit slow on that side of things for a while... bear with us.

I think that a lot of us are, quite rightly imo, concerned that AfME does much more harm than good, particularly with their involvement in research issues. They seem to consistently get things wrong in a way that harms patients, and favours people like Crawley, Wessley & White... and appear incapable of learning from their long history of mistakes. I do not understand how they can keep being so bad.

Esther Crawley has shown herself to be untrutworthy and incompetent, and I do not understand why patients would want to try to help her get more research funding. What do you think?

I actually wrote a somewhat critical review of your talk (although you definitely get bonus points for this not really being your thing, and doing it all as a volunteer, and I had some praise too which maybe I skipped over too quickly): http://forums.phoenixrising.me/inde...-the-cmrc-conference.54327/page-2#post-903408

We could discuss things in that thread if you fancied it? I can be quite critical of other peoples' ideas (and hopefully my own too), and I know that can seem ruder than I intend to some, but I try to avoid having things descend to a slagging match!

Hope you find reading/posting here useful. Best wishes.
 
Esther12

Esther12

Senior Member
Messages
13,774
Large Donner said:
Funny that, I've never found you quite rude enough.
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I piss people off in counter-productive ways on a semi-regular basis. That's rude enough for me.

When people see I'm pretty critical of everyone/thing, they seem to take it less personally... straight off the bat I've found that a little warning can be useful!
 
Cinders66

Cinders66

Senior Member
Messages
494
BS3boy said:
Hello Esther12 - I finally get approved on here (!) - thanks; & yes, my talk wasn't perfect at all; but never mind (I *Was* very nervous). I was representing a patient advisory group primarily - though obviously some points (the quips) were my ideas.

Am absolutely not in the business of getting into slagging matches, but (dear Yogi) I refute absolutely that I am any sort of "AfME stooge" ; I am a volunteer, and therefore, impartial, and 100% make my own mind up about things. Additionally, I do know a hell of a lot about the controversy surrounding the illness (I myself was ill 1997 - 2007) , and follow very closely recent developments & research "findings" (including ones that disappoint me massively - ie. SMILE - one of my PWME friends died in 2014 after trying the LP as a last resort. She'd been severe for 20 years. One of the reasons i am back in the ME/CFS world is as a tribute and memory to her short life).

I'm here to do the right thing, and FWIW I have no support for the BPS model of the illness, or any further behavioral trials. I was hoping they'd died down by now (eg. PACE ended in 2011; SMILE was started in 2011... a while ago), but sadly one or two remain. Here's hoping more great biomedical findings can come out of research - it was a privilege to witness some inspiring talks at the CMRC conference last week.
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Pleased to see you here.
I thought a lot of your talk was good, thanks, especially emphasising the point this is not fatigue to an audience where sone reduce it to that. but I didn't see why you criticised pace trial headlines but not the research itself - trudie chalder et al did a paper and press releases whereby supposedly the main thing is to reduce our fear of exercise. Also I don't see how you can work with Esther Crawley and mega, given that Crawley frequently does reduce our ghastly illness to fatigue, is totally irresponsible in the media and a nice guidelines criteria biobank isn't really a research priority is it? Maybe you feel best to be involved than not but I personally feel an alternative collaborative should be set up with people on the same page that this is systemic disease and bring in sympathetic journalists instead of the CFS bashing SMC reps. Etc.

I do thank you as someone recovered for caring enough to devote time to furthering progress. We need more healthy advocates who can actually travel and devote energy etc and ofcourse for you advocacy isn't in self interest so, :) :thumbsup::thumbsup:
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
BurnA said:
Invest in ME research statement on SMILE.
http://www.investinme.org/IIMER-Statement-1709-01.shtml

Has this been posted already?
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This is exactly how advocacy should sound. It's angry, because it should be angry. SMILE should make any decent person angry. And it goes without saying I totally endorse their comments about people who insist on continuing the farce of being part of The Ridiculous Tent. I bet MERUK are mighty glad they were nudged into leaving when they did. The shame that must attach to anyone associated with that pathetic excuse for an 'organisation' now... shakes head. Seriously.. every member of the CMRC should hang their heads in shame. That, or get out and make a noise about getting out. Pretty damn easy decision to make I'd have thought. History will judge those who don't make the right one.
 
S

Sean

Senior Member
Messages
7,378
BurnA said:
This saga could really end up backfiring on the BPS.
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Indeed.

The real story in all this is that the SMILE trial used the same basic methodology as PACE and most of the other 'successful' CBT and GET trials. Which is to maximise the effect of known biases and confounders, and then simply relabel the drearily predictable results as a legitimate therapeutic response.

Crawley's 'surprising success' has blown the covers off the whole racket, and exposed it for what it really is.

Oops. No wonder Sir Simon is none too pleased. :oops:

Cheshire said:
This poorly 10-year-old is absolutely raging about a new way to treat ill people

http://www.plymouthherald.co.uk/news/health/poorly-10-year-old-absolutely-516768
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Go Shannon! :thumbsup:
 
Cheshire

Cheshire

Senior Member
Messages
1,129
Sean said:
The real story in all this is that the SMILE trial used the same basic methodology as PACE and most of the other 'successful' CBT and GET trials. Which is to maximise the effect of known biases and confounders and simply relabel the drearily predictable results as a legitimate therapeutic response.

Oops. No wonder Sir Simon is none too pleased. :oops:
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Wessely and Moss-Morris, who are very keen on tweeting about every single "successful" CBT study pushed in the media, remained quiet. I hope it's a good sign indeed. (only Sharpe did).
 
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