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

[NelliePledge]

MOds: I'm new here, but think i'm not exactly pleased with this sort of response. I have no agenda & am hoping to help people with this terrible illness. Have I come to the wrong place?

hi @BS3boy im not a Moderator but I just wanted to say as others have the debate on here has people expressing strong opinons often very forcefully and it took me time to get used to it - I dont always appreciate the way people put things and in your position being on the end of it must be challenging. There are a couple of aspects - people on here are from different countries with different cultures and communication styles, some people are very embedded in scientific debate and bring that to the political side as well. Also of course people nearly all have ME so maybe dont have the patience or energy for crafting comments to avoid offence. You can block people you feel you really dont want to engage with I believe, not sure how exactly.

but please stay and give it a go I did

 

[lilpink]

The CMRC has come to be seen by the international research community as an irrelevant irritation

Oh joy! I'm glad that penny has now dropped. So given this is a fait accompli (at least in the eyes of JE ) why oh why is the MEA still hanging in there? It's truly bizarre. Why can't they see what the rest of us can see? They continue to add a lustre of perceived respectability to EC and her atrocious grasp on medical research science.

 

[Jonathan Edwards]

Oh joy! I'm glad that penny has now dropped. So given this is a fait accompli (at least in the eyes of JE ) why oh why is the MEA still hanging in there? It's truly bizarre. Why can't they see what the rest of us can see? They continue to add a lustre of perceived respectability to EC and her atrocious grasp on medical research science.

As I said before, having hung in there this long why not stay to ladle on the fat while they cook their own goose? There are important outside people sitting around the table who need to have the wool pulled from their eyes too. How is Crawley to respond if Charles accuses her of slander in front of them? Things are getting to the point where certain eminent fellows of the Royal Society and such like may find themselves treated to a spectacle of complete and utter absurdity. You do not win a game of chess by keeping all your pieces behind the pawns.

 

[Jonathan Edwards]

MOds: I'm new here, but think i'm not exactly pleased with this sort of response. I have no agenda & am hoping to help people with this terrible illness. Have I come to the wrong place?

I am not a moderator either, although I was once privy to moderators discussions as a board member. You are doing a great job @BS3boy helping us to understand some more background. PWME get angry and rightly so. Sometimes that gets sent in the wrong direction. I think the post from Yogi was unjustified - particularly the suggestion that you did not know the history.

In general there is less flak here than on Guardian comments posts. I got to ignore it after a while. It is useful to know where people stand, too.

You have come to the right place. Or more to the point we would greatly benefit from your further input.

 

[TiredSam]

well yogi, you failed earlier (calling me a "stooge"), but well done, you've now completely alienated me. if that was your intention, you succeeded. Just what the ME world needs - more alienation.

@Yogi's been kicking off all over the place lately and seems to be in some kind of melt-down. You mustn't mind that. If you feel alienated from @Yogi, please don't let it stop you posting to the rest of us.

 

[lilpink]

As I said before, having hung in there this long why not stay to ladle on the fat while they cook their own goose? There are important outside people sitting around the table who need to have the wool pulled from their eyes too. How is Crawley to respond if Charles accuses her of slander in front of them? Things are getting so absurd now that certain eminent fellows of the Royal Society and such like may find themselves treated to a spectacle of complete and utter absurdity. You do not win a game of chess by keeping all your pieces behind the pawns.

If the picture you paint above is a strategy CS is considering using in order to create a drama of outing EC whilst exiting the CMRC for eg then I wouldn't complain about that. It would be (albeit annoyingly behind closed doors) their 'Trevor Phillips meets Tony Blair' moment wouldn't it ? ( for reference...I refer to the time TP interviewed TB about 'multiculturalism' and told TB he was totally wrong and it had failed abysmally and as viewers we got to see the dawning realisation on TB's face that he'd been 'had'. One of the best TV moments of this millennium thus far).
There is, however, one central caveat with the tableau as you describe it: it is very unlikely CS will ever do this if we rely on our experience of his past performance.

 

[Countrygirl]

https://jcoynester.wordpress.com/20...nal-providers-in-esther-crawleys-smile-trial/

An extract:

Parents should have been warned about unprofessional providers in Esther Crawley’s SMILE trial

The providers of Lightning Process in the SMILE trial were not credentialed health professionals and are not bound by ethical codes.

Esther Crawley’s overdue publication of results from the SMILE trial deserves close scrutiny for lots of reasons. But especially for what is said about the supervision and qualifications of Lightning Process practitioners who delivered the treatment.

Readers can easily gloss over a seemingly straightforward description of these practitioners in the paper. Yet, a little probing and checking of sources should cause some alarm among the parents who agreed to their children participating in the trial.

The details are alarming enough to cause worry about participating in any clinical trial involving Esther Crawley. She does not look after the safety and rights of children in her care.

This trial was approved by a number of committees at Bristol University. Assured by those well-publicized approvals, parents undoubtedly assumed that their children were protected from risks and needless exposure to quack treatments or providers not bound by enforceable ethical codes. The children did not have these protections, which should give pause to anyone contemplating allowing their children to participate in a trial regulated by Bristol University.

What was said in the published paper
LP practitioners have completed a diploma through the Phil Parker Training Institute in Neurolinguistic Programming, Life Coaching and Clinical Hypnotherapy. This diploma is examined through written and practical examinations and is accredited by the British Institute of Hypnotherapy and NLP. Following the diploma, LP practitioners undertake a further course to learn the tools and delivery required for the LP after which they must pass both a practical and written examination. Practitioners undertake supervision and continuous professional development in order to further develop their skills and knowledge. They are regulated by the register of LP practitioners, adhere to a code of conduct and there is a Professional Conduct Committee that oversees complaints and professional practice issues.

 

[Mrs Sowester]

St Esther is taking more risks; she's become emboldened by getting away with smearing her critics behind closed doors. She thinks she got away with smearing Tuller, she took a massive risk smearing the MEA on radio4, she's broadcasting nonscience and supposition as fact. She will continue in this pattern, getting more outrageous, her claims more ridiculous and overinflated until suddenly all that behind the scenes support she has will just fall away and she'll find herself with no influential back-up.
She's heading for a fall, my bet is she'll be hoist by her own petard.

 

[Esther12]

The CMRC has come to be seen by the international research community as an irrelevant irritation

...

Not sure what more you would expect to notice by now?

I meant 'as an indication that the CMRC is making a positive contribution'. Certainly, lots of people have been achieving lots of things outside of the CMRC. Nath spoke at this years conference, so that might not have succeeded in making themselves known as an entirely irrelevent irritation.

And it still wouldn't surprise me if Cochrane were to still come out with more promotion of GET from White & co. Thanks for your work in trying to prevent that though.

St Esther is taking more risks; she's become emboldened by getting away with smearing her critics behind closed doors. She thinks she got away with smearing Tuller, she took a massive risk smearing the MEA on radio4, she's broadcasting nonscience and supposition as fact. She will continue in this pattern, getting more outrageous, her claims more ridiculous and overinflated until suddenly all that behind the scenes support she has will just fall away and she'll find herself with no influential back-up.
She's heading for a fall, my bet is she'll be hoist by her own petard.

Fingers crossed... it could all have been an elaborate plan to make them over-confident, and give them enough rope to hang themselves!

 

[BS3boy]

I am not a moderator either, although I was once privy to moderators discussions as a board member. You are doing a great job @BS3boy helping us to understand some more background. PWME get angry and rightly so. Sometimes that gets sent in the wrong direction. I think the post from Yogi was unjustified - particularly the suggestion that you did not know the history.

In general there is less flak here than on Guardian comments posts. I got to ignore it after a while. It is useful to know where people stand, too.

You have come to the right place. Or more to the point we would greatly benefit from your further input.

Thanks Jonathan. Appreciated. I've been reading your posts on here on & off for months, so glad you think I'm doing a "great job"! - you too!

And when i had CFS/ME, i was a very angry person on occasion as well. I once remember sitting in a park on my own and mentally composing a furious letter to Simon Wessley (which of course I never wrote) back in about 2001.

 

[Valentijn]

And when i had CFS/ME, i was a very angry person on occasion as well. I once remember sitting in a park on my own and mentally composing a furious letter to Simon Wessley (which of course I never wrote) back in about 2001.

Abusive psychobabble doesn't make you angry anymore, now that you're cured?

 

[Mrs Sowester]

Fingers crossed... it could all have been an elaborate plan to make them over-confident, and give them enough rope to hang themselves!

Having watched The Borgias recently it's fun to imagine everyone being Machiavellian, rubbing their hands together and plotting in pursuit of power. I'm finding reality pretty disappointing in that shit just happens, most people seem to do what they think is best and hope it works out to their advantage in the long run (unless they have a disordered personality, in which case plotting and scheming seems to be standard).
I'm on the fence (or in the lobby?) about the in or out of the tent situation, both sides have strong arguments, I flip flop between them. I can see being in the CMRC has given CS ample opportunity to know his enemy, which is a bonus when strategizing, but unfortunately he strikes me as being quite a fair minded chap rather than the type to bring about the downfall of his rival through cunning and manipulation (or a Borgias style complicated plot involving a serial killer Arch Deacon son, poison or plague laced hankies).
Luckily for us EC seems to be bent on bringing about her downfall all by herself, it's just a waiting game.
But how much longer can we all wait? And, on a more personal level, how many more boxed sets and films will I have to sit through?

 

[Orla]

MEGA has been turned down

White has left

MEGA researchers have seen the opportunity to work with the real Biobank

NICE is reviewing guidelines

Cochrane is getting peer review from new sources

Critiques of PACE have been published in peer reviewed journals

BBC and newspaper journalists have come to understand that the SMC is phoney

The Times has written sensibly about PACE critique

The IOM has removed GET from guidelines

The medical academic community has become aware of the problem

The CMRC has come to be seen by the international research community as an irrelevant irritation

MERUK have left and even AfME have tried to indicate a shift in position, despite tied hands


Not sure what more you would expect to notice by now?

But that has all come from efforts outside the cmrcc. The biopsychosocial crowd are still wittering on with the same nonsense about patients being abusive and their nonsensical "research" etc. I think what has played a much more important role is people like Coyne being very public with criticism, David Tullers efforts and I would say critically the special issues of the JHP on PACE.

 

[BS3boy]

Abusive psychobabble doesn't make you angry anymore, now that you're cured?

It makes me very mad, believe me! I was in full time work in 2011 when PACE results came out & I was shouting at the radio in the car; the SMILE trial results/announcements / press coverage has made me very cross, as has some of the SMC comment.

I consider myself "recovered", not "cured" - there's no cure, & I didn't use one. Soz if that's me being pedantic!

 

[Jonathan Edwards]

I meant 'as an indication that the CMRC is making a positive contribution'. Certainly, lots of people have been achieving lots of things outside of the CMRC. Nath spoke at this years conference, so that might not have succeeded in making themselves known as an entirely irrelevent irritation.

I take your point. I agree with the spirit but the opposite to 's*** happens' is that good stuff happens too, in spite of Machiavelli.

The putative role of the CMRC was to get people together and foster collaboration and seed some grants into departments not actively involved in ME up to that point. There may have been other hidden agendas but let's take them at face value. They have been pretty successful in getting people together. That is where I met Peter White, and Andrew Lloyd, and Ian Lipkin and so on. This time round they probably paid Montoya's air fare to come over so that he could spend time with the Biobank team afterwards! Nath is a newbie who will benefit from meeting the CMRC crowd and coming to his own conclusions. I think most established ME researchers prefer the IiME meeting. Hopefully Nath will get a chance to attend next year.

 

[A.B.]

You do not win a game of chess by keeping all your pieces behind the pawns

It's possible that the goal was never to win, but merely to delay victory for the other side as much possible by sowing confusion and doubt, and fabricating a controversy, all the while making some money from vulnerable patients.

It's also possible that this whole thing started off as illness denial campaign to make it easy to reject disability claims, and then someone realized that there was a lot of money that could be made by making up a bogus therapy and getting it certified as evidence-based treatment for ME/CFS.

Do you really think that someone who has written a book on clinical trial design is unable to understand the blinding problem? He knows PACE is nonsense but he also knows that he is in a position to get away with nonsense.

 

[Jonathan Edwards]

But that has all come from efforts outside the cmrcc. The biopsychosocial crowd are still wittering on with the same nonsense about patients being abusive and their nonsensical "research" etc. I think what has played a much more important role is people like Coyne being very public with criticism, David Tullers efforts and I would say critically the special issues of the JHP on PACE.

Agreed, but do you remember that word 'uninterpretable' that keeps coming up? It comes from my report of a presentation to the 2014 CMRC meeting - to PR on these threads. I saw Charles today and learnt a lot of very useful information about this year's meeting. The wittering is not going to be sustainable much longer. Many people have noticed a remarkable silence on certain Twitter accounts for the last coupe of weeks.

Guy Fawkes never actually managed to blow up Parliament and people have been having great fun with bonfires and fireworks ever since. A lot of people at CMRC have good intentions and those that might spoil it look to have got nowhere much from it. And maybe a better strategy than that of Lucretia Borgia is that of Sir Percy Blakeney - altogether less messy and equally effective.

 

[Jonathan Edwards]

It's possible that the goal was never to win, but merely to delay victory for the other side as much possible by sowing confusion and doubt, and fabricating a controversy, all the while making some money from vulnerable patients.

I was talking about Charles's chess strategy. I think it may be paying off.

Do you really think that someone who has written a book on clinical trial design is unable to understand the blinding problem? He knows PACE is nonsense but he also knows that he is in a position to get away with nonsense.

Yes, I do. Simon and I have had an email exchange on this. He really does not seem to understand. That comes as no surprise to me. People who write textbooks are often the people who do not really understand. They are people who want power through apparent authority - which a book gives you. I have had something like a dozen senior people get back to me saying that my point about blinding and subjective endpoints is not right - including in fact I think James Coyne. People are remarkably good at persuading themselves of irrational arguments. How that works in terms of conscious thought, I have no idea. I do not understand the inside of other people's minds, but at least I do not pretend to: like some people in the profession!

 

[Mrs Sowester]

And maybe a better strategy than that of Lucretia Borgia is that of Sir Percy Blakeney - altogether less messy and equally effective.

So I need to watch another flipping boxed set? Who gives the best Sir Percy? Marius Goring, Antony Andrews or Richard E Grant? Tim McInnerny in Black Adder probably doesn't cut it, does he?

 

[user9876]

I consider myself "recovered", not "cured" - there's no cure, & I didn't use one. Soz if that's me being pedantic!

I think that is a very important point - also we are quite pedantic and (some of us) very analytical here. One of the issues is that for the few who do recover or get significantly better they tend to attribute what they were doing at the time to improvements. We need the trials to that people are not relying on correlating two random events and getting 5.

In general there is less flak here than on Guardian comments posts. I got to ignore it after a while. It is useful to know where people stand, too.

I think there is some flak but its quite easy to ignore. There is a lot of questioning of ideas, trials methodology, assumptions etc which I think is of real value in gaining understanding.

well as I said, having some influence is probably more useful to research than not being listened to by anyone.

I think patient involvement in MEGA is a good thing and can only improve the project (I did apply for the PAG but was turned down!). Like most here I worry about Crawley (having encountered her as a doctor and being unimpressed with her research), but I do think there are some good people involved or potentially involved. It seems essential that they get a good understanding of ME and what it actually is and I can see that only coming from the PAG.

I also think the type of discussions and analysis that goes on here (in some threads) can help bringing a better understanding of a range of the science as well as methodological issues. People here bring together a very interesting range of skills.