Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

[anni66]

what a shame those at the CMRC conference will have departed - their take on things would have been interesting

 

[anni66]

her favourite ME group that she's medical adviser to in Sussex (the one with Colin Barton) actually invite Lightning Process practitioners to their conferences and included them in their useful links page on their website

she would have cherry picked and tweaked from the initial feasibility ( that was really a trial)- that's the reasson to have one.

 

[Jo Best]

her favourite ME group that she's medical adviser to in Sussex (the one with Colin Barton) actually invite Lightning Process practitioners to their conferences and included them in their useful links page on their website

I have no words. The onus on the child or young person to stop 'doing' ME and the rediagnosis of PRS or FII when the young patients 'fail' to recover or dare to get even more ill is all in the same mindset isn't it. Chilling.

 

[Demepivo]

SMC experts for SMILE?... The eminent knight of KCL?
(Topical photo)

 

[Dx Revision Watch]

In Scotland it's 16.

So your daughter has reached school leaving age in Scotland?

 

[Esther12]

Intrigued about the bullet point in the press release re researchers' scepticism. Is there going to be a narrative of conversion?

Or is it a retrospective narrative that they were always sceptical which is confirmed by null results (so no egg on face)? I'm not sure that will stand up because it makes it even more unethical to do this to children. It beggars belief that this was passed for ethical approval on children without similar research on adults first.

@Dx Revision Watch I seem to remember a document on your website, where Crawley (or SMILE) were reassuring someone that they had access to a very good LP coach. I can't find it now. I remember at the time thinking 'how can she theink someone making money from LP is very good?' Does this ring a bell with you. Thanks for all your work collecting documents on this.

 

[Esperanza]

Sadly our paediatrician phoned at lunchtime. She has been copied in to tests and referrals our GP has agreed to as my daughter is now 16. Lupus, Lyme and referrals to immunologist (ebv trigger and reactivation) and endocrinologist ( hpa axis and thyroid technically within range but creeping towards hypo with lots if hypo symptoms).

She wishes to refer us to Esther Crawley which i have refused. I did suggest julia newton as i could not think of anyone else on the spot. Any suggestions would be welcomed.

As my daughter is too ill for school and CAMHS ( and this is not well understood), i fear us being framed as " persistent refusal syndrome" candidates.

I have contacted tymes trust meantime.

Are you aware of Sue Pemberton, Specialist OT & the Yorkshire Fatigue Clinic based in York.
Sue is my ME OT, has worked with ME patients for over 25yrs in Yorkshire & does home visits, telephone consults & Skype consults where required. She sees patients from 13 upwards & does NOT endorse GET. She is very approachable & it's worth giving her a call. Julia Newton has met her & knows of her work etc

 

[NelliePledge]

They could also be preparing some "tame" patients instead to say that the LP works in interviews with Journalists. Lining up patients to use against patients sounds like a strategy they would stoop too.

oh heck hadnt thought of that lets hope they dont roll Martine McCutcheon out again

 

[NelliePledge]

only been dealing with ME for 2 years so apologies for a noddy question - is it normal for all this SMC press conference stuff when results of a study come out - I though they just published a paper and maybe have articles in the press but a press conference seems excessive

 

[Kati]

https://twitter.com/i/web/status/909666671257899008

 

[Cinders66]

only been dealing with ME for 2 years so apologies for a noddy question - is it normal for all this SMC press conference stuff when results of a study come out - I though they just published a paper and maybe have articles in the press but a press conference seems excessive

I think for treatment 'breakthroughs" it might happen and ofcourse the only CFS treatments uk researches Are behavioural ones. The FITNET press release was the most bizarre proclaiming the good news of a CBT trial about to start
I think it's accepted the SMC have a certain position on CFS.

Unfortunately I remember right back to 1996 reading press coverage saying exercise is the best approach to this illness. It's all very harmful.

I'm hoping they'll begin with
"As you know the institute of medicine in 2015 said this..," but I doubt it will happen

 

[ukxmrv]

only been dealing with ME for 2 years so apologies for a noddy question - is it normal for all this SMC press conference stuff when results of a study come out - I though they just published a paper and maybe have articles in the press but a press conference seems excessive

That's normal for this crowd now. They did the same over PACE

There's the press conference and journalists are given a written briefing that covers all the points the SMC wants to get across. The Journalistt if lazy, then prepare a media report based on that written briefing and anything said at the conference.

They want to control the message and usually this works.

 

[NelliePledge]

I think for treatment 'breakthroughs" it might happen and ofcourse the only CFS treatments uk researches Are behavioural ones. The FITNET press release was the most bizarre proclaiming the good news of a CBT trial about to start
I think it's accepted the SMC have a certain position on CFS.

Unfortunately I remember right back to 1996 reading press coverage saying exercise is the best approach to this illness. It's all very harmful.

I'm hoping they'll begin with
"As you know the institute of medicine in 2015 said this..," but I doubt it will happen

so the chances are they are going to say it is helpful
why would they set up a press conference to say it is actually a waste of time (and Phil Parker would probably sue them for saying that)

 

[NelliePledge]

That's normal for this crowd now. They did the same over PACE

There's the press conference and journalists are given a written briefing that covers all the points the SMC wants to get across. The Journalist's if lazy, then prepare a media report based on that written briefing and anything said at the conference.

They want to control the message and usually this works.

maybe this will be a step too far - lets hope so

 

[ukxmrv]

so the chances are they are going to say it is helpful
why would they set up a press conference to say it is actually a waste of time (and Phil Parker would probably sue them for saying that)

It doesn't matter if it was helpful or not - it's the publicity and spin that matters

They will report it exactly how they want to, safely in the knowledge that not one Journalist will actually read the paper or question the methods used.

 

[NelliePledge]

It doesn't matter if it was helpful or not - it's the publicity and spin that matters

They will report it exactly how they want to, safely in the knowledge that not one Journalist will actually read the paper or question the methods used.

i agree they are going to say it was helpful - whatever the actual study results were

 

[anni66]

So your daughter has reached school leaving age in Scotland?

yes - have to fight to retain educational input after this age if you have special needs

 

[anni66]

Are you aware of Sue Pemberton, Specialist OT & the Yorkshire Fatigue Clinic based in York.
Sue is my ME OT, has worked with ME patients for over 25yrs in Yorkshire & does home visits, telephone consults & Skype consults where required. She sees patients from 13 upwards & does NOT endorse GET. She is very approachable & it's worth giving her a call. Julia Newton has met her & knows of her work etc

I don't know if we would get referred to an OT ( given that we have never had OT input) - if Julia Newton wa son board then perhaps. It would all hinge on out of area referral funding for anyone.

 

[Chrisb]

There is something not clear to me.

I know that we have seen descriptions of the activities involved in the Lightning Process, but I thought that these were leaks rather than official descriptions. Is this correct?

I do not see how any "scientific" claims could be made about a procedure which is not fully described. It would not be possible to corroborate or refute any claims.

Does this mean that a full description will be provided, and if so, why would anyone pay the fee for the course?

 

[Kati]

I don't know if we would get referred to an OT ( given that we have never had OT input) - if Julia Newton wa son board then perhaps. It would all hinge on out of area referral funding for anyone.

@anni66 Dr Nigel Speight is a pediatrician who has done tremendous work in UK, he would be the go to guy. You may want to contact ME Association to see how to get in contact with him. Best of luck.