"You and yours" BBC phone in on "chronic fatigue" -26 sept

[A.B.]

I think it would be wholly wrong to believe that the best tactical approach would be to ignore the SMILE trial, as some have suggested.

I will explain why I suggested this (and focusing on lobbying NICE for guidelines that actually meet patient needs as well as finishing CBT/GET off).

This is an area where the BPS school should be open to ridicule.

Never interrupt your enemy when he is making a mistake. Promoting LP is a big mistake. We want them to continue doing it. It will expose them to even more ridicule if they keep making studies on LP. I think in the SMILE paper it was suggested that more studies are needed. Great. One study can be overlooked, but two? Therapists will be outraged at the suggestion anyone with hardly any training could cure various illnesses in 3 days. Infighting will ensue.

 

[Chrisb]

We want them to continue doing it.

No concerns for any children who are made to undergo the treatment? Is that an ethical stance which we wish to adopt?

 

[Mrs Sowester]

Never interrupt your enemy when he is making a mistake

I like this advice so much that I'd like to cross stitch it onto a sampler and hang it over the mantelpiece.

 

[A.B.]

No concerns for any children who are made to undergo the treatment? Is that an ethical stance which we wish to adopt?

I don't think we have the power to stop any studies directly, but maybe we can influence what is studied by choosing what is criticized by us.

In the meantime we should lobby for NICE to reject ALL therapies that claim to treat ME/CFS but are based on unblinded trials with subjective outcomes. If we succeed, these worthless studies will stop.

 

[slysaint]

I have been trying to find a recording of the BBC 2 Victoria Derbyshire programme from Nov 1st 2016,(I've found the BBC Radio Bristol interview),
when the BBC pulled the same sort of stunts for the coverage of FITNET as they have with SMILE.

Jane Colby made a complaint to the BBC and made this statement on FB:
"
“My experience with the BBC is as follows. Please feel free to quote or use it in its entirety.

“The BBC gave me no warning that this was an interview in connection with the public promotion of FITNET. They only said that I would be interviewed opposite Esther Crawley. I therefore had no opportunity to do research on FITNET and the study on which it is based.

“The Today programme recorded an interview with me on Monday evening. This took around 30 minutes during which there was no mention of CBT until, at the very end, as if as an afterthought, they asked what I thought of CBT. They only used this clip in their programme.

“The Victoria Derbyshire Show was a live interview. Not until I heard the presenter speaking did I know that this was a programme on FITNET. Until that moment I had been under the impression that we were discussing graded exercise. It stretches credibility too far to believe that this was a coincidence – that neither programme gave me any prior warning of FITNET being the subject of discussion.

“I would have been able to state that the study in which FITNET is based achieved a null result, had I recently checked the details.
“There was also an issue of representation. One critical voice against three promoting the study was not fair representation.

“Altogether I believe this has been appallingly biased coverage. Given the number of parents who have expressed dissatisfaction with Esther Crawley’s treatment to the Tymes Trust, the BBC should be looking more deeply into that.”

Dr Charles Shepherd of the ME Association confirmed that he had been contacted and that he had asked for more detail which apparently was not forthcoming."

 

[user9876]

This is an area where the BPS school should be open to ridicule. Their defences to criticism of the results of this trial must be weak. Apply the pressure and make them invest resources in defending the position, or make them abandon it. The options look equally bad for them.

They have to defend Smile because it uses the same methodology that they have used for other trials and has the same fundamental issues. There are of course other issues here around ethics but I think even here an ethical position of running a weak trial (i.e. subjective measures) on children and not warning of potential harms is the same issue as with other Crawley trials.

 

[Sean]

They have to defend Smile because it uses the same methodology that they have used for other trials and has the same fundamental issues.

A fatal own goal, I believe.

Can't see Crawley being too popular down at the BPS clubhouse these days.

 

[lilpink]

Always do what your opponent least wants.

I think the best tactic is always to do what we want to do. If we think something is worth fighting we fight it. Trying to second guess people such as these is rather pointless. If this is what advocates have been doing then it hasn't worked yet has it? 'Zero tolerance' is always the best strategy for everything imo .... just be glad none of you are married to me!

 

[Chrisb]

I like this advice so much that I'd like to cross stitch it onto a sampler and hang it over the mantelpiece.

I urge caution before you get started on the sampler.

You would like to see your opponent imprisoned for life. Do you allow him to commit a murder, which you have power to prevent, before reporting the matter to the police?

 

[Countrygirl]

I think it would be wholly wrong to believe that the best tactical approach would be to ignore the SMILE trial, as some have suggested. This is exactly what its authors should wish for. One could almost hear Michael Sharpe squirming with embarrassment at having to write in support of it. Always do what your opponent least wants.

It was a major error by the BBC to alter the You and Yours programme to include the piece by Crawley. It seems to have been a greater error by whoever exerted the pressure which led to the changes being made. The only protagonist with an interest in keeping this story alive should be Parker, but it is hard to imagine that he has particular influence on BBC decisions.

This is an area where the BPS school should be open to ridicule. Their defences to criticism of the results of this trial must be weak. Apply the pressure and make them invest resources in defending the position, or make them abandon it. The options look equally bad for them.

Whoever instructed the You and Yours production team to make changes ought to be made to feel vulnerable. The BBC has given the impression that it has bowed unnecessarily to outside pressure. It is not a good luck for the organisation.

Every opportunity ought to be taken of broadcasting the finding that complete nonsense is more effective than the BPS proponents' "proven" therapy.

I have just been listening to this where Crawley and, I suspect White, were sitting in the audience.

Now just imagine Esther Crawley taking the floor after Dr Montoya and informing the audience that they cure the disease he has been describing by getting patients to cut out paper circles, then jumping onto them and yelling STOP!

It makes one cringe with embarrassment to think this is a display of the level of English intelligence.............or............more likely, of course,........ the degree to which they will sacrifice their professional integrity and the well-being of sick children in order to build their little empires.

It just beggars belief.

Can they not appreciate this nonsense makes them a laughing stock?

Their reputations surely must be destroyed for years to come..

..........or, as I am sure EC is a bright cookie, will she jump ship once she realises that her team have scored too many home goals?

 

[Wonko]

Their reputations surely must be destroyed for years to come.

You'd think so - but this is England, where, apparently, incompetence, being unethical, dishonest, behaving in a way that "legally" isn't corrupt but that everyone knows is, etc, etc, are seemingly mandatory requirements for those in positions of "power".

If you're honest, accurate, nice, helpful and have concern for others, etc. you're unlikely to even manage to get a job in a call centre these days.

 

[Barry53]

..........or, as I am sure EC is a bright cookie, will she jump ship once she realises that her team have scored too many home goals?

I think she is already lining up to do that if she can.

 

[Countrygirl]

You'd think so - but this is England, where, apparently, incompetence, being unethical, dishonest, behaving in a way that "legally" isn't corrupt but that everyone knows is, etc, etc, are seemingly mandatory requirements for those in positions of "power"..

A sure sign of corruption and lying for the Establishment in order to cover-up wrong-doing or vested interests is the allocation of a knighthood or a damehood, of course.

 

[Mrs Sowester]

I understand where you are coming from re. children @Chrisb. I think it's disgusting and unethical that EC abuses her position of power over sick children and their desperate parents.

But us patients have got nowhere trying to protest against anything she, or the rest of the BPS cabal, have done. Nowhere. The cards are stacked against us with the abusive patients myth, we cannot win. We could co-ordinate protests, arrange a flotilla of rubber ducks with EC's face on them to float along the Bristol and Avon canal, have the Red Arrows fly-past and write 'quack, quack, quack' in sky writing over Crawley central and all we'd do is feed the abusive patient myth.

It's the scientific and academic community of her peers that is going to win this battle for us and for our children. The tide of public opinion has turned as scientific evidence has grown. And this SMILE trial will be making her a laughing stock, it is so ludicrous that it brings her entire back catalogue of published work into question. As own goals go it is spectacular. If she wants to dig her own grave I'm not taking away her shovel.

While the lightning process is available privately desperate parents will continue to raise the money to torture their kids with it just as they have done in the past. I'm as angry as you are about it. But there isn't a whelk's chance in supernova that NICE will recommend it or it'll be provided on the NHS.

I too am sickened that children are being used as the cannon fodder in this battle, but that is beyond our control. EC is jumping the shark scientifically right now, and she's doing it so publically that she cannot hope to hold on to any credibility. She is doing an Andrew Wakefield.

 

[bertiedog]

tend to feel physically slightly better when feeling psychologically stressed - more energetic, less severe symptoms etc. Am I the only one?

That could possibly due to your genetics. For me extra stress makes me feel horrendous and my health falls apart but from the research I have done its because of a combination of genetics that I have got. To make matters worse I hardly produce any of the stress handling hormone cortisol so I end up in a complete crash after a period of too much stress.

Pam

 

[slysaint]

As pointed out by Crawley at the 2016 CMRC conference, there are only a handful of centres offering Childrens services for CFS. Hers is by far the biggest..........why is that?
Is it because of all the 'research' she does, links with Bristol Uni, former relationship with AYME, currently with AfME (also in Bristol)............don't know when her clinic was set up..............2003(ish) 8million pounds (I think) were made available by the Gov of the time to provide services for M.E patients........just guessing but would be interesting to see how much ECs clinic got.
Where's a real investigative journalist when you need one?

 

[Sbag]

To indicate the ludicrousness of the lightning process maybe we should suggest an enhanced version where we use coloured paper on the floor. I am sure colour therapy could influence the degree of results.
I would name it the Rainbow Farce.

 

[NelliePledge]

I tend to feel physically slightly better when feeling psychologically stressed - more energetic, less severe symptoms etc. Am I the only one?

The problem is afterwards...

Id say I may do more when stressed because the spike of whatever mental and physical activity I need to do to try to address whatever is stressing me means I have little or no control over my energy use. Im using energy up at a much faster rate than normal calm functioning.

 

[Esther12]

I receive the message 'item missing' when I ;click onto it to play

I did seem a bit of a trouble to up-load, but still seems to work for me now.

I sent a link to the programme to someone and just clicking on it again I still get the whole...

Thanks - that's the You and Yours link and it would be good to get a recording of that too. It's asking me to sign in to something before playing, so I might look at that later.

 

[Hilary]

To indicate the ludicrousness of the lightning process maybe we should suggest an enhanced version where we use coloured paper on the floor. I am sure colour therapy could influence the degree of results.
I would name it the Rainbow Farce.

I'd rename the whole debacle the Lightening (Your Wallet) Process