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

[UKmum]

@UKmum I don't think having ME/CFS makes people automatically qualified to assess the validity of treatments, nor does it protect against wishful thinking or desperation or pressure from other people to try and get better.

I'm frustrated by the circularity of the whole thing. The implication of blame on the patients for treatments not working rather than the possibility of the treatments just not working. I absolutely agree many will have tried LP because of external & internal pressures to try and get better and an endorsement of LP by NHS will make this ever more likely.

 

[A.B.]

I get what you're saying about severity though. With increasing illness severity it becomes harder to deny the illness.

 

[JoanDublin]

The MEA press release says:

"The ME Association believes – as it always has – that ME/CFS is not a mental health condition."

This simply isn't good enough.

The scientific evidence, the facts, prove ME is a serious multi-system disease, not psychological.

That ME is a physical disease is fact, not a belief.

This is not being pedantic.

A fact is based on evidence, a belief or point of view has no basis in fact. Beliefs and points of view are opinions strongly held without evidence.

The BPS model of ME is a point of view or belief, with no evidence to back it up.

The facts, the scientific evidence invalidates the BPS belief that ME is psychological.

MEA and other organisations need to grasp this and be very careful in the wording of their press releases and websites.

The press release should be stating loud and clear that the scientific evidence shows ME is an organic disease and not psychological, not leaving any doubt in the minds of journalists.

The way it is written, saying MEA believes it is organic is playing into the hands of the BPS brigade and the SMC.

Woleheartedly agree with this. Its infuriating to see a charity stating that they 'believe' ME is a physical disease. Its not in their gift to 'believe' or 'disbelieve'. Its beholden on them to promote the scientific facts.

Also its interesting that they added the words 'as it always has' to the statement. Makes one wonder why the MEA therefore decide to include the Lightning Process in their survey of evaluation of treatments in 2010 as the results leant weight to the proposal for the SMILE Trial.

http://lightningprocess.com/lp-research/

 

[Invisible Woman]

The implication of blame on the patients for treatments not working rather than the possibility of the treatments just not working.

This is the most dangerous and cruel aspect of all.

I dread and fear the day that MUS meets LP. Then we're in really big trouble.

 

[NelliePledge]

This is the most dangerous and cruel aspect of all.

I dread and fear the day that MUS meets LP. Then we're in really big trouble.

yes that will be like Alien v Predator

 

[NelliePledge]

Sorry for above
on a serious note anyone know what time the press conference is/was and if we're likely to hear from any attendees about what is said?

 

[trishrhymes]

Someone said 10.30 am , then embargo until 11.30 pm.

 

[John Mac]

Someone said 10.30 am , then embargo until 11.30 pm.

Does that mean they are hoping for publication in tomorrow's newspapers?

 

[Invisible Woman]

Does that mean they are hoping for publication in tomorrow's newspapers?

The timing certainly seems suggestive.

 

[Esther12]

She had been working with him [Phil Parker?] for several years prior to the SMILE trial I believe and they seemed on very friendly terms, which was one of the concerns raised as a potential conflict of interest at the time.

Is this right? I'd seen concerns about Crawley being on such friendly terms with the Lightning Process coash she was using for SMILE, but not seen anything about her interactions with Parker himself.

 

[A.B.]

She had been working with him for several years prior to the SMILE trial I believe and they seemed on very friendly terms, which was one of the concerns raised as a potential conflict of interest at the time.

I bet Coyne would love to see some evidence of this.

 

[Dx Revision Watch]

She had been working with him for several years prior to the SMILE trial I believe and they seemed on very friendly terms, which was one of the concerns raised as a potential conflict of interest at the time.

Could we have your evidence, please, in support of these statements?

 

[Orla]

Somewhat Off-topic

I'm fairly sure it's anything goes these days in the UK, unless, of course you're not rich, in which case you're likely to be arrested for breathing, unless you've got a receipt for the air used (no, not really, but they've privatised the water, air may be next)

I put a video for you in Jokes of the day inspired by your comment http://forums.phoenixrising.me/index.php?bookmarks/8902/view-item

 

[Orla]

I suspect they do their best to weed out patients with ME (Edit: ME with PEM) and anyone of a skeptical turn of mind.

Yes the application forms for regular LP (not the trial, I haven't seen those) would weed out anyone even slightly skeptical or that would engage in critical thinking (even a little bit). I think it might have been more obvious on the original application form (I have it on an old computer and it would be a bit of a job to open it up now). This is from a current form that I found online:

4. Do you feel you can influence your own health? Yes No Maybe

5. Do you believe you can get better/resolve your issues? Yes No Maybe

. Your Lightning Process Course

What do you hope to achieve from doing the course?

When you have discovered a way to get well and resolve your issues, what would you love to do with your life?

You should only sign this application form if you agree to the terms and conditions on this and the following page and to the following statement:

“I understand that the Lightning Process is a training programme. Its purpose is to train me in the tools of the Process, and I realise that simply attending will not guarantee me any results. I recognise the changes I want can best be obtained by fully participating and engaging in the seminars and continuing to apply it after. I am ready and committed to do this.”

 

[Dx Revision Watch]

Somewhat Off-topic



I put a video for you in Jokes of the day inspired by your comment http://forums.phoenixrising.me/index.php?bookmarks/8902/view-item

Lovely!

 

[Dx Revision Watch]

I think it might have been more obvious on the original application form (I have it on an old computer and it would be a bit of a job to open it up now). This is from a current form that I found online

I have an old one on file (circa 2010).

PDF attached.

 

[Dx Revision Watch]

Press Pack for Journalists (circa 2010)

 

[Dx Revision Watch]

"Phil now runs an internationally renowned practice based in London; people from all
over the world and all walks of life, including many Hollywood movie and rock stars are
drawn to his practice and his work has been translated into a number of languages."

Must be good, then.

LOL

 

[ladycatlover]

Back in 2007 I wrote a couple of blog posts about the Lightning Process.

Feb 6 Snow and now fog

Feb 10 Quacktitioners and The Quackometer

I am well aware of who founded the Quackometer - hence not surprised that the original that I quote is no longer available!

I wonder why EC chose to try out Lightning as opposed to Reverse or Mickel Therapies. They are all much the same after all. Just attempts to part desperate patients from their money.

 

[Skycloud]

"........translated into a number of languages."

Stand in the magic circle and say loudly " Stop!"
Placez-vous dans le cercle magique et dites à haute voix "Arrêtez!"
De pie en el círculo mágico y decir en voz alta "¡Detener!"

Makes complete sense to me...

edit to add - google translate.

I'm really interested to see how this all plays out. I just can't believe that there's a snowball-in-hell chance we are going to end up with NHS funded LP treatment. I just can't believe that this was ever funded .