****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

[Jenny TipsforME]

We are conducting an experimental study on very sick children. By our own admission, we don't know how many of them are going to be harmed by our study. No questions, please."

Real quote or parody? I can't tell!

@Dolphin foggy today but IIRC that money isn't necessarily directly MAGENTA.

 

[TillyMoments]

On this Youtube she is quoting MAGENTA data? has anyone got hold of the data yet?

 

[AndyPR]

To my knowledge the results haven't been released yet, although I believe it's more than overdue now(?) - wouldn't surprise me if they want to do another big media splurge like they did with Fitnet with it.

 

[JaimeS]

To my knowledge the results haven't been released yet, although I believe it's more than overdue now(?) - wouldn't surprise me if they want to do another big media splurge like they did with Fitnet with it.

Whelp, if media coverage is literally all you have going for you. I'd splurge on media too, if my experimental design was as screwy and my data as dubious as theirs...

 

[Invisible Woman]

I'd splurge on media too, if my experimental design was as screwy and my data as dubious as theirs...

Now, now. You know you wouldn't. You'd quite rightly hang your head in shame.....

As anyone with integrity would.

 

[Large Donner]

Whelp, if media coverage is literally all you have going for you. I'd splurge on media too, if my experimental design was as screwy and my data as dubious as theirs...

Yes how funny that they have been reduced to publishing their belief systems via the Daily mail and the Sun, I suppose pay to publish is even refusing them now.

 

[slysaint]

would like to see this in one of the medical papers: (I posted it on Joke of the Day but think it is worthy of a repost)

 

[Jenny TipsforME]

see https://thebristolcable.org/2017/01...nt-science-not-pressure-to-do-more-more-more/

http://www.meaction.net/2017/01/24/help-spread-the-bristol-cable-article-about-stopget/
as discussed http://forums.phoenixrising.me/inde...ence-not-pressure-to-do-more-more-more.48900/

 

[TillyMoments]

AYME stated they would not help parents to gain information on PACE trial and quote Cochrane review stating the PACE trial was OK FitNet-NHS was allowed to continue due to children requesting treatment. Both SMILE and MAGENTA have been used to back that statement up but as far as I can tell no data released.

 

[user9876]

AYME stated they would not help parents to gain information on PACE trial and quote Cochrane review stating the PACE trial was OK FitNet-NHS was allowed to continue due to children requesting treatment. Both SMILE and MAGENTA have been used to back that statement up but as far as I can tell no data released.View attachment 19439

It is worth saying that Cochrane has not published an analysis of the individual patient data although it may be written and in review. But they don't have a strong record around ME as responses to comments on their review on GET suggest that they are happy with outcome switching both in PACE and in their own analysis protocol. The individual patient data protocol includes White, Chalder and Sharpe as authors and so it is not independent. But we have some of the data so we know that the original claims made were way off what was defined by their protocol. As I understand it Smile finished a long time ago and results should have been published. I thought Magenta had finished its recruitment phase and had just under a year to run for a 1 year follow up data - but I could have the wrong trial.

 

[slysaint]

As far as SMILE is concerned I had a look at this link:
http://www.isrctn.com/ISRCTN81456207
"
Specialist Medical Intervention & Lightning Evaluation: Comparing specialist medical care with specialist medical care plus the Lightning Process for Chronic Fatigue Syndrome or Myalgic Encephalopathy (CFS/ME)


the link at the bottom:
Who is the main contact?
Dr Esther Crawley
esther.crawley@bristol.ac.uk
Trial website
http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/smile.html

and it says 'Document not found'

 

[Jenny TipsforME]

There's this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4235039/pdf/1745-6215-14-415.pdf
NB also about SMILE (not MAGENTA or FITNET) I found this curious:

Serious adverse events

Serious adverse events were reported by clinicians from the clinical team or members of the research team to the principle investigator and the sponsor within 24 hours. All serious adverse events were reviewed by the research and development committee.

It is very vague. Were the serious adverse events just in the LP group or dispersed between both groups? How many and what happened? The conclusion is that LP is feasible but then we never get any results re effectiveness. As a comparison this feasibility study also gives the results http://www.sciencedirect.com/science/article/pii/S0735109710027221.

I wonder whether the MAGENTA Feasibility paper will literally just answer the question "is this feasible?" too? In which case the answer is probably "yes".

 

[Countrygirl]

http://www.margaretwilliams.me/2017/public-accounts-committee.pdf

The reply to Lady Mar in response to her enquiry regarding the huge waste of money given to the BPS brigade.

 

[slysaint]

http://www.margaretwilliams.me/2017/public-accounts-committee.pdf

The reply to Lady Mar in response to her enquiry regarding the huge waste of money given to the BPS brigade.

presumably she is also aware of the IAPT roll out and continued targetting of ME and CFS patients for CBT and GET..........more wasted public money.

 

[JaimeS]

If you are a citizen of the UK, and haven't yet signed the #stopGET petition, today is the very last day. Please sign, post to Facebook and other social media sites and re-tweet with the hashtag #stopGET.

The site is down -- total coincidence, I'm sure(!) -- so it's even more important that we campaign personally.

Here is the link: https://petition.parliament.uk/petitions/166601

We just need 2,500 more. We got that in the first few days. We can do it again!

Jaime