Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

Apologies - I haven't read all the posts, but am wondering if anyone has contacted child protection authorities about this secretive therapy being used on children. I think the Minister in government would be the person to go to. This seems to have child protection issues written all over it.

Has the mainstream media been advised of these goings on? I totally understand one is often screaming into the void when trying to engage with mainstream media, but thought it might be worth a try.

It is absolutely astounding that a study of such low quality, using such a questionable process could get published, and now cited as effective. How low can this go? And, as others have said a secret process cannot be replicated by those outside this inner circle.

If it can be fairly confidentially ascertained that children are told to keep secret what goes on in the therapy, and coached to lie about their symptoms, child protection should be very interested. But, if I were reporting this, given the eminence of some involved in this process I would alert the top level officials.

 

Various relevant people are aware of concern. Whether it would be productive to contact child protection authorities directly at this point I am not sure. As far as I am aware LP is not actively being used in the NHS at present. Publicity may not be in the interest of those originally involved in the trial. It would be preferable if a policy emerged through the normal governance channels. That may not happen but I think it is worth giving the relevant people the opportunity to respond.

 

I would agree that this route would be preferred. However how much time is reasonable for those required to act to act?

The trial is being touted worldwide as evidence of efficacy of LP, affecting children in countries without social healthcare systems as well as providing a pyramid selling scheme to those desperate for improvement for their children.

 

Thank you @Jonathan Edwards

I understand there are the usual channels. However, as we've seen there is a built in resistance in many if not most government channels to act quickly if at all. If I'm not mistaken, this study was published in 2017. As @Amw66 said how long is it going to take before meaningful action is taken? With the recent review saying LP is effective, this embarrassmet of a "therapy" has gotten legs.

Probably most western countries have some regulation about reporting child abuse. Some jurisdictions have a requirement for all persons to contact child protection authorities if they have knowledge of child abuse. In some areas it is also considered an offence if the knowledge of abuse is not reported.

 

I would say a week or so.

 

Some have probably come across this website: The Skeptic's Dictionary, written by retired philosophy prof, Dr. Robert T. Carroll, from Sacramento City College. Dr. Carroll has been investigating controversial beliefs for about 50 years, and has written about the Lightning Process. This includes details from someone who took the course. Dr. Carroll notes this Chalder study in his commentary:

https://www.ncbi.nlm.nih.gov/m/pubmed/22989369/?i=2&from=trudie chalder


Here is the link to Dr. Carroll's commentary on the Lightning Process:

http://skepdic.com/lightningprocess.html



The following link about ME research at Stanford is at the end of Dr. Carroll's references on the link just above:

http://med.stanford.edu/chronicfatiguesyndrome.html

ETA: I am very sorry to say Dr. Carroll passed away in 2016.

 

A nice quote, amongst a good many:

"Then, he'll fix it. You can expect 70% improvement after the first day and by the end of the third day 85% are fixed.*(Unfortunately, Phil seems to have pulled these numbers out of his arse.)"

 

Yes, good quote.


I think skeptics' groups might possibly be a worthwhile place to engage with re the PACE trial etc.

 

Pretty sure have cropped up in S4ME before.

 

Has any skeptic other than Coyne actually passed the PACE test? Other professionals, sure, but people who make it a duty to be bullshit detectors? Sense about science nailed it, but only the US branch so it's a bit of a toss-up.

It's seriously a great test, one that reveals that most skeptics are just as gullible as anyone else. It passes all the style and eminence but fails substance, which skeptics clearly rarely ever actually check. It would be interesting to put every skeptic to the test while it remains published. After that obviously every "skeptic" will claim to have seen through it but it'd be nice to have the receipts.

 

@rvallee

I don't know if there are any skeptics out there who would see through the PACE trial, but providing them with some writings on this including David Tuller, Jonathan Edwards, Caroline Wilshire, Tom Kindlon etc. might convince. And, hopefully they would take it from there and write about it.

 

Just a bit of a diversion, but I was trying to imagine what a skeptics' conference would be like - not the formal presentations, but the informal conversations.....

 

Its an interesting angle to pursue, i think we should keep it in mind.
It may also backfire because the scientists will just tell the authorities patients are out to get us and this is scientifically valid, both lies but coming from someone in power they might believe it without real research.
That said we should try if we can manage it somehow. Any volunteers?

 

I liked the idea that people should concentrate on the language. Upon reading the Chalder abstract the word "opportunistic" jumped off the page.

EDIT spelling

 

In the Chalder link posted under The Skeptic's Dictionary, the Results talk about some dissatisfaction due to the secrecy surrounding the program, the intensity and the feelings of blame if the treatment didn't work.

There were discussions earlier about whether there is secrecy involved with the LP.

 

The first rule of fight club is that you don't talk about LP

 

Before the trial started the ME community tried to get it stopped. There were petitions and contact made with the likes of Barnardos and the NSPCC, and the ethics committee. The only result was that they decided to use children over 12 instead of 8 (8 years old and told you are ill because it is your own fault, it makes me feel sick) and now EC uses that as part of the "harassment" she receives.

I no longer give to any of these charities as I have no respect for them. They are not interested in the welfare of children or they would have looked closer at the allegations.

 

http://www.virology.ws/2019/06/03/t...s-letter-to-bmj-dr-godlee-about-the-lp-study/