Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

https://twitter.com/user/status/1168937358013714433

 

Thank you for dogged determination.
Are these letters something NICE should be aware of ?

 

You can be sure members of the NICE committee are being made aware of these comments.

 

Thank you

 

Something I noted yesterday from a discussion between Parker and Sten Helmfrid, it seems that the SMILE trial is so unconvincing Parker prefers to either pretend it didn't happen, that it was not a proper RCT (obviously but Crawley and BMJ sure pretend it is) or that it did not resolve questions about its efficacy:

https://twitter.com/user/status/1168466106933268480


Which correctly admits there is still no reliable evidence, apparently not a problem to continue promoting it, though.

SMILE has been cited a few times already as positive evidence of LP. But it also doesn't exist outside of a friendly audience who is not bothered with details and think any kind of BS treatment is fine here since there is no disease. Bit like the illness model behind PACE, which is a mature framework that also does not exist since all they did was compare treatments. It seems like strength of belief is the only outcome predictor here, as irony would have it.

More research is always needed, more of the same, to test whether it's effective, but it already is if you want it to be, because there is evidence, but it can't be quantified and you can't verify because the first rule of LP is you do not talk about LP.

 

https://lightningprocess.com/wp-content/uploads/SMILE.pdf


https://lightningprocess.co.uk/who-let-the-trolls-out/

 

This could go on like the game "I packed my bag":

I have signed a letter which was sent to you on 27 August about the pediatric study of the Lightning Process.
Following the e-mails of Professor Ola Didrik Saugstad (Oslo, Norway), Professor Vincent Racaniello (New York, USA), Professor Elisa Oltra (Valencia, Spain) ....
I would like to add to the serious flaws they already presented.... (reitering all the flaws already presented before adding another one)

 

Great letters. Reassuring that Tuller and others keep a close eye on this very important matter. From a academic point of view it is vital focusing on the important formal process needed in order to secure that studies are as little biased as possible, the process of registration and protocol and more. Such important procedures are obviously not in place here and seriously in breach with the Helsinki declaration. It is horrific that a journal, that supposedly should be more interested in transparency and procedures than anything else, pay so little attention, bother so little. At least that is what it looks like.

To the academic process above, I would add the importance for BMJ and other major players to actually look at and consider the costs and results of LP for many patients more closely. It just might be damn testimonies in someone’s eyes, but let’s not forget what LP actually means to many patients in the real world. As we know for start, there are all kind of diagnostic problems with ME, ME/CFS, chronic fatigue, fatigue, burnout, lots of different labeled as one, that give room for all kind of experiences with LP. Alarm bells should be going off.

What is an undeniable fact though, is that many patients, patients experiencing PEM, patients already squeezing every inch of health for upholding life, they experience further decline when taking on LP. And to lose even more of “health, getting harmed is the ultimate price.

Patients barely able to participate may try LP and they end up even worse, when literally standing on paper on the floor telling themself that they are DOING ME. Every patient brainwashed, may go out after three days saying they are fine, but what happens in the longer run, some months, a year, two years. What was the patient able to do before LP and after? What is quality of life before and after LP?

LP has significant potential of harming patients with devastating and long lasting effect. If doing the total opposite of what in fact is needed, if totally missing out on what is really the problem, it’s not hard figuring out that consequences can be dramatic. That is the case for many patients.

A journal knowing the extremely muddy waters of “ME”, knowing that many patients get seriously harmed without any chance to just bounce back to prior to LP, a medical journal should never ever publish this piece of crap or anything else related to LP that not even has got the regulatory sides of a scientific process right. Those bloody alarm bells.

 

The other big issue with the LP for children may be outside the science but is surely relevant. Parents are desperate for a cure for their kids but they also have the additional psychological pressure of not doing something that could have cured their kids.

Years ago a woman on an ME forum with 2 sick kids phoned AfME and Mary Jane Willows assured her that LP would help her kids. She was trying to work out how she could borrow the money to pay for it.

Having a positive scientific paper published in the BMJ can only make the situation worse.

 

You are right.

 

This.

 

MJW heads up children's services at AfME

 

Yes, this.

 

Of course. Just like PACE was the definitive, final trial, that settled the matter once and for all but also "we are being silenced from doing more research". Even though PRINCE is basically a half-PACE with the same dubious methodology and there's some weird FITNET-part-deux or whatever ongoing. More research is happening but also it's being silenced. A RCT would settle the matter but also look at this RCT which settled the matter. Zero accountability or anyone even bothering with being self-consistent.

Weird how the "double-blinded placebo-controlled" has disappeared from the gold standard, as does the implicit rejection of unblinded trials and self-reported outcomes. But only for arbitrary exemptions, obviously.

 

How well is Martine McCutcheon? Visibility wise I havn't seen a difference.