David Tuller: Trial By Error: Yet Another Letter About the Lightning Process Study

Yet another letter about the Lightning Process study

This morning I sent the following letter to Fiona Godlee, editor-in-chief of The BMJ and editorial director of BMJ. I cc-d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP.

 

Much appreciated @dave30th . This is the kind of paper which will no doubt be in the evidence for NICE ( together with FITNET and MAGENTA).

 

Nice one. This SMILE trial stuff burns me up though... reading a summary like this makes me twitch with frustration. I just can't believe how broken British medical research is.

A bit of a typo here?

Prospectively registered?

 

I could have written that. But you can write something up as a prospective trial even if it weren't prospectively registered. So I just meant they presented it as if it were a standard prospective trial. For these purposes, I don't think the distinction really matters. It is omitting key information in any event.

 

Extremely good as always @dave30th. Big thank you.

Whenever I read your blogs, especially these BMJ ones, I get a strong sense of the surreal. As if I've slipped into another universe, where the normal rules I'm used to have been suspended. Someone is presented with incontrovertible evidence, for the umpteenth time over and over, of how they continue to violate their own clearly stated standards ... and their ongoing response is - nothing! As if the natural laws I'm accustomed to have been turned on their head. But surrealism and head-messing seems to be the name of their game.

 

Yes, or perhaps what it might be like to live in a communist or fascist state where "reality" can be defined by the state and where if you don't accept their perspective they can shut you up by claiming you are mentally ill.

 

Excellent Dave thanks so much!

 

That sounds remarkably familiar in the context of ME and the 'establishment experts'.

 

And true to form, it is those doing the anti-science denial who control the messaging and make false accusations of anti-science behavior.

Especially Sharpe's dismissal of all research he doesn't like while making this accusation on critics of his bad research.


It's really time the psychosophists are called out as ME deniers, analogous to HIV and climate change deniers. They do not merely have a difference of opinion, they actively deny the existence of the disease as it is described by competent researchers and experienced by the patients.

 

Thanks @dave30th for keeping pressure on this dangerous undocumented pseudo BS. Among all the important topics to fight, LP is one of the most important. ME-patients (and probably many other patients) should avoid LP for all reasons. So many correctly diagnosed ME-patients have deteriorated and lost health due to this "method". In desperation when meeting no knowledge, many people invested a lot of money and gave LP a shot, often sold by doctors without any clue other than the crazy idea - «it can’t harm». Well. You just can’t step into the «STOP» circle and STOP doing ME. I hope everyone who have experienced LP will use every opportunity to stop these unethical and very harmful charlatans.

 

I actually don't doubt that. It was not an unreasonable challenge to take in the beginning, although the way it was framed early on was incredibly arrogant and unscientific. But reality proved them all wrong and they decided to push through, indifferent to the suffering it brings, going as far as publishing fraudulent research and wildly exaggerating claims that are not even backed by the most sober analysis of their own data.

One part of this is the continued use of obsolete criteria, especially Oxford. They have to be deprecated. They are unfit for purpose and all research based on them needs to be considered as biased and uninterpretable.

ME is not 6 months of unexplained fatigue. It's an absurd mischaracterization and this is key to why everything is so messed up.