'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

His twitter spats generally end with him leaving a permanent record of his unpleasantness and making an increasing number of observers aware of what we've been up against. I'm always delighted when MS goes on twitter, because it's only a matter of time before he shoots himself in the foot and makes a complete fool of himself, again.

 

I hope that Bastian and Butterworth will reveal some of their discussions with Sharpe - but I fear he will swear them to secrecy.

 

Do you think Simon has invited her for a beer yet?

 

This could be interesting:
https://twitter.com/user/status/1095571176770940928


From: https://www.eventbrite.co.uk/e/maki...ll-this-time-be-different-tickets-56168260780:

Note that the event is at Kings College London.

Another date for your diary @Jonathan Edwards?

 

SMC could host a debate in front of journalists between Bastian/ Butterworth, and Sharp/ buddy to coincide with this event. Transparency.

 

Sadly I will be away again.

It will be fascinating to see which side all these people finally decide they are on. A play for @Robert 1973 to write. It starts off seeming as if you know which side everyone is on - and they think they do too- but gradually it becomes clear everybody has a foot on both sides. What happens in the end?

Glasziou writes articles on how not to make mistakes in trial methodology but joins Larun to say the evidence for GET is fine.

Bishop supported various people whose names I forget but now is cheerleading for Bastian it seems.

And of course SMC ans SAS were set up to clean up all misunderstandings in science.

I think something like this comes in to the Pirates of Penzance or HMS Pinafore.

 

DrPH to you!

 

Why the capital H?

 

Doctor of Public Health, not PhD?

 

yup, that's what it stands for. I never heard of this degree before going to Berkeley. In US it's considered a "professional" doctorate rather than an "academic" doctorate. Like we have PsyD as well as a PhD in psychology, or an EDD as well as a PhD in education. Theoretically, the academic doctorates are to "discover" new things and the professional doctorates are more pragmatic and focused on how to implement/translate research into practice. But that split falls apart in the real world.

 

Aha. It's much easier over here. DD for divinity, MD for medicine and PhD for everything else pretty much. (We do like to have everything backwards.) I think we may have Literary degrees too. Of course Oxford gets all the names wrong, as ever, and I wouldn't know about the University of Weston Super Mare.

 

I don't think Hilda realises what a magnificent statement she has made - in every way - with her blog post on PACE. I left a comment on PLOS, which she published earlier, she has thanked me (on Twitter) for my 'eloquent comment' and says she will respond on the blog. It is music to my ears after so many years of seeing pwME being blocked/disparaged on Twitter by scientists who accepted PACE as some kind of absolute truth and who could and would not tolerate patients challenging them.

 

It is clear there is potential for conflict of interest, and given the circumstances here, I think it was likely a reality. But in the general case, how is such a potential CoI managed? I can see that in reality there will be many cases where researchers may well have played important roles in developing measuring instruments, but that alone should not block them from research using those instruments - indeed their overall expertise is likely invaluable. But it feels like great care is needed here, and I'd like to know how it is dealt with.

 

The key step is establishing whether or not a potential conflict results in a real conflict with the common good. That has to be decided by peer review of things like the Chaldea scale and Oxford criteria and their proposed use. In the case of PACE, peer review at MRC and NIHR should have identified their unsuitability. In some ways the most egregious failure in all this is not that of authors who did not understand what they were doing, but of organisations with 'experts' who should have applied basic principles of methodological quality.

 

She knows it's a magnificent statement. First and foremost, she's been a 'consumer' advocate in the medical field for decades.

 

Is anyone else experiencing difficulties with registering with PLOS or posting comments on the website? I’d really like to post a comment on Hilda’s blog but I keep getting server error messages! Very frustrating!

 

Thank you @Jonathan Edwards! It would be absolutely wonderful if you were to do this

 

In case you hadn’t noticed, Hilda Bastian is the creator of the above cartoon and the cartoons in her blog. It seems she is quite a talent! You might like to check out her website Statistically Funny (“commenting on the science of unbiased health research with cartoons”):

https://statistically-funny.blogspot.com/

Clinical Trials - More Blinding, Less Worry!
https://statistically-funny.blogspot.com/2018/08/clinical-trials-more-blinding-less-worry.html

The articles seem to be quite accessible and with the addition of the comics, they’re entertaining too! This makes them great for sharing to raise awareness of some of the scientific issues related to PACE.

 

I have booked a ticket...

 

The current page for this event has changed.
This is the original, as @Robert 1973 #124 above:

‘Making Science Reproducible: Will this time be different?’
About this Event
Fiona Fidler, a philosopher and historian of science at the University of Melbourne is currently investigating the “reproducibility crisis” in science and Hilda Bastian, a scientist who has worked for PubMed Health, the PLOS One Human Research Advisory Group, and Wikipedia’s WikiProject Medicine will reflect on past attempts to fix methodological problems in science, and consider how we can best take advantage of the current interest in reproducibility to bring about change.

Today the page reads:
"Fiona Fidler, a philosopher and historian of science at the University of Melbourne is currently investigating the “reproducibility crisis” in science. She will be joined by Dorothy Bishop, (Chair of UKRN advisory board) and Chris Chambers (UKRN executive) to reflect on past attempts to fix methodological problems in science, and consider how we can best take advantage of the current interest in reproducibility to bring about change."

https://www.eventbrite.co.uk/e/maki...ll-this-time-be-different-tickets-56168260780

I wonder why Hilda Bastian appears to have been replaced?