David Tuller: Trial By Error: My Six-Month Review

[Eagles]

Trial By Error: My Six-Month Review

22 January 2019

By David Tuller, DrPH

http://www.virology.ws/2019/01/22/trial-by-error-my-six-month-review-2/

So it’s time again to review my work and figure out what I’ve been doing. My crowdfunding from last April has been covering my half-time position at Berkeley since July 1, so December 31 marks the end of the first six months. The Berkeley fiscal year ends June 30th, so I will need to decide soon if I am going to crowdfund again this spring and continue this project for another year.

I posted 42 times from July 1st through December 31st. A third of these posts–14, if I counted correctly–involved the terrible pediatric studies coming out of the University of Bristol. The lead investigator of the Bristol group, of course, is the former vice chair of the CFS/ME Research Collaborative. Many members of the CMRC now appear to have recognized that the Bristol work is sub-par and does not warrant much consideration...

 

[Andy]

@dave30th , "I had intended to devote more time to both these issues during this time period but managed to do so", surely that should be "didn't manage"?

 

[dave30th]

surely that should be "didn't manage"?

thanks. fixed.

 

[Kalliope]

What an impressive review. Great work, and it is bearing fruit.

The Berkeley fiscal year ends June 30th, so I will need to decide soon if I am going to crowdfund again this spring and continue this project for another year.

Please do!

 

[dave30th]

Please do!

well, I'm tentatively planning to but have some things to figure out.

 

[dave30th]

it is bearing fruit.

I hope so.

 

[Skycloud]

Thank you David. I can see that you are going to have to prioritise what you do between now and June and that may not be easy! There's a book in all this somewhere..

 

[dave30th]

I can see that you are going to have to prioritise what you do between now and June and that may not be easy!

It's so hard! it's a zero-sum game. To write about this important aspect means I'm not spending the time writing about that important aspect. And then those who want me to write more about that get irritated that I'm writing about this instead

 

[MEMarge]

You can't please everyone all the time!

But please know that loads of us are thrilled with all you have done and continue to do. Please keep going if feasible.

 

[Skycloud]

To write about this important aspect means I'm not spending the time writing about that important aspect. And then those who want me to write more about that get irritated that I'm writing about this instead

If it helps I trust your judgement.

 

[Suffolkres]

So do I, implicitly!

 

[Amw66]

Given that your tenacity is effecting change please keep going!!!
I have significant reservations that MUS / FND and IAPT will simply perpetuate issues in the UK- there are too many empires in existence/ being built to enable the change that is desperately needed to happen.
NICE review could simply be a rearguard action- the pressure need to be maintained.

 

[Barry]

I did happen to compare the peer-reviewing and self-congratulatory behavior of the PACE authors and their colleagues to a “circle jerk”—an American summer-camp expression that speaks for itself. (The only problem is that it’s a guy term, so I’m not sure it would be understood to include the many women among the GET/CBT ideological brigades.)

I hadn't twigged the exact meaning of this, so googled it. Yep, now I get the it! In this example I guess it's a very chummy variation on "holding hands" in a circle . So very appropriate.

 

[TiredSam]

@dave30th If you keep going I'll lend you my best T-Shirt

 

[dave30th]

If you keep going I'll lend you my best T-Shirt

Just to be clear, I basically intend to keep going. I just have to gear myself up to ask people for money again, which I don't like to do.

 

[Alvin]

Great article
My first thought was i would love to see this published on Vox. I wonder if they might have any interest in ME/CFS?
Anyone know someone there or want to submit a tip?

 

[Sly Saint]

@dave30th
"I think I might need to vary my act soon! Everyone’s heard it already. It might be time to develop a new talk focused on non-PACE aspects of the situation, although ripping up PACE provides me with great pleasure".

maybe you could expand it eg
"The PACE trial - it's flaws and worldwide impact on ME research and treatment"
then you could cover ECs and others work in using the same bad methodology, perpetuating the 'chronic fatigue' ideology (deconditioning, unhelpful beliefs) and continuing affect on guidelines and treatments across the world, maybe ending on a positive note that the CBT/GET paradigm is beginning to unravel.
It would give you scope to add/highlight other bad research in a similar vein that crops up.

just a thought.

You're doing a great job anyway.

 

[NelliePledge]

@dave30th this might not be workable at all but I wondered if it would be any help to bring in one or two students to work with you as assistants - if you added extra to your crowdfunding target to pay them for x hours a week.

 

[dave30th]

this might not be workable at all but I wondered if it would be any help to bring in one or two students to work with you as assistants - if you added extra to your crowdfunding target to pay them for x hours a week.

I have thought of something like that.

 

[Sasha]

A great six months, @dave30th - much appreciated!