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

[Peter T]

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

Try not to worry much about this. Not only do most of us respect your ability to make good choices, but it is important you work on the things that matter to you, the projects you enjoy, as that means you are more motivated and therefor more likely to be successfull.

It is impossible to change everything, but a few significant victories hopefully will start a chain reaction.

 

[Barry]

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.

If that is the main problem, then so far as I am concerned that is absolutely not a problem, and I suspect I speak for pretty much everyone (on our side anyway!). You are a major (seriously major) part of why things are changing. Yes progress is slow, slower than any sane person might have expected it to be, but it is a hell of a lot faster than it would be without you. There are a lot of positives that would not have happened without your efforts, I'm certain of that. There are of course still a lot of negatives, which is why - providing your own circumstances do not make it a problem for you - it would be great if your endeavours could continue. Seriously though, I do appreciate it must be incredibly highly pressured, so only if feasible.

 

[dave30th]

Seriously though, I do appreciate it must be incredibly highly pressured, so only if feasible.

Thanks Barry. It is pressured, but most of that is self-pressure. Trying to contain this as a half-time job is challenging. But my struggles pale compared to those of people who are sick, so there's really nothing for others to fret about. Perhaps I shouldn't even raise the issues because I don't want to worry anybody. When I got teary-eyed on Australian TV for 20 seconds I got so many messages from people (mostly Australians) worried I was having a breakdown or cracking under the pressure.

I'm fine! I love being able to do this work! No one needs to worry about me! But yeah, asking people for money is not something I like. But I will manage to live with the discomfort.

 

[ME/CFS Skeptic]

asking people for money is not something I like.

The ME community funds many researchers through organisations such as OMF or MERUK. Do not think that your situation is that different. You're not asking for money, but offering us your skill and expertise much like these other reseachers. I'm very grateful that people with your skill and experience are willing to study ME/CFS.

I also want to repeat what @Barry said: hope you don't feel obligated to continue to do this. It would also be ok if you moved on to other things. People would understand.

 

[dave30th]

hope you don't feel obligated to continue to do this.

Thanks Michiel--I thought last year things would have moved along more quickly and there wouldn't be as much need to continue for another year. Given where things are at the moment, it seems like another year would be useful. I hope by then there is enough momentum to feel comfortable that change will continue to happen, although the MUS issue is very troubling, especially with IAPT program in the UK. As I mentioned, this project has been and still is immensely rewarding. But at some point, I will need to think about my next act.

 

[NelliePledge]

I have thought of something like that.

From our perspective if you can get more people in journalism/public health to have a good grounding in the issues that’s great and they may pick up the baton when you move on to new projects.

 

[Hoopoe]

We need to begin talking with people outside of our community about ME/CFS.

 

[DokaGirl]

@dave30th

Thank you for your excellent work on our behalf! It means a great deal! Very glad to see you plan to continue. I second @NelliePledge's idea to involve a couple students. I agree with @Skycloud, there might be a book in this - and the movie!

I also agree with you that broadening the ME horizon beyond PACE to other ME issues, might be an idea.


As to ripping up a copy of the PACE trial, I did my own version a few days ago - I ripped up a copy of a BPS book on "CFS".

I considered giving it to a charity shop, but didn't want anyone else to read such nonsense.

It felt great to rip it up, and throw it in the recycling!

I would recommend this as a very gratifying therapy for all pwME.

Thank you so much David for you determination, and continued work for us!

 

[Sean]

I thought last year things would have moved along more quickly and there wouldn't be as much need to continue for another year.

I think you misspelled 'decade'.



More seriously, have you considered pulling together all your work on this into a book, summarising the whole show into a more readable narrative for the average person not informed of the story, including a bit of the history, and its broader impacts?

Could be a good way to tie up loose ends and finish up your work on it.

 

[Barry]

Could be a good way to tie up loose ends and finish up your work on it.

Psssst ... it's not really finished yet.

 

[Esther12]

Thanks for all of the work you've done David!

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.

If you don't mention Esther Crawley's name, than how will people googling her find it?!

It's ridiculous that you've had to write so many blogs about the basic problems with her work to try to get UK authority figures to recognise them.

 

[dave30th]

It's ridiculous that you've had to write so many blogs about the basic problems with her work to try to get UK authority figures to recognise them.

I have no idea what Fiona Godlee at BMJ could be thinking.

 

[Alvin]

I have no idea what Fiona Godlee at BMJ could be thinking.

They probably think your a headache and if you would just go away they could get ME cured.
The weirdest part of ideological obsession is how resistant it is to dissenting information. People will often destroy themselves if it will keep their ideology intact even though its rarely if ever worth that kind of devotion.

 

[Trish]

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

@dave30th I expect you have seen spoonseeker's latest blog which highlights the current scheme of Michael Sharpe and others to re-classify ME/CFS as Functional Neurological Disorder and claim CBT/GET is the treatment - all part of the IAPT cost cutting exercise. The fear is all our work on getting ME/CFS guidelines changed comes to nothing if we are simply re-labelled and ME/CFS ceases to be diagnosed.
And that's not to mention AfME, the biggest UK ME charity continuing to work against the interests of pwME by producing un-evidenced and inappropriate materials like this.
But I am not going to say these are the things you should work on. I trust your judgement in deciding what areas you can be potentially most effective.

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.

I hope you will do another year. I value your work highly. And it cheers me up to have you fighting on our side.

I have no idea what Fiona Godlee at BMJ could be thinking.

That she can get away with ignoring you.

 

[ScottTriGuy]

People will often destroy themselves if it will keep their ideology intact

I have no idea what Fiona Godlee at BMJ could be thinking.

What is Fiona's ideology?

BPS?

Elitism?

 

[Peter T]

What is Fiona's ideology?

Protecting the status quo.

 

[Alvin]

What is Fiona's ideology?

BPS?

Elitism?

Short answer: Think of it like religious devotion

Long answer, it would take a lot of spoons but the short long answer is that once people choose a side they stick to it like glue and will use anything from confirmation bias to distortions to dismissing facts to lies to maintain it, probably because they don't want to look bad and admit they wasted their time and energy but more likely because they believe they can't be wrong

 

[dave30th]

but more likely because they believe they can't be wrong

I know for a fact she knows she's wrong and that these studies need to be dealt with. She is just not doing what she knows needs to be done.

 

[Alvin]

I know for a fact she knows she's wrong

How do you know this?

 

[rvallee]

Thanks Michiel--I thought last year things would have moved along more quickly and there wouldn't be as much need to continue for another year. Given where things are at the moment, it seems like another year would be useful. I hope by then there is enough momentum to feel comfortable that change will continue to happen, although the MUS issue is very troubling, especially with IAPT program in the UK. As I mentioned, this project has been and still is immensely rewarding. But at some point, I will need to think about my next act.

So far everything points to things getting worse before they get better. I don't know if there will ever be any consequences but many people have made horrible decisions from an ideological position and legitimate objections are just too voluminous and consistent throughout the decades. If there is ever true accountability, many careers will be negatively impacted, destroyed in some cases, and rightfully so.

There is just too much evidence that not only was this disaster entirely avoidable, it was largely manufactured by conscious and deliberate choices based purely on ideology and personal beliefs contradicted by contemporaneous evidence. In hindsight, dismissing and contradicting patient input in building an imaginary model that misrepresents an entire disease affecting millions (again, for the nth time!) will just be too much incompetence to ignore. It will require serious reforms in how medicine fundamentally operates.

Things are moving, but there will be a lot of circling the wagons before we end this nightmare. I don't think the lack of visible progress is a matter of concern, far from it. It's building up to a tipping point and will look like nothing is happening until the very last moment. Your contributions are priceless in building up to this.

I think we are the stepping stone in the ideological psychologisation of medicine, leading up to the MUS model, and this explains much of the stubbornness in inexplicably defending objectively bad, even fraudulent in many cases, science. Everyone knows the emperor has no clothes but they just can't stop gushing over it, it's just too embarrassing.