More PACE trial data released

[JohnTheJack]

I first applied back in 2016. I went through review and then a complaint to the ICO and then all through last year I was in the process of an appeal to the FTT.

The ICO switched right at the end to support me and QMUL settled, promising to send me the data, 'if they could'.

Today I have just received:

EuroQOL (EQ-5D) scores.

Hospital Anxiety and Depression Scale scores in both anxiety and depression sub-scales.

Work and Social Adjustment scale scores.

Borg Scale scores

Physical Health Questionnaire 15 items (PHQ15) scores.

 

[Adam pwme]

Excellent!

 

[Esther12]

Nice one John. Can this be linked with the data already released?

If so, it would be interesting to see how subjective and objective outcomes correlate? We might be able to get some valuable info from all that money spent on PACE!

 

[Cheshire]

What an achievement! Thanks a lot @JohnTheJack

 

[rvallee]

Borg Scale scores

I mean, I can't really 100% confirm but I'm pretty sure I'm not a Borg.

 

[Alvin]

I mean, I can't really 100% confirm but I'm pretty sure I'm not a Borg.

I was going to make a Borg comment as well.
If we were Borg we would not have ME, their technology can control every cell at the molecular level.

At this point being a mindless drone bent on galactic domination would be an improvement.

 

[Adam pwme]

Forgot to ask, does this mean all the data has been released now?

 

[Gecko]

Fantastic, great persistence @JohnTheJack, thank you. Are you able to share the data here?

 

[MEMarge]

Well done @JohnTheJack, you are a star

 

[InitialConditions]

Great work John! I'm sure we'd be all grateful if in your own time you could collate the data and also let us know what hasn't yet been released.

 

[Lucibee]

Forgot to ask, does this mean all the data has been released now?

Not by a long way, I would imagine. There were 60 pages of questionnaires. Then there's baseline actigraphy, step test etc, which we still haven't seen.

 

[Robert 1973]

Many, many thanks, @JohnTheJack . Great result.

For anyone reading this who is not aware, this has involved a huge amount of work – many, many hours of complex legal arguments against senior academics and highly paid lawyers over many months. For John to have achieved this result on his own, with all the limitations imposed on him by his ill-health, is a remarkable achievement. Thanks also, once again, to Alem Matthees, for helping to pave the way.

I wonder if it might be possible to get some press coverage, especially with it being ME Awareness week.

 

[Ravn]

Bravo @JohnTheJack ! Little by little we're getting somewhere. Thank you.

I can't even begin to imagine how you managed to find the strength, despite your illness, to do such a massive amount of work and to persevere until you got a result. I'm very, very impressed and equally grateful.

 

[Forbin]

I could be wrong, but I believe the Borg Scale is a measure of resistance...

 

[Amw66]

To have achieved this in full health would gave been difficult. To do so with ME is amazing.
I think you need to pick your superhero cloak colour !

 

[NelliePledge]

To have achieved this in full health would gave been difficult. To do so with ME is amazing.
I think you need to pick your superhero cloak colour !

Probably white with a big swan on the back judging by his tag

 

[Woolie]

OMG, freakin' fantastic, John! Congratulations!!!

 

[Woolie]

Forgot to ask, does this mean all the data has been released now?

No, not by a long shot. But its a good chunk more!!

 

[Cheshire]

No, not by a long shot. But its a good chunk more!!

And it proves that, unlike what they claimed, it's still possible to access the data.

 

[Sly Saint]

@Carolyn Wilshire