Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

[Amused]

The analysis has to come from someone with authority, or it won't matter. Sadly.

It HAS got authority - it's got 2 professory type people who teach medical statistics, and also David Tuller who teaches things like how to run Medical Trials according to best practice (nope got confused Tuller isn't mentioned in the paper, it's cos I saw it on his FB feed. My brain is mush today I've just managed to eat a stale apricot croissant dipping it into my butternut squash soup and not until the end realising that if it tastes a bit hinky, you DON'T have to carry on eating them together. I didnt' realise it was apricot, I thought it was a plain one. Whilst at the same time tasting apricot and thinking it didn't go with the soup sigh.).

Those guys are heavyweights that others listen to.

 

[adreno]

Did you not spot who all of the authors where?

At the very least those last two look reasonably authoritative to me, with no insult meant to the other authors.

Yes. And many have criticized the trial before, to little avail. It needs to be fairly high profile authors, published in a fairly high profile peer reviewed journal. A blog post isn't going to cut it, however good it is. But it's an important start. I do hope we will see something published, and the general research community taking an interest.

 

[Amused]

However, the Virology guy was the only one willing to take a punt on David Tuller's Epic 14K word Trial critique, he tried other places first, including Retraction Watch (bet they are wishing they'd not played safe now and rejected it at the eleventh hour lol Maybe they'll pick up subsequent stuff now the analysis bears out what he 'speculated' were the issues, not actually speculated cos he knows what he's doing, but he didn't have access to the data) - and THAT is what finally was the straw that broke the camel's back with regard to public awareness and pressure and the medical community (wider than the Trial people) responding. It ended up with letters signed by heavyweights.

This analysis builds on that in that David's article provides the critique that the analysis then proves. So it's entirely appropriate that it is published in the Virology blog. Also, it's more on people's radar screens now, actual professional statisticians are taking notice, it's going to snowball. Especially if we share it. For example by sharing on social media with hashtags, by writing to local press about it, and agreeing to say how treatments have affected us individually, by commenting on it when it pops up on mainstream media, raising it wtih our health authorities or political representatives. We each of us can make a difference by getting involved in a very small way that doesn't take huge amounts of energy. Alem gave huge amounts of his health for this, I feel I need to support that by speaking my voice too.

It's only since David got involved that I have had the confidence to say I was on the Trial and to realise why it's important to do that. That it has wider implications than I realised when I took part.

 

[Amused]

I don't mean that what Alem was doing arose from DAvid's work. Cos Alem did the FOI request first, what I mean is that independently Alem and David's work dovetails to make the case for criticism far more strong.

 

[JES]

Yes. And many have criticized the trial before, to little avail. It needs to be fairly high profile authors, published in a fairly high profile peer reviewed journal. A blog post isn't going to cut it, however good it is. But it's an important start. I do hope we will see something published, and the general research community taking an interest.

I think this is an excellent start, at least it's something that patients can refer to and hopefully cannot be completely ignored by their doctors. Publishing in some high-profile journal would typically need something like half a year of delay from the peer review itself, plus the time to write the paper, so we are probably looking at next autumn earliest. But the substance in this paper seems already very good.

 

[aimossy]

I think it states on Virology blog something about future publishing @adreno . I can't do any more reading to find that though right now.

 

[Sidereal]

The analysis has to come from someone with authority, or it won't matter. Sadly.

Two statisticians from top universities in the world don't count as authoritative? Tough crowd.

 

[Ysabelle-S]

However, the Virology guy was the only one willing to take a punt on David Tuller's Epic 14K word Trial critique, he tried other places first, including Retraction Watch (bet they are wishing they'd not played safe now and rejected it at the eleventh hour lol Maybe they'll pick up subsequent stuff now the analysis bears out what he 'speculated' were the issues, not actually speculated cos he knows what he's doing, but he didn't have access to the data) - and THAT is what finally was the straw that broke the camel's back with regard to public awareness and pressure and the medical community (wider than the Trial people) responding. It ended up with letters signed by heavyweights.

This analysis builds on that in that David's article provides the critique that the analysis then proves. So it's entirely appropriate that it is published in the Virology blog. Also, it's more on people's radar screens now, actual professional statisticians are taking notice, it's going to snowball. Especially if we share it. For example by sharing on social media with hashtags, by writing to local press about it, and agreeing to say how treatments have affected us individually, by commenting on it when it pops up on mainstream media, raising it wtih our health authorities or political representatives. We each of us can make a difference by getting involved in a very small way that doesn't take huge amounts of energy. Alem gave huge amounts of his health for this, I feel I need to support that by speaking my voice too.

It's only since David got involved that I have had the confidence to say I was on the Trial and to realise why it's important to do that. That it has wider implications than I realised when I took part.

It's certainly interesting to hear what patients on the trial experienced, because they've largely been silent voices, and that has allowed the so-called researchers to control the trial narrative.

Edit to add: Obviously it's normal for trial participants to be anonymous, but this trial has shown the problems that can happen as a consequence when bad research is involved.

 

[Countrygirl]

This is so disgraceful that it must surely guarantee White a knighthood.

Now what about Esther and the children.....??????

 

[adreno]

Two statisticians from top universities in the world don't count as authoritative? Tough crowd.

I'm personally impressed. But is the medical community, or the policy makers? I believe some of the authors have even published critique in the lancet before, which went largely unnoticed. I do hope this time it's different.

 

[user9876]

Can really 6% vs 3% be spun in any language? It's nothing.

Not just 6% vs 3% but it is not a significant difference could have happened due to chance

 

[Amused]

Yes they have re silent voices.

For me, I was working in financial services in London. Without my super supportive boss, I would never have been able to go on the Trial. The 'climate' I was working in, I would not have been able to continue my career had employers had any inkling of the health issue. Because with what I was doing - projects and troubleshooting with highly sensitive data and deadlines ie very high pressure work at a managerial level, it really mattered that there was no hint of 'unreliability'. I'd been contracting for half a decade, and I dont' think I even told the Agencies I used until after the Trial was over, and I'd become friends with some of the agents working with them repeatedly that I told them. Oh I also told a doctor at a work medical for the last contract I did late 2011, he said to try it and if I got exhausted, walk away which was sensible advice I feel! I think he said he didn't see a need to report it to the prospective employer as it wasn't well recognised (I'd have got a 'fail' and lost the contract if was I think).

I think it was only when I became severely affected a few years ago, that I realised that I'd probably never work again, so there was nothing stopping me coming out of the 'me/cfs closet'. Obviously people noticed my energy levels did random things but it was never discussed what it was, unless it was close friends or family. Also, I don't think I actually was genuinely unwell with something I couldn't get fixed until I went severe. Before that I always had a sneaking suspicion I was just being a bit feeble. I remember one time a close family member asking if maybe it was in my mind and I enjoyed the attention I got for being ill (sigh, that was long after the Trial but I was still moderate. And to be fair to him, he wasn't well himself. he didn't mean it unkindly. but still). It is hard for the people around you to understand that it's real, cos it fluctuates, and it's hard for us as ill people to understand it too.

Also, until I became severely unwell, I spent very little time on things like FB and hadn't even heard of Phoenix Rising. I wasn't even part of a physical actual ME/CFS group (though I knew they existed - partly cos the Trial people asked me not to join one til after the Trial, and after the Trial I wasn't up to trying to find parking to go to teh meetings). I was all wrapped up in my little world of trying to keep working and not doing much else.

I think people who were well enough to be on the Trial are probably in that position, desperately trying to hold it all together, trying to keep working, look after a family or whatever - it wasn't til I realised via David that there were wider issues to teh trial than I'd thought. Others maybe just aren't aware of the issues. Or have a need to keep their involvement private due to concerns about employer attitudes or family & friends attitudes. I don't know though, I can only speak for myself.

 

[Amused]

Also I think Participants probably wonder what people will say if they say they were on the Trial. Cos people can be horrible trolls online. And if one is struggling, better to keep quiet than be bashed...

 

[user9876]

Yes. And many have criticized the trial before, to little avail. It needs to be fairly high profile authors, published in a fairly high profile peer reviewed journal. A blog post isn't going to cut it, however good it is. But it's an important start. I do hope we will see something published, and the general research community taking an interest.

I think a paper will probably follow but it is important to have a good analysis out quickly as the data is now out.

There are stats professors involved so this is a good quick authoritative output.

The paper uses the original protocol definition of recovered so it is the standard by which the PACE authors said they would judge themselves

 

[Sasha]

I hope people will post comments on that blog, and will share it widely. We should be boosting this as much as we can, and thanking Vince Racaniello and the report authors.

 

[Ysabelle-S]

Also I think Participants probably wonder what people will say if they say they were on the Trial. Cos people can be horrible trolls online. And if one is struggling, better to keep quiet than be bashed...

Yes, it's sad. Participants should be able to comment, if they wish, without any sort of condemnation or criticism. Though of course, there's no reason why they should have to comment. The data analysis is pretty revealing in itself. And we're not even sure if everyone on the trial had ME, and then there's the conflation with ME and CFS, which has questions too.

 

[JamBob]

I'm personally impressed. But is the medical community, or the policy makers? I believe some of the authors have even published critique in the lancet before, which went largely unnoticed. I do hope this time it's different.

I agree with you. For example, over on Bad Science, the skeptic types won't accept anything that isn't published in a "peer reviewed" journal as evidence in a discussion of the evidence. Doctors, healthcare bodies like NICE and policy makers like the "authority" that comes with a peer-reviewed journal publication. Blog posts are too easy to dismiss.

Hopefully the authors will be able to publish a paper.

 

[AndyPR]

@Tom Kindlon posted this on his Facebook page yesterday

so perhaps it refers to this? Hopefully Tom will be able to confirm but I'd imagine putting this together so soon after release has probably take a lot out of him, so we'll probably have to be patient patients..

ETA: Nope, I was wrong, Tom has got something else in the pipeline as well, seperate to this analysis.

 

[dancer]

After years and years of bad days for so many of us, today is a GOOD DAY.

Thank you to all for tireless work.

 

[alex3619]

So as far as I can see SMC was pretty much 'real world' in that no-one bloody listened or had any useful input! Not sure what was supposed to happen though.

That seems to be the real world for most patients, indeed.