Special Report - Online activists are silencing us, scientists say Reuters March 2019

Lucibee said:
It might have been matched in terms of contact time with the therapist, but it certainly wasn't in terms of the amount of "homework" that participants were expected to do.
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Absolutely. One of the spin offs of our discussions is to discover how sloppy technical terms like 'controlled trial' are. 'Matched' here sort of means 'parameter matched' for a particular context parameter and very often an experiment needs matches for several parameters. In immunochemistry we might have up to about six sorts of matched control.


Lucibee said:
Also, I'm not sure that we are seeing true "placebo" effects here. The improvements can be explained almost entirely by therapist effects, helpful-patient effects, and most importantly, intervention education effects - in that the therapies were specifically designed to change how the outcome questionnaires were completed. Patients weren't simply feeling better because they were receiving therapy. They were being instructed to feel better. There is a big difference.
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Again, absolutely. In my advice to the NICE committee i am intending to point out not only that we know to expect a potential big placebo effect (from the rituximab experience) but that therapist-delivered treatments pose much greater problems of these sorts you mention than most drug studies, so PACE is the worst case scenario on almost all counts for bias.

Lucibee said:
And from my own experience of therapy, if a therapy is going badly, you don't tell the therapist. You give the impression that things are going well so that you can get out of there as quickly as possible without causing yourself any further harm.
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Like this.
 
They had homework for APT?

It's been said before but APT isn't even what patients practice and they certainly don't use a therapist to pace themselves, who does in any illness?

The PACE trial told us nothing about pacing as practised by patients didnt it?
 
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Andy said:
My opinion about this wave of pro-BPS researcher articles? It shows we are making progress, even maybe that we are winning.

If they felt secure in their position, they wouldn't be putting these things out - they see our efforts as a big enough threat and therefore are trying to counter it. And, to an extent, these efforts actually work against them. I've seen evidence in both the Times comment section and on Twitter, where people, seemingly previously unaware of all of this, are saying, paraphrasing, "wait a minute, this presents only one side, I'm going to read up on the other side, oh, it looks like the patients may actually have a point"..
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Yes, and it seems Sharpe is aiming for some own goals again.

I have to catch up with this thread yet, but so many new posts on this and other threads are cheering me up after my passages through some Twitter ravines.

I chose to be not on Twitter for diverse reasons, but I actually find it a very helpful platform. And thanks to Twitter Mike Godwin joined the list of signatories of the Open Letter to the Lancet.

It's good to see so many forum members in such a short time debunking the recent Pace Trial authors' and apologists' efforts to defend their flawed work.
 
@Jonathan Edwards, do you think this study would also be useful for your NICE presentation? It shows how unreliable subjective outcome measures are in separating out placebo effects from real effects in an asthma study.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154208/

A placebo inhaler and sham acupuncture both appeared, on subjective questionnaires to be as effective as albuterol. But on the objective (Forced Expiratory Volume) tests only the albuterol was effective.

The graphs in the paper show the difference clearly. (Figures 3 and 4).
 
Andy said:
My opinion about this wave of pro-BPS researcher articles? It shows we are making progress, even maybe that we are winning.

If they felt secure in their position, they wouldn't be putting these things out - they see our efforts as a big enough threat and therefore are trying to counter it. And, to an extent, these efforts actually work against them.
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I agree. The tide is definitely turning, and they’re feeling it turning away from them. And over time we’re just gaining strength: new researchers, more allies (SW’s own goal with Mike Godwin comes to mind). These are people trying to hold onto their legacy, their reputations, and their power, but it’s slipping through their fingers. Their tactics often backfire on them now (I’m thinking of how the PACE story moved beyond our the community during the ICO process, via the open data community, many of whom were astounded at the lengths the researchers went to to avoid having to share their data). It must be so frustrating for them, living in this new world where they can’t just pull the SMC strings and have the media hype their work.
 
strategist said:
Yes. It was a complicated program. The homework was keeping several kinds of diaries, planning activities and so on. https://me-pedia.org/images/8/86/Apt-participant-manual.pdf

Ironicall, I think one of the first things I would drop from my life was such a complicated program because it's not essential.
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Since worsening of symptoms after activity is a key feature of the condition they were trying to study it would have been sensible to match the activity levels required for each intervention.

Edit: Removed superfluous 'a' in first sentence .
 
Trish said:
@Jonathan Edwards, do you think this study would also be useful for your NICE presentation? It shows how unreliable subjective outcome measures are in separating out placebo effects from real effects in an asthma study.
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It would help make the point but I think the background on placebo effects is well enough understood. I have limited space so will focus just on ME/CFS trials. What happened with the rituximab trial was pretty similar to what happened with the anti-viral trials.
 
Mike Godwin re-joins the conversation:










Meanwhile, Dr Kate Stein appears to have deleted her tweets supporting Sharpe. I infer this because the Tweets now appear as “unavailable” on my Twitter feed but when I click on her Twitter handle I do not appear to be blocked:

87EBC14F-72C7-439F-8DA0-F90ED64A2675.jpeg
 
MSEsperanza said:
My impression is however that Quasar is being defended and excused by other pwME and now feels encouraged to add more vitriol and unproven accusations to their tweets. That shouldn't happen IMO.
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I didn't really see defence (I could well have missed it - I've found the last few days wading through twitter a bit dispiriting), but alongside the criticism I saw people talking about how the pain, suffering and hardship that's a part of ME/CFS can make bad behaviour understandable. But almost all bad behaviour in understandable when you think about it. The bad behaviour of those in positions of authority is understandable. So?

Some people on twitter seem a bit ego-driven in a way that ends up harming any advocacy efforts they're linked to. If people want to use twitter to express their pain and anger without thought ofthe consequences, that's up to them, but it would be good if they first tried to disassociate themselves from any sort of advocacy effort related to ME/CFS. If anyone wants to contribute to advocacy work then they are going to have to start thinking about whether their actions will hurt or harm, persuade or put-off. Sending insults to researchers only benefits those trying to discredit patient concerns. It wouldn't surprise me if that Quasar tweeter was happily hurting other people's advocacy work in order to get the ego thrill of being in the newspaper.
 
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As it seems that Reuters has the capacity to identify and locate those who tweet, perhaps they could do the same with this individual and run a story on his motivations and expectations and the effects he might have on advocacy attempts.
 
Something struck me though with whats going on in the twittersphere;
pwME are condemning the likes of Q for their behaviour yes; but aside from that this whole current onslaught from the Psychosocial camp does appear to have galvanised the ME community as a whole and 'drawn a line in the sand'.
 
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Webdog said:
If ME/CFS researchers are truly leaving the field, why does there appear to be so much more research happening now than in the past?
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That is the core of their grievances. Their triumph was eliminating the competition and that making it to the finish line was the victory. Now the race is back on and their shortcuts have been eliminated, they don't stand a chance. They've been privileged, carried the whole way, for so long that they treat a level playing field in which their ideas compete on substance as fundamentally unfair.
 
Jonathan Edwards said:
Sadly, I don't think that is the case. The medical versus medical push in the UK in the early 2000s came from patient-based groups and patients and advocacy groups continue to push the idea. The UK Parliamentary debate hinged on the medical versus mental idea. The IOM report hinged on the medical versus mental idea. Forward ME have always focused on it. MEAction make use of it, as does IimE.
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But it's fundamentally an issue of mischaracterization. The response would be identical if podiatrists or chiropractors had pushed their own "mechanical" or gait or subluxations or whatever model. It's not the specifics of why it's wrong, it's that it's fundamentally wrong because it contradicts our experience.

And they know that. There are several physicians out there with their own treatments. Hardly anyone particularly vouches for them for the same reasons: they don't work. Myhill's intentions are good but her treatment proposals seem to not be much more useful than the psychosocial paradigm and they are basically treated the same way. If either worked it would show.

The entire framing of mental vs medical is meant to change the conversation from the real issue, that it is contradicted by lived experience and a decades-long body of research, to a fake one. But the debate and controversy exist only because their model has achieved dominance. Yet it's ironic that they insist they do not claim (officially) that it is mental anyway so this debate is just fundamentally dishonest because it depends on mischaracterizing the words of thousands, including hundreds of academics.
 
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