Michael Sharpe skewered by @JohntheJack on Twitter

I had been trying to make a note of the silliest or most misleading tweets from Sharpe... but there are now too many. I've lost interest. [edit: well, I'll still read through them all every day in a compulsive manner, and use doing so to put off doing anything useful... but I've lost quite a bit of interest].

 

And not by accident. These people prepared deliberately misleading press releases and did panels/press/speaking tours about it.
"I wasn't there" just doesn't cut it. They were all there, promoting and disseminating illegal made up harmful medical fairy tales. Unbelievable that they are not held to account yet for such behaviour. They cannot backpedal and pretend their shoddy trial and their self-created hype about it was somehow separate from themselves. It's like the *definition* of crazy. FFS.

ETA: it's also an awful lot like the three-year-old whose face is covered in chocolate pudding swearing they didn't eat the chocolate pudding

 

Yes, this is a divide and conquer tactic, say something true on one hand and argue to take away people's benefits and torture them with his lies on the other.
as evidenced:

Whats the point of wasting money and having more crap for us to deal with coming from people willing to doctor their results. Anything they publish will be good for their position because they have proved they are willing to lie to prop themselves up and screw us over.

I think this is one of his goals

And this another. Its also about raising reasonable doubt. Finally its probably to have a paper trail to use against us later. However if we skewer him then that paper trail does not help him unless he gets an authority who is willing to fall for his lies which does happen.

Never. As i mentioned in this thread last month
Once PACE is retracted and we have a treatment expect them to still claim there is a psychosomatic component, or they were right all along and the medication just works better, or its an adjunct therapy and so on. The only way to get this out of our disease is to show their malfeasance, get them discredited and kicked out of scientific circles. They will then believe they are just persecuted but no one (except the gullible) will put any stock in their ramblings anymore.

 

Are any of these press releases available?

 

Not just ME/CFS. In general patients with poorly understood conditions will not be safe from them until they are exposed as incompetent and shockingly dishonest.

They've shown some interest in other conditions, like multiple sclerosis, to which they apply the same pseudoscience. And fibromyalgia and others are already being treated like ME/CFS with CBT/GET in some places.

The recent political developments are encouraging but so far nobody has quite made clear how bad PACE really is, and how common this kind of methodology is. They've got a huge crisis on their hands and PACE is just the tip of the iceberg.

 

Indeed, they are dangerous people.

 

I had a look, but I can't seem to find anything from QMUL or SMC, but BBC are usually fairly faithful to what they are fed: https://www.bbc.co.uk/news/health-12493009

The article is quite revealing about how little must have been in the press release.

The PIs have always been quite careful to let others do the inferring and hyperbolising for them, while they "modestly" say, "Oh, it was just a trial".

 

From this press release

But they just told us that PACE didn't really change anything.

 

Divide and conquer

 

They learnt it wasn't effective and wasn't safe, they just didn't tell anyone.

 

Or to use against them. I am thinking about using some of their quotes against the DRV (DWP in UK). Not sure yet...but I see potential.

 

YES! And this is why they must defend PACE with such vigour. If it falls much more may tumble in the aftermath. And they know it.

 

1. PACE clearly did have an effect, insomuch as it prevented changes that should have happened. Saying nothing changed due to PACE doesn't meant it should not have.

2. "We will now analyse the results of this important trial in more detail ...". But as I understand it, NICE typically only looked at abstracts of papers ... how much detailed analysis of PACE did NICE really do, given Dr Fergus Macbeth made this statement?

 

Pretty much, we can use his contradictory statements against him.

 

https://twitter.com/user/status/1004766537344053248

 

re PACE press releases: Loads of them are available. My bookmarks for them are all a mess though - I should be more organised.

eg:
http://www.ox.ac.uk/news/2015-10-28-treatments-offer-hope-chronic-fatigue-syndrome-cfsme-0
http://www.ox.ac.uk/news/2012-08-02-two-effective-treatments-cfsme-are-also-cost-effective
http://www.meassociation.org.uk/201...effective-treatments-for-mecfs-1-august-2012/

The SMC still has lots of CFS stuff on their website too.

 

Psychiatric research does include some important research findings. However standards are lax, and PACE is, as I have been calling it for about seven years now, a Rosetta stone showing us just how bad psychiatric claims can be. They need translation. The methodology often falls short of scientific norms. They play to the tickbox versions of good trial design and good evidence based claims. Its beyond dangerous as this affects millions upon millions of people, far beyond the ME community.

We need psychiatry, or at least something that fills its current roles. However we need scientific psychiatry. No waffly theories. No unproven assumptions. Psychiatry starts with sociology, psychology, and neurology. All these fields are plagued by similar issues, but none are as badly affected as psychiatry. These three could replace psychiatry to a large extent.

I see no reason to consider mental disease as other than a confused mess of social, behavioural and brain problems, all jumbled together and with actual causation still in the realm of myth. We are close to getting understanding of problems like in Alzheimers and Schizophrenia, and perhaps subsets of depression, anxiety and so on, but that is coming from biomedical breakthroughs, not any improvement in understanding mind. There does not appear to be any credible evidence that can differentiate mind from brain function, and social and self learned issues. With brain function its a neurological problem. Social and learned issues vary from brain issues to issues in how society functions.

Behavioural issues are tricky, and really need to be teased out and understood better. I suspect most are behavioural outcomes but due to other things, including brain problems.

Social maladaption can be a brain issue, a learned issue, or an outcome of society. We need to be very careful here because some might consider barracking for a sports team to be abnormal (how can you support team X, they're useless!) and dissing a sports team is the other side of the same flaw. The same goes for political parties, with the very real consequence that because we are often at least partly blind about our favourite party, and our most hated opposition, we fail to deal with issues rationally. Society isn't working right? Government isn't working right? The population are at least partly responsible.

Investigative media is supposed to be a major way to balance this, as is the judicial system. Investigative media is in severe decline just as the world is become ever more complicated. Social media is a quagmire, ranging from the very good, to blatant propaganda, to shear nonsense. Just as government lobbying is dominated by big business, it takes money to fight protracted and continuing legal battles. Most citizens have limited options.

Its very dangerous to treat social issues as mental issues. At most there is conditioned behaviour like with cults, but most of it is social variation, and so subject to changing social trends.

In all this mess the BPS framework is trying to find balance and sense. Yet none of its components are figured out. Its like designing a sky scraper without any understanding of the materials science and engineering needed to construct it. You just hope the building doesn't collapse before its even built. You hope it survives unveiling. You never really look at long term problems because that might mean you get blamed.

Its also no surprise that most things I read from BPS are more bPs, and sometimes just P.

(Spelling edit.)

 

It feels to me like the psychiatric 'sciences' are hundreds of years behind biomedical science, not just in terms of clinical understanding, but also in terms of approach to science. I can appreciate that the brain/mind is fearsomely complex, and that research will inevitably have a much steeper hill to climb. But to me for a long time it seems like psychiatry aims to exploit its own ignorance, and pull the religion stunt instead ... but call it science.

 

"BPS is not an ideology, it's a widely accepted framework for understanding all illnesses"



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