New blog by James Coyne 2.1.16 Glimpses into the assault on data sharing

[Countrygirl]

https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/

I doubt much of the scientific community outside of the UK would agree that a FOIA should be required to obtain data from a publicly funded trial. As was seen with the PACE trial, considering requests for data as FOIA requests hopelessly bureaucratize the simple provision of data as requested. There is no limit on the silliness of reasons used to refuse a FOIA request. It then takes time to appeal a refusal to release data to the UK’s Information Commissioner’s Office. Then, the investigators can appeal the decision of the Commissioner against them, delaying release of the data a number of months.

If Peter White is serious about advancing knowledge of “the causes and treatments of this debilitating and misunderstood illness, ” why doesn’t he simply embrace what the rest of the international scientific community sees as a way of advancing knowledge – availability of data for others to independently evaluate claims that are being made and test their own novel hypothesis?

Hopefully PLOS One will disregard the PACE investigators vexatious conversion of my request to a FOIA for data they’ve promised would be available. I look forward to a retraction of their article if they do not provide the data immediately.

 

[Hilary]

https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/



Hopefully PLOS One will disregard the PACE investigators vexatious conversion of my request to a FOIA for data they’ve promised would be available. I look forward to a retraction of their article if they do not provide the data immediately.

Peter White complains about the damage done to science...... what, I might ask, about all the damage done to PWME by the use of CBT and in particular GET? Where is his concern for them? And as for the time he has apparently had to waste responding to FOI requests, well there is a very simple answer to that. His effrontery appears to know no bounds.

 

[Sean]

Bleats Prof White:

We need science in the UK to be protected or it will continue to be damaged as this trial has been (other examples include climate change science, and research into the health effects of tobacco).

You, sir, are a disgraceful contemptible coward for trying to claim the fair criticisms of your dodgy research are any way comparable to the genuine serious intimidation that climate scientists and researchers into the health effects of tobacco have faced.

Hand your data over to the scientific community to properly and independently check your work.

 

[A.B.]

... the genuine serious intimidation that climate scientists and researchers into the health effects of tobacco have faced.

Could you give some examples?

 

[Gijs]

I would like to know the real reason from those 2 patiënts why they wanted to retract their data.

 

[TiredSam]

I'm not really up on the history of PACE, but why on earth were the authors allowed to produce a report on ME in the first place? If you ask a group of BPS quacks to produce a report on ME, of course they're going to come back recommending CBT and GET - it's what they sell. Why wasn't a multi-disciplinary team including immunologists, neurologists etc asked? The problem here isn't bad science, it's no science. This BPS sales brochure dressed up as science is going to make the UK a laughing stock. Who allowed ME "research" to be put in the hands of these self-aggrandizing sociopathic nutters, can we follow the trail back and fire a few people? And then can we have some scientists looking at ME in the UK please?

And thank-you Mr Coyne, again.

 

[A.B.]

I'm not really up on the history of PACE, but why on earth were the authors allowed to produce a report on ME in the first place?

I don't have a complete picture of the story but I have some suspicions. In the late 80's CFS burst into public awareness. Wessely and White were eagerly promoting psychosomatic explanations right from the beginning (there are old articles to verify this).

I think they succeeded because they carefully created the illusion of having an effective treatment and a good explanation. If you read their articles, they also regularly play the cost effectiveness card by mentioning how much CFS patients cost the health care system, how medical investigation is unnecessary and often harmful, and so on. They knew how to make their approach look good in the eyes of managers and accountants.

They also pandered to prejudices and stereotypes which can be viewed as political populism.

I suspect that there was little opposition to their ideas because nobody could come up with a biological explanation and treatment which appeared similarly effective. At least in the eyes of the people ultimately making the important decisions. Psychosomatic explanations can only thrive in the absence of biomedical understanding which was the case.

In the end those managers and accountants just went with White and Wessely because it seemed to be more helpful, cheaper and easier than the alternatives.

So basically I think they succeeded through politics and spin. Same thing they're doing today. They just dropped the obvious pandering to prejudices and stereotypes. However, biomedical understanding is growing, people are realizing this cannot possibly by psychosomatic, and the fake science has been exposed as such. They're in trouble. Eventually the house of cards will come crashing down.

 

[Esther12]

I would like to know the real reason from those 2 patiënts why they wanted to retract their data.

There are so many reasons that a new CFS patient might happily sign up to PACE, and then after doing some reading decide that White, Chalder and Sharpe were not people that they wanted to be involved with!

 

[worldbackwards]

I'm not really up on the history of PACE, but why on earth were the authors allowed to produce a report on ME in the first place? If you ask a group of BPS quacks to produce a report on ME, of course they're going to come back recommending CBT and GET - it's what they sell.

You've answered your own question there. It's the same reason that, when the NICE GDG was set up there were 20 odd doctors on there who supported CBT/GET and a couple of patients who didn't.

It's convenient, cheap and accepted by the establishment - why not?

 

[Chrisb]

In the end those managers and accountants just went with White and Wessely because it seemed to be more helpful, cheaper and easier than the alternatives

The question is, did the administrators go along with White and co, or did White and co go along with the administrators? It seems now to be largely forgotten that this was a time of unrest and uncertainty with the setting up of internal markets within the NHS. Mental health provision was considered to have been destroyed in about 1986 with adoption of the policy known as "neglect in the community."(Officially, care in the community). The market for psychiatrists had been adversely affected no doubt leaving them to look for alternative ways of filling their time.

To know what went on it would be necessary to have Kenneth Clarke, William Waldegrave, Virginia Bottomley and Peter LiIley questioned about the policies. It is unlikely that the truth would become known.

It might have been expected that administrators looking for a solution would look to the Maudsley which must have been heavily involved 70 years earlier in the reclassification of shell shock to neurasthenia to NYD-N, with a view to reducing potential war pension claims.The Maudsley was the home of Frederick Mott, the then expert in the field. It is no coincidence that Wessely was to become the "go to" man on gulf war syndrome. The template seems to have been taken from the filing cabinet and reused with the effect desired by the administration. The detriment to ME sufferers does not seem to have been a concern. Detriment to shell shock sufferers was the deliberate intent of the former policy.

 

[adreno]

I don't have a complete picture of the story but I have some suspicions. In the late 80's CFS burst into public awareness. Wessely and White were eagerly promoting psychosomatic explanations right from the beginning (there are old articles to verify this).

They probably saw this newly described syndrome of medically unexplained symptoms to be the perfect opportunity for them to push their psychosomatic model. No one could refute it.

 

[A.B.]

The question is, did the administrators go along with White and co, or did White and co go along with the administrators?

As I said I don't have a complete picture. I do think that they weren't "given permission" but rather gradually claimed CFS as their turf through politics and spin. With approval and probable support from certain interest groups.

 

[sarah darwins]

Wessely was to become the "go to" man on gulf war syndrome.

He did a nice job on Camelford, too (aluminium sulphate dumped into water supply, poisoning many locals and causing ongoing illnesses) ...

"We suggest that the most likely explanation of the Camelford findings is that the perception of normal and benign somatic symptoms (physical or mental) by both subjects and health professionals was heightened and subsequently attributed to an external, physical cause, such as poisoning … " paper by Wessely et al 1995

A couple of years ago the government issued an unreserved apology to those affected by the poisoning of their water supply, yet Mr Wessely doesn't seem to have been held to account at all.

 

[BurnA]

He did a nice job on Camelford, too (aluminium sulphate dumped into water supply, poisoning many locals and causing ongoing illnesses) ...

"We suggest that the most likely explanation of the Camelford findings is that the perception of normal and benign somatic symptoms (physical or mental) by both subjects and health professionals was heightened and subsequently attributed to an external, physical cause, such as poisoning … " paper by Wessely et al 1995

A couple of years ago the government issued an unreserved apology to those affected by the poisoning of their water supply, yet Mr Wessely doesn't seem to have been held to account at all.

Sir Wessely.

 

[Research 1st]

It seems the term 'Sir' can be an embarrassing British award, for example:

Sir Allen Stanford - swindled billions of dollars from investors.
Sir Anthony Blunt - later found to be spying for Soviet Russia..
Sir Benito Mussoini - Italian dictator, later executed.
Sir Jack Lyons - RBS boss stripped of knighthood.
Sir Jimmy Saville - known offender to authorities and prolific child rapist.
Sir Lester Piggot - Jockey later jailed for tax fraud.
Sir Nicolae Ceausescu - known dictator, later executed.
Sir Roger casement - later executed.
Sir Robert Mugabe - known dictator.
Sir Fred Goodwin - Oversaw collapsed bank deal requiring UK tax payers to fund $66 billion.
Dame Jean Else - professional misconduct.

The list is surely to grow in the future for other celebrated individuals, who at the time of the 'award' are likely performing a wonderful service for a certain group, at the expense of others. Usually innocent people.

 

[Art Vandelay]

I'm not really up on the history of PACE, but why on earth were the authors allowed to produce a report on ME in the first place? If you ask a group of BPS quacks to produce a report on ME, of course they're going to come back recommending CBT and GET - it's what they sell. Why wasn't a multi-disciplinary team including immunologists, neurologists etc asked?

There's an old adage in the bureaucracy that governments don't commit large amounts of money to studies unless they already know what the results will be. In this case, they gave funding to the quacks because they knew what the conclusions would be (and that was the result that the government wanted). That PACE is bad science is immaterial to them.

 

[alex3619]

I posted this in another thread, but its relevant here too:

I have blogged on Zombie Science. Its rampant, and occurs when financial or political interests drive the research. See for example:

http://forums.phoenixrising.me/index.php?entries/the-zombie-age-part-a.1333/
http://forums.phoenixrising.me/index.php?entries/the-zombie-age-part-b.1334/

 

[Cheshire]

A bit off topic (but not that much)

The New England Journal of Medicine (NEJM) just published an editorial about data sharing, comparing further use of released data to parasitism:

A second concern held by some is that a new class of research person will emerge — people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.”

http://www.nejm.org/doi/full/10.1056/NEJMe1516564

The scientific community is reacting strongly, watch out #researchparasites on twitter: https://twitter.com/hashtag/researchparasites?src=hash

Maybe this hashtag could be used to highlight PACE team refusal of sharing data...

 

[sarah darwins]

The New England Journal of Medicine (NEJM) just published an editorial about data sharing, comparing further use of released data to parasitism:

"... , or even use the data to try to disprove what the original investigators had posited."

What sort of scoundrels would use researchers' own data to show that what the researchers had posited wasn't true? Can't have that happening now, can we. Might lead to an outbreak of science.

 

[Sasha]

Might lead to an outbreak of science.