IiME Letter to the Medical Research Council CEO re: PACE - Sept 2016

[AndyPR]

Dear Sir John,

UK Charity Invest in ME wrote to you in February 2016 regarding the PACE Trial (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial).

We reminded you of the MRC’s own policy requiring data and in this new era of openness and in this new era of supposedly open and transparent science the public, who fund the MRC, expect that the MRC would act in that way -

"Publicly funded research data are a public good, produced in the public interest, which should be made openly available with as few restrictions as possible in a timely and responsible manner.

To enable research data to be discoverable and effectively re-used by others, sufficient metadata should be recorded and made openly available to enable other researchers to understand the research and re-use potential of the data. Published results should always include information on how to access the supporting data." [1]

In your reply of 18th February 2016 you stated –

Continued at http://www.investinme.org/newslett-Sep16-01-a.htm

 

[user9876]

I think the MRC have handled PACE very badly.

Their head of governance dismissed issues that are still raised and that shocked the American academics that Tuller talked with.

http://forums.phoenixrising.me/inde...e-from-the-mrc-to-hooper-pace-complaint.8867/

To quote an excert

I acknowledge that there have been changes to the protocol for the PACE trial since it started. It is not uncommon for minor protocol modifications to be made while a trial is in progress; all such modifications must be approved by the Trial Steering Committee (TSC), the Data Monitoring and Ethics Committee, and the MREC that approved the original protocol, and they were in this case. In addition, the MRC Board was aware of the changes when it agreed to the extension to the original funding period for the trial, so clearly the Board did not consider the changes undermined the trial.

The same head of governance then appeared in the tribunal to try to stop the PACE data being released. Could this be because it would expose issues around the protocol changes. Although this was in 2011 so prior to changes in the recovery protocol which I suspect were never approved by anyone. But that is unclear and Rawles (the MRC head of governance) was still trying to block release to that data.

I think the minutes at at the end of this article

http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

Talk about harassment including FoIs (being the most damaging form of harassment) but brings up a house of lords debate. But then the MRC who are present at that meeting appear to sign up to a campaign to claim harassment and against the FoI act. To me this is a basic issue of the MRC signing up (as a government agency) to oppose mechanisms that keep them accountable.

To me there are big issues of accountability at the MRC and I would be concerned that when IiME raised issues with the head of the MRC he passed them on to his colleagues. Would that be the same person as dismissed issues and who had opposed the release of data.

 

[alex3619]

If the principle of open data were adhered to there would be almost no FOI requests. Problem solved. This appears to be a typical bureaucratic response of defending the status quo.

One of the big problems of the last century is the slow and steady dismantling of institutions, rules and regulations that pertain to principles of governance. There have to be sufficient checks and balances, or very slowly things become unfit for purpose.

 

[SilverbladeTE]

If the principle of open data were adhered to there would be almost no FOI requests. Problem solved. This appears to be a typical bureaucratic response of defending the status quo.

One of the big problems of the last century is the slow and steady dismantling of institutions, rules and regulations that pertain to principles of governance. There have to be sufficient checks and balances, or very slowly things become unfit for purpose.

The Neoliberal and Ayn Rand-groupies have managed to spin what SHOULD have been the switch to a more open, fair minded burecracy and Public Bodies, into a horror where things like a corporation has been employed by the British government to oversee "who's really disabled or not"...and then criminals in that group have had a deliberate policy of fraudulently denying people are disabled to fit a greedy, corporate and ideologically driven EVIL.

*NUMEROUS* whistle-blowers and documents support this FACT about how this one aspect of what should be Public (government) only area has been sold for profit, and became a corrupt monster
AND NOT ONE PERSON HAS BEEN CHARGED FOR FRAUD OR MURDER FOR IT.

The British state was actually one of the most repressive and secretive in the entire world, it was just very good at hiding it as long as it kept it to certain areas.
For example, covering up how Britain created the first post-war nerve gas (agent "V") , and the workers who manufactured it and the later much nastier American -mproved VX were made dreadfully sick, with symptoms very like M.E.
God only knows how many poor sods the bastards probably illegally and secretively tested them on as well (as they did with Sarin, which at least we know for a fact they did, and killed people doing it)
But the State certainly covered up the workers disabled and death producing those horrors and thus, set the "stamp" on how things would be done for pesticides poisoning and M.E.

Note: the Russians further improved nerve gasses and created the NOVOCHOK agents
those were so horrific the researchers themselves contacted the West to break the secret of them!
their aim was to get the government of Russia to stop making the horrendous stuff, because it was killing the researchers even with all their precautions because it was that potent and importantly to note, how it was killing those who survived the incredibly tiny doses was by inducing cancer in almost every cell affected by that poison
note massive rise in cancer in recent years in the West and think on why that's occurring.
we are doing too much damage in too many ways to our immune systems and DNA
centuries of heavy polluting industries then adding many poisons inside car fumes, volatile chemicals in paints, pesticides, you name it...all add up

The "sea change" that went on in the 1980s politics in the West alas, became ideological and inhumane, and any extreme is bad.
With a background of cultures immersed in secrecy and denial of problems as a de-facto methodology, they thus went on to DEMAND things like M.E. were *buried*
Health insurance corporations had no wish to pay out and we KNOW they were capable of mass murder by defrauding customers in the USA so that tells you the evil and likelihood of them demanding corrupt politicians and bureaucrats cover up M.E.'s reality
Likewise links/issues with similar illnesses had to be part of this "blanket of denial" from SEVERAL reasons and groups, including pesticide manufacturers and the SOBs responsible for the insane evil demand to keep and manufacture Weapons of Mass Destruction and the terrible crimes they did in the Cold War making and testing them.

Corporations bought over scientific journals and labs, and the corporates had largely absolutely no scruples what so ever, except the next Quarterly profits.
In the UK, the "Elite" go to university together, many are related to each other, a "noveau nobility" as it were, so we saw the cosy and grotesquely corrupt "House of Cards" scenario grow, like a mirror image of the Soviet's Elite political class
"Scratching each others backs" for advancement without scruple, they have helped create the obscene system we see today.
Patients are instead now "customers"
disabled are now "financial liabilities"
and the Truth is their worst nightmare, but since their buddies own most of the newspapers and TV stations, the "sheeple" are fed the "Mushroom Treatment" 24/7, hence the Brexit mess and flagrant abuse of the disabled in the UK happened because of that garbage.

Feels like I'm watching a modern re-run of the 1930s, and this time the UK is on the side of the potential "Axis" that things are twisting towards