PD White's efforts to stop a researcher accessing PACE Trial* data (cost:£5m of UK taxpayers' money)

[Research 1st]

if they won't release data from a publicly funded trial, then the entire thing smacks of fraud, sod 'em

only personal and confidential commercial data (such as a drug's manufacturing process but not it's chemical nature) should be allowed to be held secret in medical trials

Really, I think it's best UK patients come together, in time, and sue the Department of Health (who run the NHS) as a joint effort. At the end of the day, NICE went with CBT GET as a treatment for ME, with no scientific evidence that CBT GET was 'evidence based'- NICE is branch of the Department of Health.

They also created 'CFS/ME', not the CDC, but the DOH, and denied Myalgic Encephalomyeltiis, despite the W.H.O accepting it. That in itself, is indefensible.

DOH should have been smarter and created two conditions. ME + CFS. That way, they could have prevented the ME patients from suing them, but, by trapping ME inside CFS, there was no where for the ME patients to go but with Psych CFS and get injured by CBT GET as this was recommended for 'CFS/ME' as 'safe and effective' - when no evidence existed. There's the fraud part.

Ironically, the DOH could counter sue the MRC (MRC funded the research that the DOH rubber stamped). DOH could say they had no idea that the research was flawed and trusted the MRC to fund 'high quality studies'.

Perhaps in the future the MRC will split CFS into clusters of disease (psych and organic), believing this will stop the legal action. It won't, primarily as a % of ME is a progressive fatal disease, and also leads to autonomic nervous system damage (autonomic neuropathy and also nerve damage - peripheral neuropathy).

The poor patients who lost their lives, due to the ruse of ME = CFS = 'Beliefs' have not been forgotten about. Naturally, their surviving family members will sue, and the patients damaged by the process of autoimmunity and infection (proven with tests), will also sue.

Once the congenital paper is published, the proverbial will hit the fan.

Blaming patients born with the pathogen (shared by multiple family members) that switched on, during an inflammatory trigger (such as EBV) is never going to look good on anyone's CV.

 

[Esther12]

The recent White letter to private eye made me think of this thread, and their refusal of the request posted on virology.

 

[Keith Geraghty]

i have written on this matter under the thread in question