(and how the authors will spend loads of money protecting tainted data)
this is from an aussie news site - if the link does not work let me know
http://www.news.com.au/technology/scien ... 8a12c2e386
DEFENSIVE, MUCH?
Eventually the UK Information Tribunal had enough. It told the PACE trial authors they had to release the data. The authors appealed the decision. They claimed confidentiality of the subjects of the study, although, as the tribunal would point out, the data was all anonymous.
Alem wrote another letter later in 2014. He also provided information and evidence to the UK information tribunal. All this he did through the fog of serious illness.
Sometimes his symptoms — ME/CFS sufferers endure many, but one of the most debilitating is unrefreshing sleep — would lighten for a short period, only to worsen again. Each day was a struggle.
By 2016, the professors of Queen Mary University London were running out of excuses. They had spent a quarter of a million pounds trying to prevent their data being released.
And finally in August 2016, it was ruled they must release their data.
“It meant all the time and effort spent getting it was not for nothing,” Alem said.
Further into the article is some info that may be relevant to MC'ers - about fatigue and metabolism -
that the issues are not evident in standard blood tests
PHYSICAL EVIDENCE
In 2016 scientists working with Prof Davis finally found a physical explanation. It turns out the metabolisms of people with ME/CFS are operating differently from those of healthy people.
That never showed up in the standard blood tests, because the technology for testing metabolism is new.
Now, however we can see that most of the metabolic signatures you’d expect to find in a person are at low levels in people with ME/CFS.
It is like their metabolisms are running on empty (It is worth pointing out that the metabolism study was open with their data. They promptly put it all online, for anyone to look at.)