The fact they expected this just highlights the whole problem with their viewpoint: they think they should be able to control what is said about their trial. They want to control the narrative. how many other journalists have they put pressure on to share their writings pre-publication? And how many have changed what they wrote as a result of this pressure?
All very good points and easy to forget about when we're forced into a 'ohh yes it is, oh no it isn't' defensive response against the state approved nitwits. (By forcing patients to legitimise their 'ME' Vs 'CFS' the debate over the
cause is nullified).
I wonder who benefits from this and who can manipulate the narrative from this using the media and other allies. How ironic, 'allies'.
The disease denial brigade harassing ME sufferers over the legitimacy of their disease, is the perfect environment, for the
cause of the disease to hide in plain sight, because the cause is never scientifically debated, as long as:
The incorrect diagnostic criteria is used - check
The wrong patients are studied using psychological theories not disease signs (e.g Dysautonomia) - check
Appropriate levels of biomedical funding is denied -check
Applications for biomedical research, are turned down- check
The 2015 narrative becomes psychological or biological or a bit of both which can last another two decades -check
The
disease is defined by a single symptom! - a symptom of subjective nature too - chronic fatigue - check.
To recap:
UK CFS cannot donate umbilical cord, but they need CBT/GET to reduce; fear of exercise'.
It's utterly preposterous the two government based rules exist
in the same time frame, but they do.
Lets think why. And there's your answer. Didn't take long to work it out. The culprit, is novel immunosupressive agent + resulting immune status leading to seronegative pathogens, that
do cause chronic fatigue initially,
before the autoimmunity and brain damage/heart disease/cancer takes hold after decades of untreated infections - so then you have a different disease as it's more than one.
Better assays will change the future. Proving the symptoms of ME are associated to disease signs, and only in these patients
with signs of disease, do you find the pathogens.
That's what is coming next, researching the people with inclusion criteria disease symptoms and signs of ME, rather than researching those without (diagnosis of exclusion), by proving they all share the novel pathogen, autoimmunity, but not the same co-infections .(The alleged irrational patients, will then seems rather sensible and clearly neglected as they insisted they were infected from day 1 and never recovered), as they do have intracellular infections and/or autoimmune diseases.
Hence those in high places, are able silence UK rational scientific debate and thinking, with very good effect, via the Chronic Fatigue of unexplained cause ruse. Something the average person would laugh at, as they feel tired before, during, and after work.
For UK medical propaganda to work effectively against ME, you must control the scientific section of the media with your version of the events using Psych CFS theory as the loud hailer.
This has been achieved. PACE is just a fingerprint of a prior agreement of how to manage an unfortunate embarrassment. Make the patients, the embarrassment to society, and then themselves, by inducing feelings of shame and guilt by denying their crippling disease as psychogenic and their responsibility to recover from.
CFS (designed by the CDC) does that beautifully + the negative media + the incorrect health policies. All in all a tremendous collusion of injustice and non science. What section of medicine could possibly know how to exploit that? Who would know the most about the human mind?