I should make the following very clear: I have seen M.E activists, journalists and charities lie to M.E patients both directly and through gross omission.
I fought against this terrible truth for many years. I checked that activists were happy with their behaviour. I attempted to convince them to change it, but in the end I concluded that deceit was an integral part of M.E activism's increasing march towards extreme bias and personal abuse.
On a personal level I consider M.E patients and charities misleading M.E patients to be far worse than anything doctors could do or have done to us as a group. M.E patients know what the disease is like. They know what the suffering is like. To heap further suffering onto other patients and to obscure their view and hamper their chances of escaping the labyrinth seems to me to be the most awful thing.
Lying in patient activism makes a mockery of awareness raising, for there are now an increasing class of facts that M.E activists must keep quiet about. And lying, like abuse, makes a mockery of science. We lie to gain advantage, to mislead others and to get what we want. Lying is about gaining and maintaining power and influence rather than discovering and sharing the truth as peers.
And of course; lying makes a mockery of the M.E community's vaunted support and care for M.E patients. Lying directly harms those lied about.
In regard to the treatment of the disease, M.E, dishonesty must always now be taken into account. It is a fact. As the war between patients and medicine intensifies so the truth and science (our best means of discovering the truth) are liable to be bent and perverted by both sides.
Back in the 1980s M.E patients were all too often treated as liars. We were discredited, disrespected and dismissed by medicine. It is abhorrent now to find too many M.E patients living up to the stereotype, the narrative, the yoke fabricated to contain and conceal us all.
Lies are damage. Lies are yet further damage for us to work around as we try to learn how to gain better treatment for all M.E patients.
