I set up a website in the 1990s in order to try to help M.E, CFS, and Chronic EBV sufferers. I didn't want patients to feel as lonely and isolated as I had throughout my previous decade of illness.
I replied to thousands of emails from sufferers. The messages I received were ones of thankfulness and relief. A theme soon developed:
"Thank goodness I'm not alone!"
My illness increased and eventually the effort of servicing the website and replying to readers became too much and I took a break from helping.
When I returned to M.E, I found a new theme had developed. Social media had brought M.E patients together and opposition to standard medical treatments for M.E had reached fever pitch. Receiving particular attention was the "Pace Trial" a study that set out to compare the relative merits of certain behavioural treatments for the disease. Patients, and advocates for patients, were deeply unhappy with the conduct of the trial and came together to promote a new way forward in M.E:
"We want biomedical research!"
At the turn of the century a UK charity was set up to promote scientific research. I fully supported the drive towards biomedical investigation into M.E, however I was aware that there was a clear danger that advocates would simply replace one overarching research bias with another. It was important, I felt, that doctors and patients resolved their differences and started to work together. I had to concede, however, to one doctor that he was widely and personally hated by patients. At that moment medicine was at the table but patients were not even close to listening. An opportunity was lost.
Despite the clear M.E patient bias-against and animosity-towards the physicians who promoted behavioural interventions, it was still possible in 2015, to freely discuss M.E on social media. This, however, was soon to change. And a new theme developed:
"F*ck you, go f-ck yourself, fools"
My first indication that the UK group set up to promote science was going off the rails was a report from a patient who'd attended their conference in London. "Things got ugly" he told me. It is a mark of just how far this group has since fallen that I am now unable to report to them that a speaker at their conference feels stalked by M.E patients.
You cannot discuss M.E freely on social media any more. If you try you will soon be approached and perhaps hounded by men and women brim-filled with ignorance and hatred and bias. It is impossible to provide restorative balance to their views because a vicious "us and them" scenario has been so deeply embedded.
These people operate with the clear public blessings of an international M.E group, well-known activists and, most incredibly, academics currently allied to the patient cause. In a grotesque bastardization of science, hot-headed, long-kettled M.E patients are led toward ever more extreme views and behaviour.
And herein lies M.E patients' best hope. The words above do not have to become your words.
M.E patients can reject any and all attempts to radicalize, mobilise or utilise their precious energy.
M.E patients can choose to trust in the scientific method. Science does not need patients to abuse researchers with opposing, (or even inaccurate), views. In fact science thrives on diversity of opinion and shrivels only in the face of bullying, bias, and bloody-mindedness. Those who promote such things reveal themselves to you.
I am sorry, M.E patients. Of all people, I think you are being asked to hand over your last drops of credibility, your last ounces of power, and your lean futures to people who don't even have M.E...
...To people who don't even have M.E.
Resist!
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Note to self: Add 2 sentences describing mainstream M.E charities and activists' public refusal to recognise or to challenge targetted personal attacks on patients and physicians and their conscious choice not to moderate or place any brakes on extreme M.E patient behaviour.
