In the ME world people turning up and shouting "Tally Ho! Follow me!" are two a penny. We've had it from Sarah Myhill, Valerie Elliot Smith, and now Steve Topple, to name just three that come to mind from recently. Sarah Myhill is into all kinds of stuff I don't agree with, VES has her own brand of feminism and god knows what other axes to grind, and Steve Topple seems to have an anti-capitalist class warfare slant. Going further back, I can remember when there was a clamouring for James Coyne to be our saviour and leader, although to be fair he always said he wasn't going to be.
Although there are many factors that have contributed to our situation, people with strong opinions about any one of them who want to put themselves in the position of leading the charge should expect to be scrutinized carefully by those expected to follow. If they are not dutifully followed, the charge of not showing unity is an easy one to make and is becoming a cliche. "Not very inclusive" is just a variation on that.
At S4ME we examine the science and pick holes in it, and rightly so. I don't see anything wrong with looking at advocacy initiatives critically.
I think Steve Topple is a brilliant writer, but his first article ended with this:
The situation with ME has many threads to it. Not least among these, in my opinion, is the notion that it is part of a wider pandemic of chronic illnesses worldwide. I’m convinced ME has its roots in virology/immunology. I am also certain it is catastrophically under-misdiagnosed. And I’m also convinced the degradation of our bodies via soil depletion, air pollution, poor diet and more is making humans more susceptible to diseases and illnesses than ever before.
This would be an uncomfortable truth for the corporate, globalised world. As it would throw into question the entire system, and how we structure our lives as a species and as a society. It would also add fuel to the fire over our collapsing, corporate capitalist system. So, diseases like ME are far better left ‘unexplained’. And sick and disabled people left on pharmaceutical painkillers and antidepressants. All that is for another article, though.
I'm not sure I'm entirely ready to sign up to all of that if that's ok.
From his second article:
Because PACE, where it comes from and why it’s defended, is the same system, ideology and ultimate disregard for other human beings that defends Monsanto, that defends GM crops, that defends wars, poverty, climate change and everything else.
His third article is about Rampant Classism.
Well I'm not into alternative medicine (sorry Sarah Myhill), I'm not female (sorry Valerie Elliot Smith) and I'm one of the millions of worldwide ME sufferers who doesn't have to spend every day waging class warfare in the UK (sorry Steve Topple). I just have ME. That's what we all have in common. That is what unites us. It is easy for us to unite and fight on the scientific front, which is where our recent progress has been made. It is easy to unite behind the brilliant researchers, scientists and academic journalists who support us. But bring too much politics into it, and watch us fall apart whilst being outplayed by those with far more experience and cunning than we'll ever have or want to have.
Steve Topple writes:
There are going to be journalists and advocates come along, writing about ME and supporting you, who are not doing it for the right reasons. Or they will be compromised and won’t really understand why. But they’ll make out that they’re being fully supportive and really understand what’s going on. Don’t be fooled.
He can hardly expect to be exempt from such scrutiny himself.
He continues:
In the same way these people and the outlets they write for are ‘controlled political opposition’, they are controlled opposition against PACE trial.
“Ye shall know them by their fruits”. They’ll probably come with a Guardian logo. But I’ll write more on this separately.
If this is a dig at Frances Ryan, it shows what his unity is worth. If it isn't, it's very careless writing.
