Here’s how to begin winning the PACE trial war
The media and medical professions are currently at war with chronically ill and disabled people. It’s a textbook example of the establishment systematically attacking people who it thinks can’t fight back, to deflect from its own disgraceful failings. But what it didn’t expect was the so-called ‘Millions Missing’. And now, it’s time to start winning this war.
Three articles. One story.
As I previously wrote, there is currently a coordinated media war against chronically ill and disabled people who live with myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome). This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.
Firstly, I wanted to put the three articles I have written about this in one place. I hope they provide some useful commentary on the issue, and give people living with ME and their advocates some much needed support.
Article one is about how the media war is being waged:
Article two is about one of the reasons why it is:
Article three is the ‘what’ – what impact PACE trial and its proponents have had, and are having, on people living with ME – some of which I rarely see discussed:
But I also wanted to give mine and Nicola’s thoughts on how we, the ME community and the people involved, move forward.
Don’t let those who would seek to destroy you, beat you:
You are already fighting a disease of catastrophic proportions. We know how hard this is. But the likes of Michael Sharpe and the media? Anything they throw at you pales in comparison to the ravaging impact of ME. You are far, far stronger than them – even if you feel you’re not.
Beware ‘false prophets’ and ‘Trojan Zebras’:
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. 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.
Get clued up:
The research and evidence that blows the fraudulent nature of PACE trial is out there. If you can get your head around it – great. If it’s too much, always have the links handy, maybe saved in a “favourites” folder on your browser. This means you’re ready to drop them anytime, as evidence. The more people putting this out there, the more people will know about it.
Also bear in mind: the current media war probably has a lot to do with the review of the NICE guidelines on ME. If they can solidify now the view that anyone opposed to PACE trial is a ‘abusive’, ‘militant’ ‘activist’, when it comes to the review these opinions will be null and void. Therefore, NICE will be able to keep CBT and GET as recognised treatments.
Use the “ten commandments”:
These are from a lady called Sylvia Waites (a patient of Dr Sarah Myhill’s). Me and Nic know some of them are not practical if you’re time or financially poor, but some of them are on the money:
Thou shalt not be perfect or try to be.
Thou shalt not try to be all things to all people.
Thou shalt leave things undone that ought to be done.
Thou shalt not spread thyself too thin.
Thou shalt learn to say “NO”.
Thou shalt schedule time for thyself, and for thy supporting network.
Thou shalt switch off and do nothing regularly.
Thou shalt be boring, untidy, inelegant and unattractive at times.
Thou shalt not even feel guilty.
Thou shalt not be thine own worst enemy, but thine own best friend.
You’ll be in a far better position to challenge PACE trial and its proponents.
Support each other:
Divide and conquer is a classic tactic of the ‘establishment’, which is ultimately running the show with PACE trial. You see it in every social and political movement in history. They want us to argue amongst ourselves, as it makes us easier to pick off. Don’t do it. We may have our differences. We may all be from different backgrounds. But that’s what ME is like, no? It doesn’t care how rich or poor you are. Nor does it hurt every person in the same way. It’s still the common enemy, though. So we all need to be the common ‘resistance’.
We need to organise across campaigns. Now:
As I wrote in article two, the implications of PACE trial stretch beyond ME. But moreover, chronically ill, sick and disabled people all have a common enemy: it’s the system and its gatekeepers which leave you marginalised; without the support you need; subject to abuse from others, and often at the bottom of society.
Whether it be ME, Ehlers-Danlos syndromes, MS, mental distress – if the system worked in our best interests, you wouldn’t have to be campaigning in the first place.
So, to that end, is it not time that all campaign groups, people and advocates started to co-work, across impairments and illnesses, towards a common goal? One which puts in place the building blocks for a society we all want to see?
Check out Nic’s tweeting on #Zebras and Jen Brea’s #Nightingales. Also check out Dr Emma Reinhold‘s work. These are the starting points.
Merging our experience, stories and talents would make us unstoppable. I truly believe it. And I truly believe in all of you.
You don’t let this disease beat you. So why let a bunch of arrogant medical professionals and the complicit media?
We can do this. I promise you.
Thanks for reading x
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