Its great that there’s a community which can fight together against shockingly powerful, pervasive and insidious opposition.
We need the cacophony of discussion. The eminent doctors dealing with the establishment; the ones prepared to stay at the coal face, treating people with cfs regardless of often terrible personal consequences; the researchers battling for funds; the organisers; the people who stay calm; the people prepared to be emotional in public; the people who lose their tempers and give the journalists material that gets published in the huge-circulation popular press, not just esoteric journals. Because there are as yet no definitive answers, all of them, all of us, have different perspectives, different weapons to bring to the battle. I find it really sad how ready we are to shoot at our own side.
My partner has ‘only’ had cfs for 3.5 years but the impression I have is that, compared to years gone by, change is in the air, things are happening, a lot is ‘bubbling under’. Recently a cfs activist said they found Jen Brea’s Ted talk ‘too whingy’ (it’s been watched 1.3 million times). It’s been suggested that Unrest (4 film awards so far) is maybe too emotional, not adequately educational. Some didn’t support the MEA petition because they couldn’t endorse all its demands (though 15,000+ people signed). Some wouldn’t share the Daily Mail article because it was in the Daily Mail (4 million readership, I’m told). And in this thread one of the only doctors prepared to treat cfs in the UK, who has been hounded by the GMC but never successfully, who probably has more direct experience of treating patients with cfs than any other doctor in the UK, has been demolished by those she’s fighting for.
Each criticism may have some validity. Nothing is perfect. We don’t need it to be. Nothing will ever convey our whole message in a way everyone will hear. We don’t need it to. We need the glorious imperfection of everyone trying their best in whatever way they can. One Ted talk, one film, one video, one symposium, lecture, radio programme, article, forum post doesn’t create change. But all together - that’s a different matter.
Sarah Myhill isn’t everyone’s cup of tea, but she’s probably treated thousands of people who believe they have cfs. If she says something surprising, she may be wrong … or she may have some basis for it. She’s on our side and the video says things that needed saying. I understand she’s got 30 MP’s on side.
Let’s be constructive in our criticism and aim our firepower at the enemy.
No addictions, ever, though I did enjoy a codeine cough syrup a bit more than I'm comfortable with. I've never even smoked or tried illicit drugs. Alcohol intolerance kicked in around the first mixed drink even before ME onset. A daily glass of wine or little cup of sake was about as wild as I ever got.
