Saturday 30 January 2021

Read Paul Garner

 If you want to understand ME (and I won't blame you if you don't want to), you should read Paul Garner's piece in the BMJ, and then you should read the comments after it.

Paul Garner, an experienced and respected professor at the Liverpool School of Tropical Medicine, specialising in infectious diseases, has written about his recovery from long Covid. He also states that he met the criteria for ME/CFS. He used positive thinking, most likely in the form of the Lightning Process, though he is unspecific about that. He then claims to have "looked down the barrel of the ME/CFS gun and disarmed it", a sentence he is quite proud of, as he uses it in his tweet signposting the article.

Not surprisingly, he has been met with consistent contradiction from ME sufferers and specialists who know what they're talking about. What was noticeable to me is the measured nature of the responses. There is anger, not surprisingly, and there is some robust language, not surprisingly, considering that he has just told millions of people that their illness is all in the mind. He is met with polite, albeit vigorous, rebuttal from people with ME, from their carers and from medical professionals who work in the field. I am deeply impressed with everybody who replied to him, because it feels so degrading to have to say, yet again, ME is real. It is not just in the mind, it is not something you get over by having a positive attitude, any more than a broken leg is. Hope can help, but it is not a cure. And when you've hoped for twenty years, and you still don't have a cure, hope feels a bit bankrupt.

Garner's article is a prime piece of gaslighting, perfectly carried out. He phrases his article very cleverly, never quite saying "if I did it, you can do it too", but that is the thread woven into everything he says. Perhaps in the enthusiasm of his newly recovered life he doesn't realise what he has done. I hope so. But I am surprised that a professor of such experience should not have investigated and understood the medical science behind ME, and equally surprised that such an eminent academic should so misunderstand the difference between anecdote and data. And I am surprised that the BMJ should give its powerful platform to such a medically and scientifically illiterate piece of writing.

To Paul Garner: You may have disarmed the gun for yourself, Paul, and I am glad for you that it happened. But you just made the gun blow up in everybody else's face.

To everybody else: if you read his article, and then the comments on it, you may have a much better understanding of the awful, physical, bodycrushing, mindsearing, emotionwrenching reality of ME.

Monday 4 January 2021

Let's fix this country first

 I have thought for a while that Brexit is not just about Brexit. Leaving the EU is only a step on the way for fundamental Brexiters to get what they want, which is to turn Britain into a neoliberal paradise – Singapore on Thames is exactly what they want. That being the case, populism is not going to disappear, because it is still the primary tool for securing that end. Farage has already switched from Brexit to covid: he is adept at latching on to anything that stokes resentment, and we will continue to see the politics of resentment at high intensity for years to come.

For that reason, I think Nick Tolhurst here is right about future prospects but wrong about strategy. I’m coming to think more and more that figuring out how to rejoin the EU is the wrong focus, for two reasons. The first is that the populists will use it against us very successfully: it will actually do us more harm than good. The second is that if we are to be acceptable as renewed members of the EU we have to fix this country first. We have massive problems – the voting system which denies power to people, the Parliamentary system which denies power to MPs, the media system which allows newspapers to tell lies without consequence, the tax system which allows rich people to find all sorts of ways to protect “their” money, the economic system which promotes inequality (and inequality kills, as we are seeing ever more with Covid), etc, etc, etc.

This is a long term struggle. (The Brexiters have spent forty years refusing to accept the result of the 1975 referendum and plotting for this moment.) In some ways we should view it like a military campaign. Don’t fight battles you can’t win – if we focus on re-entry to the EU now, we will not win that battle, we will merely give strength to our enemies. And secondly, you don’t just slam in and fight a battle when it is offered, you first shape the battlefield – you organise your army, you build up supplies, you send small elements to nibble away at your enemies’ strength, you pick when and where you are going to fight. That takes a great deal of organisation and preparation. And you always start with what you have now, not with what you wish you had, So we start with this country, here and now – it’s rotten voting system, its rotten economic system, its rotten political system, its rotten culture which promotes argument over conversation.

So my feeling is we should work on our internal problems, which is a massive job in itself, and let the gravitational pull of the EU gradually repair our relationship to the point where we can begin again to talk realistically about our integrated future.

I end with a titbit: a very interesting thread by German historian Helene von Bismarck on why Brexit does not signal the end of populism.