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.

Sunday, 22 November 2020

Forty years in the making

 First published in LibDemVoice 22nd Nov 2020

Liberal democracy is in crisis, particularly in the UK and the USA. In the UK we are perhaps bemused at how we could have come to elect such a corrupt, cronyistic and incompetent government, and in the USA there is much debate over how the Trump lump has not gone away despite four years of Trump’s Twitter tantrums.

There is a tendency to view this as a short term phenomenon – what went wrong four years ago, six years ago, even ten years ago. In my view this has been coming for forty years. It has not been inevitable but, during the neoliberal period (roughly from the 80s till today), social forces and personal decision making have moved us steadily towards the situation we now find ourselves in.

In a nutshell, the elevation to power of Thatcher and Reagan marked the start of what was seen to be a move towards freedom, opening up societies all over the world to the liberating forces of the market. This had two sides, globalisation, an ineluctable social force beyond the power of individuals to affect, and the strategy of global elites both old and new, to use globalisation to create new wealth and power for themselves. They have been very successful. So it turned out to be a move towards freedom for some, but by no means all. The elites used liberalism as their watchword, while ignoring the principle of liberalism that their freedom is only valid in so far as it does not compromise other people’s freedom.

At the same time there has been a steady corrosion of community and democratic values, partly because the new markets require it (they don’t work without precarious labour) and partly because of media elites who found that telling lies worked, and political elites who did not care to confront them. People sold on consumer capitalism found easy answers to all the ills in their lives in the lies told them by the media. Rupert Murdoch and Hugh Dacre, among others, spent decades preparing the British public for the Brexit lie. They have succeeded in making many people’s lives precarious and hoodwinking them into blaming others for that.

The reason this perspective is important is that it sheds light on our immediate future. The Trump lump and the Brexit lump are not going to go away. Their defining feature is resentment, honed over forty years. It won’t disappear just because Trump has blown himself out and Brexit has happened. (Farage is already looking for new ways to foment resentment by attacking lockdown.) If we want to make our countries more liberal again, then we have to look at long term solutions as well as short term ones – there is no quick fix for a problem that has been forty deliberate and persistent years in the making.

We still need our short term activity. We can and must fight to win elections and to influence policy. But we also need a long term strategy as deliberate and persistent as theirs has been. The epitome – and the nadir - of the liberal attitude was the remain campaign in 2016, the most disastrously disorganised and inept campaign I have ever been involved in. We deserved to lose. Our biggest mistake was expecting the voters to be sensible. That did not happen and will not happen again until we make it happen. We must seek to persuade over a long period of time – a drip, drip of persistent, deliberate and targeted conversation over many years, if we want our countries ever to be generous again.

Thursday, 15 October 2020

A good read but a flawed conclusion

 Larry Elliott on Britain's covid crisis, a good read but a flawed conclusion, particularly in his observation that in a crisis people change their behaviour. He's right they do, but in different ways, which is why his comparison with Sweden is wide of the mark.

"Scientific models suggested that Sweden would suffer 96,000 Covid-19 deaths in the first wave, owing to its government’s decision to have only mild restrictions, but they presupposed that Swedes would carry on as before. They didn’t, with the result that the death toll is fewer than 6,000..."

The implication - which Elliott does not follow through on, as his focus is mainly on the economics - is that a similar light touch would have had similar results in the UK. I doubt that very much. Sweden embarked on its light touch policy knowing that it could rely on the large bulk of the Swedish population taking sensible steps to preserve not only their own lives, but other people's too.

We cannot, unfortunately, make that assumption about the British population. For forty years, since Thatcher, mainstream influence in our society has been bent towards encouraging people to live lives of self based consumerism, to consider nothing but their own desires. Many people have not followed this path, but far too many have.

We are at the end of forty years of Thatcherite induced consumption based individualism, of which Johnson and Cummings' government is the apotheosis. Some large proportion of our population have accepted what they have been told, that permanent hedonism is their right, and no killjoy is going to come between them and their day out.

We do need our government to change the way they do things. It's not actually about competence. The government is capable of being competent. But competence requires time and energy, and this government doesn't care enough to put the effort in. We need our government to care. That on its own will do a lot to defeat covid. But it won't solve our basic problems. For that we need to change our society, our economy, our politics, in fact our way of life. We need to move away from unbridled consumption and individualism towards a more human centred way of doing things. 

Friday, 6 December 2019

Christmas instore torture

Every year I have a tussle with Tesco when they start playing Christmas music instore. I ask if they are going to play it all the time, and they say we have to, head office tell us to. When I contact head office, they say it’s up to the manager. This dialogue has replayed in different ways every year. This year I decided to ask them some questions. It took two goes on their email contact service due to a character limit of 1000. Below I quote my original query and their reply.

It’s quite ironic to see a reply of this nature just as they have announced joining the yellow lanyard scheme (which Customer Services refer to in their reply).

The tl;dr version of both is this.

- I find the music played instore at Christmas distressing. Does it have to be on all the time?
- You know some of your staff hate it. What care do you have for their wellbeing?
- You know some disabled peope are triggered by noise. What consideration do you have for them?

The answer I got was basically:
- we don’t care about our customers (We do not need customer approval to play Christmas songs in store”)

- we particularly don’t care about disabled people (“if you do have an issue with the music, or the levels of the music, then this can be raised in store, and this will be changed based on the stores discretion”. Every store manager I have ever spoken to says they have no discretion.)

- we don’t care about our employees either (Should staff members have any issues with the music, then , as with our customers, this will be taken into consideration, based on each store.” - I have spoken to a number of staff members over the years, including this year, who hate it, but who can clearly do nothing about it.)

- so stuff you (politely).

What the answer actually says looks quite reasonable. But it is uniformly contradicted by what store managers have told me over the years, that they have no discretion. It also fails to answer the questions I ask about the reasons for the music being played (because it’s Christmas time???) and fails to answer why it has to be played every minute the store is open.

Later edit: and the attitude is contradicted by Tesco Scotland, who have taken a step in the right direction:

Here’s the full version of my message. (The one Tesco got was slightly different, as I had to trim it further to fit within the character limit, and I did not keep a record of the trimmed version.)

* * * * * * * * * * * * * * * * * *

I discovered today that it is once again the time of year when you inflict on your customers the annual mental torture known as "Christmas" "music".

I am sure that some of your customers appreciate it, and probably a large majority don't care either way. But for a minority, myself included, the experience is, as I described it above, torture.

During the summer I was unfortunate to enter the store when there was some kind of charity event on involving three days of dance music. I had to leave rapidly, and the duty manager, to do her credit, came out to speak to me about the experience. She said she had worked in stores which had a regular stimulus free time weekly, which for me would be a great boon.

I know I will not change your policy on this - I have tried each Christmas for several years and had dismissive, inaccurate or unbending responses. But would you please answer some questions. These follow in the next email.

Follows last email
1) What evidence do you have that your customers so enjoy the music that they need it for 3 weeks continuously; and, do you any evidence at all that having the music on helps your bottom line?

2) Does it have to be so relentless? Does it have to be on every hour of every day for the whole of the next 3 weeks?

3) How do you discharge your duty of care to your employees? Maybe some enjoy it or just zone it out. But for some it is torture having to listen to that noise for 8 hours on end. Uncontrolled sound is a major factor in causing mental stress. Do you have any care for reducing the stress on your entire shop floor workforce?

4) How do you discharge your duties under the Disability Discrimination Act? I do not have a mental disability, just a pronounced and physical aversion to this kind of noise. But many people with autism and related conditions are triggered by extraneous sounds. What steps have you taken to make your stores as welcoming to them as to other people?

Rob Parsons

* * * * * * * * * * * * * * * * * *

And here is their reply:

Dear Rob,

Thank you for contacting me, I hope you are well.

I was very sorry to hear about your concerns over the Christmas music being played in store.

We do not need customer approval to play Christmas songs in store, just as we do not require customer approval to play music throughout the rest of the year. Is this something that affects you throughout the year?

This music is played, because it is the run up to Christmas, and not because it has any sort of affect on our bottom line. As with most retail stores, we will play festive music during the festive period. Should staff members have any issues with the music, then , as with our customers, this will be taken into consideration, based on each store.

I am not sure why you would raise the Disability Discrimination act, as this is irrelevant. As with all of our customers, if you do have an issue with the music, or the levels of the music, then this can be raised in store, and this will be changed based on the stores discretion. We simply do not have the foresight to predict when disabled customers will visit the store, so changes will be made on an as needed basis.

In various stores, we have arranged quiet hours, for people with these exact difficulties, as we realise that with some disabilities, this can have a huge impact on them, so we do try to accommodate these issues where we can. We also have a sunflower lanyard available, for people with invisible disabilities, so that colleagues can be made aware of any issues that may be present.

If you do experience any issues with the music being played in store, I would advise that you raise this with management in store, as they will be able to help make your store experience better.

Kind regards

Sunday, 12 May 2019

You don’t know ME

Today is ME Awareness Day. Many people have heard of ME, but the chances are that, unless you have ME, or are a carer for a person with ME (PWME), you do not really know it for the brutal debilitating effect it has. It wastes people’s bodies, fogs their minds and it can crush their spirits.

You might not really know ME because it is very difficult to diagnose. Often people with other fatigue conditions may be lumped in as ME patients. The key criterion for ME, in my opinion (other opinions are available) is Post Exertional Malaise (PEM). In other words you have only a certain limited amount of energy. If you go beyond that, you suffer PEM, which is not just taking a bit longer to recover, it is a crash that can last for weeks or more.

You might not really know ME because you do not understand what it actually does. Making it synonymous with “Chronic Fatigue Syndrome” is one of the worst misnomers ever. It is not just feeling a bit tired, it is not just feeling exhausted. Think of the worst flu you’ve ever had. Now think about feeling like that all the time. Think of constant stomach pain. Think of constant migraine. Think of headaches coming and going. Think of there never being an end in sight. Not everyone has these symptoms all the time; they are variable. But you never know when one is going to strike.

Another reason you might not really know ME is that you don’t see it. If people with ME are not stuck in bed (where you can’t see them) with their face fifty shades of ill, they might be sitting outside. And you don’t know that they can only walk ten yards. The illness is invisible, and PWME pay the same penalty as all the other people with invisible disabilities: people don’t believe they’re ill.

And you don’t really know ME if you think it is curable. It is not. Sometimes people get remission, which is fantastic for them. But many people never do, and all the cures that are touted as being 100% effective, well, they aren’t. Sometimes people get better after a “cure”. All the evidence suggests that it was random, or that they were one of those who had something other than ME in the first place. It also enables people to say that some cures have no side effects so it can’t hurt to try them. Wrong. One case among many: two sessions of acupuncture resulted in two weeks of deep illness. (And please don’t even think of saying, ah, that’s all the bad stuff coming out.)

The lack of robust scientific evidence for much of what happens in the ME world is a big problem, because it enables people to make all sorts of claims that cannot be challenged. If people claim something they really need to say what the evidence for it is rather than saying there is no evidence against it.

You really don’t know ME if you still think that the obvious things which work for other people work for people with ME. Just exercise your way out of it: recipe for disaster. What you think intuitively must work does not. It takes a good deal of attention to your own thinking process to accept that what seems like common sense to you just doesn’t work for people with ME. When they hit that wall that you cannot see, they crash, and there is no genuine way in which they can exercise their way past it.

Another reason you really don’t know ME is that nobody really knows ME (apart from those who have it). Scientific knowledge of ME is still in its very early stages. It is a complex and difficult condition to research. There is nowadays a great deal of work going on but it is like a giant jigsaw in which people are occasionally placing random pieces which don’t yet connect up in any meaningful way. There are many lines of research which look “promising”. No promise has yet borne fruit. It may well be that in ten years time, we will understand what causes ME and we will have cures for it. I have a hope, a desperate hope, that that is so. That will depend on scientists continuing to find more and more pieces of the jigsaw until patterns start to emerge, But we are only at the beginning of that process now. Going into detail about this is very difficult to do in a rational way. The research strands that are taking place are so disparate and disconnected at this stage that the simple way to summarise them is a list, a very long list. I will not do that here, but refer you for further information to Science for ME, which has a massive archive. 

Another reason that you don’t know ME may be that some people have a vested interest in not telling you the truth. This is contentious, and I will be clear here that I am giving you my opinion and that other opinions are available. But many very much better versed people than me share my opinion. Some people would have you believe that ME is a psychological condition and can be cured by strategies such as cognitive behavioural therapy and graded exercise. A subset of those people equate ME with false beliefs, and posit that people can be cured by changing their beliefs. This stems partly from what is called the biopsychosocial model of illness which originally attempted to combine biological, psychological and social environmental explanations of illness so that a holistic portrait of the subject could be constructed. It is not a very good model and, once it entered mainstream thinking, it suffered perversion from commercially vested interests. In other words it was used to emphasise the “psycho” bit so that the focus was put on the subject’s beliefs and thought patterns at the expense of both biological and environmental factors. This was too useful to insurance companies looking for ways to reduce their claims bills to be ignored. And to people like Iain Duncan Smith, looking to punish ill people for being ill.

ME is a perfect playground for the biopsychosocial model because so much about the illness cannot be proved. The most prominent example of this approach is the PACE trial of 2005-2010, a five million pound examination of the effectiveness of treatments such as CBT and graded exercise for PWME. The architects of the PACE trial were highly experienced, skilled academics and scientists with international reputations, or, as I prefer to call them, snake oil salesmen (they were mostly men). PACE’s purported results – that CBT and GE were effective - are still robustly defended by its champions. But their methods and their findings have been dismantled with varying degrees of elegance and destructiveness by statisticians, clinicians and other academics and practitioners from all over the world. The most comprehensive demolition has been by David Tuller: see his Virology blog. An account of the PACE trial and the controversies surrounding it can be found at Mepedia. I won’t go into detail here, but just to give a flavour of the quality of the trial and its amendments, it was possible to emerge from the trial in a worse condition than you went in, and still be deemed “cured” (not just “improved” but actually “cured”).

Why would people defend a trial with such obvious flaws? I cannot see inside the minds of those who do, but I suggest a combination of arrogance, defence of reputation, commercial interest in particular outcomes and professional closing of ranks.

(Note: I do not believe that CBT is useless. It can be an effective tool for managing the condition and getting the best one can out of life within the limits ME imposes. But it is not, and never will be, a cure. As long as powerful people tout it as a cure, it is very difficult to advocate its use for what it can be used for.)

More than that, so many professionals disbelieve it that they regularly investigate parents of children who have it for child abuse or neglect. I can only state in the strongest terms that that should not be.

In a nutshell, it is a condition that, whatever you see on the outside, ruins life for those who suffer from it. It causes pain and extreme lethargy. It is also limiting because of an extreme lack of energy combined with the possibility of post exertional malaise. There is not yet a clear scientific explanation, not even a reliable method of diagnosis, but there is much research going on. A condition misunderstood and disbelieved by ordinary healthy members of the public and, shamefully, by many clinicians and researchers. A condition that takes away people’s ability to live their lives, to follow their hobbies or their desires. A condition that leads to millions being missing from the everyday lives of their friends and peers, and missing in fact from their own lives. #millionsmissing

Monday, 4 February 2019

What should we do with the Palace of Westminster?

First published on Liberal Democrat Voice.

The Houses of Parliament currently function as the location in which Parliament expresses and exercises its sovereignty. It seems obvious that they no longer fit that function well: archaic logistics, terrible accessibility, lack of office and meeting space, and chambers designed perfectly for the cheap game show otherwise known as PMQs, but not for deliberation or wise governance.

Soon the buildings are to have a very expensive makeover during which time MPs and Lords will have to decamp. Perhaps we should make the decampment permanent. Build a site suitable to house the legislative body of a modern democracy.

Some argue that such a building should be outside London. That is a separate debate. But whether it is in London or not, it then leaves open the question of what we should do with the Palace of Westminster. My suggestion is that we should bear the cost of the refurbishment, and then turn them into the home of an Institute for Democracy.

One of the many lessons of Brexit, whichever way it goes, is that we desperately need a way of re-engaging the mass of citizens with the democratic process. People in every region and in every section of society feel, and are, disenfranchised. We can, and should, argue all we like for reform of the voting system and other formal and administrative tinkering, but it will take more than that to re-enfranchise many ordinary citizens.

An Institute for Democracy can have many functions and many forms. One of the possible forms is the holding of regular citizens’ assemblies, in which people from all over the country are randomly selected for invitation to an assembly which may last for several days, in which they learn about, discuss and debate one of the many issues about the way we are governed. Attendance at the assembly might be treated like jury duty, with the assemblees paid for their expenses and their time, and employers and others required to allow them to attend. The chambers of the two Houses can be retained for the purpose of holding plenary meetings of the assemblies.

This would be, in my mind, the main activity of the Institute, but I can envisage many others. It can hold seminars, conduct research, act as a library and a repository for material and data about democracy. It will still be a tourist attraction, and can also attract income from sponsors, sales and hosting events.

Given the catastrophic effect Brexit has had and is still having on our democratic processes, the Institute needs to be set up and to start to do its work well before the Palace is refurbished. It could start immediately, and hold assemblies in all of the different regions in whatever remains of the UK. I would hope that it would continue to do that, one of the biggest problems about the social and economic shape of
our country being the enormous weight attached to London and the south east. The Palace would form a magnificent centre piece for the Institute, but never its only home.

I suggest that this should become Liberal Democrat policy.