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.

Wednesday, 19 December 2018

How can we reduce inequality?

First posted on Liberal Democrat Voice.

I want somebody to take away from me what I have and give it to other people.

I’m a pensioner in a comfortable place in the most comfortable part of the UK, the south-east. Our incomes are high relative to every other region of the UK; more of us own our own houses than any other region. Government policy persistently works to protect us and boost us more than any other region. One of the most important considerations for Liberal Democrat policy on inequality must be to reduce the very substantial difference in income, wealth and comfort between the south-east and everywhere else in the UK.

I do not ignore the substantial inequalities within this region as well as between it and others. The village I live in is very comfortable indeed. However, it has its own food bank. The nearest town to me, Lewes, is decidedly affluent. However, it has three food banks. Nevertheless, the more pressing need, I believe, is to fix the massive inequalities between regions. There will be no substantial growth in the near future to enable a pretence that everybody can win. So that means that, if others are to do better, I, and people like me, will do worse. That is as it should be.

There will be many ways to do this. I focus here on two: infrastructure and general spending. In each case, I focus on one aspect out of several possibilities.

For infrastructure, there should be a primary criterion in the consideration stage of projects: how does this spending benefit the regions or the nations? This should apply, even if the project is in London or the south-east. The presumption should be that whatever money is available for infrastructure projects should go to the regions first. Some might object that London and the south-east still need money spent on infrastructure projects. Yes, they do, but for too long they have taken precedence over spending in the regions. That priority should be reversed. If that means I have to wait longer for an upgrade to my railway line, so be it.

We also need to be clear that any examination should concentrate clearly on what is the actual benefit to the region concerning jobs, income and the reduction of poverty. Hinkley Point, for instance, will cost a fortune, but only a small proportion of that spending will find its way into the pockets of local people. So there must be a robust and realistic measure of what the benefit to people in the region will be.

For general spending, I suggest the measure we need is simple, although sure to cause vibrations in high places. That is to re-establish proper and realistic funding to local councils. If money is tight, then it should go first to councils in the regions and nations. I will have to wait longer for my recycling to get up to scratch, and social care will still be stretched here, with painful consequences, for longer than it needs to be. So be it. My comfort has been bought at the price of misery in other parts of the country for far too long.

Monday, 10 September 2018


Seen near Glynde


I met a traveller from a Sussex land,
Who said—“Two vast and pointless trunks of stone
Stand by the road. . . . Near them, on the earth
Half sunk a ticket kiosk lies, whose shattered frown,
And wrinkled schedule, and lack of mirth,
Tell that its attendant well those coupons read
Which yet survive, stamped on these lifeless things,
The hand Supreme that mocked them, and the Artwave that fed;
And on the pedestal, these words appear:
My name is Glyndymandias, King of Kings;
Look on my Ticket Prices, ye Mighty, and despair!
Nothing beside remains. Round the decay
Of those colossal Posts, boundless and bare
The lone and level downs stretch far away.

With apologies to Percy Bysshe Shelley.

Monday, 13 August 2018

The Möbius strip

I have a Möbius strip. On one side of it is Boris Johnson, on the other, any of the nastier ayatollahs. They merge seamlessly into one another. Johnson’s jibe about letter boxes has had exactly the required effect – attention. Two separate issues become one here: Muslim patriarchy and Johnson’s pursuit of power.

Photo by besshamiti on Plixs 

Johnson’s article about the clothing of Muslim women is formed as a liberal wrapper round a racist dog whistle. The liberal wrapper serves to deflect expected criticism of the dog whistle. Johnson is not a liberal. He adopts liberal policies, or at least liberal words, when they aid his pursuit of power. You might equally think Johnson is not a racist. He adopts a racist tone when it aids his pursuit of power. It is possible to adopt a liberal tone without being liberal. It is not so possible to adopt racist tropes without being racist.

If you want to make a liberal point about a particular form of oppression, you do not in the same breath make jibes at the victims of that oppression. If you have to make jibes – and Johnson does – you make them at the perpetrators of the oppression, not its victims. But that was not the purpose of his piece. The purpose was to take another step on the road to power, and in that he has succeeded. Stephen Williams suggests his time might be up. I think not. His latest nastiness has cemented dislike among those who dislike him, but it has also cemented his popularity among the disparate groupings of flaccid to hard right wingers who he hopes will propel him to power.

Johnson possibly did not intend to cause an upsurge in abuse. But he could certainly predict that it would happen – as it has - and was reckless as to whether or not it did.

Any effect on Muslim women was a by product of a step in Johnson’s careless ambition. To that extent we go back to the Möbius strip: Johnson is as patriarchal as any fundamentalist Muslim. And also racist. There is a debate to be had as to whether the wearing of a niqab signifies oppression. In some cases it does, in some it does not. Where it does, the liberal answer is not to ban them. Johnson is fortuitously right there. But instead of enforcement by law, there must be a liberal effort to engage in dialogue aimed at making that particular segment of our society more liberal. We engage in that dialogue. Johnson, slave to his own ego, does not.

Friday, 27 July 2018

In which I fail to write a brief history of Universal Credit

I set out to write a brief history of Universal Credit since 2010, but I realised when writing it that that is not possible, because it is in fact a brief history of government incompetence, falsehood and vindictiveness.

Universal Credit is a great idea that many people have tried to bring to fruit for more than fifty years. It simplifies the benefits system, removes lots of barriers about eligibility, removes barriers to getting back to work, and takes considerable administrative burden off citizens, businesses and the state. However, it always proved too complicated, particularly given the Byzantine complexity of the UK benefit system it was intended to replace. But fools rush in where angels fear to tread, so Iain Duncan Smith, on being given the DWP brief, could not wait to get his hands on it.

Universal Credit will not remove all complexity. Two issues in particular stand out. First, the costs of disability cannot be catered for by any universal credit system. We still need benefits to deal with the costs of living and working for disabled and chronically ill people.

Secondly, it will not deal with housing costs which vary far too much by claimant and by geography. This will be true anywhere, but is more true for the UK because of the febrile state of our housing market. So for both disability and housing costs there still needs to be a separate eligibility- and / or means-  tested system.

Still, if well implemented, it could remove a lot of administration and a lot of difficulty.

The important words there are "if well implemented". The current system is poorly designed but even so might be functional and might do some good, if it were well implemented. But the implementation has been catastrophically bad. Computer systems have been badly planned and commissioned; there has been tinkering with the principles and the practices on which UC operates which has necessitated throwing good money after bad. And they still do not work anywhere near as well as they should. It is telling that one of the DWP’s most stringent critics during this period has been The Register, a non-party-political online scientific and technical news site. E.g.  Department of Work and Pensions internal docs reveal troubled history of Universal Credit.

 The levels at which the benefit is set will not remove many people from the poverty trap. (There is a separate argument to be had about whether UC is affordable. In my view the current level has been set for doctrinaire rather than fiscal reasons.) Other rules, such as the waiting period before being eligible, the determination to pay monthly, and to make access online, are designed to make the system inaccessible (or, at the very least, were made without care for their effect on the claimant).

In addition to this, the current minister, Esther McVey, has continued two of Iain Duncan Smith's most poisonous practices. The first is the Pinocchio style of management whereby any cause for criticism is routinely denied, until it becomes undeniable. The routine is then usually to say, “That was last year’s / quarter’s / month’s / week’s figures. This  year’s / quarter’s / month’s / week’s figures are much better” without actually citing the current figures. Information is routinely concealed. FOI requests are tenaciously and expensively fought – note the two year attempt to keep hidden the documents referred to in the link above from The Register. And information is routinely destroyed. For instance, food bank use has increased markedly in areas where UC has been implemented. A Freedom of Information request unearthed the fact that “jobcentres are told to destroy evidence of foodbank referrals and stipulate; “it is not to be used for any other purpose, including to count/monitor the number of signposting slips issued””.

Meanwhile, the Trussell Trust, a studiously non-partisan provider, has released figures which embarrass the DWP: “Food bank use in UK reaches highest rate on record as benefits fail to cover basic costs”. On average at the time of this report food bank use had increased 13% over a year. In Universal Credit areas the rise was 52%.

And secondly, she has continued his determination to turn the entire DWP, including the UC section, and the various entities to which it outsources its work, into a vindictive machine in which claimants are misinformed, disbelieved, condescended to, lied about and outright bullied, some to their deaths. Many sources can be adduced for that statement. An article in the Guardian provides a flavour. Despite the title, it is not just about IT - “Universal credit IT system 'broken', whistleblowers say”.

So, in summary, it is not possible to outline a history of this manifestation of Universal Credit. Future students of social policy will be unable to tell whether UC as such was workable, because:

- whatever its merits, it is a fiendishly complicated idea whose complexities were ironed out with a sledgehammer. (An idea like this needs years of preparation, instead of which it got months.)
- every complexity that was ironed out was to the detriment of claimants. The welfare of the claimant is a by-product in this system.
- the IT systems on which it depends have never worked properly and there appears to be no hope that they will. (Systems like this need years of preparation, instead of which…..)
- there is a determination at the upper levels of the DWP not to learn but to implement UC with a steam roller, with no care for the effect on claimants.
- lying about its (lack of) progress has been and remains the strategy of choice for ministers.
- UC staff, like every arm of the DWP since 2010, are encouraged, cajoled, and outright threatened themselves to treat claimants as responsible for their own predicament.

The National Audit Office assessment “Rolling out Universal Credit” is excoriating for ministers. But, cravenly, the NAO concludes that it cannot see a viable alternative to continuing to throw good  money after bad, and continuing to throw good people onto an ever increasing scrap heap. That is an abdication of responsibility in the face of government incompetence and intransigence. There is a alternative, to scrap it and start again properly. The damage that would be done to Britain’s finances and reputation is infinitesimal compared to the damage that is being done to the lives and livelihoods of those unfortunate enough to have to claim it.

Thursday, 12 July 2018

Some thoughts on Maria Caulfield’s letter of resignation

Maria Caulfield, MP for Lewes, has resigned her position as Conservative Party Vice Chairman for Women in protest at the PM's position on Brexit. (I love the irony of a woman being called "Vice Chairman for Women".)

Here are some comments on her letter of resignation.

Dear Prime Minister

It is with regret that I am writing to inform you of my decision to resign as a Vice Chairman of the Conservative Party following the collective agreement by Cabinet on the Chequers Brexit deal.

Having attended the briefings provided for members of Parliament, I cannot support the direction of travel in the Brexit negotiations which, in my view, do not fully embrace the opportunities that Brexit can provide.

It is noticeable that in all the resignations we have had, nobody has been specific about what these alleged benefits are. Much has been made, for instance, of a trade deal with the USA. But the detail is missing. And the detail is important, when the President of the USA is clearly intent on starting trade wars at the drop of a hat. And also when he has said specifically that his intention is to make the NHS pay more for their drugs. In trade negotiations with the USA, we will be at their mercy. The logic that we gain in trade negotiations by being part of a large bloc escapes Ms Caulfield.

It is also noticeable that she, like the others, makes no proposals of what alternative scheme is better than the Chequers deal. We suspect that that is because she knows there is none.

For me the backstop agreement for Northern Ireland was neither necessary or constructive for the future prosperity of the UK. Having strong links to the Republic of Ireland I feel the backstop position is not appropriate and should have been rejected. It has been used by the EU as a way of blocking a mutually beneficial deal.

Ms Caulfield’s strong links to the Republic of Ireland should make her aware that the commentary from the Republic is almost uniformly about what a disastrous piece of stupidity Brexit is. (

And again Ms Caulfield fails with the details. Theresa May has promised there will not be a hard border. This is integral to the Good Friday agreement. How does Ms Caulfield propose to ensure this? (She should, please, not mention technological solutions – if the technology existed to secure free movement for businesses across a hard border, it would be in use at hard borders all over the world. It is not, because the technology to do this does not exist.)

It is also disappointing that in connection with Ireland she only mentions prosperity. If she really has strong connections to the Republic of Ireland, she must be aware that peace is at least as important to them as prosperity. There is still too much violence in the island of Ireland, but it is incomparably lower than it was before the peace agreement. The absence of border controls forms an integral part of the peace agreement. Ms Caulfield’s hard Brexit risks bodies and lives in Northern Ireland and the Republic of Ireland. How does she justify this?

The policy may assuage vested interests but the voters will find out and their representatives will be found out. This policy will be bad for our country and bad for the Party. The direct consequence of this will be Prime Minister Corbyn.

Well, obviously some of us rather hope that the result will be bad for the Conservative Party. But who is finding out what here, and who is being found out? Most of the finding out lately has been about the lies, malpractice and illegal actions of the Leave campaign. Very significant overspending by Vote Leave; collusion with other organisations, like BeLeave, to cover up the overspending; the murky source of the massive amounts of cash donated by Arron Banks; his connections with the Russians – his initial confession to one boozy lunch, which rapidly magnified to four meetings, and now to eleven. Illegality and foreign influence leave Brexit with nothing but a fig leaf over its naked opportunism. If Ms Caulfield really respects democracy, she will agree that the British public, knowing what they know now, deserve, and democratically need a vote on the final deal.

Since the announcement on Friday my constituents, whether they voted leave or remain, have contacted me in large numbers to say they do not support the deal and it would therefore be more appropriate to have a Vice Chairman who can confidently defend the proposal.

That is very interesting, given that many of her constituents have considerable difficulty reaching Ms Caulfield at all. How many open access surgeries has she conducted herself this year? And the remain voters will have been contacting her to say they do not agree with this deal because they do not agree with any deal to leave the European Union.

None of those who have resigned, including Ms Caulfield, have said what they would actually do. They do not have any alternative proposal that solves any of the issues facing us. While they promise unicorns, the government is preparing to stockpile food, and plonk generators in the Irish Sea – that is how bad reality has become.

Ms Caulfield owes it to us all now not just to say that she disagrees with the Prime Minister, but to give clear and detailed proposals as to how she would solve the issues about our relations with the EU, the position of businesses, specifics about control of immigration, very detailed specifics about how she proposes to solve the problem of the Irish border while respecting the Good Friday agreement, and many other issues.

I want to thank you for the opportunity of being the Vice chairman for Women, especially during the centenary year of suffrage.

We should be grateful for one thing. At least Ms Caulfield has not told an outright lie in her resignation letter as Boris Johnson did.