Tuesday, 10 May 2016

"Do you know what psychosomatic means?"

I was asked this by an earnest counsellor, who I am sure was only trying to help. Lots of people, my GP included, subscribe to the psychological model of ME. I can understand why but I believe that it is unhelpful and damaging to treat on this basis. I should hasten to add that while my GP is 100% convinced that all my problems are psychological, she is very helpful and supportive and has made every referral I've asked her to.

So, why is psychology a dangerous assumption to make about ME? Many people have mental illnesses who struggle to get recognition and support from a society that is hypocritically disinterested. I say hypocritically because a mind bogglingly vast number of people have mental health problems and they are repeatedly told that these issues are equally important to those of physical health, and funding is even regularly announced, yet somehow it never reaches those who need it. Mental health has suffered the most severe cuts since the austerity agenda kicked in, and it had been significantly cut back well before the financial crash that provided the excuse for austerity in the first place. Mental health conditions are real, can be severely disabling and get precious little help. There should be no shame in having a mental illness. There often is, but there shouldn't be. I've seen good people ask why ME sufferers are so keen to have their condition recognised as physical? Is it simply that they are prejudiced about mental illness?

But that's not the problem. It's true that mental health services are stretched beyond their ability to cope so adding ME to their workload wouldn't help anybody, but that's not the issue either. The problem is simply that if you make the wrong diagnosis, you supply the wrong treatment and the condition doesn't improve and often it gets a lot worse. The purely psychological model of ME denies any physical problem other than muscular deconditioning. Fix your head, it says, and your body will follow. Ignore any physical symptoms. Push through the pain. Solve these limiting thoughts that tell you that you can't do this stuff and eventually you will fly once more. The recommended treatment is cognitive behavioural therapy, to fix the problems in the head and graded exercise therapy, to get you moving again.

If ME was indeed simply down to psychology this approach should work. However in most cases it doesn't. In fact it usually exacerbates the condition. Those who try hardest suffer worst. In many cases someone who was a little limited by the condition after therapy becomes house or even bed bound.

So the first problem with the psychological model is that it doesn't work and even makes people worse. Sadly that's not the only damage it does. It's far more insidious than that. By assuring patients that the pain and fatigue is all in the head, it calls into question all sensory information they receive. If the pain I feel isn't "real" what is real? Can I trust the evidence of my eyes and ears? Do my thoughts deceive me? What about the IBS problems? How have I managed to make them up? Am I a bad person?

There are psychological problems associated with any physical illness or injury. Anything that limits life can trigger depression and anxiety. These can both produce physical symptoms. The picture isn't clear cut. But by insisting that a physical problem is solely of psychological origin, you can exacerbate the actual problem and create new mental heath issues borne of the stress created by inappropriate treatment.

To fall back on a hackneyed analogy, if you had a broken leg, you'd need to put it in plaster, wait for it to knit and then build it back up to strength. If you tried denying that the leg was broken and tried using it without physical treatment, it would likely get worse and the pain would be excruciating. Why should ME be any different? Several pieces of research suggest that there is something physical going on at the cellular level. Doesn't it make sense to follow these up rather than pour resources into brutal denial?

That's why ME patients insist that there's something physical going on. Many also have mental illnesses, but these won't go away without dealing with the root cause. We need more biochemical research.

Monday, 9 May 2016

ME Awareness

May is ME awareness month (alongside a number of other, similar conditions). I've had ME since 1996 when I had glandular fever. This year marks 20 years of varying degrees of severity. I first blogged about it in 2009 here. Since then, I've deteriorated and have less function. I can't work. I can't often write. A phone call can be extremely tiring. It's difficult to explain all the effects without sounding morbidly self pitying and that's not the point of the awareness month/day. The day itself is this Thursday, 12th May.

We're surrounded by awareness events for different conditions to the point that it's easy to feel desensitised. What's the point of awareness if you can't do anything about it? Well, you can. There is precious little research done into ME and much that has been done has focussed on psychology and ignored the physical effects. Some biochemical markers have been identified, as have several possibly mechanisms that might explain the condition. There are also a few potential treatments out there, but there's no money or political will to invest in exploring these. Without backing the promising research can't progress from being a possible explanation or treatment which leaves patients in limbo. Awareness is the only route to more political engagement and therefore funding. If you become more aware, there's a chance you might write to your representatives at all levels of government and change might come.

On Wednesday, there's an awareness-raising drop-in session for MPs which is hosted by the All-Party Parliamentary Group (APPG) on M.E. It includes lunch and is conveniently located in Room A, 1 Parliament Street. It's on at 12.45pm until 2pm. If you have a few minutes, please ask your MP to go along or send a representative. You can email them using Write to Them.

I was going to write about the problems a sole focus on psychology creates, but that will have to wait for now. If you see this before Wednesday, please do me a favour and contact your MP. It could make a difference to many, many people.

Thanks. I appreciate it.

Sunday, 8 May 2016

So, Labour, eh?

I've said it before. I find politics fascinating and yet abhorrent at the same time. There are a lot of loud people with nasty opinions out there. The media distorts things and has an inherent bias. Party politics distorts stuff too, but with overt bias. The truth is an early casualty.

I'm frustrated by the discussion over the local election results. They were being spun as potentially calamitous for Labour and specifically for Corbyn but in fact they held reasonably steady. Pundits predicted a loss of 150 or so council seats. Labour lost 23 and held all but one of its councils. In the mayoral contests Labour won London and several other cities. It lost 13 seats in the Scottish Parliament and became the third placed party. In Wales it lost one seat and remained the largest party. It was a mixed bag of results. Despite it not being the meltdown the pundits predicted, the media story has become "Corbyn loses seats at a time when he should be winning big", the argument being that opposition parties win big in mid term local elections and as Labour hasn't, this is a failure of his leadership. Quite quickly the story is one of meltdown, even though it wasn't. Meanwhile, Corbyn supporters are spinning this as wild grass roots success because, in the face of a hugely hostile media, losses were minimal and Labour won London. Critics in the party then quickly point out that Khan distanced himself from Corbyn and his success was one of going for the centre and following the New Labour formula.

The reality is neither, and possibly both. The problem is that the commentary and much of the Labour Party is totally ignoring that we no longer live in a binary political system. We used to have three party politics, where the Lib Dems would generally take one or other side. We now have multiple parties being squeezed into a binary system. UKIP won a large number of seats in Wales and in England. The Lib Dems picked up more new councillors than UKIP did. The Greens remained static in England but gained four new seats in Scotland (NB the Scottish Green Party is a separate entity to the Green Party of England and Wales, but they are affiliated). Plaid gained a new seat in Wales. The SNP lost its overall majority in Scotland but remained the largest party by a long way. It's a complex picture and we really oughtn't keep on talking in terms of Labour vs Conservative.

Council elections are still held using the outdated first past the post system which really cannot accommodate multi party politics. This is also the system still in place for general elections. It's showing its weakness now more than ever because it becomes very hard to determine public opinion based on election results. First past the post, or its equally arcane abbreviation FPTP is suited to binary politics, where everything is one of two choices. Labour or Conservative. Black or White. This or that. "Don't like the government? Well, would you rather have the other lot? Didn't think so. So put up and shut up." Even our parliament is arranged by government and opposition. Debates are for or against. You can amend a motion, but then it's voted upon as yes or no. Nuance, subtlety and complexity are stifled.

If every party other than the governing one is supposedly in opposition, there are five major opposition parties other than Labour. There are also numerous even smaller and more regional parties, plus many independent councillors. So why is so much time spent on talking about whether Labour is failing or indeed storming ahead?

In the mayoral elections and those for police commissioners voters could express a second preference. The regional elections also included a degree of proportionality. Yet the media story (and indeed the debate within Labour) ignored much of this.

I was a Labour Party member in the 1990s but left in 2000 over Education policy. I still feel an affinity for Labour and am very pleased that Sadiq Khan is now London Mayor. I was very upset that Labour didn't win the 2015 general election, not because I felt the party had the right policies, but because it was much less unpleasant than the Tories. I find the media attacks on Labour upsetting even though I'm not a member and would choose to vote Green.

Since Corbyn's election as leader the party seems to reflect a lot more of my values, but the infighting is frustrating. We're told that a party can only win power by being united (by the same media that seems wedded to the two party system) and that aiming for the centre ground is the only way. Even when the centre ground keeps drifting rightwards. I'd been very concerned that all debate had become shades of right wing ideology. Talking about public ownership was almost unthinkable. Any redistribution was stone age thinking. The very idea that we might build council houses was insane. Corbyn seemed to bring these ideas back at a time when I think they're desperately needed. Yet the media, and much of the parliamentary Labour party disagrees.

There seems to be a disconnect between the majority of the Labour party membership and its MPs. The membership wants traditional Labour policies that were ditched with Blair. The MPs want to win elections and keep their jobs. They would argue that you can't do anything if you don't have power, so you need to do whatever's necessary to gain power. But if you have to ditch everything you want to achieve in order to get into power what's the point? If you can't make the changes to protect what's dear to you, why bother? Does the choice really have to be Tory nastiness or much the same thing, only delivered by "nicer" people?

The infighting, and the media obsession with reporting it, obscures any realistic chance of discussing the real need to tackle inequality. We're not talking about protecting public services or looking after vulnerable members of society. Basically we let the Tories do what they want while concentrating on an irrelevant soap opera instead of dealing with policies.

I know that there are Labour members who are very concerned about Corbyn who feel that their voices are ignored within the party. I very much like what Corbyn says, but I worry that these members might have a point. Is there still unacceptable centralised control in the party that should have been eradicated when Blair and Brown left? If there's no room for dissent and discussion then things haven't moved on.

My biggest concern about Labour is that as a party I'm not sure it knows what it stands for any more. Is it for sick and disabled people? Or people in jobs who face tough pay and conditions? Is it for public services? Does it support business? Does it stand for environmental protection? Or is it in hock to big business and corporations? I'd like to believe that where the Conservatives are the party of self interest, Labour is for promoting a society that cares for its members. I don't know though. I see plenty of Labour MPs (and probably others in positions of power) who seem to be in it as career politicians and not to make the difference that their ideology demands. In short I see little conviction from most of the PLP.

Meanwhile, we have other opposition parties that slowly increase their standings. Yet they have little influence in government. The media treats them like outsiders and cranks to stifle their voices. The main voting system locks them out. And while the focus is on reporting divisions within Labour rather than on policy, there's little debate on issues in the media at all.

It feels to me like we have a ruling class, made up of business leaders who remain shady and behind the scenes, their lackeys in the media and in parliament alongside a government who believe that they were born to rule. It's not a democracy. It's a parody of democracy. Meanwhile, we have to accept the will of our overlords. Isn't it time this changed? Isn't it time for some honest reporting? Shouldn't Labour MPs focus on criticising the government rather than their own party? Do they even care about the NHS, BBC, Education, and other public services? It seems not. They fight while the people suffer. They fiddle while Rome burns.

Most councils are strapped for cash thanks to central government policy. They have little room for manoeuvre regardless of what party is in control. The elections are only really reported as a glorified opinion poll on the national parties. The real local issues that they deal with are of little interest to the press. The results of this poll are spun anyway so they make little sense to anyone outside the political bubble. For everyone else its business as usual.

So, in conclusion, Labour eh?