Let’s talk about ME

Today is ME awareness day. Or this week is ME awareness week. Or possibly both, I’m slightly confused. Confusion (cognitive difficulties) being one of the problems that affect people with ME.

ME is an invisible disease. Often inaccurately called Chronic Fatigue Syndrome, (CFS) especially in the USA, it is a lot more than just chronic fatigue. ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. The symptoms are many and harsh. Crippling fatigue, headaches, dizziness, loss of balance, nausea, irritable bowel syndrome, muscle pain, joint pain, cognitive problems, and all sorts of other unpleasant things. Any activity results in a massively disproportionate payback. Walking to the shops can cause leg muscles to lock up, go solid and produce agonising pain. Standing in a line is difficult because of pain and dizziness. I’ve written more about this in my blog post What is ME? and I also described how I struggle with waking up in A morning with ME.

ME varies a lot too. I have been so ill as to be housebound or bedbound through much of the last eleven years, but I have also been well enough to work for a reasonable portion of that time. Of course “well enough” is relative, as while I might have looked fine at work (and sometimes I didn’t, to the consternation of my colleagues) I often collapsed in bed as soon as I made it home and was able to do nothing until going out to work the next day. Today I am going to go out for a meeting which is the other end of an hour long motorbike ride. Two months ago I didn’t have a hope of even getting on the bike, but at the moment I can as long as I pace myself, and even then it will hurt tomorrow.

People with ME look well because unless you visit them at home, you only ever see them on a good day, when they have mustered the strength to venture out. That is why the illness is invisible. Spend any length of time with an ME sufferer and you will notice signs of exhaustion creeping in. Visible wilting, muddling of words as brain fog takes over.

Earlier today I was sent this video made by @daisydinosaur_, I think it is a good summary of the problems that we face.  Continue reading “Let’s talk about ME”

The Hardest Hit – Videos and links

Today several thousand people rallied in London and marched (or wheeled) on parliament to protest against the way the government is attacking the sick and disabled and ruthlessly cutting their income. The Hardest Hit was organised by charities and campaigners working together to mobilise thousands of disabled people to tell the government that this is not acceptable.

[This post contains several videos which will not show up on a Kindle]

Continue reading “The Hardest Hit – Videos and links”

Work makes you free

"arbeit macht frei" - Work makes you free


Something is wrong with people in this country. There seems to be a distinct lack of understanding of the realities of being sick. You and Yours on Radio 4 today discussed “The hardest hit” march which will happen tomorrow.  The opinion of most of the callers seemed to be that there are too many disabled people, that disabled people shouldn’t ever spend money on alcohol or going to the pub, or on driving, but should stay in their homes waiting for death.

Never mind that sick people have worked and paid tax and national insurance. Never mind that with help, they might work again. Opinion amongst You and Yours callers seems to have followed the rhetoric of the government and the tabloids and turned against the sick and disabled.

On of the callers quoted that fact that 36% of applicants for ESA drop out before their medical assessment and asked what that tells us. I know what it tells me. It tells me that the process of applying for benefits is obscenely difficult and stressful for genuinely disabled people. That a 20 page ESA50 form demanding that you write out your symptoms and problems over and over again detailing how it affects you is nearly impossible to face. That the likelihood of being judged fit for work by ATOS and their computer system despite obviously not being so is extremely high and puts people off even trying. That the appeals process is long, tedious, draining, and can make an illness many times more difficult to deal with, even though so many people eventually win on appeal. And don’t forget that some illnesses get better and circumstances change!

The attitude of government of all varieties of party is highly damaging. The last government introduced Employment Support Allowance to replace Incapacity Benefit. Where IB only varied based on length of illness, ESA has two groups, the support Group, and the work related activity group. People on the work related activity group are expected to find work within their limits, and eventually to move to Job Seekers Allowance if they do not. Claimants must undergo a Work Capability Assesment which will decide which group they go in, or declare them fit for work and move them to Job Seekers Allowance. The WCA test is administered by private company ATOS and is largely computer based. Staff at ATOS are given a short time to ask the benefit claimant questions and click keywords on the computer depending on their answer. The claimant is asked to make a number of physical movements, and only their completion or failure is recorded, not the difficulty in performing the task or the effects afterwards. As a result many people are declared fit for work when they are clearly not. A high percentage of those people go on to appeal and overturn that decision.

For new ESA claims from October 2008 to November 2009, the breakdown is:

* Support Group – 6%
* Work Related Activity Group – 14%
* Fit for Work – 39%
* Claim closed before assessment complete – 37%
* Assessment still in progress – 4%

(Taken from http://www.abcofesa.co.uk/board/viewtopic.php?f=2&t=75)

Of course many people won’t appeal, but 40% do, and of those, 70% are found not fit to work after all. Unfortunately, it’s not unheard of for people to die while waiting.

The problem I have with Employment Support Allowance is that it changes the whole meaning of the benefit from “We will look after you” to “Go and get a job.” To the people claiming this, it is a huge challenge. People dealing with overwhelming illness, disability or mental health problems may well want to work eventually, but first they need to get away from these pressures and recover. Even under incapacity benefit there was the notion of “permitted work” where people were able to look for work that might ease them back in to the workforce or simply be therapeutic for them. This was sensible. Starting out with the idea that a sick person should simply find an easier job is not.

It gets worse though; in my doctor’s waiting room I saw this poster.

"Fit Note" poster seen in my doctor's waiting room.

The gist is that the government has changed the name of a sick note to a “fit note” because people shouldn’t ever be signed off work to recover, they should simply make accommodations for their illness and carry on. Or get an easier job. I think everyone realises that in reality sometimes people simply need rest to recover before they start work again.

Many people receiving benefits have worked and paid tax in the past, and with the right support may recover enough to find work again, but this vilifying of them by the government and the tabloids will not achieve that. When government ministers quote fictional and misleading figures about benefit claimants, it is clear that they do not aim to help those people.

Just remember, before the Nazi’s started on the Jews, they went after the disabled people, who were the first victims of Zyklon B gas. The motto over the gates of Nazi concentration camps was “Arbeit Macht Frei” or “Work makes you free.” Our current society seems to see people as human only if they fit a certain ideal in the way that they contribute to society. The sick and the disabled do contribute to society, but not necessarily through paid employment. To the government, sick people do not contribute and are therefore less human. How far does this go? Society teeters on the edge between treating people as human beings each worth something or simply writing off those that are not useful to the rich and powerful. How far is our current society willing to go in writing off the sick and disabled?


The fragility of social networks

What would happen if we suddenly lost access to Twitter? This could happen for any number of reasons, either with activists accounts being shut down, or with Twitter itself going offline or being blocked by government.

A friend of mine is worried that if she lost her Twitter account then she would lose contact with the few thousand people that follow her and she has enquired about backing up the names of those followers. There are tools that are able to download and save the names of contacts from Twitter but there is a problem; if the only identifier that you have for someone is their Twitter name, that may not be enough to find them in a post-twitter world. They could easily have used a different name everywhere else even if you knew what service they had moved to.

So how would the anti-cuts movement cope with the loss of Twitter? I suspect that while many people could still stay in touch, whole networks would become fragmented and information would not flow nearly as quickly. Many people that do not use Facebook and perhaps do not use the relevant web pages would be unable to get information from their usual contacts through twitter. They may well eventually find out what they need to know, but it would take much longer.

I do not think that there has been a problem so far with Twitter accounts; I am only aware of spammers being evicted from Twitter, although inevitably there will be some other examples. I think that this will change and it is quite likely to follow the example set by Facebook.

Facebook is not your friend. Facebook is a privately owned business which encourages you to post updates and share information so that it can profit from you. As a private business, Facebook has no obligation to honour the principles of free speech or to provide a service. Facebook can remove pages for any reason it likes. Sometimes it removes pages because they contain discussion of illegal actions or if enough people report the page for containing spam or offensive content. Pages have been removed in the past because of fake copyright claims. The default action in this situation is to remove pages now and ask questions later. Pages could also be removed purely because staff at Facebook don’t like them and being a private company, they don’t have to have a reason. Last week Facebook removed more than fifty anti-cuts and protest related pages without warning. The removal of these pages meant that these groups of people were suddenly fractured and the lists of members and interested people were lost. This is not the first time that protest-related pages have been removed and previous removals have caused massive inconvenience to both organisers and followers. A partial list of affected pages is available here.  http://anticutsspace.wordpress.com/2011/04/29/political-facebook-groups-deleted-on-royal-wedding-day/

Clearly, then, we cannot trust Facebook when organising events, especially if the event might make them nervous or if they fear legal action for facilitating it. I think the same applies or will soon apply to Twitter, and to services such as Livejournal, WordPress, Blogger and others. Even websites are not safe. Websites are hosted by a provider and that provider can be subjected to pressure from lawyers or law enforcement agencies, and when that happens they usually cave in to pressure and pull the website. The safest option is likely to be a privately owned server in a small datacentre but not many can afford that.

Ultimately, my advice is do not trust Facebook, Twitter, or any other social network or service that serves as a point of contact. If there is a person that you wish to stay in touch with even after losing access to these networks, I suggest making sure that you have at least two different methods of contacting them apart from social media. Email and phone number are probably best. Ideally we should organise a phone tree or an email tree as a backup within our protest movements, or perhaps a combination of both.

Further reading

Facebook shoots first, ignores questions later; account lock-out attack works

Stop the facebookpurge!

Political Facebook Groups Deleted On Royal Wedding Day


I am weird

I am weird.

Why is that, you ask? Well I’m weird because I care about politics. Oh, politics is boring, you say. Old men shouting at each other like children while people in wigs scream “order” at them.

Not that politics. I’m talking about the politics that determines if we have food and shelter and medical care. The politics that creates or destroys jobs. The politics that dictates whether we can travel anywhere, and how much it costs to do so.  The politics that dictates what can built where we live, and the politics that stamps out anything new because it is scared of change. The politics that is supposed to guarantee the concept of innocent until proven guilty. The politics that wants to hide away dissent because it looks unseemly at the royal wedding. The politics that it afraid of protest and wants to keep it out of the way and catalogue every person there so that they can be labelled a domestic extremist and kept away from anything important.

I care about these things. Do you?

Perhaps you have a different view than I have. Perhaps you think that opposing change is good, that cutting services and privatising healthcare is right. Perhaps you think that the videos showing protesters being snatched by unidentified thugs are not showing the whole story, and that the police must have good reason. Perhaps you believe that the sick must be forced back to work if there is anything at all that they could do, even if they will be fired for being unreliable or it will simply consume their whole life trying to deal with the inevitable toll on their health and sanity. If that is your view, I urge you to look at the people. Look at the impact that your politics has on individuals and ask yourself if that is what you really want to see happening.

But most people don’t even care about these things. Oh, they will moan when something does not go their way, but they won’t actually take the time to understand the cause. Many won’t even go and express their opinion by voting. They will moan about tax but then later demand benefits without understanding the link between the two.

I’m weird because I would like people to live the ideal of “from each according to his ability, to each according to his needs.” In the past I have been able. Right now I am needy. In the future I will be able again, and I will gladly support others that have need. I want to live in a society that understands this idea and does not resent it.

So I will continue to care about politics, even though caring is stressful. I could take the soma of reality TV and cheap alcohol and try not to think about it, but that isn’t me. I care about politics and I will fight to make things better, one step at a time. I am weird because I care. Will you choose to be weird too?

Bias and negativity in writing

Hated by the Daily MailIt should be quite obvious to all that read my blog that I am a left-wing liberal with socialist tendencies, a deep mistrust of authority and an intense dislike for right-wing views. I make no secret of this; I mention it in my “About” page and I state my views in my articles quite often. My views obviously shape my writing and introduce a bias into what I report. When I comment on actions of the police or on Conservative party policies I am usually negative about them because I disagree with them – this is a natural consequence of writing in a blog, or indeed of my writing at all. I choose what to write about based on what I think is important or on what inspires me, and negative things usually seem more important to me than positive ones. The same thing is obvious in social networks like Facebook and Twitter. Negative statements or reporting of news items seen as negative will always be shared, liked or retweeted more than positive ones. Statements with swearing doubly so.

But is this right? After all, I really hate the Daily Mail for its bias. Nearly every headline that I see in it is something negative about things that I like or seems to me to have missed the point. Daily Mail stories show a clear bias in the opposite direction to that which I would like. They promote views that clash with mine, particularly when written by Melanie Philips, Richard Littlejohn or Quentin Letts. They often miss out facts that would detract from the impact of their stories. Further to that, they pick on people who I talk to and like, and they deliberately twist facts or even make them up to get a good story.

So what is the difference between what I write and what is written in the Daily Mail? I’ve thought about this quite a lot. Is it the format? Is there something inherently different about a blog and a tabloid in paper format? Probably not, since the Mail publish all their stories on their website, currently the second most viewed news website in the English speaking world. Perhaps it is in the size of the readership? I have perhaps two thousand visitors per month, while the Mail’s website has nearly forty million. But surely I have a responsibility to those two thousand people that visit my blog? Is it the expectations of the audience? After all, much of the audience of the Mail are expecting to read news as well as comment, while my audience are expecting comment alone. But what about when people read a news story as part of my comment? The difference narrows, since in both cases the news is presented in a cloud of carefully selected words to shape the bias of the story.

While I have had a blog for a long time and have commented on politics before, I only really started writing in depth less then a year ago. I am still being shaped as a writer. I started out with very intense comment with no effort at all to present a neutral view. More recently I have sometimes tried to make an effort to introduce a little less bias into my writing. That is for two reasons really, firstly because I would really like to inform those with a different point of view to me, and I know that strong visible bias does not help that, and secondly because I don’t want to be like the Daily Mail. Now I hope that I have not sunk to their level of personal attacks and of writing about irrelevant details of a persons life purely to shape a story, but I know that I do direct my anger and I do swear about those that anger me. There is a very fine line, and I would like to stay on the right side of it. It’s a difficult challenge. Writing about the arrests leading up to the royal wedding yesterday, I was conscious that I was angry, and that anger and bias was showing up in my writing and even in the comments I made to introduce each video. My choice of description could shape the whole article and I really wanted to write something that would make people on all sides think, not just people that already agree with me.

So in the end, what is the difference between my blog and a tabloid paper? I think of all the things that I mentioned above, the expectations of the audience has to be the main distinguishing factor. Additionally, I think the experience of the writer has to be taken into account. As I develop my writing skills I hope to be less biased and more factual. I want to appeal to a broader audience and to make people think and I can’t do that if I annoy them. At the same time, I don’t want to lose the attributes of my writing that make people actually want to read it. I’m probably going to retain a negative viewpoint overall, purely because those are the stories that attract my attention. So I’m going to be making an effort both to lose some bias and to keep my writing style, and maybe throw in something positive from time to time. I may fail in one of those things – It’s political correctness gone mad.

The suppression of dissent

Yes, I know I am writing yet more about the police and how much they have done wrong. It’s become something of a theme with me recently, but please, at least look through this article. In the run up to the royal wedding the police made a number of arrests for various different stated reasons. Many of these people were held until the wedding was over and then released without charge.

1) On the morning of the day before the wedding police raided five squats in and around London. They claimed that one of the raids was with a warrant to search for stolen goods. The claimed reasons for the others is not known. These raids were carried out by the Territorial Support Group, (TSG) – known as the riot police to you and me – and not by the usual police. The police claim that these raids were nothing to do with the royal wedding, however the simultaneous raids on five difference groups the day before the wedding is not what you would expect if that were the case. Many people were arrested, and only released after the royal wedding. Some of the squatters were environmental activists and / or anti-cuts, but there were no plans to disrupt the royal wedding. More information at Indymedia.

2) Police arrested a street theatre group who were planning to stage a mock beheading of Prince Andrew in London to mark the royal wedding. They were arrested on the 28th of April as they were about to drive their props in to central London. Their props were seized by the police. Equipment belonging to a Channel 4 film crew was also seized. You can read more on this at the Guardian.

[This post has several embedded videos which will not show up if you are reading on the Kindle]

3) Charlie Vietch from political activist group the Love Police was arrested on allegations of “conspiracy to cause public nuisance in relation to the royal wedding” and on suspicion of aggravated trespass at Fortnum and Mason during the 26th of March protests. He was held for 24 hours, 8 of those without anyone being told his location, and denied a phone call, before being released without charge after the wedding was over. As I understand it, he had no intention of disrupting the wedding.

4) A group of protesters, some in fancy dress, were standing in the park singing “We all live in a fascist regime.” Two or three heavy-built men in hoodies suddenly snatched away one of the protesters without warning and with only one shout of “Police.” People attempting to intervene were threatened and pushed by one of the men before any police identification was shown.

5) A crying teenager was arrested by the police because he was carrying a pen, which they said meant he had the potential to cause criminal damage.

6) A group of people dressed as zombies and intending to have a fun day out in London were arrested for potential breach of the peace and again released without charge later that day.

7) A man who was carrying a sign that read “Democracy not monarchy” was arrested on leaving his train in London. He wasn’t even planning to attend the royal wedding, but a “Not the royal wedding” party elsewhere in London. He was detained until after the wedding and released without charge.

In addition to all of this, many activists that have come into contact with the police in weeks leading up to the royal wedding were banned from City of London until after the wedding. These are not people that have been found guilty of any crime at this point in time.

There has been a variety of different charges thrown around by police in these various arrests. While there has been a mention of searching for stolen goods, most arrests have been for “potential breach of the peace” or for “conspiracy to commit a public nuisance.” It strikes me that these are a catch-all, that can be used whenever a policeman wants to use them. They certainly allow for a person to be arrested for merely thinking about something, and that is not right. We appear to have two problems, namely that people are being arrested for actions that are not illegal using these catch-all terms, and that people are being arrested merely for intending to do these things, and in quite a lot of these examples, the intent has been a figment of the police’s imagination.

I know that there is still no comparison with some countries where political opposition disappears without trace and where protesters are shot, but this is a real threat to our rights and freedoms and it is here and now in our own country. When the police can and do hold people for hours or days because they have been told to prevent some opinions from showing, we have a huge problem. In the video above showing Charlie Veitch’s arrest, the arresting officer asserts again and again that there must be some reason, some evidence in order for the arrest warrant to be issued and for him to be sent to perform the arrest. He is just following orders, in the blind trust that his superior officers have made the right decision based on evidence and due process. But what happens when they have made a decision based on political pressure? Is that pressure even explicit, or was it simply something that senior police felt that they must do? Is this a “Make it happen” scenario where the people at the top don’t bother themselves about how it happens?

I have struggled to write my thoughts on all of this. Quite honestly, it was so depressing going through all of these stories that I can barely handle writing about it.  This is not China. This is not Iran. This is the UK. Where you can be arrested and held without charge, without a lawyer, without a phone call, simply for showing that you do not conform to the desired prototype or that you disagree. Where you can be snatched away by unidentified thugs. Many previous arrests and treatment of protesters by police can only be explained as political policing, and I can see no other explanation of the events mentioned here. I will be writing to my MP to demand an investigation into this and I hope that you will all do the same.

Here is a comment that a friend left on Facebook…

“While I wouldn’t say “there’s nothing wrong with that”, I was quite glad that the TV advert for UK tourism – sorry, the wedding – was beamed around the world without protesters or banners visible on-camera. A one day in 30 year event.”

…and a question: was it worth it? Really?