YES!! Knighthood!

I'm writing just a short post today, mostly in reference to my most recent post. I provided you the link for the petition against Dr Wessely's proposed knighthood, should you wish to sign it, and explained why I find myself a little reluctant to do so.

Someone came up with a beautiful alternative. Well, they didn't intend it to be an alternative actually, they suggested both signing that petition, and ...  doing this:

Recommend someone else for knighthood.

As I understand it, when someone is proposed for a knighthood, they are compared with others in the same field who have also been nominated. I could be completely wrong in that, so don't quote me on it, but I think that is what I have read somewhere.

My immediate reaction was to suggest the wonderful journalist, Sonia Poulton, for her hard work writing about M.E., describing it's difficulties so perfectly within the public eye. She's become patron of the Cheltenham "Fibro, ME/CFS Babes & Guys!" group you know! I would also personally include her awesome work raising awareness of how screwed up the benefits system is. You can read some of her work:
here

here

here

and here

BUT, I have a sneaky suspicion that because Sonia Poulton is a journalist, she would not be considered comparable to The Weasel. In fact, she's raising awareness of how treacherous M.E. is, when he is (supposedly) performing research (and downplaying how serious it is). Plus, it is not just M.E. alone that he is being considered upon.

Someone else has suggested recommending Professor Hooper for knighthood instead. I felt a little embarrassed that I had never before heard of Hooper, so I did a little research. A few clicks later I had found that he has worked on M.E. (CFS) and Gulf War Syndrome amongst other conditions; so he is directly comparable to The Weasel. He is the Medical Advisor to the Grace Charity for M.E.; I would be very surprised if any M.E. organisation is associated with Wessely (unless it is one that he has created). Hooper has also stood in direct opposition to Wessely on his stance towards M.E./CFS, which of course will make him a very attractive alternative to many. I did also find, however, that there has been a review into him, and that there are also people who dislike him as strongly as I and many others dislike Dr Weasel. Personally, I don't feel that I have found out enough about him to recommend him for knighthood myself. But I would certainly say 'yes' he's a good alternative to ... you know who ... and that if you wish to recommend someone to be in direct opposition, then Professor Hooper is probably the right person for the job.

I, myself, think I will stick to recommending a certain journalist. I have a feeling she might turn down the post if she was offered it. That, however, would be as worth seeing, as seeing her receive it!

So, how do we go about recommending someone for a Knighthood? It's actually very simple.

Download the form from here.

There is a choice of format in which you can download the form. I would suggest PDF, as most computers have a PDF reader. You then print the form out, fill it in, and post it off to the address on the website. Couldn't be simpler, could it? Well yes, since the form is rather long and complicated. 

... and sitting on my desk still waiting to be filled in.

Social Services Stole my M.E. Child

Sonia Poulton is searching for a family.

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

If you know such a family, please contact me and I will pass on your details to her. Hopefully she will give me a better way of contacting her yourself in the near future, but for now, that's it.

Sonia, in case you are unfamiliar with her work is a UK journalist who has been working extremely hard to bring the suffering of people with M.E. to light. She totally gets it, which is very rare for anyone who doesn't have M.E., and she has the voice, and is in the position, to do something about it. An absolutely awesome lady. She's also been working hard on illuminating the problems with the benefits system. She doesn't have to do either of these things, but has chosen to. So, if you can help with her search, please do.

Her full post (on Facebook) was actually as follows:

I have a problem and I'm adhering to the school of thought that says if I share it then I should also halve the burden it is causing me, so here goes...

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

That precise requirement is what I desperately need in order to fulfil the demands of producers on a TV news report I am working on.

Some people are not happy that we need that type of extreme example - and I understand why - but in order for the public to 'get it' the media frequently has to SHOUT an issue. This is one of those times.

This report is designed to shriek so loudly that those watching it will have no alternative but to wake up. It will not portray ME as only worthy if it is extreme but it needs to shock people out of the stupour of believing it's not a serious illness. It is. It can, and has, killed. How much more serious does it need to be?

So far I have been unable to get the family we need. I have other families, with less troubles, but I need others.

It's not that these families don't exist - sadly they do - but they have been filled with so much fear and anxiety about having their child taken away that they are scared to speak up about it, even anonymously. Which is super sad, really, because it means that they are unable to help those who are enduring that misery right now.

So that's my very long way of explaining I have a problem and if anyone can help in any way, either by knowing a family of this description or re-posting this status in any relevant places, I would be grateful.

We need to be able to show the UK how people with ME are being treated and unless I can get the example required then I fear it will not happen. Thank you.

Give us a break!

I let out a slow tired sigh as I sat down to type this blog piece. There's another one! I ask myself why it is that there are journalists so ready to spread hate about M.E.. I don't understand it. One of the comments made me sit back and wonder though; M.E. is today's AIDS. Can that be true? I remember the hide-under-the-table attitude that went with AIDS. Is that how people feel about M.E.? I haven't noticed it being that bad.

This article is written by another delightful journalist, by the name of Damian Idiot Thompson. In it he makes a few claims, namely that the militant wing of people with M.E. are attacking Max Pemberton, that M.E. and eating disorders are related, and that a colleague of his diagnosed with M.E. obviously doesn't have M.E. because he is actually ill ... nice! Rather oddly though, most of the article just seems to be telling the world that social media enables like minded people to work together. I thought we knew that. Maybe he's a bit behind everyone else.

So, my take on his article, apart from thinking he's a first class moron who just wrote it to make a quick buck without actually doing any research, is that he hasn't even bothered to read Max Pemberton's article, which supposedly inspired his. He seems to be saying that he's defending Max because of this huge number of people who are attacking him, mentioning how Max's home security has been threatened. In fact, Max's article itself mentions his home security in reference to his previous article. Max also tells us that it was only about 200 people worldwide that were attacking him.

Personally, I've never ever read of any overlap between eating disorders and people who suffer from M.E.. BUT, everything overlaps everything doesn't it. There's a huge overlap in the number of people who keep pet rats, and also have M.E., but I'm not going to suggest that rats cause M.E.. There's an overlap in people who drive cars and people who wear bobbly hats, but that doesn't mean the two are related either.

He starts off by saying:

"The article you’re about to read will almost certainly be referred to the Press Complaints Commission. I’ll explain why later."

I'll be surprised if it does to be honest, as it's such a naff article. It kind of sounds like he wants it to be though. Just to show how badly the article is written, he doesn't actually go on to "explain why later" in the article either.

So why am I writing about it? Because I am overwhelmed by the response it has received. For once I have actually been able to log in to the site and post comments. My first comment was in reply to his claiming that journalists won't approach the subject anymore; I pointed out that Sonia Poulton does, and linked to her fantastic article. My comment was removed. Presumably linking to other journalists is a no no.

There are a few ignorant trolls who are deliberately stirring up trouble, but I'd like to share some of the comments with you, with permission of course (I am still awaiting permission for some of them).

'It's safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade'

Carly Maryhew said:

I'd like to clarify a couple things.  There's a common question regarding ME patients commenting on articles like this one: "If you're so fatigued, why are you posting so much?" Most of us are not particularly fatigued, though we have ME, of which fatigue might be a symptom.

There are two debilitating symptoms which might be interpreted as fatigue.  The first is Post-Exertional Malaise, which basically means getting very sick for days or weeks after a normal or even very minor amount of exertion.  Typing takes very little muscular effort, and any but the most severe cases can handle some of this.

The other symptom is Orthostatic Intolerance.  This means we can't handle being upright very well, as our blood pressure will eventually do very funny things that can cause fainting or general inability to think and function.  This is easy to diagnose and usually treatable, but that doesn't happen in the UK (or most other places) due to general ignorance.  Orthostatic Intolerance  can keep people with only mild or moderate PEM from working at jobs where little exertion is required, such as doing data entry in an office.

Orthostatic Intolerance keeps me housebound, and on two horrible occasions, bedbound.  It does not prevent me from typing, and in fact I'm more clear headed when bedbound because I can't even try to sit up for hours at a time.  Lying down does make typing uncomfortable, however, so I don't do much of it when bedbound.  And as long as I don't go crazy and try to play computer games or write a novel, and take breaks, I can type a decent amount before my muscles have had enough.

My hope is to get my Orthostatic Intolerance treated so I can be somewhat functional again.  Then maybe I can think clearly most of the day, not need to lay down every couple hours, and even slowly shuffle around the grocery store again.

Another point: this disease ceases to be invisible if we push ourselves hard enough.  But we work VERY hard to avoid getting to that point, because it invariably results in Post-Exertional Malaise or even long-term worsening of our ME symptoms.  When I've been upright and/or walking too much, some of my leg muscles cease to function - I can still walk, but it becomes extremely jerky and awkward.  If I keep pushing, more muscles wear out temporarily, and my leg or legs cease to function as needed.  It's an extremely disturbing sensation to be trying to lift your leg and for it not respond at all.

Thank you Sonia

A friend of mine, the lovely Sarah-Louise Jordan, has written this beautiful poem in thanks, to Sonia Poulton, a journalist at the Daily Mail who has written another fantastic article on M.E.

Nobody heard our voices in the shadows
Or saw the flare we sent into the skies,
They didn't see the ground beneath us vanish,
They turned the truth we told them into lies

We lost the strength to dance, except in spirit,
We lost the strength to sing, except in thought,
We had to learn to make hope out of nothing,
In spite of all the monsters that we fought

But on the lonely road we met each other,
Our love and friendship kept our dreams alight,
We found a way to laugh and in the darkness
The stars of our compassion filled the night

And then you joined us in our epic battle,
You heard our voices and you saw that flare,
Because of you the sun will bring the morning,
Our day will come at last, because you care

I can relate easily to the poem. When you have M.E., you lose everything, but because you look just like everybody else, very few people actually realise it. Your energy is sapped as if by some invisible force. You may become sensitive to sound; you can't listen to music or sing. No one knows what causes M.E.. No one has a treatment for us. It feels as if we're locked away in a cupboard none of the medical community want to mention. So when someone comes along and opens the door to that cupboard it feels amazing.

Sonia actually says in her article:

"The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers. [..] Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media."

She gets it. She totally gets it. She describes the exhaustion and pain, the horrible treatments we're expected to accept despite them making us three times worse. She understands how we feel we've been forced to live in denial. She knows that we can die from M.E., and that people with M.E. are aware of this despite our doctors seeming not to be. And she recognises the frustrations of the misinformation that seems to be everywhere.

I don't know what triggered Sonia's interest in M.E., but she really does understand. Please have a read:

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?

Ed to meet Sonia!!!

Please sign the petition:

Ed Miliband to Meet Sonia Poulton Re the WCA

The description of the petition is thus:

The WCA, administered by Atos Healthcare, continues to be exposed as a danger to the sick and disabled of this country, with accounts of its destructive effects now including suicides.Sonia Poulton has requested that Ed Miliband meet with her so she can hand over evidence that she has collected, including her original letter to him signed by over 6,000 people, and to briefly discuss the matter. Mr Miliband appears to be reluctant to do so. This campaign is to urge Mr Miliband to accept Ms Poulton's request, speaking as she does on behalf of the masses of powerless sick and disabled who are being crushed by this process.

Sonia Poulton wrote a very strong letter to Ed Miliband regarding the problems with the Work Capability Assessment, hoping that he would be able to step in on behalf of thousands of 'little people' who are suffering, even dying, countrywide. The letter was an open letter, enabling people to sign it online, adding their own stories or thoughts if they so wished. Sonia wished to hand the letter personally to Ed, ensuring that he saw the devastating comments people had added. However, he was on holiday when the letter was closed, and since the letter was online his staff had got wind of it. The result is that Sonia received a reply to the letter without actually handing it over. The reply suggested that she would be better off speaking to one of his ministers. This is an unsatisfactory result. I do not mean any disrespect to that minister, but fobbing off thousands of citizens on to another minitser because he ... what .. 'can't be bothered' isn't satisfactory. I am hoping that Ed Miliband can give Sonia, the letter, the thousands of people who signed it the respect that they .. we .. deserve. Below you will find a copy of the letter, so you know what it is you are signing about. The petition itself is for Ed Miliband to actually meet with Sonia. She is the one person who seems to have a unifying voice for the sick and disabled, laced with an understanding I have not seen from any other healthy, able bodied person.

Dear Mr. Miliband,

I am a UK-based journalist and broadcaster. Here is a link to my website. www.soniapoulton.co.uk.

On my site you will find all the media outlets that I contribute to across print, TV, radio and internet, nationally and internationally.

I am prompted to write to you having just watched these two programmes on the subject of ‘fit to work’ testing for sick and disabled people: Channel 4′s Dispatches (‘Britain On The Sick’) and BBC2′s Panorama (‘Disabled or Faking it’).

This year, as a writer, I have been made painfully aware of how distressing, unreliable and costly – both physically and emotionally – the Work Capability Assessment is for those undertaking it.

The financial cost to the country is another concern altogether.

I am aware that Employment minister Chris Grayling has made much capital from blaming Labour for the introduction of this system, administered by ATOS. Equally, Mr. Grayling has made it clear that he views the Coalition’s implementation of the process as preferable, and less harsh, than that carried out under the Labour government.

WCA, clearly, is beset with problems. The ATOS assessor, captured undercover in C4′s programme, referred to it as ‘Toxic’. It was made clear that it was designed to reduce benefit recipients. Chris Grayling continues to deny there are targets. I am less inclined to believe him.

The test, at best, is unquestionably inadequate and not fit-for-purpose. Even the Government’s own adviser, before he resigned, described it as ‘patchy’. At worst, it is downright disadvantageous to those who are subject to it.

For many people the horror of the ATOS test has been the worst kept secret for years. Sadly, others have been less fortunate and are no longer here to register their misery. There currently exists a known demographic of people who have died after being found ‘fit to work’. Are you aware of this?

This year doctors at the British Medical Association have opposed WCA. Those who endure it have opposed it. Even the occasional newspaper and TV programme dares to oppose it. As a Social Commentator, I certainly have.

Why, then, has Labour – under your leadership – not opposed it? Should I assume that you support it?

I am disturbed by what I view as a dangerous trend in our country. There is a clear demonisation of sick and disabled people, routinely labelled as ‘scroungers’ by the media, and driven by frequently skewed statistics issued by the DWP.

Meanwhile, the incidences of attacks on sick and disabled has risen. Disabled people are more in fear for their safety than at any other time in recent history. I believe that there is a direct correlation between the resentment whipped up about ‘spongers’ and the physical assaults taking place.

Surely this is not acceptable to you. It certainly isn’t acceptable to me.The names listed below this letter are from people who support the core message contained within it. Like me these are concerned citizens. Some are directly affected by issues of sickness and disability, others are not.

For my part, I am healthy, able-bodied and work full-time but I believe it is my duty to support those who need help. I believe that is a duty of us all. Including the Labour party.

Sickness and disability can happen at any time and to any one of us. I would like to think that others would also support me in my hour of need.

I believe what we need in this country is more compassion, not less. The WCA is unacceptable for a progressive country and it is a clear failure. The money spent on the appeals process confirms that, quite aside from the human misery it costs.

I have just heard that Tom Greatrex, MP, has secured a Westminster Hall debate on September 4 with regard ATOS and WCA. I ask you, Mr. Miliband, can we count on you to take a long overdue stance in support of our sick and disabled?

I do hope so. I look forward to your response.

Best wishes,

Sonia Poulton

Letter to the potential PM

Sonia's most recent letter to Edward Miliband. It speaks for itself.

Rt. Hon. Ed Miliband MP
September 24, 2012

Dear Ed,

As the Labour Party conference approaches, I ask that you consider the following.

I have now sent to you three letters via e-mail. I have appealed on behalf of thousands of sick and disabled people – and their loved ones – in our country.

You have responded to one letter but not the following two. This is troubling and, not least, because the last e-mail contained information that alarmed me. It was a reader's comment sent care of the Daily Mail website.

To the many who have now seen this comment, there was no doubt that here was a clear intention to commit suicide. And for the author, a mother, to kill her autistic child at the same time. Her desperation shrieked from the page. Many were left devastated by reading it - and, primarily, because we know this is far from an isolated case.

I understand that you are extremely busy, as indeed am I, but how does that not warrant a response from a future potential PM? I can't fathom that, I'm sorry.

I would more likely understand you not responding if I contacted you purely in my role as a journalist. But I am not. I am also appealing to you on behalf of over 6,000 people who counter-signed the original letter – as well as the millions in need of your help around our country.

I appreciate that you have suggested a meet with Minister for Disabled People, Anne McGuire – and I have contacted Anne's office about this and will do so again having not heard anything back – but how much can she really do if the Leader of the Labour Party is not fully in support of our most vulnerable citizens?

This is not an attack on you, Ed. This is an appeal for you to do what needs to be done and that is oppose, and very strongly, the Coalition's treatment of those who require our support.

The message is clear. The Working Capability Assessment (WCA) - administered by ATOS and sanctioned by the DWP - is a dangerous and costly exercise. I have a great deal of source material to back up these assertions and I will gladly share it all with you.

As it stands, I am in no doubt that the situation is now untenable regarding the well-being of sick and disabled people – and their carers – and must be addressed and rectified without further delay.

It's that serious, Ed. Some people don't have the luxury of time or money to ponder it. I can't say it more plainly than that.

Best wishes

Sonia Poulton
JOURNALIST/ BROADCASTER

The truth about Welfare Reform

I really haven't got the brain to actually write much about this article. Sonia, as usual, has written beautifully. Perfectly. She's pretty much summarised everything I've been trying to get at in my posts regarding welfare reform. Please read it. Please share the link for this article with your friends, family, colleagues, etc, and anyone who is touched by it, please sign / ask them to sign the document linked in my previous post. It's a desperate situation, and I'm desperate for everyone to know ... and those who need to, to change their attitudes. So, here's Sonia's article ...

Suicide training in Job Centres? Cancer patients scrubbing floors? Welcome to Cameron’s Brave New World


So, the Welfare Reform Bill - the part that refers to sick and disabled people - limped bruised and bloodied over the finishing line in Parliament last week. The various acts of treachery and betrayal it contained making its final journey into law once it has been granted the Queen's royal assent.

It was inevitable, really, and disability campaigners who, for the past two years, have fought feverishly, and quite literally at times from their sickbeds, to oppose it, resigned themselves to the fact that nothing short of a Biblical-type miracle would reverse their fate.

However, it is only now that the full implications of what these reforms - or brutal acts of savagery as I prefer to call them - will actually mean to millions of seriously vulnerable people in our country. And it is an ugly realisation.

This is how I see it. In the life of most every politician there is one, or several, events that mark out their ‘D’Oh moment. This is not based on severity but on a feeling it should not have happened at all.
David and Samantha Cameron themselves claimed Disability Living Allowance for their child

Brave New World? David and Samantha Cameron themselves claimed Disability Living Allowance for their child

For examples: Nixon - Watergate. Kennedy - Marilyn. Major - Edwina Currie. Tony Blair - Iraq. You get my point?

Well here’s my ‘D’oh moment prediction for David Cameron. He will be remembered as the Prime Minister - without a mandate, remember - who attacked the sick and disabled of our country with a vehemence beyond human comprehension. And when you think that he had a disabled son who tragically passed two years ago, well, then, it beggars belief even more so.

So, to bring the story up to speed.

Margaret Thatcher and Tony Blair’s Governments set the blueprint of the welfare reforms that David Cameron has just forced through Parliament. And when I say forced I mean the type that requires extraordinary levels of subterfuge and manipulation to shoehorn into place.

He ignored panels and focus groups, charities and campaigners and he overturned the Lords' by invoking an archaic law of “financial privilege”, which allows the Commons the last say on money matters.

Such was his unstoppable zeal to push through reforms - contrary to all advice, personal and professional - that you had to wonder if it was a psychological issue driving him on.
Talk to any disabled or sick person right now and there is a word that crops up more than any other, a running thread central to what they are feeling. It is this: fear

Talk to any disabled or sick person right now and there is a word that crops up more than any other, a running thread central to what they are feeling. It is this: fear

Perhaps denied grief at the death of his disabled son. Bereavement affects us on an individual basis and there is no guarantee that it will manifest in logical ways.

So these cuts will now become law and, as a nation weeps, the details are sorrowful when applied to reality.

Here's an example. Any disabled or sick person who has been given more than six months to live - and is unable to financially support themselves - will be sent out to work. If they refuse, or back out of a scheme, then they will be subject to benefit sanctions.

This, it must be noted, is extraordinarily punishing towards disabled people when we consider how DWP boss, Chris Grayling, treats others involved in 'Workfare' type arrangements.

Consider, if you will, how he was forced to back-track last week following pressure from campaigners and businesses. After a summit designed to get more businesses on board the Workfare bus, he announced that he would remove the threat of benefit sanctions for unemployed young people on job seeker allowance who drop out of the scheme.

Wow. In what world can young, fit people be given protection that we deny our most vulnerable? That's more suited to an Aldous Huxley script than real life.

Next up in the reforms will be an increase in multiple testing of patients, including those with Alzheimer's and Multiple Sclerosis, to see if they are fit for work. They will be tested repeatedly. It will cost a great deal of money to administer and it will wear already sick people to a pulp.

And as for children who dare to be born disabled, well that assistance previously available to them has been wiped out in Cameron's Armageddon on the poor.

Sue Marsh, one of the co-authors of 'Responsible Reform - The Spartacus Report' - which launched a worthy counter-attack to the Coalition's WRB measures said: "We begged for £11 Million to protect profoundly disabled children into adulthood, but nuh-huh."

And yet we, as a nation, manage to find millions of pounds to pay Cameron's army of advisers and assessors including the allegedly fraudulent activities of back-to-work company A4E which was set up by the Coalition's 'families czar' Emma Harrison.

Could we consider this? If this is really a cost-cutting exercise to fill the billion pound deficit, when is the Coalition going to start from within? The DWP spend over 25 thousand pounds per month on travel, hotels and stationery - surely there is something that could be curbed there rather than taking 20% from disability which, according to their own figures, only has 0.5% of fraud.

I'm writing this and I'm struggling to believe it at the same time, which is quite a conflict.

With all this insistence of paid employment for the terminally ill (despite the fact that we have almost 3million unemployed) it is no wonder that job centres, up and down the land, have been issued with details on how to handle suicides in their establishments. Something, apparently, they are anticipating rather more of since the WRB was voted in.

I think the expression ‘you couldn’t make this up’ is appropriate here.

Perhaps the aim is to finish off the sick and disabled sooner rather than later. Well that way, at least, you get to save on the medical bills of our increasingly privatised National Health Service.

After all, what use are such people to our society?

There is a notion, false obviously, that disabled and sick people make no contribution and only ‘drain’ the system. What short-sightedness. Such a statement assumes that only paid work has social value.
Legacy: Will Cameron be remembered as the PM who attacked the sick and disabled of our country with a vehemence?

Legacy: Will Cameron be remembered as the PM who attacked the sick and disabled of our country with a vehemence?

What about other contributions including volunteer work - from charity shops to hospitals and schools? These roles are frequently staffed by disabled people, too.

Ironically, a number of disabled people will now be removed from such vital community roles and placed in a Workfare scheme - free labour to private businesses - so that they may mop floors, wash dishes or clean toilets. Ain't life grand?

Disabled people, like the majority of people, want to work but they also have to take account of how their illness or disability will affect their working life. Unlike the able-bodied and healthy, they do not know which turn their well-being will take when they wake in the morning. Whether they will be able to physically climb out of bed much less make it to the factory floor.

People on disability benefit are not living it up. If only. According to the group Family Action, some families survive on less than two pounds per day. Quite a contrast when you compare it to the Peers in the Lords who receive 300 a day just to show up and then get to enjoy smoked salmon in the tax-payer subsidised cafeteria (cost to the taxpayer is a mere 1.44million a year. bargain). Oh how the other half live.

So where will disabled and sick have to turn to now in their greatest hour of need? Well they can forget the Social Fund because that was viciously axed in these reforms, too.

For millions of people, a Social Fund loan - yes it was repayable, it wasn't a gift - was the difference between sleeping on a bed or a floor. The MP's who voted to banish this have no understanding of such destitution and poverty. Not while they are able to subsidise the purchase of their country mansions with their parliamentary expenses.
Defending himself: Ricky, seen here in a photo he posted onto his Twitter page, said he never meant to use the word 'mong' to mean Down Syndrome

There are those who openly mock the disabled: Ricky Gervais's 'mong' comment says more about him than anything else

People are already impoverished and it is certain to get worse. I read one online disability forum where a woman with breast cancer and liver disease didn't know where she was going to get the ten pound needed for travel to hospital for an appointment.

Unlike David and Samantha Cameron, who claimed Disability Living Allowance for their child - and absolutely did not need to - many disabled now must adjust to seriously reduced circumstances since Cameron attacked DLA in the reforms and will replace with the patently detrimental Personal Independence Payment (PIP).

The transfer from DLA to PIP will remove help from 25% of those in receipt of the benefit now, despite the fact that this is a benefit that helps some disabled people to stay in work.

And therein lies much of the problem with these reforms. They lack joined-up thinking. They don't appear to have been thought through to a satisfactory end.

Take for example the perception within the Coalition, the DWP and the care services that everyone has a spouse and family to fall back on but that is not the reality for many people.

As a consequence of these cuts, more disabled people will find themselves in bedsits, or hostels or on the streets. There is a significant proportion of people with mental health issues and learning difficulties who find themselves in this situation already and it is certain to increase.

Well then perhaps it's time to resurrect another part of our history - seeing as David Cameron is clearly following a Dickensian blueprint for our poor - the workhouse. Yes, that testament to our proud, class-conscious society.

Talk to any disabled or sick person right now and there is a word that crops up more than any other, a running thread central to what they are feeling. It is this: fear.

Fear of losing their homes when they no longer have DLA to top up their Housing Benefit shortfall where, thanks to the previous Conservative Government, private rents are uncapped and extortionate. Fear of losing their carer because there will be no allowance for them. Fear of being bed-ridden for the lack of anyone to lend support. Fear of losing ramps and assistance to get in and out of the house. Cold fear that this feeling of being unwanted and excluded from society is how it is going to be for the rest of their days.
With all this insistence of paid employment for the terminally ill it is no wonder that job centers, up and down the land, have been issued with details on how to handle suicides in their establishmentsv

With all this insistence of paid employment for the terminally ill it is no wonder that job centers, up and down the land, have been issued with details on how to handle suicides in their establishmentsv

In internet circles, where many disabled campaigners congregate, names are bandied around of those who have committed suicide through fear of going cold and hungry and feeling that they are increasingly a burden to society.

At the last count there were some 103 names linked to such suicides and I have actually heard people say that they would consider suicide as a way out of this constant state of anxiety and despair.

What alarms me is how this dispassion towards people with disabilities appears to be spreading from the Coalition down.

There are commentators who openly deride disabled people (Rod Liddle's ill-informed and hate-inciting rhetoric - a type of drunk-sick on paper - in a tabloid was one, but he's not alone). There are also comedians who mock disability. Ricky Gervais' 'mong' impersonation surely says more about him than it does about anyone else (although to be fair, Ricky has since claimed this to be naivety and that he was unaware that the term was still used to describe disability).

There is also, according to recent figures, a 40 per cent increase in disabled attacks in the past year alone. Hardly wonder when the general public are constantly being goaded with the idea that we are 'mugs for supporting scroungers'. Talk like that tends to breed resentment.

And then there's this. An occurrence that should serve to alarm us all.

The British Medical Journal published a paper from Oxford University don Francesca Minerva, a philosopher and medical ethicist, who argued that doctors should have the right to kill newborn babies including those born with disabilities because, according to Minerva, a young baby is not a real person and so killing it in the first days after birth is little different to aborting it in the womb.

But here's what gives me hope. Ever since last week's rubber stamping of the Welfare Reform Bill, disability campaigners have begun a serious fightback and are preparing, like an army, to overcome this wickedness that has been wrought on them. Information is being compiled and exchanged, despite ill-health and disability I have never witnessed such a bank of people determined to overcome the odds piled on them.

Let us not forget, and despite the mainstream media's best efforts to convince us otherwise, this is not about the neighbor with the apparent bad back who plays golf at weekends (who can also be genuinely disabled but even disabilities allow for better days when activity can increase), but about some of the most horrendous acts against truly vulnerable people.

This may not affect you. Perhaps your parents, or yourself even, have a sufficient financial cushion not to worry about that. What an enviable position to be in.

But what about those less fortunate?

I believe - and I’ve 47 years of a colourful life to base this judgement on - that the UK is comprised of essentially decent people. Citizens who care enough to see beyond their own selfish existence.

The people I know don’t want to be - and neither are they - the type of people who turn their backs when the going gets tough. They actually seek a more compassionate life on earth where we are prepared to support and contribute to each others lives.

In is unconscionable that these disability reforms have been allowed to happen. To be fair, we all knew it was a Conservative agenda, but a Liberal one as well? Goodness how Nick Clegg can ever recover from this I do not know. My imagination is not that good.

So the Welfare Reform Bill, after decades in the making, has finally come to pass. Oh, how proud are we as a nation? We did it. Gave those sick and crippled unfortunates a good old kicking. Let’s give ourselves a collective pat on the back for allowing this to proceed. Makes you proud to be British, doesn't it?

Call to Ed Milliband to support the sick and disabled

"Please support Sonia Poulton's call to Ed Milliband to support the sick and disabled.

Read her letter, and sign if you agree with her. She will deliver the letter to Ed Milliband personally."

Sign here

It's a live document, which means people are signing it at the same time, so please be careful not to type in the middle of someone elses writing (like I did to start with).

The letter Sonia wishes you to read, and sign your support for is below:

"Dear Mr. Miliband,

I am a UK-based journalist and broadcaster. Here is a link to my website. http://www.soniapoulton.co.uk. On my site you will find all the media outlets that I contribute to across print, TV, radio and internet, nationally and internationally.

I am prompted to write to you having just watched these two programmes on the subject of ‘fit to work’ testing for sick and disabled people: Channel 4′s Dispatches (‘Britain On The Sick’) and BBC2′s Panorama (‘Disabled or Faking it’).

This year, as a writer, I have been made painfully aware of how distressing, unreliable and costly – both physically and emotionally – the Work Capability Assessment is for those undertaking it. The financial cost to the country is another concern altogether.

I am aware that Employment minister Chris Grayling has made much capital from blaming Labour for the introduction of this system, administered by ATOS. Equally, Mr. Grayling has made it clear that he views the Coalition’s implementation of the process as preferable, and less harsh, than that carried out under the Labour government.

WCA, clearly, is beset with problems. The ATOS assessor, captured undercover in C4′s programme, referred to it as ‘Toxic’. It was made clear that it was designed to reduce benefit recipients. Chris Grayling continues to deny there are targets. I am less inclined to believe him.

The test, at best, is unquestionably inadequate and not fit-for-purpose. Even the Government’s own adviser, before he resigned, described it as ‘patchy’. At worst, it is downright disadvantageous to those who are subject to it.

For many people the horror of the ATOS test has been the worst kept secret for years. Sadly, others have been less fortunate and are no longer here to register their misery. There currently exists a known demographic of people who have died after being found ‘fit to work’. Are you aware of this?

This year doctors at the British Medical Association have opposed WCA. Those who endure it have opposed it. Even the occasional newspaper and TV programme dares to oppose it. As a Social Commentator, I certainly have.

Why, then, has Labour – under your leadership – not opposed it? Should I assume that you support it? I am disturbed by what I view as a dangerous trend in our country. There is a clear demonisation of sick and disabled people, routinely labelled as ‘scroungers’ by the media, and driven by frequently skewed statistics issued by the DWP.

Meanwhile, the incidences of attacks on sick and disabled has risen. Disabled people are more in fear for their safety than at any other time in recent history. I believe that there is a direct correlation between the resentment whipped up about ‘spongers’ and the physical assaults taking place. Surely this is not acceptable to you. It certainly isn’t acceptable to me.

The names listed below this letter are from people who support the core message contained within it. Like me these are concerned citizens. Some are directly affected by issues of sickness and disability, others are not.

For my part, I am healthy, able-bodied and work full-time but I believe it is my duty to support those who need help. I believe that is a duty of us all. Including the Labour party.

Sickness and disability can happen at any time and to any one of us. I would like to think that others would also support me in my hour of need.

I believe what we need in this country is more compassion, not less. The WCA is unacceptable for a progressive country and it is a clear failure. The money spent on the appeals process confirms that, quite aside from the human misery it costs.

I have just heard that Tom Greatrex, MP, has secured a Westminster Hall debate on September 4 with regard ATOS and WCA. I ask you, Mr. Miliband, can we count on you to take a long overdue stance in support of our sick and disabled, too?

I do hope so. I look forward to your response.

Best wishes, Sonia Poulton"

All in the mind? Why critics are wrong to deny the existence of chronic fatigue

Breaking the myths about M.E.. Taken from Sonia Poulton's article in The Daily Mail.

Myth No. 1: ME is a mental illness

Not so. It is a neurological one. It is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is. Psychiatrists have bagged it as 'their thing' and the General Medical Council has been somewhat remiss in suporting it as a physical condition.

I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.

Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E.
M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is

M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is

Dr. Speight, a medical advisor for a number of M.E. charities does. Commenting on the wide-ranging debilitation of the illness, he has said:

'The condition itself covers a wide spectrum of severity but even the mildest cases deserve diagnosis and recognition because if they are given the wrong advice or don't handle themselves correctly they can become worse.

'At the more severe end of the spectrum there's a minority of patients who are truly in a pitiable state...some of them in hospitals, some of them at home...and this end of the spectrum is really one of the most powerful proofs to me of what a real condition this is and how it cannot be explained away by psychiatric reasons.'
M.E. sufferers are subject to a battery of controversial fit-to-work assessments

M.E. sufferers are subject to a battery of controversial fit-to-work assessments

Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.

In Denmark, only last week, The Danish Board of Health sought to remove a 23-year old woman, Karina, from her family home on the grounds of mental illness despite the fact that what she really has is M.E.

Karina, bed-bound, light and sound sensitive and too weak to walk is considered to be insane, rather than physically sick, and her family has been repeatedly told by Danish doctors that the diagnosis of M.E. is not recognised.

Myth 2: ME is just extreme tiredness, right?

Wrong. Despite falling under the Chronic Fatigue Syndrome category - as does Fibromylgia which has its own Awareness Day next week - it is entirely wrong to assume that M.E. is merely about lack of energy.

This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.

The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about 'scroungers' in the benefits system who are 'too lazy' to get out of bed.

For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.

Myth No. 3: M.E. is just like a bad flu

Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Scelerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.

As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.

Myth No. 4: M.E. sufferers should just 'pull themselves together'

Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to 'tough love'.

Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.

M.E. is not a case of the mind being able to heal itself with determination.

M.E. breaks the body down and that also includes the brain.

Myth No. 5: Only adults have M.E.

Children have M.E. and their childhoods are destroyed as a consequence.

Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago.

"Since then it has been a continual rollercoaster of emotions and has been one fight after the other," says Margaret. "It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear.

"Our experience of my daughter's school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn't return to school that it would be classed as a psychological issue and social services would get involved."
It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles

It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles

Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.

Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.

Myth No. 6 - You can 'catch' M.E.

A hotly contested issue. Data suggests it's possible but the true cause is still subject to much debate among the more knowing professionals. What appears clear, however, is that ME seems to follow on from various viral infections, including meningitis. More research is needed.

Myth No. 7: Real M.E. sufferers are few and far between

There are currently 250,000 recognised cases of ME in the UK. That's 1 in 250 so that's hardly an insignificant number, is it?

Myth No. 8: Only severe cases of M.E. are worth acknowledging

Terrible misconception. M.E. ruins people's lives even if the patient is not entirely bedbound.

The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of 'not being ill enough'.

Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.
Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude

Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude

In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.

Myth No. 9: Children with M.E. have neglectful parents

There's the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy – the illness where parents act as if the child is sick to further their own need for attention.

This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.

Myth No. 10: Physical exercise will benefit M.E. sufferers

Absolutely not true. Worse, still, enforced 'graded exercise' can escalate the condition to dangerous and irreparable levels for the patient.

During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.

The physios say things like 'Come on, you can do it. You just have to put your mind to it' and, at worst, 'You're not trying hard enough.'

Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.

She told me:

"Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: 'You do know I have M.E.?' They said they did but not to worry as I won't be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!"

This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or 'refrigerator mums' as they were heinously and immorally labelled.

Myth No. 11 - M.E. is not life-threatening

It is, although the true mortality rate of M.E. is mired in great confusion.

Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that 'this information is not available and is not collected centrally'.

As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.

According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.

For campaigners this is nothing less than a fudge of the true scale.

Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.

Myth No. 12: M.E. is an excuse not to work

Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments - including our present Coalition - have chosen to ignore this.

Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.

When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.

M.E. Awareness Week

Ok, it's M.E. Awareness Week. I may not be able to cope with what has happened to me in my own life, but the least I can do is attempt to create some awareness. I apologise if these posts are badly written (worse than usual that is). I've something akin to brain fog going on at the moment.

I should also add that Blogger.com has switched me to their new system. I have absolutely no idea how to make the blog post title link to the articles I'm writing about anymore, so I'm going to have to sneak links to articles into my posts from now on. Sorry.

Let us start off our awareness with an absolutely fantastic article in ... The Daily Mail. Yes, I know that's a contradiction in terms, but there you go. Sonia Poulton has written an article entitled "All in the mind? Why critics are wrong to deny the existence of chronic fatigue". I'm told that the original title for the article compared M.E. to AIDS, which it still does very briefly at the end. It's not an unusual comparison .... but only between those who do understand M.E.. Those outside seem to respond as if the concept is pure blasphemy. How dare we compare out laziness to one of the world's most devastating diseases?

Well, Sonia's article explains clearly and simply why we dare. She starts off by describing how she had previously held the general tainted view that most people do of M.E.:

"M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers.

Damn it. We're all tired. Especially those fools like me who work all hours God Sends (and even some he doesn't) to support the type of people who say they are too tired to work.

Oh, and mostly, importantly, M.E. is 'all in the head' and can be overcome with a bit more determination and a little less of the 'poor me' attitude."

She then goes on to break down the commonly held misconceptions about M.E., listing them as:

1: ME is a mental illness
2: ME is just extreme tiredness, right?
3: M.E. is just like a bad flu
4: M.E. sufferers should just 'pull themselves together'
5: Only adults have M.E.
6: You can 'catch' M.E.
7: Real M.E. sufferers are few and far between
8: Only severe cases of M.E. are worth acknowleding
9: Children with M.E. have neglectful parents
10: Physical exercise will benefit M.E. sufferers

And she's absolutely spot on. These are things that we all hear all of the time. It's so hard to respond when people say these things to us, particularly since usually people aren't really interested, so they turn off as soon as you start to tell them they have a preconception.

The only slight quibble I would have with Sonia's article, is that she has started off by questioning why the records regarding M.E. are locked away for 75 years. It is intriguing, and worrying, but to those who don't know about M.E. and simply do not care, it sounds like conspiracy theory. I've tried discussing it with people myself obviously, and even with other M.E. sufferers I usually receive a blank wall in reference to this subject. I imagine that many readers will get to the part that sounds like conspiracy theory and lose interest in the rest.

However, the important thing is that this is an extremely well written article, and will be extremely useful to quote when I try to explain some facts about M.E. to people.