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.

Some benefits articles

I am totally exhausted. I've had a number of tabs open on my browser for days, possibly weeks, intending to write about them here. I give up. I'm just gonna give you a few snippets and point you in the right direction. Sorry. This blogger needs some rest!

"The poorest 20% of the 2.7 million households receiving disability benefits will lose 16% of their cash income plus benefits-in-kind, four times as much as the richest 20% of households, according to a report published by the Norfolk Coalition of Disabled People."

Disabled people are ‘collateral damage’ in government’s austerity war new report reveals

Peter was advised to top the amount of Jobseeker’s Allowance up with Income Support. Being ill myself I was unable to advise Peter and to my horror realised that he had a payment of £55 pounds per week for both of us to live on and pay our bills with in our rental property.

Dying man 'has only 12p a day to eat'

Ministers are also examining the idea of ending the annual inflation-linked rise in benefits, though this would require legislation and is a longer-term prospect.

Benefits could be frozen as Osborne tries to save £10bn from the welfare budget

The Department for Work and Pensions, who hired the French IT firm to help them slash the benefits bill, have admitted finding out in a survey that 55 per cent of people who lost benefits in the crackdown had failed to find work.

Benefits bosses admit over half of people ruled fit to work ended up destitute

Welfare benefits versus tax cheats.

A friend of mine posted this on Facebook the other day.

It says "Public Finance Warning. Tax cheats stole your benefits. Tax cheats cost the UK £95 billion a year". 

It is not an image I would share on my own Facebook. I don't believe people are automatically entitled to benefits, so 'stole your benefits' doesn't strike the right chord with me. This image is clearly aimed at benefit claimants. It needs to be aimed at people who do not claim benefits. People who think that benefit claimants (benefit cheats in particular) are causing the UK's money wells to run dry.

I do not know whether it is an accurate statistic. I do know that in 2010 it was estimated that tax cheats were costing the UK £70 billion a year. It's a scary figure.

The total cost of welfare benefits in the UK last year (2011) was £121 billion. Yes, that is a staggering amount. I find it astounding that the amount tax cheats cost the country is close behind though. Just imagine if we had that money back. There would be no more need to target the benefits system with such vehemence.

The total cost of welfare benefits in the UK in 2010 was £188 billion. A lot more than the following year. The cost of sickness and disability benefits however, was only £26 billion. You can see the vast chasm that is the difference between sickness and disability benefits, and the money lost to tax cheats.

The cost from tax cheats looks to be nearly three times that of the cost of sickness and disability benefits alone. The cost from actual sickness and disability benefit fraud will be minuscule in comparison.

So why is the government not doing anything about tax cheats? Why chase those who already have no money instead, when they could win back much much more money so easily?

Britain’s great benefits divide: The boroughs that claim most - and least - revealed

A Survey Of The UK Benefit System

Tax cheats cost you £1,150 a year

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?

£50 fine for errors

Hundreds of thousands of people are expected to face fines of at least £50 for "preventable" errors in their benefits claims.

Benefits: Thousands face £50 fine for errors

It would seem that people are up in arms about this fine of £50. So let's see why ...

If you are claiming state benefits, and do not inform the DWP of changes to your circumstances, you may be fined £50.

Changes of circumstances are any of the following:

• You got married or formed a civil partnership.
• You got divorced or your civil partnership was dissolved.
• You became widowed or a surviving civil partner.
• Someone else you are claiming for has died.
• You separated from your partner or moved in with someone.
• Someone else moved in or out of your household.
• You changed your name.
• You changed your address.
• You changed your Post Office.
• You changed your account details.
• Your income has changed.
• Your pension has changed.
• You have changed the number of hours you work, or the amount you earn has changed.
• You are ill and cannot attend the Jobcentre.
• You have started a further education course.
• You are going away from home, for any reason.
• Your savings go up to £5,500 or more if your savings of more than £6,000 go up or down (We may need to see a bank or building society statement).
• You have remortgaged your property r taken out a home improvement loan.
• Your home loan payments have stopped.
• You had an emergency that stopped you attending the Jobcentre.
• You have had any other changes you think we need to know about.

You can download the DWP Change of Circumstances form on the following link. I am assuming you can use the same form for all benefits. It is ridiculously difficult to find information on this. It seems that the time you have in which to inform the DWP of a change of circumstance varies according to which benefit(s) you are receiving, and which change has happened. As such, I would say that it's simply advisable to update the DWP as soon as you can.

Change of Circumstances

If you do not update the DWP, you are essentially committing fraud. As such I personally consider it fair for them to fine people. I am hoping that they are writing to people to check that they are correct about a change of circumstances before issuing fines though, and that they are being sensitive in cases where a loved one has passed away. However, I do not think that this 'change' is something people should be getting their knickers in a knot over.

The title of the article is 'Benefits; thousands face £50 fine for errors'. What a stupid title! It is not errors at all. The word 'errors' makes it sounds as if they will be finding people who are applying for benefits, for errors they are making on their application forms. Many people have simply read the title of this piece and reacted with alarm. They don't know what errors they could be penalised for making on their forms. Spelling errors? Getting the date wrong? Thankfully none, but sadly, so many people simply read the title of a piece and react rather than reading the whole article.

I'm now going to sit and watch the misinformation spread.

Not on my bus!

A 19-year-old woman with epilepsy says she was ordered off a bus in Bath after the driver told her that a disability card entitling her to free travel was a "p*ss take".

Woman with epilepsy ordered off bus in row over disability card

Absolutely disgusting. The article I have linked above describes how a 19 year old girl was told that her condition was taking the piss, by a bus driver, who would not allow her on the bus unless she paid despite her having a bus pass. Another lady on the bus came to her defence, paying the fare for her. 

Epilepsy is a serious neurological condition. Due to fitting, many people who have epilepsy are not allowed to drive. As such they are entitled to a free bus pass. They are totally dependent upon public transport or the good will of others.

What the bus driver thought of her condition should not be relevant to whether she is entitled to travel or not. The bus company says that their drivers receive disability awareness training. Obviously this bus driver paid little heed to it. He is obviously a man of low IQ; not only thinking that he is fit to judge who should have a bus pass, but knowing so little about epilepsy that he doesn't understand why she has the bus pass to start with.

The girl in the article is very grateful to the lady who paid for her fare, but she should not have to be. People with disabilities should not have to be grateful for being able to get along with their daily life. People who are fit and healthy are not, so why should we be?

I know this article is nothing to do with M.E., and only just connected with benefits, but I was so disgusted that I had to share it. I sincerely hopes the bus driver is at the very least reprimanded. Though I would take more pleasure in knowing that he lost his job and was replaced by someone with a disability.

It saddens and worries me at how much disability hate crime is on the increase.

Max Pemberton to champion our cause?

Max Pemberton has written a second article about M.E.. 

Why few dare tackle the psychology of ME

From some of the comments readers have left, I think I am rather glad that I missed his original article. He describes how he received torrents of hate mail following his original article. But since he starts this article by making the extremely uneducated statement that because XMRV and pMLV have been ruled out as causing M.E. that there is no biological agent, he is obviously inviting such hate mail again.

Funnily, reading the comments readers have left, he hasn't actually received the hate mail that he seems to be seeking. I've not seen one single comment supporting either him or his article, no M.E. haters, just a lot of people explaining to him how uneducated he is and providing some fabulous information on M.E.. The comments are not moderated; my own comment appeared on the site the second I posted it, so it isn't as if any M.E. hate is being hidden. I'm quite impressed by this.

He is a supporter of the 'M.E. is psychological' argument. His evidence seems to be the hate mail both he and Dr Wessely received. It seems to be a pattern of such thinkers that they completely ignore all the studies showing physiological evidence that M.E. is a neurological condition.

He is right in that people with M.E. are scared of M.E. being pegged as a psychological illness. He seems to think that this is because of the stigmatism psychological illnesses have though, when in fact it is because we can feel that it is physical. This just goes to show his own thinking on psychological illnesses, and that he's arrogant enough to presume that over 250,000 people think the same way that he does. Personally, I have absolutely no problem with admitting I have psychological problems. I've had severe depression and a breakdown in the past, am coming out of a depression again now. I have anxiety and PTSD, elements of OCD. It's no problem for me to say this. I do have a problem saying that M.E. is psychological though. I do not believe it is. I can feel the difference.

Doctor Shephard is the perfect example of a convert. He was a believer that M.E. was psychological, until he became ill with it. He has described the transformation to his life and his thinking in various places online.

Max does actually point out further into his article that the hate mail he received was perpetrated by only about 200 people, many of whom didn't even seem to be in the UK. I believe he placed this far into the article on purpose, as people who just read the first couple of paragraphs will miss it; their overall impression will be that all biological agents have been eliminated as possible causes of M.E.. He doesn't explain that there are over 250,000 M.E. sufferers, 200 is a minuscule portion of these. He's used the behaviour of these 200 people as evidence that we are all mentally ill. This is not particularly rational behaviour in itself.

I find it amusing that at the end of the article he says he "has a deep sympathy for sufferers of M.E.", that he'd "happily champion their cause" but that because of his experience he doesn't wish to be involved. (So, no, he wouldn't happily champion the cause). After writing one hateful article on M.E., and this one smiting many M.E. sufferers, it seems strangely ironic that he would make this hollow offer. It would be amusing for someone of his vein of thinking to champion the cause of M.E. though. Assuming such a role would mean working with M.E. sufferers, meeting with people regularly, seeing what we live with and go through on a daily basis. I don't think it would be long before he changed his mind about it being psychological.

Apology from an Atos Assessor

Please read the following article. I am going to cover it briefly, but it is a really nice piece.

Nurse Makes Heartfelt Apology After Atos Forced Her To Trick Disabled People Out Of Benefits

This is an article about a nurse who took a job with Atos, but felt compelled to leave the post after five months. She describes parts of the process and how much it upset her. She makes a heart felt apology to any claimants that she assessed, whom she may have prevented from receiving benefits through having her hands tied.

She explains that candidates were marked down if they looked well-presented, with neat hair and make-up, turned up with a toddler, or could sign the application form. She wasn't marking them down, she simply knew that by saying candidates were thus the computer marked them down. She had candidates sat in front of her whom she could see were unfit for work, yet the system would say that they were.

She says “We also had to assess their appearance. If a woman was wearing make-up and was nicely dressed, she was deemed as functioning and capable." I personally know that when I went for my medical that I was not nicely dressed; my hair was not neat, it was greasy, I wore no make up, and my clothes had holes in them (the perils of having pet rats). I was going through an extremely bad, stressful patch at the time, and finding it very difficult to keep on top of personal grooming. Yet the nurse who assessed me marked me down as being well presented. So, there are assessors who deliberately set out to make you fail.

It is nurses like Joyce Drummond, the lady in this article, who should be doing assessments. We should be assessed by people who genuinely care, and want to help, not vindictive cows who like to wave their power wands around. I believe she probably originally took the post thinking she could help the genuinely sick and disabled, naively thinking she would be weeding out those committing fraud, but then had expectations placed on her that in no way helped genuine candidates at all.

It is a shame that she felt compelled to leave the post, but I am grateful to her for speaking up.

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

ME / CFS Research Newcastle

ME / CFS Research Newcastle has created a page on Facebook, which you can follow here:

ME / CFS Research Newcastle

They have today posted a summary of the study they have proposed to the ethics committee. It is thus:

Chronic fatigue syndrome (CFS) occurs in 0.2-0.4% of the population and currently its cause is unclear. Abnormality of the autonomic nervous system is recognised in 3/4 of CFS sufferers and we believe that it underpins many of the symptoms that are characteristic of CFS. Autonomic nervous system dysfunction is characterised by symptoms of dizziness on standing, symptoms present in nearly 90% of people with CFS. Despite this, why autonomic dysfunction occurs in people with CFS is not understood and as a result treatments limited. This study will explore what leads to autonomic dysfunction in CFS particularly whether it occurs because of abnormalities in centres in the brain that control the autonomic nervous system, or, due to a peripheral volume or vascular problem. In non CFS diseases, autonomic dysfunction has also been shown to be associated with memory and concentration problems (cognitive impairment). Over 80% of those with CFS describe problems with memory and concentration, so this study will also explore whether there is a relationship between autonomic dysfunction and cognitive problems.

The programme has two phases:
1) we will use new ground breaking brain magnetic resonance scans that will allow us to study brain function in CFS and how this relates to problems of blood pressure control (autonomic nervous system) and memory and concentration (cognitive function).
2) we will explore whether cardiac or blood vessel function might contribute to autonomic dysfunction in CFS.

As it happens, I was going to speak to my doctor tomorrow about the problems I have when I stand up, so was interested to see that this is part of the proposal. (It also told me that there is no treatment for it, so little point in my discussing it with my doctor after all). I did actually think that it was already established that cardiac or blood vessel function contributed to autonomic dysfunction; it's listed in the International Consensus Criteria for M.E. as 'Orthostatic Intolerance'. So I shall look forward to seeing the results on this.

I will also be very interested to see what the study shows regarding concentration and memory.

Newcastle may be a long way from me, but I do wish I could volunteer for the study.

Happiness Barometer by Debbie Deboo

Debbie's a friend of mine. She posted a link to one of her blog posts on Facebook today, so I snuck over and had a snoop. Let me share it with you:

I found some old photographs the other day, pre illness. In some of them I’m sitting in a festival field with purple hair and a paper cup of beer in my hand surrounded by crowds. I have a big smile on my face. I post them onto Facebook and someone remarks ‘you look so happy’.

That got me thinking, yes of course I am unhappy with my illness but I hadn’t really realised the extent of how much it showed in my face and how my eyes now didn’t sparkle and my smiles were much more muted. I don’t set out to look unhappy and in fact I don’t go around feeling miserable, I think I’ve just fogotten what it is like to be SO happy. To be with friends, enjoying myself with beer and music, which of course never happens anymore.

It got me thinking about Richard and how his happiness must have been affected, he was sitting in that festival field too, smiling. He doesn’t go to festival anymore, and he isn’t ill. he stays with me….

I guess our barometer of feelings is based on a sliding scale and that sliding scale adjusts…..

I don’t feel particularly unhappy but maybe I’ve forgotten what happiness feels like.

It had me in tears. I had such a similar experience recently. I scanned all of my old photographs a couple of years ago. Then last year uploaded some to Facebook. The husband of a friend of mine was obviously looking through them. I've known him about a year, met him properly just the once. He sent me a private message saying simply 'What happened to you?'. Asking what he meant he asked me why I used to look so full of life, even despite being depressed, but in my more recent photos and when he met me that spark is gone.

That's M.E.. Unfortunately that's what it does to us. 'What happened to you?' is a question that will remain with me for some time to come.

Fibromyalgia is a joke?

Disagree with the title of this blog post? I do. If you're on Facebook, please go to this page and report it:

STOP the Whining!!! Fibromyalgia is A JOKE

How to report a page on Facebook:

• Next to 'message' click the little arrow.
• Select 'report page'
• Select 'hate speech'
• Select 'targets people with a disability or disease'
• Click 'continue'
• Check 'Report to Facebook'
• Click 'continue'
• Click 'ok'

Just a sample of what the delightful individual who made the page has to offer:

Is Fibromyalgia a disease with a physical pathogen, or merely the result of depression and stress? The pain may be 'real' but the cause may be literally all in your head.

One sure way to stir up controversy is to say that Fibromyalgia or Chronic Fatigue Syndrome or some other illness that has no physical symptoms (other than reported pain) is a made-up illness. People will get incensed and say, "Our Pain is Real!"

And that may be true. But pain does not occur in your joints, your muscles, or even in your nerve endings. No, it occurs in your mind. Even if someone saws your leg off with a chainsaw, the pain doesn't occur in the leg, but in your mind, where you actually feel pain. Similarly, you do not "see" with your eyes, but rather receive light signals. It is the mind that assembles these into images that we see.

But mental illnesses have a stigma in our society. And depression is one of those illnesses where we tend to blame the victim. "Cheer up!" we say, as if it were a cure. And people are thus reluctant to seek help for depression, convinced it is too trivial a matter to bother a doctor about.

And as a result, it is not uncommon for a lot of maladies to appear in the mind - psychosomatic illnesses. And these do occur with regularity, particularly among depressed people or hysterical teens. And some folks often make hay from these things - doctors or political activists with an ax to grind.

And the sufferers from these illnesses do enjoy the attention they get, and are comforted in having an official diagnosis of their ailment. After all, just "getting too old" or "drinking too much" or "being depressed" are not as concrete a diagnosis as a mysterious disease without any physical symptoms - other than pain. The mysterious disease has a name and a cache. And if anyone calls you out on it - that it might be fake - even the Doctor who first gave it a name - you can go on the offensive and call them all sorts of nasty things. Just wait for it...3.....2.....1.... FLAME!

He is right. It's made me very angry. I do not suffer with depression, so I disagree very strongly that FM or M.E. / CFS are physical manifestations of mental illness. I have suffered from depression and anxiety for years in the past, and yes, some of those years were while I was ill. I had a breakdown in 2001. I am not ashamed in the slightest to admit any of that. It says something about the author of the page that he assumes that every single person with Fibro would be ashamed to admit they had any psychological conditions. A few of my Fibro friends do, and they're not ashamed to admit it either.

I am insensed that someone has made this page. I do not understand what they stand to gain from it. I am assuming that there must be someone in their life who has Fibro, and they are jealous of the attention that person, or those people, get. He has talked about enjoying the attention from the illness after all. Personally, I do not get any attention from the illness, so I don't really understand what he is talking about there.

This is hate speech, plain and simple, and it should be squashed.

Frustrations; Fibromyalgia has changed my life

This friend of mine has M.E. and Fibro. She struggles every day, and it's heart breaking to watch.

I can't walk without walking sticks, I can't cook a meal for myself as its too painful to stand to prepare it and the pots and pans are too heavy for me. My memory is so bad I forget who I am on a regular basis and have caused accidents on many occasions due to forgetting I had left a tap running, or food cooking. I spend a lot of time sleeping, badly, and still wake up feeling like I haven't slept in months. I have pain in every single joint in my body and am constantly exhausted.

I have Fibromyalgia and it's changed my life completely! Yet still I keep on fighting! The support of my friends and family is sometimes the only thing that keeps me fighting and I love you all for it! XXX

Iams

Ok, I know this is neither M.E. or benefit related, but I just wanted to share this with people!

I've always fed my cat Iams. It was what my vet recommended, and I never questioned it. I switched from standard Iams to their hairball formula, because my cat struggles with hair balls. Horrible big ones. It fixed the problem.

When I moved here, my cat started eating what my boyfriends cats eat. This I shall not name. I noticed after a month or so that the quality of her coat was deteriorating. I wasn't sure why at first. My boyfriend suggested that it was because she was spending more time outside. He viewed her as being an indoor cat, but she really wasn't. Before we started moving around she went out daily, spending hours outside, she didn't go far, but she did go outside; she still isn't spending that much time outside here yet.

I suddenly wondered whether it might be her diet. So I suggested that we feed all four of them purely Iams for a while and see if it makes a change. With four cats it's too difficult to feed one one thing, and the others something else. So that's what we have done.

Her coat is back to the beautiful shiny luxury I know and love to stroke. Not only that though, but his three cats are enjoying beautiful shiny coats now too. I had noticed that their fur was different to hers, and now I understand why.

If it's giving them such beautiful coats, if we're noticing how much better they look, what's it doing on the inside? I wonder if they're all feeling healthier. My cat was certainly running around like a crazy thing yesterday. Three of them were curled up with me in bed, purring, this morning.

So, I'd like to say thank you to Iams. And let everyone know that I rate them highly. Now on to my next project; seeing if adding glucosamine to their diet helps one of the little ladies walk more comfortably!