Archive for May, 2013


The Work and Pensions Committee has decided to examine the way DWP releases benefit statistics to the media. This work will be undertaken in the context of the Committee’s yearly assessment of the DWP Annual Report and Accounts (ARA). The ARA 2012-13 is expected to be published by DWP at the end of June. The Committee will announce further details about the inquiry then.

http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/news/stats/

Article in the NewStatesman http://www.newstatesman.com/politics/2013/05/duncan-smith-face-grilling-mps-over-misuse-statistics

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Hi Everyone,

Today I learnt that the Work and Pensions Select committee will be calling Ian Duncan Smith or one of his ministers in to explain their use of statistics.

The Work and Pensions committee have decided to pull the minister (Who ever that ends up being) in for a one day session to look in to the DWPs use of statistics… In preparation they will be meeting with the UK statistics Authority in a closed meeting to find out how these statistics should be used…

To read more about this here’s an article in The FED

I would like to thank every one who signed our petition and implore you to help us get the last 7,000 signatures in place so we can summit our petition in time for this meeting.

I would also like to thank the members of the Work and pensions committee for their role in bringing this about and I’m sure we can find away for folks to thank them personally… And remind them that every one of these stats, every number, relates to a real person, a person that deserves our ministers to be truthful in their use of statistics and not twist and turn them till they bare little resemblance to the truth.

Please share the petition lets add the weight of public opinion to this debate…

https://www.change.org/en-GB/petitions/work-pensions-committee-hold-ids-to-account-for-his-use-of-statistics-2

So say we all

Hi folks today is fibromyalgia Awareness Day…

So what to write about that’s the question, last year i did a personal piece about telling the truth about how we feel… this year I’m so tired, I’m not sure i can get my brain to function well enough for anything clever… all the reason for this deterioration of my health can be found in previous blogs so I’m not going to repeat them here…

Its hard isn’t it when you’ve had a night out been drinking hard been up half the night and danced yourself stupid… when you wake up in the morning you feel like you’ve been hit by a truck, you’re a little nauseous or a lot, you might have a cracking headache, feel very fragile and weak and possibly hurt all over from the abuse you put your body through… Most of us can identify, with that as something we have done at least once…

Now imagine that this is how you feel but what you actually did last night was, got to bed by 9pm at the latest exhausted beyond belief. You tossed and turned for a bit because you hurt all over and found it difficult to find a part of your body that didn’t mind being laid on so found it difficult to get to sleep. Now lets imagine that you got to sleep… blissful oblivion… Except for the vivid dreams…

Then you wake up three of four hours later completely awake… It could be because your in so much pain you cant stand to lie on any side of your body for more than a few minuets at a time every muscle screaming at the pressure of your body on it… or your night clothes have ruffled under your body and feel like a knife cutting in to your flesh, or maybe its restless legs and arms that you feel an uncontrollable urge to clench and relax and move and they wont quit… or maybe your just wide awake still exhausted but the old brains not having any of it…

So you roll around in bed for a few hours not getting anywhere, or you get up have a warm milk, read a book spend some time on face book, to be honest you’ll do anything to distract your mind from the pain and the fatigue… eventually you may if your lucky make it back to bed and get some more sleep… if you’re not that’s you till the following night… or later that day when you crash out form sheer exhaustion. If your me, it probably just means as soon as I do drop off ill be woken by my alarm to get up and get my son to school and so the day repeats a little like ground hog day … the events of each day change but the result is the same unrelenting pain and fatigue. And i didn’t even get a great night out to deserve it… 😦

By Pain I mean anything from slight aching to excruciating ‘my god somethings broken’ kinda pain for what appears to be no reason, any where in the body at any time and often in more than one place at a time. Burning, Pinching, Stabbing, Aching, Shooting… you get the picture and you can have any of them or all of them any where in the body at any time…

By fatigue i mean the kind of tiredness that makes you wish you where more than unconscious, tiredness that makes you want to cry it’s so all consuming, and what’s worse it’s not just feeling like you’ve run ten marathons without a brake, it means muscle fatigue so you cant hold your arms up long enough to brush your hair or help your child put a T-shirt on… I describe it like someone has suddenly poured led in to my arms or legs making holding my arms up or walking standing a thousand times harder and strangely painful it’s so odd that muscle fatigue isn’t just to tired to lift something, it’s really painful too and I’m already much more tired than I’ve ever felt before even more tiered than 80 hours of labour and believe me when i say that was exhausting… Its like gravity has become hundreds of times heavier everything from holding a mug of tea to folding my arms is utterly exhausting…

So what’s causing all this?

No one really knows theres lots of thoughts but no real substance, but I think we are getting closer to a better idea of what’s going on or rather we are getting closer to understanding the complexity of what’s going on even if we dont know why. Their have been some very good reports in recent months that have started to unravel some of the story…

A recent article on Mast Cell Aware web site discussed a study that seems to say that some of the pain FM sufferer experience could be due in part to Mast Cells…

“First, what are mast cells? Mast cells are a part of the immune system and can be found throughout the body. Inside the mast cell are tiny granules containing different chemicals that cause inflammation. These unique cells control many bodily functions and are important immune, allergy and infection fighting or defensive cells. They commonly reside at our body’s various borders where we are exposed or vulnerable to attack. However, if we have too many of these covert immune cells in an area or they misbehave, severe symptoms and serious disorders can result.”

Mast cells are located in connective tissue, including the skin, the linings of the stomach and intestine, and other sites. They play an important role in helping defend these tissues from disease. By releasing chemical “alarms” such as histamine, mast cells attract other key players of the immune defense system to areas of the body where they are needed.”

“Mast cells are implicated in the pathology associated with the autoimmune disorders rheumatoid arthritisbullous pemphigoid, and multiple sclerosis. They have been shown to be involved in the recruitment of inflammatory cells to the joints (e.g.rheumatoid arthritis) and skin (e.g. bullous pemphigoid) and this activity is dependent on antibodies and complement components.”

“Mast cells play a major role in many physiologic processes, but for reasons that are unclear, they may become an aggressive force, which can damage the natural biologic balance.”

So these Mast Cells could be playing a role in our widespread pain…

Another study conducted at the University of Illinois College of Medicine at Chicago, found…

“These studies, comparing fibromyalgia patients to healthy people, confirm that fibromyalgia is an immune system disorder.”

“What we discovered over years of research is that fibromyalgia patients have an abnormal immune system,” said Bruce S. Gillis, MD, MPH, lead researcher and founder of EpicGenetics. “These peer-reviewed results have finally been able to ‘tear back the curtain’ to reveal that fibromyalgia is an immune system dysregulation disease relating to the production of protein molecules called chemokines and cytokines by a certain type of white blood cell.”

And another study in to “Muscle fibre velocity and electromyographic signs of fatigue in fibromyalgia” a study in to why it is so difficult, painful and tiring for FM patients to exercise found that…

“something as simple as mental stress tests (math test) or eating or other sympathetic nervous system activators can activate the back muscles of people with fibromyalgia. That study suggested FM patients muscles could be in state of almost continual activation.”

“One might have thought that strength and frequency of the electrical signals would have been reduced in these exertion challenged FM patients but as so often happens, the opposite was true; the electrical signals in their muscles were, oddly enough, going banana’s, putting them were into a hyper-active state.”

“Electrical signals trigger the muscle contractions we use to produce force but those signals should diminish in between the muscle contractions. They did in the healthy controls but not in the FM patients whose muscles were being constantly prodded to contract.”

‘This didn’t mean they were supermen or women in disguise; far from it – the inability to turn their muscle activity off and allow them to rest – suggested their muscles were chronically tensed, not strong.”

“With your muscles in a continually contracted state every time you put them under load it may be that you are running a marathon for every mile you walk. This study suggests that exercise may throw the muscles of people with FM in a state of confusion in which muscle rest breaks disappear leaving the muscles chronically activated (and in an arrythmic state?). “

“The ongoing sympathetic nervous system activation, the possibly increased glutamate activity, the NK cell burnout, the inability to turn off attention to innocuous stimuli and now the ongoing electrical activity/muscle contraction in FM all suggest chronically activated systems play a role in this disorder.”

So Along side changes that have been detected in both blood flow and function of the brains of people with FM these new discoveries prove that not only is Fibromyalgia very real but that it is also extremely complex affecting multiple systems simultaneously it is chronic multi system failures and or over reactions none of which are consciously controllable…

Please follow the links and read the articles in full they are not very long and will help you, your friends and families to come to grips with some of what’s happening with fibro… I could continue writing about the things that are going on with us but to be honest I’m to tired so this will have to do for now…

Have a great Fibromyalgia awareness day enjoy it to the full even if you crash tomorrow… excuse me now I’m going to go fall over and rest… Dxxx

Other links…

http://but-you-dont-look-sick.blogspot.co.uk/2013/05/treating-symptoms-wont-find-cure.html?spref=fb

Almost a month ago Jayne Linney & I wrote a letter to Esther McVey disputing her use of statistics & offering a wide range of evidence which demonstrated just this.

866 people signed the letter and many left harrowing tales of suffering as a result of  ’Welfare Reform’; which were then appended to the end of the signatures; the letter was posted yesterday by recorded delivery to arrive at Parliament today.

Aside from posting today @ 1pm we are also emailing the following Politicians, Ms McVey, IDS,, Shelia Gilmore – also campaigning about misusing stats, and Michael Meacher, John McDonnell Ann McGuire & Liz Kendall as they have been sympathetic & supportive of the campaign; Dame Anne Begg – chair of Work & Pensions Committee has already received a copy.

If you’re up for it why not email your own MP with a copy of the letter ? https://docs.google.com/document/d/1n2QVXOKKSfkn9dwXOvmQ74Vzbhyx7HXEbid8EpEb674/edit The more Politicians became aware the better chance we have of this working.

Most of you will also be aware of what occurred as a result of your letter, we set up the petition to hold IDS to account, as he is ultimately responsible for everything that’s comes out of the DWP; to date we have  over 52,000 signatures. https://www.change.org/en-GB/petitions/work-pensions-committee-hold-ids-to-account-for-his-use-of-statistics-2# and if you’ve not already signed, please do.

Well that’s the news on this up to date, we certainly had no idea what began out of frustration & fear would become but, we think it demonstrates when we all pull together we can achieve our goals.

Until the next update x

Hi folks wow where did that year go? 🙂

Today is blogging against disableism day, this time last year I did a piece about how the media had whole heartedly embraced the scrounger  rhetoric condemning thousands of us to derision and hate from the general public.

Has much changed in that time?

Yes and No…

We still have a constant barrage of offensive and inaccurate reporting, that would be laughable if it wasn’t so serious. We still appear to be at logger heads with our current government with regards to benefit reform, and those on welfare in general…Here’ just a Couple of examples… The Sun, The Daily Mail,

But, there have been some subtle changes, changes that have been hard-won… We are seeing more articles, about how the welfare reforms are not well thought out, more articles that question the statistics that are coming out of the DWP, articles that wholly disagree with some of the changes that have been introduced since April such as the Bedroom Tax, Universal Credit, and PIP… some even questioning whether the changes are even possible… here are some more examples… The Guardian, The IndependentThe Huffington Post

So the bias has subtly shifted but still is a long way from the kind of treatment any minority would expect in the twenty-first century.

This year I’ve become  aware of another form of disableism, least I think of it as disableism…

I keep having the same conversation with people… People who think disability campaigning is about politics… Which seems to be something the disabled should not be involved in… least not vocally… According to a few… Now I don’t deny that there is an element of working in the political arena that goes with disability campaigning, but the reason we do it, is not because of politics as such.

Disability campaigners have really one goal in mind, we want to see a society that is inclusive, we want to see a society that doesn’t marginalised, exclude or make us sicker by its very existence…  after decades of disability movements and some extraordinary campaigners, we still have people who think that lobbying an MP to improve a service, or try to get Ministers to tell the truth is about policies is politics… it isn’t…

It’s always about identifying areas that continue to need improvement,and fighting for that improvement… weather its Social Care or Benefits… and regardless of which political party happens to be in office.

If the transport system for example needs improvement, as disabled people how do we go about getting those improvements? We can lobby the companies to get them to one at a time change their policy or we can campaign via our MPs, we can petition or lobby the government to get the law changed so that all the travel company’s have an obligation in law to put changes in place to improve things…

Several times in recent weeks I have lost FB group members and friends because i refuse to be a good disabled person and sit quietly on the side lines and let someone else decide how the welfare system can help me, how social services can help me and how society will consider me…

Many think its wrong to stand up and say this is not right, we need you to include us in the process, you need to understand that We as disabled people want to be involved, to have a say, about how we challenge society, to finally get politicians and the public to grab the bull by the horns and accept us fully, as real meaningful members of society…

Being political is different to party politics. Whether we like it or not politics is everywhere, and if we want the right to be free to live how we choose, we have the responsibility to do something about it. It is time to move away from, “As long as Im ok then its someone else’s problem”… To one that says, “Are We ok as a society?”

Some people may choose to bury their heads and claim that “I’m too sick for this” or “I’m too disabled, and I have my own battles”.  But the only way to get what you need is to ask for it… the old ‘ those who ask dont get’ mentality will not help us in this fight, we need to not only ask, but to demand that equality becomes a reality… Before any more back peddling on our rites can happen. As the well-known disability rally cry states…

‘Nothing About Us With Out Us’

So Say We All… Dxxx