CHAOSTOCOSMOS

Tuesday, 29 April 2014

The 'Body' is Back in Fibromyalgia: Small Nerve Fiber Damage Suggests The Pain Begins There

The evidence has been mounting over time, but over the past year it’s become clear that Fibromyalgia is not a brain or a body disorder: it’s both. Recent studies have found immune, autonomic nervous system, and muscle issues in FM. With this fourth study in the past year showing substantial damage occurring in the peripheral nervous systems, the body is back in the FM spotlight big time.

The 'Body' is Back in Fibromyalgia: Small Nerve Fiber Damage Suggests The Pain Begins There

First Direct Evidence of Neuroinflammation – ‘Encephalitis’ – in ME/CFS

What makes this study so fascinating is that it provides tantalising
evidence supporting not only of current views that inflammation in the
brain is central to understanding the disease, but also of Melvin
Ramsay’s original name of ‘myalgic encephalomyelitis‘.

First Direct Evidence of Neuroinflammation – ‘Encephalitis’ – in ME/CFS

Regency Relatives or Early Eastenders

For many years I’ve had a passing interest in researching my family history, but generally hadn’t pursued this further than the last couple of generations of folk who were within someone’s living memory, not least because with a bunch of very commonly named folk, many of whom were manual (particularly farm) labourers, I didn’t think there’d be much recorded about them.

But, of course, it’s so much easier to research now that so many records are available online and, since communicating with other family members (some for the first time) who are researching their parts of the story, since my mother died in 2011, I’ve been unearthing all sorts of records I didn’t think I’d ever encounter and the further I go back, the more fascinating and magical it becomes.

I’m particularly interested in my mother’s father’s family, because now two of us, completely separately, believe him to have been Jewish (from his mother’s line), but while the circumstantial evidence is pretty great for having at least some Jewish blood, I’ve yet to prove it conclusively.
When the 1911 Census records were first made available online, I’d acquired copies of the records relevant to both my maternal grandparents, who were children at the time, but got no further with my grandfather as searches had come up fruitless.

Throughout her life, my mother had been most pedantic that her maiden name was spelled Sweeney “with three Es.” Of course it should have occurred to me earlier to ignore that and, lo and behold, I find that most of the records from 1901 backwards are listed with the spelling of Sweney, sometimes Sweeny and even Swaney.

Hence, by trying various spellings – but always double checking other details, such as dates, ages and other family members listed together, via the various census records, I’ve now got as far back as one John Swaney (as he’s listed in the 1841 Census) born 1809, who by the time he died, in Poplar, in 1892, was John Sweeney, even though his son and grandson were often listed with alternative spellings.

St Leonard's, Shoreditch
On 11 Jun 1832, in Shoreditch at the church of St Leonard (often known simply as Shoreditch Church - this is the church mentioned in the line "When I grow rich, say the bells of Shoreditch" from the nursery rhyme Oranges and Lemons), this John Sweeney married Anne Elizabeth Gabbeday (sometimes Ann Gabbedy, later Ann Sweeny by the time she died, in Whitechapel, in 1855), who was baptised at St Anne, Limehouse on 14 Apr 1811.

She was the daughter of John & Isabella Gabbeday (nee Cleghorn).

John & Isabella sound like names you’d find in a Jane Austen novel of the period (indeed, Emma’s sister and brother-in-law are John & Isabella), while the surname of Gabbeday wouldn’t be at all out of place in a Dickensian novel, me thinks.

Going back to John and Ann Sweeney … they had a son, also John Sweeney. His son was named Job and he, Job Sweeney also had a son, Job Thomas Sweeney, who was my grandfather.

1811 dance dress
Thus, by my calculations, Anne Elizabeth Gabbeday was therefore my Great-Great-Great-Grandmother.

And the origin of the surname Gabbeday, I'm told, is Jewish.
Right) 1811 dance dress showing the fashion of the era.
To put these ancestors into their historical context:
See: Timeline of the formal Regency


Limehouse terrace
In 1841 John and Ann Sweeney were living in Stepney, by 1851, they had moved to Mile End and in 1861 the family, minus Anne who had died in 1855, had moved back to her native Limehouse, but they never stray outside of the area of Tower Hamlets, the main area of the East End of London; an area famous for very poor people and successive influxes of foreign immigrants - in particular Irish weavers and Ashkenazi Jews.
 
(Left) Early Georgian terrace and Grapes pub in Narrow Street, Limehouse, Tower Hamlets. These would have been familiar surroundings to John and Ann Sweeney, (minus the cars, of course.)

Whatever would they make of it now, I wonder?


It’s difficult to gauge what my ancestors must have been like, although I doubt they were of Austen-like gentility. One imagines scenes more in common with William Hogarth's depiction of London vice, Gin Lane (1751).
By the 19th Century … “The 'Society for the Suppression of Vice' estimated that between the Houndsditch, Whitechapel and Ratcliffe area there were 1803 prostitutes; and between Mile End, Shadwell and Blackwall 963 women in the trade. They were often victims of circumstance, there being no welfare state [1] and a high mortality rate amongst the inhabitants that left wives and daughters destitute, with no other means of income.”
[1] (Much like things are becoming once again then!)

Knowing that much of my family came from the East End, I’d previously assumed that they were ‘umble, working class oiks. John Sweeney, however, had his occupation listed as a carpenter and his neighbour was a cabinet maker. So these were people with skills and a trade for which they had, presumably, served an apprenticeship and would therefore have been a smidgen further up the class ladder than average and, hopefully, not have been starving.

The Labour Party commissioned Poverty and Disability Taskforce Report in a nutshell

This is especially so in these tough economic times when, despite
public spending cuts, millions of pounds of public money are being
wasted on poorly designed, ineffective and bureaucratic systems and
approaches such as the Work Capability Assessment, the Work Programme
and fragmented public services. Disabled people frequently face more
red-tape than the average small business in securing the support just to
lead lives that everyone else takes for granted. This contributes to,
rather than helps relieve, poverty, undermining people’s life chances.

The Labour Party commissioned Poverty and Disability Taskforce Report in a nutshell

Monday, 28 April 2014

Breast cancer mammograms: overrated, overhyped and over-diagnosing women

Blausen_0628_MammogramIt is time to radically re-think the flawed philosophy behind the 'early detection' tenet of the breast cancer awareness movement.

They go against the Hippocratic Oath (they do harm)!

At last somebody else is saying it. It's why I've been refusing mammograms (and certainly NOT supporting pink-ribbon "awareness" campaigns) for years; that and the pain of them (real fucking awful unbearable pain when you have fibromyalgia) and having been falsely diagnosed myself with breast cancer back in the late 90's. With all the accompanying stress that brought!

"In calculating the role of population-based screening, the absence of benefit is only compounded by evidence of harm: 21.9% of breast cancers found through mammography screening represented over-diagnosis, according to the Swiss Medical Board. This means that one in five women who was told she had breast cancer after mammography screening received unnecessary treatment."

It's lucky I was sceptical and rejected the (barbaric) treatment offered me, or the end of this tale might have been very different indeed.

Breast cancer mammograms: overrated – and over-diagnosing women

Fibromyalgia Awareness Day Coming Up - Take the NFA Survey

Fibromyalgia Awareness Day is coming up on May 12! I know that doesn't
mean a lot to most of us - you can't walk 5K or organize local events
when you can barely get out of bed - but there are ways we can all help
raise awareness, regardless of your functionality level.

Fibromyalgia Awareness Day Coming Up - Take the NFA Survey

Case proven? Government stays away from benefit deaths tribunal

The Information Commissioner’s Office and the Department for
Work and Pensions have highlighted the weakness of their own case for
hiding the number of people who have died while claiming sickness and
disability benefits – by failing to turn up at a tribunal on the
subject.



They had the opportunity to explain why mortality statistics for
people claiming Employment and Support Allowance since November 2011
have been suppressed, at a tribunal in the Law Courts, Cardiff,
yesterday (April 23).


But, rather than be grilled on the reasons for their decision by a
judge, a specialist in this area of law, and a ‘lay’ person
(representing the opinions of right-thinking members of the public),
they chose to stay away.

Case proven? Government stays away from benefit deaths tribunal

Multiple Cuts for the Poorest Families and Conservative catechisms

The documents marginalise the structural causes of persistent and
inevitable unemployment and of poverty by attempting to linguistically
transform these into individual pathologies of benefit “dependency” and “worklessness”. The conservative response
to conservative creations and definitions is a raft of policy measures
that are about punitive conditionality and removal of lifeline benefits.


Multiple Cuts for the Poorest Families and Conservative catechisms

Breaking the Link between Disability and Poverty – full report

Whether in paid work or not, disabled people are twice as likely as non-disabled people to experience material hardship – to be unable to afford two or more items from a list that includes food, clothing, furniture, household appliances and a computer.

Breaking the Link between Disability and Poverty – full report

Sunday, 27 April 2014

How to Prove to Your Doctor You've Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed

So you’re fatigued much of the time, can’t exercise without symptoms, wake up like a leaden lump no matter how much sleep you get, feel confused and disoriented a lot, and aren’t into beating yourself up a lot, you have Chronic Fatigue Syndrome – not depression. (If you experience shortness of breath you might want to bring that up also.)

How to Prove to Your Doctor You've Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed :: Health Rising



There's also the point that depressed people tend to find no joy in and don't want to do things. Those with ME/CFS want to, wish to, if only we could. That alone tends to clearly differentiate between the two. Unless, of course, you have ME/CFS AND are depressed. (Been there too.)

The Pain Sensitivity Vitamin

This suggests that low
Vit D3 levels are associated with pain sensitivity but may not
contribute to the widespread pain found in FM. They may however
contribute to other symptoms such as fatigue, sleep and cognitive
problems found in FM and ME/CFS.

Low Vit D3 levels appear to common in chronic pain, Fibromyalgia and
ME/CFS. (Dr. Bateman said she was shocked at how common D3 deficiencies
were in ME/CFS) Vit D3 is not the answer, but it’s cheap and readily
available.

Is there any reason we shouldn’t all be taking Vit D3?

Read more: The Pain Sensitivity Vitamin http://www.cortjohnson.org/blog/2014/04/26/pain-sensitivity-vitamin/
This suggests that low
Vit D3 levels are associated with pain sensitivity but may not
contribute to the widespread pain found in FM. They may however
contribute to other symptoms such as fatigue, sleep and cognitive
problems found in FM and ME/CFS.

Low Vit D3 levels appear to common in chronic pain, Fibromyalgia and
ME/CFS. (Dr. Bateman said she was shocked at how common D3 deficiencies
were in ME/CFS) Vit D3 is not the answer, but it’s cheap and readily
available.

Is there any reason we shouldn’t all be taking Vit D3?

Read more: The Pain Sensitivity Vitamin http://www.cortjohnson.org/blog/2014/04/26/pain-sensitivity-vitamin/
This suggests that low
Vit D3 levels are associated with pain sensitivity but may not
contribute to the widespread pain found in FM. They may however
contribute to other symptoms such as fatigue, sleep and cognitive
problems found in FM and ME/CFS.

Low Vit D3 levels appear to common in chronic pain, Fibromyalgia and
ME/CFS. (Dr. Bateman said she was shocked at how common D3 deficiencies
were in ME/CFS) Vit D3 is not the answer, but it’s cheap and readily
available.

Is there any reason we shouldn’t all be taking Vit D3?

Read more: The Pain Sensitivity Vitamin http://www.cortjohnson.org/blog/2014/04/26/pain-sensitivity-vitamin/
This suggests that low Vit D3 levels are associated with pain sensitivity but may not contribute to the widespread pain found in FM. They may however contribute to other symptoms such as fatigue, sleep and cognitive problems found in FM and ME/CFS. Low Vit D3 levels appear to common in chronic pain, Fibromyalgia and ME/CFS. (Dr. Bateman  said she was shocked at how common D3 deficiencies were in ME/CFS) Vit D3 is not the answer, but it’s cheap and readily available. Is there any reason we shouldn’t all be taking Vit D3?

The Pain Sensitivity Vitamin :: Health Rising

What We Learned This Week (weekly)

Posted from Diigo. The rest of my favorite links are here.

Wednesday, 23 April 2014

Poverty has been rebranded as personal failure

Disabled people in this country are twice as likely to live in poverty. The reality of having vast extra living costs or being too ill to work is not an excuse for government, but a damning indictment of its failure. The coalition government has compounded disadvantage. Policies such as the bedroom tax and council tax cuts have, almost wilfully, increased inequality. Each policy change imposed on disabled or chronically ill people has been a cut – a slash to support, or punitive, flawed hoops to jump through – dressed up as reform.

Poverty has been rebranded as personal failure

Celebrate St George The Immigrant

George - English Festival, St. George's Day, R...
George - English Festival, St. George's Day, RIverside, Medway (Photo credit: Wikipedia)

Join us in this simple day of (in)action to celebrate the life of St George the Immigrant on St George's Day, April 23rd.


His father was born a Greek, travelled to the city of Lod in Palestine, where he served in the Roman army and married a local girl. As a young man, George himself emigrated to Turkey, joined the army there, and did very well for himself, rising to the high rank of Tribunus.

It is somewhat ironic, then, that St George has become a symbol for a certain kind of English xenophobia. Given his family’s success stories, now is the time to reclaim St George, and celebrate him as the Patron Saint of Immigration.

Celebrate St George The Immigrant

Tuesday, 22 April 2014

Freedom of Information tribunal on benefit deaths – April 23

That we live in times when a government can withhold information
about the impact of its policies on the vulnerable is extraordinary, and
certainly reflects the fact that we are no longer a democracy.

We knew in 2012 that an average of 73 sick and disabled people were
dying after they had their lifeline benefits withdrawn. But now the
government refuses to provide us with information about deaths since
then. It’s my own belief that this refusal is because the truth will be
horrifying and that even those that supported benefit cuts originally
will raise their objections when they learn the truth. We cannot claim
to be a civilised society when our government policy is killing the
vulnerable.

Freedom of Information tribunal on benefit deaths – April 23

Monday, 21 April 2014

The Yellow Wonder: A Safer Alternative to NSAIDs

Chronic inflammation has been linked to allergies, arthritis, asthma,
atheroschlerosis, coronary heart disease, diabetes, digestive disorders,
hormonal imbalances,osteoporosis,psoriasis, stroke, and arthritis.
It is thought now that inflammation plays central role in almost every
degenerative process associated with aging, from inflamed gums that may
provoke cardiovascular disease, to Alzheimer’s Disease. The
inflammatory response is responsible for loss of bone mass and joint
cartilage accompanying aging. The Need for a Safe Anti-inflammatory. Control of inflammation is a logical way of arresting the progression of
the degenerative process of aging. NSAIDs (non-steroidal
antiinflammatory agents) such as baby aspirin is taken daily as a
preventative for atheroschlerosis. NSAIDs are widely used for chronic
arthritis.

The Yellow Wonder: A Safer Alternative to NSAIDs | heal-it-yourself

How Chronic Pain and Illness Fan the Flames of Uncertainty

No one is immune from life’s uncertainty. But for the chronically
ill—which includes those who suffer from chronic pain—it can feel as if
the number of life factors subject to uncertainty has increased
exponentially. Indeed, perhaps the hardest thing about being chronically
ill is the uncertainty it brings to almost every aspect of life. Here are six ways in which uncertainty is a particular source of stress for the chronically ill:

How Chronic Pain and Illness Fan the Flames of Uncertainty

Natural Pain Relief: Chronic Pain Supplements


Anti-inflammatory plants and herbs. Chronic inflammation
contributes to many painful conditions, including osteoarthritis and
back pain. Anti-inflammatory medicines such as aspirin, ibuprofen, and
naproxen work well because they block the enzymes that trigger both
swelling and pain.


"There are natural alternatives to NSAIDs that have a similar
mechanism," says Leopold. They include turmeric, green tea, ginger,
rosemary, cat's claw, devil's claw, and willow bark.

Natural Pain Relief: Chronic Pain Supplements

Natural anti-inflammatory agents for pain relief

This article is a literature review of the biochemical pathways of
inflammatory pain, the potentially serious side effects of nonsteroidal
drugs and commonly used and clinically studied natural alternative
anti-inflammatory supplements. Although nonsteroidal medications can be
effective, herbs and dietary supplements may offer a safer, and often an
effective, alternative ...

Natural anti-inflammatory agents for pain relief

Beyond the Barriers – new report exposes appalling failures of Atos

Beyond the Barriers is a well-researched, authoritative and timely
demolition of the appalling failings of the Atos tests and out-of-work
sickness support brought in by the Government. It doesn’t just critique
the current system and the way it fails disabled people, it cogently
promotes a viable policy alternative which protects the interests of
disabled people without being profligate with public money.

Beyond the Barriers – new report exposes appalling failures of Atos

Until ESA is reformed, the rights won by generations of disability campaigners will evaporate

Employment and Support Allowance promised to liberate people by
assessing their capabilities, not their disabilities, and giving them
intensive, personalised support to achieve their aspirations and lift
them out of poverty. Six years on from its introduction, it is clear the ESA system is a sham.

Until ESA is reformed, the rights won by generations of disability campaigners will evaporate

Sympathetic Nervous System Dysfunction in Fibromyalgia, ME/CFS, IBS & IC

A new review of nearly 200 studies advances the theory of sympathetic nervous-system dysfunction in four common overlapping conditions:

  1. Fibromyalgia (FMS),
  2. Chronic fatigue syndrome (ME/CFS)
  3. Irritable bowel syndrome (IBS), and
  4. Interstitial cystitis (IC, bladder pain).
Researchers say that the body of literature demonstrates sympathetic
dysfunction in all of these conditions, suggesting that something called
"dysautonomia" could be the triggering factor for them.

Sympathetic Nervous System Dysfunction in Fibromyalgia, ME/CFS, IBS & IC

Brain Scans To Detect Chronic Fatigue Syndrome

Researchers have found that inflammation of the nervous system is
higher in patients with chronic fatigue syndrome (CFS) than in healthy
people. The study, published in The Journal of Nuclear Medicine,
suggests that using positron emission tomography (PET) scans to detect
brain inflammation could be an objective diagnostic test for CFS.

Brain Scans To Detect Chronic Fatigue Syndrome

Beware the official-looking EuropeanHealthCard.org.uk

If you live in the UK, you can apply for a European health insurance
card (EHIC) that lets you get reduced-cost or free state-provided
healthcare while you’re in continental Europe. This card is free.
There’s no cost for it.

However, the very official-looking
EuropeanHealthCard.org.uk will charge you up to £25 for proofreading and
forwarding services. This is one of the most official-looking
misleading websites that I’ve come across, and I’d be willing to bet
that a lot of people have paid money that they didn’t have to because of
it.



4 Websites That Look Official But Will Take Your Money

The Fatigue and Pain Producers: Could Glial Cells Be 'It' in Chronic Fatigue Syndrome and Fibromyalgia?

Suddenly glial cells are turning up in spades in Chronic Fatigue Syndrome and Fibromyalgia.  The Japanese neuroinflammation study found widespread glial cell activation in the brains of people  with ME/CFS. Younger’s leptin finding suggests the glial cells may be going bonkers in ME/CFS, does his successful low dose naltrexone study in Fibromyalgia. VanElzakker’s Vagus Nerve Infection Hypothesis proposes chronic glial cell activation near the vagus nerve is causing ME/CFS.

The Fatigue and Pain Producers: Could Glial Cells Be 'It' in Chronic Fatigue Syndrome and Fibromyalgia?

Sunday, 20 April 2014

Does Sympathetic Nervous System Dysfunction Underlie Fibromyalgia, Chronic Fatigue Syndrome and Related Disorders

A review of almost 200 published papers on sympathetic nervous system functioning in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis indicated that 72% of the studies found some sort of SNS dysfunction was present. Most found sympathetic nervous system over-activation but 7% found parasympathetic nervous system over-activation. The review suggested autonomic nervous system problems could underlie these often co-morbid disorders. They recommended trying pharmacological and nonpharmacological measures to try and restore ‘autonomic balance’.

Read more: Does Sympathetic Nervous System Dysfunction Underlie Fibromyalgia, Chronic Fatigue Syndrome and Related Disorders http://www.cortjohnson.org/blog/2014/04/14/sympathetic-nervous-system-dysfunction-underlie-fibromyalgia-chronic-fatigue-syndrome-related-disorders/A review of almost 200 published papers on sympathetic nervous system functioning in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis indicated that 72% of the studies found some sort of SNS dysfunction was present. Most found sympathetic nervous system over-activation but 7% found parasympathetic nervous system over-activation.

The review suggested autonomic nervous system problems could underlie these often co-morbid disorders. They recommended trying pharmacological and nonpharmacological measures to try and restore ‘autonomic balance’.

A review of almost 200 published papers on sympathetic nervous system functioning in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis indicated that 72% of the studies found some sort of SNS dysfunction was present. Most found sympathetic nervous system over-activation but 7% found parasympathetic nervous system over-activation. The review suggested autonomic nervous system problems could underlie these often co-morbid disorders. They recommended trying pharmacological and nonpharmacological measures to try and restore ‘autonomic balance’.

Does Sympathetic Nervous System Dysfunction Underlie Fibromyalgia, Chronic Fatigue Syndrome and Related Disorders

Problems Standing? Studies Suggest Autoimmunity Causes Orthostatic Intolerance: Implications For Chronic Fatigue Syndrome

People with POTS experience high heart rates, fatigue, dizziness, and light-headedness while standing or even at times while sitting. One of the striking things about POTS is how commonly, like Chronic Fatigue Syndrome, infections precede it. This study looked at autoantibodies to adrenergic (autonomic nervous system) receptors found on the blood vessels and in the heart which control heart rate and blood flow across the body.

Problems Standing? Studies Suggest Autoimmunity Causes Orthostatic Intolerance: Implications For Chronic Fatigue Syndrome

How To Find Out Which Foods Are Making You Sick

A food intolerance is usually a delayed reaction that can cause
intestinal issues or other symptoms. This is an area where much research
is being conducted about the immune system and other mechanisms. In
fact, we are finding more and more conditions that are affected by the
food we eat. So, in short, these food intolerances can be causing all
kinds of symptoms that range from headaches to bloating.

How To Find Out Which Foods Are Making You Sick

The wide awake club: fighting insomnia

When you are sleep-deprived, you struggle to think straight. Research by University College London Medical School revealed that people who fail to get a full night's sleep score significantly lower on tests of logic and vocabulary.
Those who are sleep-deprived (which has been pegged at less than six
hours a night) have slower reaction times, and experience blackouts
known as "micro-sleeps". At the wheel of a car, this can be dangerous:
in the US, fatigue is believed to cause more than 1,500 deaths on the roads every year. Sleep deprivation can also affect your general health, by reducing levels of the hormone melatonin.

The
good news is that researchers show a fair consensus about the best
methods to combat sleeplessness. Here are eight of their top tips.

The wide awake club: fighting insomnia

5 Top 'Living With CFS' Blogs To Read

There are many top bloggers out in the blogosphere who are writing about living with chronic fatigue syndrome / myalgic encephalomyelitis (CFS / ME), their experiences in managing their illness, and giving tips and support to other people with CFS.

5 Top 'Living With CFS' Blogs To Read

What We Learned This Week (weekly)

Posted from Diigo. The rest of my favorite links are here.

Thursday, 17 April 2014

Labour Pledges To Transform Controversial ‘Fit For Work’ Tests

The WCA would also include an analysis of the types of work claimants may be capable of doing, tailored to the individual, rather than a blanket test which only determines whether a person is ‘fit for work’ or not. Disabled people themselves would be given a greater role in monitoring how well tests perform and suggest possible improvements.

Labour Pledges To Transform Controversial ‘Fit For Work’ Tests

Wednesday, 16 April 2014

Iain Duncan Smith says I'm dependent. But my benefits are a lifeline, not a trap

You could say that me and my family are dependent on benefits. In the same way we were dependent on my salary and we are still dependent on my pension and the money my wife earns. Unless we are born rich, we all depend on the money coming in every month. But Iain Duncan Smith uses dependent in a way I reject. Dependency sounds like people are addicted to benefits. If that's the prevailing attitude, then no wonder people who need support feel picked on and ashamed.

Iain Duncan Smith says I'm dependent. But my benefits are a lifeline, not a trap

Monday, 14 April 2014

Work Test Whistleblower: Fitness For Work: The Medical Aspects

A major source of confusion with the WCA is whether it is an attempt to
gauge readiness for employment or a measure of a person's disability.
Outwardly it purports to be the former, but scratch the surface and
underneath you'll find a plain old eligibility test for social security
benefits, based on the level of disability. And having actually carried out hundreds of WCAs myself, I don't really buy the "looking at what you can
do, not what you can't do" mantra either. It's obvious WCAs actually
focus on what a person struggles with, hence the scoring system that
awards points for functional problems, not their absence.

Work Test Whistleblower: Fitness For Work: The Medical Aspects

Join the Vote

In order to be able to vote you need to be registered on the
electoral roll.
It’s simple to do, yet lots of people aren’t registered.
In the UK 6.5 million people who could vote aren’t registered, and for
some groups, such as young people, over 50% aren't registered.




Join the Vote is a week of party-neutral voter registration efforts
being organised by 38 Degrees and Bite the Ballot, along with the
support of many other organisations.



On 26th April, volunteers across the country will take to the streets and pop a registration form through the letterboxes of their neighbours.

The deadline to sign up to volunteer is 17th April. You will be put in touch with other volunteers in your area and you’ll be able to choose the streets you want to cover. Once you’ve signed up, you’ll be sent a pack that contains everything you need - registration forms, letters explaining what Join the Vote is, and a guide that will make it really easy to talk to your neighbours about voting in this European Election.

You can also sign up to lead your local team and help coordinate volunteers near you. [1]



Join the Vote



[1] For instance, I've signed up to coordinate BH25 postcode area

Sunday, 13 April 2014

From food banks to property bubbles – the moral decay that blights Britain

The division between work and unemployment is no longer clear either. Is
someone sitting in a bedsit waiting for the Queen or some other
cheapskate racketeer to call, employed or unemployed? All you can
usefully say is, for the millions living on or near the minimum wage,
work can no longer bring them dignity and security. As Clark puts it:
"The poverty figures always used to report a cast-iron link with
unemployment; now a child officially classed as poor is almost twice as
likely to come from a working as a workless home."

From food banks to property bubbles – the moral decay that blights Britain

Work Capability Assessment faces replacement if Labour wins election

Labour’s shadow minister for disabled people, Kate Green, said she would be treating with “great seriousness” the Beyond the Barriers report by the Spartacus online campaigning network, which concluded that the WCA is “inaccurate, unreliable and invalid” – but you won’t have heard anything about that on the TV or radio, or read it in the papers either.

Work Capability Assessment faces replacement if Labour wins election

What We Learned This Week (weekly)

Posted from Diigo. The rest of my favorite links are here.

Friday, 11 April 2014

Savella is Another Gasoline Additive

A gasoline additive poured into an empty gasoline tank
doesn’t help much, if at all. A SRNI drug given to someone with little
to no serotonin or norepinephrine to re-uptake doesn’t do much- results
are usually short-lived and disappointing.


Savella is Another Gasoline Additive

I take my hat off to Iain Duncan Smith. Only he could turn a disability crisis into a fiasco

We no longer discuss whether Iain Duncan Smith's reforms will succeed or
fail. We no longer need thinktanks and charities to produce reports on
what might happen if you attempt to reform every strand of the social
security system at once, without taking any advice at all from people
who actually live with illnesses or disabilities, and at a time when
money is short and compassion shorter.

The chaos at the Department for Work and Pensions is now so widespread,
so universal, that we can only report daily on each new disaster.

I take my hat off to Iain Duncan Smith. Only he could turn a disability crisis into a fiasco

Work Test Whistleblower: The PIP Tsunami Is About To Engulf The DWP

If you heard the testimony to the Work and Pensions Select Committee
last week - when Mind, Scope and other charities went round the buoy for
the nth time over the flaws in the WCA - you'll realise how dozy
our law-makers can be. So although it's still taken them a year, it's
significant that the folk in the
Westminster bubble have already noticed that, on PIP, the tide has
suddenly and
dramatically gone out.

Work Test Whistleblower: The PIP Tsunami Is About To Engulf The DWP

The 'Best Exercise' For Chronic Fatigue Syndrome and Fibromyalgia

While many forms of exercise are not possible for people with ME/CFS, qigong is slow, gentle and integrative. Even just a few minutes of practice can trigger the relaxation response and lower stress levels. Many gongs focus on strengthening the kidneys/adrenals and since ME/CFS is usually accompanied by adrenal exhaustion this is very important. Practices to increase digestive ‘fire’ can also be extremely helpful.

The ‘Best Exercise’ For Chronic Fatigue Syndrome and Fibromyalgia: Laurie Hope on Qigong

Personal independence payments are a punishment of the poor and ill

She calls it: "Heartbreaking, truly astonishing, I've never seen anything like this." Emma Cross is a senior Macmillan Cancer Support benefits adviser, and she says delays in Iain Duncan Smith's new personal independence payments (PIP) leave the sick utterly destitute. "Does anyone know how many people are struggling?"

Personal independence payments are a punishment of the poor and ill

Work Test Whistleblower: What Is The DWP Hiding?

The point Sheila Gilmore made in Parliament was a sound one: the DWP cannot just rely on the rate of successful appeals to gauge the accuracy of the WCA.

We know that an appreciable number of Atos recommendations are ignored by the DWP; in addition, an unknown number are reversed under the radar at the subsequent Reconsideration stage; and more still are overturned later by tribunals.

This is why the DWP is being coy. The figures will no doubt show that in practice the core WCA has been a poor measure of work capability for years. And they know it - or they would, if they bothered to look.

Work Test Whistleblower: What Is The DWP Hiding?

Wednesday, 9 April 2014

Disabled researchers propose alternatives to failed job tests

A report published today (9 April) aims to kickstart a significant new debate about the failure of sickness and disability support in the UK, why and what must be done to improve it, and how current systems should be re-designed so that all members of society can achieve their goals and aspirations.

The report, entitled Beyond the Barriers (http://www.ekklesia.co.uk/beyondbarriers), is based on the responses to five separate consultations receiving over 1,200 responses from sick and disabled people going through the ESA system (Employment and Support Allowance, previously Incapacity Benefit or IB) and the Work Programme.

Entirely researched, written and supported by disabled people, the report from the Spartacus Network - endorsed and backed by the think-tank Ekklesia and other NGOs and charities - draws on the widest
evidence considered and presented to date.

Beyond the Barriers makes constructive recommendations throughout every chapter based on evidence from both home and abroad, alongside a wide range of case studies.

It is easy to simply criticise the status quo, say the authors: but this report aims to offer a comprehensive alternative vision for sickness and disability support in the UK.

Disabled researchers propose alternatives to failed job tests

Via: Diary of a Benefit Scrounger

Tuesday, 8 April 2014

Need for food banks is caused by welfare cuts, research shows

Lambie-Mumford's new study, to be published on Wednesday, says the rise in demand for charity food is a clear signal "of the inadequacy of both social security provision and the processes by which it is delivered". The report warns that as social security safety nets become weaker, there is a danger that charity food could become an integral part of the state welfare provision, or even an replacement for formerly state-funded emergency welfare schemes.

Need for food banks is caused by welfare cuts, research shows

Bodily Distress Syndrome : a biased, dangerous supposition

Bodily Distress Syndrome (BDS) is an attempt by psychiatry to group patients with the physical diseases of Fibromyalgia, CFS ( and by implication ME), Hyperventilation, IBS, Non Cardiac chest pain, Pain syndrome and patients labelled as having a somatoform disorder, under one collective mental health label, exclusively upon symptoms.

Given that its underlying hypotheses is one of an abnormal stress response WITHOUT corresponding abnormalities in specific peripheral organ systems, BDS places an emphasis on bodily distress with apparent 'increased sensitivity to symptoms or sensations' (Fink et al 2007).

According to an NHS pilot BDS scheme in Barnet, the illnesses above, specifically including Myalgic encephalomyelitis ( ME), are treated through a  "Cycle of Change", based on behaviour modification, leading to recovery. Considering that the NHS itself states that there is no cure for "CFS" ( in which it includes Myalgic encephalomyelitis), that is an astounding claim for to make.

Bodily Distress Syndrome : a biased, dangerous supposition

Monday, 7 April 2014

Face-To-Face ‘Fit For Work’ Interviews Could Be Scrapped

Humiliating and demoralising face-to-face ‘fit for work’ assessment interviews, known as the Work Capability Assessment (WCA), could be scrapped following a report by experts which blamed the controversial tests for delays in processing benefit claims. It is understood that the Department for Work and Pensions is exploring the possibility of replacing the WCA with a streamlined system, based upon written medical evidence acquired from claimants, their GP’s and consultants.

Face-To-Face ‘Fit For Work’ Interviews Could Be Scrapped

Neuroinflammation in Chronic Fatigue Syndrome: Direct Evidence at Last

Researchers concluded that widespread inflammation of the brain is a
feature of ME/CFS and is associated with the severity of certain
symptoms. They say this work is essential for understanding the
pathology of the condition as well as for developing better diagnostic
criteria and treatments.

Neuroinflammation in Chronic Fatigue Syndrome: Direct Evidence at Last

Sunday, 6 April 2014

What We Learned This Week (weekly)

Posted from Diigo. The rest of my favorite links are here.

Saturday, 5 April 2014

The poverty of responsibility and the politics of blame – part 2



Social security came about precisely because we evolved to recognise a need for a social safety net to protect vulnerable citizens, because we learned last century that we are all potentially vulnerable, and that it isn’t anything to do with a person’s characteristics, they are not to blame for socio-economic circumstances, or becoming ill and disabled. Unemployment, accident and illness can happen to anyone.

The poverty of responsibility and the politics of blame – part 2

Key points from Professor Anthony Komaroff’s Highlights of the IACFSME 2014 Conference

Given the significance of what was presented at these two conferences, it is imperative that the researchers themselves effectively disseminate their findings to the broader medical community and do not rely on the media or medical press to do so, especially in the UK, where the Science Media Centre -- of which Professor Sir Simon Wessely is a founder member -- tightly controls what appears in the UK media about medical and scientific issues, in particular, about ME/CFS.

Key points from Professor Anthony Komaroff’s Highlights of the IACFSME 2014 Conference

In Brief: The Adrenal Glands and ME

The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point …

In Brief: The Adrenal Glands and ME

The Fallacy of Narrow Views on Fibromyalgia & Chronic Fatigue Syndrome

For the time being, though, we need to understand that the labels "fibromyalgia" and "chronic fatigue syndrome" apply to broad groups of people with widely divergent experiences. It really bothers me when people refuse to accept that and end up spreading misinformation. It's even worse when they're passing judgment on others.

The Fallacy of Narrow Views on Fibromyalgia & Chronic Fatigue Syndrome

Thursday, 3 April 2014

Cabinet minister’s expense abuse is 105 times average benefits fraud



Scrapbook has previously highlighted the hypocritical gulf between the ‘scroungers’ hate language encouraged by the government against benefits claimants and expenses overclaims by MPs themselves. While the vast majority of claimants are law abiding, the £1.2bn cost of fraud averages out at £55 across 22 million claimants. Contrast this with the £1.2m paid back from the Commons — an average of £1,858 per MP.


Miller’s case is compounded by her previous role as DWP minister for disabled people, where she ignored calls to address “outrageous and outlandish comments” from her senior colleagues — despite strong evidence that rhetoric on fraud and scroungers was leading to hate crime against disabled people.

Cabinet minister’s expense abuse is 105 times average benefits fraud

Wednesday, 2 April 2014

Detectives hunt hit and run mobility scooter driver


Not for us feral teenagers, here in New Milton we get ferocious pensioners:
It is the second time in recent months that a mobility scooter has injured a pedestrian in Hampshire.

Susan Daniels was left with a fractured knee and a ruptured tendon in her left arm after an 88-year-old man crashed into her in Station Road, New Milton.

The 69-year-old now finds it difficult to get around due to her injuries, and she called for the law to be changed to stop people buying scooters without tax or insurance.

The headline is almost comical, but all joking aside, it certainly would be beneficial to impose some sort of proficiency test with these things. Or an attitude test might be better!

Navigating Station Road in New Milton is like undergoing some sort of military training in trying to avoid the onslaught of oldies, either those on mobility scooters, or the hoards who use the shopping trolley walkers like snow ploughs to barge their way wherever they wish.

Both examples of this species suffer from the same delusion: that they have some RIGHT beyond that of all other mere mortals to traverse the pavements around town and, because they are old and infirm, that includes the right not to have to deviate nor give way to anyone else under any circumstances.

If you should happen to come face to face with one, they will glare menacingly, while ploughing directly on. If you don't quickly move out of their way, they seem to consider you "fair game."

And if, like me, you are mobility imparied also, but haven't yet joined the ranks of these mobility tank drivers, then heaven help you if you can't move out of their way fast enough!

Detectives hunt hit and run mobility scooter driver (From Daily Echo)

Neuroinflammation is present in widespread brain areas in CFS/ME patients

Neuroinflammation is present in widespread brain areas in CFS/ME patients and was associated with the severity of neuropsychologic symptoms. Evaluation of neuroinflammation in CFS/ME patients may be essential for understanding the core pathophysiology and for developing objective diagnostic criteria and effective medical treatments.

Neuroinflammation is present in widespread brain areas in CFS/ME patients

A million people were sanctioned and deprived of benefit in the last year

The scandal of wrongly sanctioning people and depriving them of all benefit for either 4 weeks, 13 weeks or (almost unbelievably) 156 weeks for trivial, ill-considered or utterly unjustified reasons is too little understood by the general public.

A million people were sanctioned and deprived of benefit in the last year

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