The DWP’s Universal Credit was just saved by Philip Alston

The Department for Work and Pensions (DWP) got somewhat of a gift on Wednesday 22 May. It came in the form of a UN report by Philip Alston. And while much of the media has focused on his scathing criticism of successive UK governments, it missed the most important point. It was that Alston effectively gave the DWP a ‘get out of jail free’ card over Universal Credit.

The DWP and the UN

If you are reading this and don’t know much about the controversial new benefit, then you can read The Canary‘s excellent coverage here. In short, Universal Credit rolls six previous welfare payments into one. But controversy has marred it – from increased food bank use to homelessness. Now, and for the fifth time, the UN has got involved.

Alston is a UN special rapporteur on extreme poverty. He visited the UK in November 2018 on a fact-finding mission. His aim was to see how successive governments’ austerity programme, welfare cuts and Universal Credit had affected people. And on 22 May he released his analysis.

You can read it in full below:

UK Alston Poverty Report Final

As the The Canary‘s James Wright reported, much of Alston’s report was damning. He said that:

14 million people living in poverty, record levels of hunger and homelessness, falling life expectancy for some groups, ever fewer community services, and greatly reduced policing, while access to the courts for lower-income groups has been dramatically rolled back by cuts to legal aid.

He also noted [pdf, p5]:

It might seem to some observers that the Department of Work and Pensions has been tasked with designing a digital and sanitized version of the nineteenth century workhouse, made infamous by Charles Dickens…

But Alston also focused on Universal Credit.

“Universal Discredit”

He talked [pdf, p11-14] about the benefit’s “shortcomings”, including:

  • Food bank use increasing where the DWP has rolled it out.
  • Government treating claimants like “guinea pigs” with its “test and learn” approach.
  • Ministers dismissing his concerns.
  • The “perverse” and “catastrophic” five-week payment wait.
  • “Punitive” sanctions.
  • The flaws in Universal Credit being online only.

But he also had some praise for the benefit. He said [pdf, p11]:

Consolidating six different benefits into one makes good sense, in principle.

And he noted [pdf, p4] a:

welcome increase in work allowances, as a consequence of which an estimated 2.4 million households will be better off in 2019,10 and some 200,000 people will rise out of poverty.

But overall, he was highly critical. Problem being, that Alston merely scratched the surface of the catastrophe.

A fault in his argument

By agreeing with the benefit in principle, he fails to understand that Universal Credit is designed to be punitive, vicious and chaotic. This is not government error or failings. And it will not change.

It’s a very concerning flaw in his analysis which in some respects makes much of his other commentary redundant. Here’s why I think that.

A potted history

I would urge you to read here a potted history of Universal Credit I did for The Canary. But, in short, as I wrote:

Universal Credit was the brainchild of [Iain Duncan Smith] and his think tank [the Centre for Social Justice (CSJ)] along with some people who are, essentially, Christian fundamentalists.

 

The overriding notion behind it? That everyone who can do even the smallest bit of work, should. This would, in turn, end welfare ‘dependency’. The thinking was also to reinstall marriage as central to society. All this would herald a return to a Victorian-like era; one where charity and philanthropy support sick, disabled and poor people – not the government.

I continued by explaining that the first major report by the CSJ in 2006, for the opposition Tory Party under David Cameron, outlined that:

poverty and welfare dependency were not due to capitalism’s inequalities. But that poor people and their reliance on welfare existed due to “pathways to poverty”: “family breakdown, education failure, economic dependence, [welfare] indebtedness and addictions”. Solve these, and everyone has “the chance to climb the ladder”, as the report put it

 

Central to this was ‘dynamic modelling’, the idea of creating a system that changed people’s behaviour to get them into work (see Kitty Jones’s excellent work on “nudge theory”). Essentially, this meant cutting people’s money so they had no choice but to get a job. Or, in the case of in-work benefits like tax credits, cutting them as people started earning more.

A digital workhouse

We’re back to Alston’s “digital and sanitized” 19th century workhouse analogy again. That is, Universal Credit is the digital equivalent of a workhouse. It will push all the people who were of no use to the system (that is, had little monetary value) under one roof: severely disabled, sick and chronically ill people, those living with mental health issues, single mothers and the ‘work-shy’. All housed in a virtual workhouse. Segregated from the rest of society. A truly dystopian nightmare.

Propaganda overdrive

Meanwhile, and as if by magic, to coincide with Alston’s report release the DWP launched it’s heaviest propaganda offensive yet: a massive splash in the Metro:

Of course it’s not magic. It’s part of an ongoing campaign by the DWP to sell its most draconian policy as something positive. Campaigners have been vigorously opposing Universal Credit for a while, now. But if you believe YouGov polling, neither the DWP nor activists are shifting public opinion on the benefit.

Public confusion

The pollster reported in October 2018 that public opinion over Universal Credit was divided:

Universal credit charts-01.png

The confusion and working class division over Universal Credit is evident on our estate.

On the one hand, we have a friend who works in the gig economy and is struggling with the tapering of the earnings floor under the benefit.

Then we have another friend, a single parent of three, who thinks Universal Credit is a great idea. Despite still using food banks they are all for it.

Failing? It’s intentional.

Alston said in his report that with Universal Credit, successive governments were guilty of:

failing to properly design a system that is meant to guarantee the social security of so many…

On the contrary. Successive governments and the unelected civil servants have designed Universal Credit perfectly. And its roll out is going pretty well to plan.

It was always meant to be chaotic. The more confusion and difficulty experienced by claimants, the more potential claimants would be put off applying for it. It’s the same notion of poor prison conditions being used as a ‘deterrent’ to put people off committing crime.

So, the worse Universal Credit is, the more people will fall off the edges of society or get any work they can. It will leave those in the greatest of need reliant on it, stuck in this virtual workhouse.

Half-baked analysis. Game over?

Alston has done nothing to hasten the benefit’s demise. In fact, all he’s done is given the government and DWP ammunition to tinker a bit more around the edges if they want to. His report comes in a long line of UN reports and a Human Rights Watch one just this week. All were scathing but in reality all were useless.

His half-baked analysis and ironic tinkering around the edges (which Alston criticised the UK government for doing) is of no help to the millions of people suffering in the UK. It will be forgotten in a matter of weeks. And the barbaric roll out of the dystopian Universal Credit will continue.

It is again down to activists to spread the word in their communities, apply pressure on political parties and ultimately do everything they can to bring about the demise of this wicked, nightmarish horror.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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At #PMQs Theresa May threw millions of disabled people under a bus

A question from a Labour MP at Prime Minister’s Questions (PMQs) on Wednesday 8 May gave Theresa May the chance to throw millions of disabled people under a bus. But it also exposed an under-reported catastrophe for potentially hundreds of thousands of chronically ill people.

An “isolated case”?

Labour MP Sandy Martin raised the issue of a disabled constituent with a disabled child who had their benefits stopped. The mother lived with myalgic encephalomyelitis (ME) and fibromyalgia, and her child had hypermobility, therefore possibly a connective tissue disorder.

Listen to Martin’s question and May’s response below:

 

 

Martin took to Twitter to imply May thought his constituent’s case was “isolated”:

The PM may well indeed have implied Martin’s constituent’s case was ‘isolated’. But the reality in the UK for people living with ME, fibromyalgia and hypermobility/connective tissue disorders is very different.

A chronic epidemic?

Here are details about ME, fibromyalgia and connective tissue disorders. But all come with symptoms of generalised pain, chronic fatigue and cognitive impairment. All can be debilitating in many cases, leaving some people house or bed bound. And all are poorly misunderstood by medical professionals, government agencies and society.

Estimates put the number of people living with fibromyalgia between 1.5-2 million; the number of people living with ME at 250,000, and there are no estimates for the number of people living with connective tissue/hypermobility-related illnesses – although the Ehlers-Danlos syndromes (EDS), for example, are thought to affect 1 in every 5,000 people. So that’s around 13,000 individuals in the UK.

So, let’s use a ballpark figure of around two million people in the UK that live with either fibromyalgia, ME or connective tissue disorders. It’s probably an underestimate.

Just how many of these people does the Department for Work and Pensions (DWP) give benefits to?

The official figures show…

Based on my own analysis of the DWP’s data website Stat-Xplore the most recent figures show:

  • 15,936 people with chronic fatigue syndrome (CFS) got Personal Independence Payment (PIP). The DWP uses the term CFS, not ME.
  • 73,560 people with fibromyalgia got PIP.
  • 11,349 people with connective tissue disorders got PIP. The DWP does not include EDS specifically in its data.
  • 16,305 people with “Chronic Pain syndromes” (which would cover CFS and fibromyalgia) got Disability Living Allowance (DLA).
  • 91,164 people with “Diseases of the Muscles, Bones and Joints” (which would cover connective tissue disorders) got DLA.
  • 270,636 people with “Diseases of the Musculoskeletal System and Connective Tissue” (which would cover all of the above) got some form of Employment and Support Allowance (ESA).

That equates to the DWP giving benefits to just under 500,000 people with ME, fibromyalgia and connective tissue disorders – out of around two million people. Except it’s a gross over-estimate, as many more illnesses are grouped into some of the categories.

You can view the data I used here, here, here and here.

It should be noted that these figures are for claimant’s main reported disability. So there may be some people who get benefits with another condition aside from ME, fibromyalgia or a connective tissue disorder. But the figures still raise some worrying questions.

Shocking abandonment?

What we do know is that out of at least 250,000 people living with ME, the DWP gave PIP/DLA, the main disability benefits, to under 30,000 of them when it was their main disability. That’s just 12% of people living with this debilitating disease. To me, this doesn’t sound right.

It’s even more damning when we know that between 35,000 and 70,000 people in the UK have “severe” or “very severe” ME. This often leaves people bed-bound day in, day out. But it appears the DWP does not even give all of these people benefits.

Of fibromyalgia, possibly 80,000 people at best got PIP/DLA for it – out of 1.5-2 million people, or 4-6%.

We don’t know how many people with EDS get benefits, as the DWP doesn’t bother to even recognise it as a separate medical condition.

For ESA, if you put my ballpark two million figure of people in the UK living with ME, fibromyalgia and connective tissue disorders into the DWP’s figure, it would mean that only 13% of these people got benefits for these conditions. It seems unfathomable to think that this is correct.

Rejected. Refused. Millions missing.

So, Prime Minister, was Martin’s example isolated?

Your government’s own figures would suggest otherwise. It’s impossible to imagine how many people living with ME, fibromyalgia and connective tissue disorders do not get the benefits they are entitled to.

The ME Association reported in 2010 that:

our experience as a support charity is that people with ME/CFS have a great deal of difficulty in obtaining sickness and disability benefits when benefit applications are first assessed, or are later re-assessed – even when they are fully supported by their GP or consultant.

Although initial claims are often rejected, there is a high rate of success (around 40%) on appeal – indicating that eligibility criteria and medical assessment procedures are poorly designed for people with this illness…

The refusal rate (for ESA) here is probably even higher than 75%…

It seems that very little has changed. But May probably doesn’t see the irony that, during ME Action Network’s #MillionsMissing campaign week, she effectively ignored the hundreds of thousands of chronically ill people missing from the welfare system. She may as well have thrown them under the nearest bus.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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The propaganda war on chronically ill and disabled people just went up a gear

Another week and the media dropped another heavy dose of propaganda against chronically ill and disabled people. Nothing new under the sun, I hear you cry. Except there is. Because this time it shows a clear, coordinated pattern emerging in this ongoing smearing of a whole community.

Groundbreaking research?

On Monday 29 April Stanford University in the US published new research into myalgic encephalomyelitis (ME).

As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

 

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.

 

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here and there’s also plenty of content on this website.

This is not a medical article, so I won’t go into the details of Stanford’s research – you can read about that here and here. But in short it could pave the way for a proper “marker” for ME – that is, proof the disease exists.

And when compared to current UK mainstream medical thinking, it is infinitely better.

PACE trial

Currently, the NHS’ approved treatment is based on the so-called “PACE trial”. Again, as I previously wrote for The Canary, the trial:

was a study into treatment for people living with ME. Its results claim that people living with ME can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).

 

The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.

 

In the UK, CBT and GET are still the NHS’s approved treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this. But this has proved controversial. Because as ME Action UK reported, among the people sitting on the review committee are a co-author of the PACE Trial and other contentious medical professionals.

You can read my full body of work for The Canary on PACE trial here and on this website.

So, Stanford’s research, potentially showing that ME is a disease to which endless amounts of CBT and GET would be ineffective, is important. So important that a lot of the media reported on it. But three outlets in particular made a point of pouring as much scorn on the research as possible.

Pouring scorn…?

Reuters, the Sun and the Telegraph among others all covered the story. I note these three outlets specifically because each of their articles all had several common denominators. All of these point to the story coming, in part, from one source.

All quoted psychiatrist, president of the Royal Society of Medicine and government adviser Sir Simon Wessely. He was also involved in PACE trial and is an advocate of CBT and GET.

They all used parts, or all of, the same quote from him; that is:

There have been many previous attempts to find a specific biomarker for CFS. The problem is not differentiating patients with CFS from healthy controls. The issue is can any biomarker distinguish CFS patients from those with other fatiguing illnesses?

 

And second, is it measuring the cause, and not the consequence, of illness? This study does not provide any evidence that either has finally been achieved.

Both the Sun and the Telegraph quoted other medical ‘experts’ as well as Wessely. Reuters just used him alone, saying his quote came from an “emailed comment”.

All were published within three minutes of each other at around 8pm BST.

And they all went with calling the disease “chronic fatigue syndrome” and “CFS” first, ME second.

So, why were there many similarities in the stories? Because the source for them all was the same. It was the industry PR agency the Science Media Centre (SMC).

A coordinated smear…?

For example, the writers of the articles lifted all the ‘expert’ comments from Wessely and others directly from a press release by the SMC. Of note is that both Reuters and the Telegraph gave only negative comments from the SMC press release.

The Sun, by all accounts, almost gave the game away as to where the comments had come from by including a positive one from the SMC press release. Whoops!

It also leads with “chronic fatigue syndrome” and “CFS” first, and ME second. That, in my opinion, is a now standard tactic to lessen ME as a debilitating disease and keep it in the realms of the psychosomatic in the mind of the public. CFS already has social connotations – ‘Yuppie Flu’, for example.

The fact all three articles went out at 8pm, bar Reuters at 8:03pm, is another giveaway. The website PNAS published the research at 8pm UK time, with Stanford University tweeting its press release at 8:11pm.

That’s quite a remarkable turnaround time for Reuters, the Sun and the Telegraph to analyse complex research, get comments from ‘leading’ UK ‘experts’ and publish – all in a matter of seconds.

Except of course they didn’t do that.

The MSM/SMC strikes again!

The SMC would have had pre-release access to the Stanford paper. It would have gathered the quotes, sent those along with its analysis of the research to its contacts at every major media outlet, and waited for the ball to get rolling.

Stanford’s research was probably embargoed (that is, not allowed to be published until a certain hour) until 8pm UK time. Although I know for a fact PNAS accidentally published it earlier, at around 10:30am – and then promptly withdrew it. Accident or interesting? I’ll leave that up to you to decide.

So, as soon as that embargo lifted, Reuters, the Sun and the Telegraph had their complete pre-scripted articles ready to go.

I deal with embargoed press releases, research and announcements week in, week out. I know how this rolls. And it rolls exactly as above.

But here’s the thing. We’ve been here before with the SMC and ME.

The merry-go-round continues

Just last month, I wrote extensively about how the SMC was coordinating a media campaign in support of PACE trial author Professor Michael Sharpe and the trial, and against people living with ME, their advocates and campaigners.

Central to this was Reuters‘ Kate Kelland (author of the latest Stanford article, too), who has a history of publishing “seeded” stories for the SMC – from GMO crops to fracking. Meanwhile, it effectively admitted [pdf, p4] to such, and also that it would support professionals like Sharpe if they were under attack.

And so, with Stanford University publishing new positive research, the media merry-go-round continued. If you ask me, it has less to do with people living with ME and more to do with UK regulator NICE currently reviewing treatment guidelines for the disease. PACE trial has to be maintained, so best get the smears in against people who disagree with it quickly – in case people start believing them!

But why does this matter? This is how the media works, after all.

It matters because the SMC and its advocates are pushing a damaging, junk science and political agenda.

Political agendas

It’s one which is abusive and harmful to patients. It is also one which has no basis in scientific fact.

But it has plenty of basis in furthering the careers of its proponents, propping up the plans of big government and big corporations, forcing sick and disabled people into work and ultimately creating a world where we’re all reliant on popping pills and seeing shrinks – as opposed to actually being healthy or being given proper treatment if we’re not.

And our irresponsible, servile media plays a major part in keeping this agenda going; as it does with everything that’s in the interests of the powerful but damaging to the rest of us.

Meanwhile, with #MEAwarenessWeek and #MillionsMissing events fast approaching and the ongoing #MAIMES campaign looking promising, expect the media circus to continue.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly a dozen other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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Happy Easter. Unless you’re living with ME.

Chocolate eggs? No. A roast dinner with the whole family around the table? No. Binge-watching movies on the sofa? No. Going out drinking and partying? No.

Happy Easter for many of you, I’m sure. But not if you’re living with an illness that’s ‘all in your head’.

Myalgic encephalomyelitis

As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here.

Nicola’s story

As I’ve previously written, my girlfriend Nicola Jeffery lives with ME, along with a host (now ten in total, as it happens) of other conditions, diseases and illnesses:

She is also now under clinical investigation for:

• Hypothyroidism.
Sheehan’s Syndrome [pdf].
Hypochlorhydria.
Chronotropic Intolerance.

I’ve written extensively about her story to this point. You can read that work here.

So, what does our Easter look like? Probably a world away from many people’s. But also very similar to Easter for millions of chronically ill people.

Just another week in the Jeffery-Topple household

Around 5am on Wednesday 17 April Nic started vomiting. This was followed by diarrhoea. This continued until around 2:30am on Thursday. For the rest of the day she fell in and out of sleep. It’s now Friday 19 April at 1:30pm and she’s eating something for the first time since Tuesday. But only half managed it and has gone back to bed.

Her blood pressure fell to 78/33 at one point, which is worryingly low. During this time she also had three suspected focal seizures. I say “suspected” because no medical professional is able to explain what they are, except they present like them. No tonic clonic this time, though. So we’re grateful for small mercies.

“Why didn’t you call an ambulance?” I hear you scream down your devices.

For numerous reasons. Not least because this bout of unexplained sickness has happened countless times before. But also because we know that a hospital would do little that we weren’t doing at home. In fact, they may in the long term have made the situation worse. If you’re wondering why I think that, check out the reasons why we’ve switched to a paleo-keto diet. All will be revealed. Plus the likelihood of mental health being brought into the equation. Our glorious NHS, hey…?

We’re now weaning her back onto food, and will start reintroducing the 17 different tablets/oral/intravenous solutions she’s on a day, in time.

So, Easter has gone out of the window for us. But for Nic, and millions of people like her, it was never actually in the window in the first place.

Sunday roast? No chance.

If you’re non-disabled, you probably relish the thought of a huge Sunday roast with all the family. If you’re living with ME this could be your worst nightmare.

Maybe explain to people why you can’t eat half the food on your plate due to your socially damaging, highly restrictive diet.

Try eating all that when you have impaired digestive transit. Or if you’re struggling to swallow. Maybe if you have hypersensitivity to taste.

Also, try eating all of that while numerous people talk around a table and you’re hypersensitive to sound. Then try it when your cognitive function is so impaired you can barely follow one person in conversation, let alone a whole group of people.

This, of course, all presumes your family hasn’t effectively disowned you because they think your illness is ‘all in your head’ and you just need to ‘pull yourself together’.

Enjoy your lamb.

Easter eggs? Jokes.

If you’re non-disabled, the best part of Easter may be chocolate eggs. If you’re living with ME, they could be torturous for you.

Histamine intolerance may mean you can’t even eat chocolate. Mast cell activation syndrome could mean it will trigger an allergic reaction in you. And if you’re on a socially damaging, highly restrictive diet, we’re back to the sugar problem again.

Meanwhile, you have to have the strength in your hands to remove the foil wrapping and then break the chocolate in the first place.

All that of course assumes that you even have the money to buy Easter eggs. Try getting the Department for Work and Pensions (DWP) to give you benefits when your condition is still considered part-psychological by much of the medical community.

Hope you have a good sugar rush.

Binge TV? Out of the question.

If you’re non-disabled, you many plot yourself on the sofa and watch endless movies for much of the weekend. If you’re living with ME, this could be near-impossible.

Try being in any other position except lying down for a long period of time when every part of your body aches, you feel like your walking under water and you have a constant fog of light headedness.

Maybe try and sustain your concentration for more than just the news when your cognitive function is so impaired you can’t remember what the weather is going to be like from one day to the next.

Then have a go at enjoying a film when the slightest laugh, scream or groan from people feels like the noise of a high speed train right next to you. And throw in the noise of the television and the strain on your eyes for good measure.

I do hope you have fun watching your Hollywood brain-bleach.

Get ready to party? Not here.

If you’re non-disabled, you may go out over Easter to the pub or a club. Or, like me and Nic were, put on the guest list for a concert by a rapper like Lowkey. If you’re non-disabled, this would be impossible.

Attempt to get showered and dressed when your body is so weak that even going to the toilet exhausts you for hours afterwards. Try putting your make up on when your hand to eye coordination is screwed. Not that you’d be able to sustain the holding up of your arms for that long, anyway.

Try drinking alcohol when you know it will leave you even more bed-bound than you were already. Oh, and try affording alcohol under the DWP.

Maybe you’d like to go to a venue where there are going to be hundreds or thousands of other people, exposing you to their germs, which could make you seriously ill. Hundreds or thousands of people all ready to brush past you or bump into you, but in doing so leaving you in agony.

Or try dealing with the same issues you had eating your Sunday roast with a small group of people all in intense conversation – but multiply it by hundreds and throw in extremely loud music for good measure.

Oh, and try all of this when you can’t use public transport due to the infection risk, the danger of physical damage and the lack of accessibility for chronically, invisibly ill people. And if you want to try and get a taxi to and from where you’re going to, we’re back to the DWP issue again.

I hope your hangover is worth it.

Happy Easter.

Ultimately, try doing all of these things when you constantly feel like you have the flu, never have any energy nor have the cognitive function to decide whether to even do them or not.

Then try doing them when much of the medical profession and state systems disbelieve you, leaving you with no support except other people in exactly the same boat. Even friends and family will only tolerate your inconsistency, the consuming nature of your disease and your inability to do what most people consider ‘normal’ for so long. Gradually, knocks don’t appear at the door. The phone slowly stops ringing. Messages are left unreplied to.

And ultimately, trying doing all of this with the overwhelming feelings of guilt your disease leaves you with.

So, no. There is no Happy Easter for millions of chronically ill, disabled and sick people. There’s just another long weekend, spent fighting not only their own bodies but also a system and society that’s not designed for them to fit in to. Let alone live in.

I’ve given up writing full time to support Nic. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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Hi vis vests? Sunflower badges? Next, disabled people will have to wear black triangles.

Two stories caught my attention on Saturday 6 April. Both may seem unremarkable to many. But each demonstrate a slippery slope we’re heading down. The bottom of it is one we cannot let ourselves get to.

You! Yes, YOU! You with the sunflower badge!

One story is that of the autistic boy whose teachers allegedly made wear a hi-vis vest during break times so they could identify him. I’m not going to put too much emphasis on this, as I don’t consider autism an impairment. But the teacher’s thinking behind doing this to him shows, at best, they do. At worst, it shows extreme incompetence, conscious/subconscious prejudice and quite frankly steaming ignorance.

A more telling story is that of Heathrow and Gatwick airports providing passengers living with “hidden disabilities” sunflower lanyards, or neck badges, so staff can identify them.

Look at this happy family about to jet off on their holidays! They must be thrilled knowing that staff will flag the fact they are disabled! Thank God for those lanyards! Yes?

hidden-disability-access-day-756x350.jpg

In my opinion? No, this is not a cause for celebration or a leap forward for disability rights. What these two airports are doing is effectively glossing over the fact that their companies, staff and society more broadly still live with entrenched discrimination, ignorance and prejudice towards disabled people.

A social model

The Social Model of Disability is widely used by campaign groups, political parties and academics as a blueprint for how society should function for disabled people. Essentially, the thrust is that it’s not people’s impairments that make them disabled. It’s society, its systems and structures that do. Solve these, and there’ll be no such thing as disabled people. Because we’ll all be equal.

Utopian I know. But why shouldn’t we be fighting for a society where everyone is equal? To this end, this is the problem with any badge, clothing or trinket that the system puts on disabled people to mark them as ‘special’.

In doing so, it is already singling them out has somehow different to other people. It’s like branding them with a hot iron, showing that these people need more from society than everyone else. Or, as one Twitter user put it about the autistic boy with the hi-vis vest:

Misguided praise

I know many people have welcomed airports’ sunflower badge move. But I’m afraid it’s misguided. All you’re doing is giving your blessing to society and the system continuing to treat you differently. It may seem like a solution to the challenges you face. But it’s not. It is playing into a wider agenda of society leaving disabled people with a few crumbs off the dinner table. You should expect better, and must.

In the case of the airports, why are we tolerating travel that isn’t fully accessible and inclusive for everyone in the first place? Why are we putting up with companies not training their staff adequately on the support needs of all their passengers? And why are we rolling over and accepting that a plastic badge with a flower on it will do? Even with the nuance of it being a short term fix?

The degradation of society

But moreover, we have a political system that’s becoming more and more polarised by the day. The far right is on the rise across the world. Disability hate crime rose by 50% in one year in the UK. The medical profession still discriminates against sick and chronically ill people.

The UN said the UK government and media “have some responsibility” for society seeing disabled people as “parasites, living on social benefits… and [living on] the taxes of other people”. And it said these “very, very dangerous” attitudes could “lead to violence… and if not, to killings and euthanasia”.

In 2016 a learning disabled man was lynched in England.

So, you think branding yourselves as ‘different’ is a progressive move?

A warning from history

History taught us what happens when a political system and its ideology intentionally marks people out as different. As libcom noted about the Nazis:

The Black Triangle badge was for prisoners who were deemed to be Antisocial, the official name was ‘Arbeitsscheu’ which literally translates as work-shy. But long term unemployment wasn’t the only criteria for imprisonment, you could also be declared ‘Arbeitsscheu’ for refusing or being found unfit for compulsory labour such as digging trenches for the Autobahns or working in armaments factories. You could also be branded with the triangle if you were suspected of being of poor moral character, common targets for the anti-social category included the homeless, alcoholics, drug users and sex workers.

 

Victims also included the Roma and people with behavioural abnormalities and disabilities that were deemed not serious enough to warrant euthanasia were also rounded up

“Work-shy”. Ring any bells?

newspaper-headlines1-651x330.jpg

Viewed through the 21st century prism of an increasingly right wing and intolerant society, branding disabled people so they can be recognised as needing ‘special’ treatment doesn’t seem quite so Disney now, does it?

But yet still people accept it. Why?

It’s all political

Herein lies the problem with the chronic illness area of the disabled community. Oh, and that statement in itself will probably raise a few eyebrows. Yes. People with invisible diseases and illnesses are part of the disabled community, however much some people want to segregate them.

The problem is that too many sick and chronically ill people are failing to apply politics to the abuse, dismissal, neglect and human rights violations the system metes out to them. Myalgic encephalomyelitis (ME) is a perfect example of this.

I’ve written extensively on the PACE trial. You can read a background article I did for The Canary here. As I wrote, the trial:

was a study into treatment for people living with ME. Its results claim that people living with ME can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).

 

The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.

 

In the UK, CBT and GET are still the NHS’s approved treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this. But this has proved controversial. Because as ME Action UK reported, among the people sitting on the review committee are a co-author of the PACE Trial and other contentious medical professionals.

PACE trial subversion

In short, PACE trial was in my opinion designed for numerous reasons, not least to:

  • Deny people living with ME state welfare and private insurance payments.
  • Suppress the real causes of ME, which are probably based in virology/immunology.
  • Also suppress real treatment for ME, which probably lies outside the realms of many man-made pharmaceuticals.
  • Therefore further the bond between the corporate pharmaceutical industry and the medical profession.

But whatever the reasons for PACE trial, what we do know is that it was intentionally designed to maintain the notion that ME was, in part, ‘all in people’s heads’. And that the best treatments for it were talking therapy (‘think yourself better!’) and exercise (work harder you work-shy hypochondriacs!’). It is undoubtedly a medical scandal that firmly has its roots in our political and economic systems.

Yet many people living with ME still view it as an issue of medical negligence, and nothing more.

I understand why. When you are already struggling to get medical professionals to even acknowledge your diseases, illnesses and impairments are real, the politics of why they’re not is probably the furthest thing from your mind.

But that needs to change. Because otherwise, people living with ME, and sick and chronically ill people more broadly, will be sleep-walking into a dystopian future.

A media war

Acceptance of sunflower lanyards is part of this. But another is to do with the recent media smear campaign against people living with ME and their advocates’ objections to PACE trial.

As I wrote across three articles, in March the media, coordinated by PR organisation Science Media Centre (SMC), kicked back against people criticising PACE trial. It was an effective war, and a nasty one at that. SMC planted (or “seeded“) stories defending PACE trial and its authors. People widely condemned it, with the Times coming in for particular criticism.

Yet a few days later, both the Times and the Guardian published articles which seemed more supportive of people living with ME. The Times one [paywall] was by Dr Mark Porter, where he seemed sympathetic towards the issue. The Guardian one was by Dr Frances Ryan, where she seemed to defend people living with ME and call out the abuse they suffer.

In short, neither was really advocating for people living with ME.

Seeded platitudes

Porter’s column was as passive-aggressive as they come. While he stood up for people living with ME, he still defended PACE trial and made his dislike of the criticism of medical professionals involved in it clear, albeit doing both in a backhanded way.

Why was his column so half-baked?

I believe his article was seeded by the Times‘ editorial machinery/SMC as much as its previous ones. As a journalist, I know how the game works. And Porter’s article was a blatant attempt by the Times at presenting ‘balance’ and placating the backlash it had received.

Controlled opposition

Ryan’s column, widely welcomed by the ME community, was little better. As a journalist, I know what to do when you want to write an article that won’t bring any controversy to your door. You paint the criticisms of your subject matter as other people’s views. As Ryan wrote:

The trial has since been criticised as “not robust” by scientists, while some patients reported that their conditions actually deteriorated after taking on the exercise. Crucially, many people with ME believe this research, and the media’s ongoing coverage of it has added fuel to the belief that their illness is not real…

It’s not Ryan or the Guardian saying it. It’s other people. She’s just reporting it. ‘PACE trial’ failed to get even a single mention by name in the article. Nor does the piece give reasons why people are criticising it. So, why – when it’s the central concept to the whole story?

Except it wasn’t. Ryan used PACE trial and people living with ME as a hook to discuss abuse towards disabled people more broadly. A subject matter not to be dismissed and she makes some excellent points. But as an article, it did nothing to further society’s understanding of ME and why PACE trial is crucial in all this. Yet it may as well have been hailed as a revolution by some people.

Again, why was it so half-baked?

Unconscious bias?

I don’t believe opinion writers like Ryan and left wing commentator Owen Jones are told what to write. I believe they are moulded by the systems around them to know not what to write.

As press analysis organisation Media Lens noted about how mainstream journalists end up being “synchronised metronomes churning out propaganda” (quoting someone else):

‘In the early stage, you’re a young crusader and you write an exposé story about the powers that be, and you bring it to your editor and the editor says: “No, kill it. We can’t touch that. Too hot.”

 

‘Stage two: You get an idea for the story, but you don’t write it and you check with the editor first and he says: “No, won’t fly. No, I think the old man won’t like it. Don’t do that, he has a lot of friends in there and that might get messy.”

 

‘Stage three: You get an idea for the story and you yourself dismiss it as silly.

 

‘Stage four: You no longer get the idea for that kind of an exposé story.

 

‘And I would add a stage five: You then appear on panels, with media critics like me, and you get very angry and indignant when we say that there are biases in the media and you’re not as free and independent as you think.’

Essentially, journalists and writers unconsciously self-edit after they’ve been playing the game long enough. It becomes natural to them to omit certain points, or phrase things a certain way, just to avoid any editorial hassle.

I believe this is the position Ryan finds herself in. She knows that if she goes too deep into PACE trial it won’t get published and if she makes accusations it will just be edited anyway. So she does neither, putting herself firmly on the fence. Oh, and keeping her job and position in all this to boot.

Why is this relevant to the sunflower lanyards?

Because it’s all one in the same thing.

Rules of engagement

In the same way the lanyards are actually grossly unhelpful (and dangerous) for sick and chronically ill people in the long-term, so are cleverly worded but ultimately half-baked, ‘safe’ and insipid articles in the Guardian.

Both add to the political dumbing down of ME. And in the long term, if we continue to accept these crumbs from the table, eventually they’ll be no bread left.

If you support UK Labour Party leader Jeremy Corbyn, you’ll know there’s researched evidence of the media bias against him. For the sake of balance, if you’re a UKIP supporter you’ll know there’s researched evidence of the media bias against Brexit.

In the realms of politics, we know that the media and ultimately the system wishes to keep the centralised status quo.

That principle must be applied by sick and chronically ill people to the battles they are fighting. Because all these battles, not least around PACE trial, are political. Therefore the rules of engagement are the same. Otherwise, nothing will really change. And you’ll be forever wearing sunflower lanyards.

I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here; I’m now effectively a full time carer. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
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CanaryPod: #ToppleUncaged meets… Protoje

Welcome to #ToppleUncaged! Every week, The Canary will be bringing you a new podcast on the media landscape; hosted by me, Steve Topple. In a special episode, I’m joined by Grammy-nominated musician Protoje. His critically acclaimed 2018 album A Matter of Time followed over a decade of releases….

Brexit Britain: where dead disabled people are less important than the ‘A50’ petition. #PutItToThePeople?

Brexit chaos has continued unabated this week with a petition to revoke Article 50 (A50) getting over four million signatures by 10am on 23 March. Also on 23 March was the #PutItToThePeople march in London.

Good for the “FBPE” crowd. Because while they obsess over the EU, there’s another petition out there. It’s calling for an inquiry into the deaths of disabled on the Department for Work and Pensions’ (DWP) watch. Sadly it has only got around 0.25% of the signatures of A50 one. Perhaps a damning testament to how ludicrous the UK political arena has become.

So, we’re in a mess with Brexit. I won’t furnish you with an update. Because by the time I hit “publish” on this article the situation will probably have changed. But in the midst of all this chaos another petition is doing the rounds. It’s one that I think is far more important than the other, liberal wet dream.

Justice for Jodey

It’s called:

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP…

Here’s the link:

https://petition.parliament.uk/petitions/243337

If you want to read the full background and Jodey’s horrific story, please read John Pring’s Disability News Service article here. But as he wrote:

Relatives of six disabled people who died due to… (DWP) failings have backed a new petition to MPs that calls for an independent inquiry into deaths linked to the department’s actions.

 

The petition… says such an inquiry should also investigate potential misconduct by ministers and civil servants.

 

And it says that any evidence of misconduct contributing to serious harm or deaths of benefit claimants should be passed to the police for a possible criminal investigation.

 

The petition… brands DWP ‘institutionally disablist and not fit for purpose’.

 

And it calls on DWP to ‘urgently change its policies and administration of social security benefits to make the safety of all claimants a priority’.

Sadly, I think six people’s deaths under the DWP’s watch is just the tip of the iceberg. The figures back this up as well.

Tens of thousands. Dead.

Nearly 30 people a day have been dying on the DWP’s watch, either waiting for benefit decisions or when the department told them they were ready to move towards work. Then, the DWP was forced to reveal 21,000 people died waiting for it to pay them money it owed them.

Meanwhile, an Oxford University study found that at least 590 people had taken their own lives, due in part to the Department for Work and Pensions’ (DWP) Work Capability Assessment.

This is on top of five successive UN reports, one of which slammed successive governments for committing “grave” and “systematic” violations of disabled people’s human rights. And another which branded the situation a “human catastrophe”.

All of this is without the self harm, abject misery, poverty and mental torture which the DWP has had a hand in.

A bunch of odious shits

So, why so few signatures for this petition, yet so many for the A50 one? Of course, if you’ve signed both – I salute you. So please disregard this section.

If not…

Let’s be honest: of course the A50 petition would be more important to some (not all) of the FBPE group.

Some of them are Lib Dem supporters, who helped push through harsher DWP benefit sanctions in return for the Tories passing their 5p carrier bag charge. No, really.

Then, some of them are Labour supporters from the Blair school of thought. The same ideology that started the DWP on the path to a “human catastrophe”.

Also, some of them are ‘compassionate Conservatives’. You know the ones – the Anna Soubry’s of this world whom TV show (and alleged disability advocate) The Last Leg think is amusing to have on as a guest. Actually, Soubry and her ilk are the worst kind of Tories: feigning care with one hand while metaphorically punching disabled people with the other.

‘Othering’

But moreover, politician’s and the media’s demonisation and “othering” of sick and disabled people over the years has got us to this point. A point where there can be tens of thousands of deaths and the public barely flinch.

Of course, sick and disabled people dying now (as in, right now, probably 30 today) is far less important than the self-serving motivations of these collective odious shits and their FBPE obsession.

Sorry, what do you want?

You can argue with me until you’re blue in the face that Brexit will make life worse for sick and disabled people. Maybe it will. But point me to the evidence of how the EU stopped five UN investigations, tens of thousands of deaths and immeasurable suffering caused by the Tories and the DWP, previously?

Also, explain to me how you will reform the inherently undemocratic, corporatist capitalist EU for the better, to improve the lives of sick and disabled people in this country – when the EU project itself will either implode, or become neoliberalism on steroids?

And tell me how revoking Article 50 and/or a People’s Vote will not play into the hands of the far-right figureheads, already embolden by the Brexit chaos, plus seemingly unrelenting in their racism even after the New Zealand massacre?

I personally think, as I did in 2016, we’re screwed either way. So we need to get on with the job of dismantling the current systems of power where we can affect them: in this country.

Stop the deaths, or get lost

The first part of that is to stop people dying. Unless my moral compass is completely skewed and I should be focusing on where people can fish after Brexit? Would that be better for you?

Seriously, screw the people who think Brexit is more important than people dying, right now, in this country. And screw the self-serving horse you rode in on. Also, screw those who’ll tell me ‘We don’t!’ yet can’t put the energy they have into the FBPE movement, into fighting for sick and disabled people.

Anyone else who has a shred of moral credibility and half a heart, please sign the DWP petition here.

I no longer write for The Canary (due to my girlfriend’s chronic illnesses – read about that here) so any donations to keep this site and my writing here going, or help me and her, are gratefully accepted. Thank you.
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Here’s how to begin winning the PACE trial war

The media and medical professions are currently at war with chronically ill and disabled people. It’s a textbook example of the establishment systematically attacking people who it thinks can’t fight back, to deflect from its own disgraceful failings. But what it didn’t expect was the so-called ‘Millions Missing’. And now, it’s time to start winning this war.

Three articles. One story.

As I previously wrote, there is currently a coordinated media war against chronically ill and disabled people who live with myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome). This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.

Firstly, I wanted to put the three articles I have written about this in one place. I hope they provide some useful commentary on the issue, and give people living with ME and their advocates some much needed support.

Article one is about how the media war is being waged:

https://mrtopple.com/2019/03/18/the-media-is-waging-a-coordinated-war-against-chronically-ill-and-disabled-people/

Article two is about one of the reasons why it is:

https://mrtopple.com/2019/03/18/the-twisted-reason-the-media-have-waged-war-on-chronically-ill-and-disabled-people/

Article three is the ‘what’ – what impact PACE trial and its proponents have had, and are having, on people living with ME – some of which I rarely see discussed:

https://mrtopple.com/2019/03/18/dont-be-fooled-pace-trial-was-an-abusive-war-on-chronically-ill-and-disabled-people/

But I also wanted to give mine and Nicola’s thoughts on how we, the ME community and the people involved, move forward.

Don’t let those who would seek to destroy you, beat you:

You are already fighting a disease of catastrophic proportions. We know how hard this is. But the likes of Michael Sharpe and the media? Anything they throw at you pales in comparison to the ravaging impact of ME. You are far, far stronger than them – even if you feel you’re not.

Beware ‘false prophets’ and ‘Trojan Zebras’:

There are going to be journalists and advocates come along, writing about ME and supporting you, who are not doing it for the right reasons. Or they will be compromised and won’t really understand why. But they’ll make out that they’re being fully supportive and really understand what’s going on.

Don’t be fooled. In the same way these people and the outlets they write for are ‘controlled political opposition’, they are controlled opposition against PACE trial.

“Ye shall know them by their fruits”. They’ll probably come with a Guardian logo. But I’ll write more on this separately.

Get clued up:

The research and evidence that blows the fraudulent nature of PACE trial is out there. If you can get your head around it – great. If it’s too much, always have the links handy, maybe saved in a “favourites” folder on your browser. This means you’re ready to drop them anytime, as evidence. The more people putting this out there, the more people will know about it.

Also bear in mind: the current media war probably has a lot to do with the review of the NICE guidelines on ME. If they can solidify now the view that anyone opposed to PACE trial is a ‘abusive’, ‘militant’ ‘activist’, when it comes to the review these opinions will be null and void. Therefore, NICE will be able to keep CBT and GET as recognised treatments.

Use the “ten commandments”:

These are from a lady called Sylvia Waites (a patient of Dr Sarah Myhill’s). Me and Nic know some of them are not practical if you’re time or financially poor, but some of them are on the money:

Thou shalt not be perfect or try to be.
Thou shalt not try to be all things to all people.
Thou shalt leave things undone that ought to be done.
Thou shalt not spread thyself too thin.
Thou shalt learn to say “NO”.
Thou shalt schedule time for thyself, and for thy supporting network.
Thou shalt switch off and do nothing regularly.
Thou shalt be boring, untidy, inelegant and unattractive at times.
Thou shalt not even feel guilty.
Thou shalt not be thine own worst enemy, but thine own best friend.

You’ll be in a far better position to challenge PACE trial and its proponents.

Support each other:

Divide and conquer is a classic tactic of the ‘establishment’, which is ultimately running the show with PACE trial. You see it in every social and political movement in history. They want us to argue amongst ourselves, as it makes us easier to pick off. Don’t do it. We may have our differences. We may all be from different backgrounds. But that’s what ME is like, no? It doesn’t care how rich or poor you are. Nor does it hurt every person in the same way. It’s still the common enemy, though. So we all need to be the common ‘resistance’.

We need to organise across campaigns. Now:

As I wrote in article two, the implications of PACE trial stretch beyond ME. But moreover, chronically ill, sick and disabled people all have a common enemy: it’s the system and its gatekeepers which leave you marginalised; without the support you need; subject to abuse from others, and often at the bottom of society.

Whether it be ME, Ehlers-Danlos syndromes, MS, mental distress – if the system worked in our best interests, you wouldn’t have to be campaigning in the first place.

So, to that end, is it not time that all campaign groups, people and advocates started to co-work, across impairments and illnesses, towards a common goal? One which puts in place the building blocks for a society we all want to see?

Check out Nic’s tweeting on #Zebras and Jen Brea’s #Nightingales. Also check out Dr Emma Reinhold‘s work. These are the starting points.

Merging our experience, stories and talents would make us unstoppable. I truly believe it. And I truly believe in all of you.

You don’t let this disease beat you. So why let a bunch of arrogant medical professionals and the complicit media?

We can do this. I promise you.

Thanks for reading x

I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
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Don’t be fooled: PACE trial was an abusive war on chronically ill and disabled people

This is the third of three articles on the subject of myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome) and a current media campaign which is targeting patients. You can read the first one here and the second one here.

The background to a medical scandal

As I discussed in the first article, there is currently a coordinated media war against chronically ill and disabled people who live with ME. This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.

The second article looked at one of the reasons why this media war is happening. Now, here’s what I believe is the most important narrative. It’s exactly what PACE trial has done to many people living with ME – and those chronically ill people not living with it.

As I previously wrote for The Canary:

For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

But there are effects of the PACE trial on chronically ill and disabled people that are not often discussed. They can be absolutely devastating.

Diagnostic chaos

Firstly, I think the issue of misdiagnosis by medical professionals is a massive one. As I’ve previously written, my girlfriend Nic was parked with a fibromyalgia diagnosis for years. But I don’t think she’s alone.

Research shows that between 2001 and 2013, diagnoses of ME/CFS fell by nearly five percentage points. During the same period, diagnoses of fibromyalgia increased by nearly six percentage points, sharply increasing around the time PACE trial was introduced:

diagnoses incidence.png

Coincidence? Make your own minds up.

Moreover, diagnoses of fibromyalgia are highest among the poorest in society. For CFS, they’re the lowest:

IMD Fibro CFS.jpg

For me, this is due to several factors.

Rampant classism

Firstly, many people in the poorest communities don’t have the privilege [pdf] of further/higher education to be able to get their heads around complex medical conditions (NB. “Lowest SES quintile group” below = poorest in society):

education one.png

education two.png

Trust me, this has nothing to do with intelligence and everything to do with your postcode. The dickhead Boris Johnson and his private schooling is a prime example of a person being educated beyond their intelligence. But when you haven’t been taught how to analyse complex pieces of writing or interpret reports, it puts you at a medical disadvantage.

Then factor in time poverty (more prevalent in working class/poor communities) and people often don’t have the head space, either. So, people will simply trust what a doctor tells them, never questioning their diagnoses. You can count parents and children in this, as well – who are often told their agony and symptoms are just ‘growing pains’.

But what would make for interesting reading would be a study into how many people, previously diagnosed with fibromyalgia, but who stepped outside establishment medicine for help, ended up finding out they were actually living with diseases and illnesses like connective tissue disorders like Ehlers-Danlos syndrome, Lyme, Lupus, Cranciocervical and Atlantoaxial Instability – and, of course, ME – just to name a few.

Medical arrogance

From the other direction, you have an arrogant medical classism and misogyny from some doctors. ‘They’re poor, so they must be stupid. What do they know?’ Exhibit one, m’lud:

Google search medical degree

But you also have an ingrained belief in what they’re taught. It’s this unflappable trust in ‘science’ (even when the science has been repeatedly disproved, like PACE trial has) which leads to blanket dismissals of certain illnesses and misdiagnoses of others. It’s where the term ‘Zebra‘ comes from, in part. It’s because medical professionals think that the simplest diagnosis is the correct one:

When you hear the sound of hooves, think horses, not zebras…

I’m sure that two of PACE trial’s chief proponents, Professor Michael Sharpe and Simon Wessely, are not bothered by this. After all, they seem to buy into the idea that medical professionals are ‘holier than thou’. Far holier of course than Zebras, Nightingales, Spoonies and the Millions Missing.

But the outward ripple effect of PACE trial for people living with ME is never considered either. It’s one that can create tidal waves, threatening to engulf them.

Public disorder

Outside of the medical profession, the implication from PACE that people can ‘think their pain better’ and ‘exercise to reduce symptoms’ can be catastrophic. Because, when social services get involved and deem that a parent’s or child’s illness is ‘all in their heads’ the results can be devastating, as the ME Association reported.

Please don’t try and tell me this is isolated, because it’s not. I can name two mothers on my estate alone that had social services involved because of chronic illness. Moreover, the ME Association report just deals with people who have ME diagnoses. I dread to think how many undiagnosed cases of ME have been implicated in child protection issues.

This is an issue that’s probably worse in working class and poor communities. Research has shown [pdf, p3] that 60% of child welfare interventions happen in the bottom 20% most deprived communities. How many of these families have mis/undiagnosed illnesses?

This same issue reverberates around other public bodies like the education system and transport. Hands up if you’re living with ME and been told to move from the priority seating on a bus? The notion of ‘invisible illness’ and the prejudice around it has been compounded/played into by PACE trial. When doctors think it’s psychological, you can imagine what the rest of society thinks. Including families.

Family issues

Many people already struggle to explain to family members, friends and their community just what the disease is and how it affects them. To then try and explain that a treatment for a physical disease is talking therapy? It again just compounds the notion that it’s ‘all in a person’s head’. Think yourself better, you pathetic hypochondriacs.

I’d say in my experience, this problem is again worse for working class and poor sick and disabled people. We’re back to the issues of further/higher education and time poverty again.

But in the cosseted world that Sharpe, ‘Sir’ Wessley (knighted for his establishment forelock-tugging contribution to psychology) and the rest of them live in, the socioeconomic intersections of PACE trial have probably never entered their over-educated, under-intelligent heads.

This issue is then compounded by another one.

Liar liar?

The results for a patient of both CBT and GET are highly subjective. How much better does talking about it make you feel? Are the exercises making your pain less? Try as the PACE trial authors might, there is no hard and fast measurements of these.

So, once again we’re back to the ripple effect with people’s family, friends and communities. If people have cancer and it doesn’t work, you can blame the chemotherapy. A worsening for AIDS patients can be put down to their body’s unresponsiveness to anti-viral medication.

But if someone living with ME doesn’t improve from CBT and GET? Who’s to blame? Invariably it’s the patient, because they’re not ‘engaging with the therapy’, or not ‘working hard enough’ on the GET. This is because there’s no other entity involved in both ‘therapies’, except the practitioner and the patient. And the former can’t be wrong, naturally. So – you’re not trying, you worthless scroungers.

Not that this notion would have entered the heads of the arrogant PACE trial authors. Their own self-assured, messiah-like narcissism only orbits one world: their own.

Amateur dramatics

I previously described the media war over PACE trial and professor Michael Sharpe as his “troll drama”. It is a drama. One he and the Science Media Centre (SMC) have scripted. One he and the SMC are directing. And one he is starring in.

For someone who claims he gets “abuse” from patients online, Sharpe is never off his Twitter – often searching out threads where’s he’s been mentioned but where his handle hasn’t been included.

But ultimately, Sharpe, in his privileged, well-heeled world is a disgrace to the medical profession for saying he’s the one being abused. If he can’t handle anger, criticism and concern from patients and their advocates (“activists” as the media circus would call them), then he’s in the wrong job. Make decisions about the lives of millions of people? Don’t do it if you don’t want a backlash if it’s proven your decisions are fundamentally flawed.

It runs deeper than this, though. The arrogant dogmatism of the PACE trial authors, who can’t possibly be questioned by patients, has extended to fellow medical professionals like Dr Emma Reinhold and MPs like Carol Monaghan. Caught in the crossfire for daring to break rank from the establishment narrative.

Lives destroyed. And for what?

Ultimately, though, this is about people. It’s about lives that have been ruined. This is about people effectively left to rot. It’s about abuse, distress, anger and neglect. This is about people who may have had relationships ruined, have self-harmed our possibly even attempted to take their own lives.

But it’s also about a medical profession that in some quarters believe they are god-like. That they should rule over their patients, without question. And that their patients should be grateful and servile for having the privilege of their presence in their lives.

Bollocks to that. PACE trial and its authors are a disgrace to the medical profession, causing misery on an untold number of people’s lives.

If this makes me an ‘abusive troll’, so be it. If the truth hurts the PACE trial authors that much, maybe they should try some CBT and GET. After all, what’s good for the goose…

I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
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The twisted reason the media have waged war on chronically ill and disabled people

This is the second in three articles. You can read the first one here, and the third one will be out in a few hours.

The war continues…

As I discussed in the first article, there is currently a coordinated media war against chronically ill and disabled people who live with myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome). This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.

As I said in the first piece, the ME story has many threads to it. And one of them, detailed below, has far-reaching implications for people outside the ME community. It also shows why, in part, the media have waged this war. Because there’s a lot at risk if it loses.

Far-reaching

Under the NHS, CBT and an “exercise plan” (which is GET, I’ve seen the consultations) is the recommended treatment for Fibromyalgia and Ehlers-Danlos syndromes (EDS). It’s probably applied to numerous other diseases and illnesses, too.

And it is this which forms part of a much wider agenda being pushed by the UK establishment.

Labour’s vision

Welfare “reforms” have been pushed by successive governments, most notably since 2008. The then Blairite New Labour government switched up things at the UK’s welfare (social security) agency, the Department for Work and Pensions (DWP). Not least, it introduced the Work Capability Assessment (WCA) for people claiming sickness-related payments. It was effectively saying that a doctor’s sick note was no longer enough to prove that people were entitled to disability and sickness-related welfare. The DWP wanted to check.

As I previously wrote for The Canary, the move was in response to the financial crisis. Blairite New Labour explicitly said so, but framed as if it was helping sick and disabled people. But in reality, it was a two fold approach.

Firstly, it was a way of reducing the welfare bill in line with bank bail-out-induced austerity. Secondly, in tandem with the burgeoning self-employment and ‘gig’ economy, it was part of a response to stave off recession; flooding the employment market with people who’d take any job going because the government had left them with no choice.

The election of the Conservative Party into coalition in 2010 took Labour’s agenda, and cruelly magnified it. It worked.

The betrayal of millions

Between October 2008 and July 2017, the DWP declared at least two million sick and disabled people ‘fit-for-work’. A further two million more withdrew their welfare claims. Millions of people, who previously may well have got sickness benefits, were suddenly magically cured by the DWP. It’s here where PACE trial comes in.

Take a medical trial, part funded by the DWP and conducted by some researchers with links to the private insurance industry.

Mix in an extra-political government agenda of reducing the welfare bill and pushing as many people into some kind of employment as possible (it’s called the Tories “Universal Credit“).

Add to this junk-science theories (PACE) that patients can ‘think themselves’ free of pain, and exercise to improve their symptoms.

Dollop in some media support via the SMC, plus an unquestioning NHS.

Throw in at least 250,000 ME patients, two million Fibromyalgia ones, an unclear number of EDS patients and probably other sick and disabled people along the way.

Force CBT and GET upon them.

Watch them accept it because many of them are the most deprived in society.

Tell all these people that if CBT and GET don’t work it’s their fault, or that their illnesses are ‘all in their heads’.

Tell the ones whose illnesses are ‘all in their heads’ that they’re not entitled to welfare. And tell the ones who are doing CBT and GET it’s proof they’re not that ill. So they’re not entitled to welfare, either.

What are you left with?

A corporatist capitalist’s wet dream. A decreased welfare bill, an increased cheap labour population and some smug ‘researchers’.

Or, as UK MP Carol Monaghan said, probably:

one of the biggest medical scandals of the 21st century.

So it continues

But don’t take my word for it. Because the UK government has got this part of its march to a dystopian future already sewn-up. Now, its moved [pdf, p43] onto its next target group: those living with mental health issues and musculoskeletal conditions and mental health issues.

We’re already seeing the DWP put work advisers into NHS talking therapy settings to get people in mental distress back to work. Or “psycho-compulsion” if you prefer. Last year, the NHS scrapped certain treatments for people living with some musculoskeletal conditions. And the DWP tried (but ultimately failed) to issue blanket guidelines to deny people living with mental health issues certain welfare payments.

But moreover, a certain Professor Wessley has just reviewed the UK government’s mental health laws. His recommendations include letting patients decide their treatments. In other words: ‘if you don’t get better it’s your fault’, or ‘you’re not really that ill, are you?’

The final knife to the heart? The DWP’s new, all-encompassing welfare payment Universal Credit. If you don’t know about it read my history lesson for The Canary here. But it’s essentially a policy to get everyone who can do the smallest amount of work possible, doing it. It’s a policy that’s been over a decade in the making and the linchpin to all of this.

Cui bono?

Cui bono is Latin for “to whom is the benefit?” In the case of PACE trial, there are numerous recipients of all the evil benefits it brings. The government, junk scientists, gig employers and the stock markets to name a few.

But ultimately, there’s no ‘Illuminati’-style conspiracy, here. No single group of shadowy people are having secret meetings deciding all this. It is simply how our system works.

PACE: the thin end of the wedge

You have politicians who support the fundamental notion of capitalism that poverty is built in. They also support the idea of free markets, corporate globalisation and worshipping at those altars. So it is, of course, second nature and involuntary to them that poor, sick and disabled people are disposable; much like the thought processes behind sending people to war.

You have medical professionals like Sharpe and Wessley who are either one of two things: gullible fools, not realising exactly what their primary school science has done. Or, they are utterly complicit narcissists, knowing what they are doing is abusing and harming millions of people – but the glory (and paychecks) are too tempting for them to repent.

You have journalists who fit the above criteria. Or they’re just thick as pig shit. You have the SMC, pretty much in the same categories.

Then you have everyone else: the NHS GPs and consultants, the DWP staff, the charities. All so compliant, so servile, so forelock-tugging and so consumed by the system that they don’t even realise what they’re doing. ‘But I’ve got bills to pay! I can’t possibly rock the boat!’

Connect the dots

Trevor Butterworth, from US organisation Sense About Science (like the SMC but in the US) responded to a tweet I was tagged in, which was discussing the links (see my previous article) between journalists and the SMC. And I’m afraid his assertion is very wrong:

Because PACE, where it comes from and why it’s defended, is the same system, ideology and ultimate disregard for other human beings that defends Monsanto, that defends GM crops, that defends wars, poverty, climate change and everything else.

But ultimately with PACE, you have millions and millions of sick and disabled people. Ones like my girlfriend, who have been so abused and mistreated by the medical profession, the DWP and ultimately the system that she’s almost given up.

A privileged, warped reality

Sharpe doesn’t have to deal with her effective PTSD whenever she has to go to see any NHS professional who automatically presumes she is a ‘hypochondriac’, ‘suffering’ from poor mental health. Thanks in part to PACE trial she was sectioned (locked up in a mental institution) for nine days because everyone believed her illnesses were ‘all in her head’. They weren’t, and she was discharged without a mental health diagnosis.

Wessley doesn’t have to sit and listen to low-down-the-food-chain NHS neurologists tell you the best cure for ME is “psychotherapy”. Nor does he have to explain time and time again that yes, ‘we’ve tried CBT and GET and it made her worse’. After explaining what ME is in the first place, obviously. And getting past the it’s just “Yuppie Flu‘ prejudices.

Neither of these men have to comfort her when she crying her eyes out, day after day, because it’s all too much and she feels she can’t go on constantly fighting classism, both socially and medically. Which is, in essence, what much of PACE trial manifests as. I’ll discuss that in the third article.

Not that either of these men care. If they did, they would have admitted their corrupt, nefarious and down right cruel experiment at the expense of some of the sickest people in society was a sham, a farce and a fraud.

I doubt that will ever happen. So I and millions of missing people will remain “trolls”. Or rather, patients and their supporters who have suffered decades of abuse; the implications of which are almost unimaginably far-reaching.

UPDATE:

In response to a comment from Trevor Butterworth, I am happy to include that Sense About Science and himself have been highly critical of PACE trial. Read more here.

The third article will be out shortly. You can read the first one here

I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
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