CanaryPod: #ToppleUncaged – Antonia’s story, part one

THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE AND UPSETTING. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS. THE GUESTS GAVE THEIR FULL PERMISSION FOR SHARING THIS INTERVIEW. Welcome to series two of #ToppleUncaged! Every week, The Canary will…

The DWP just denied benefits to someone with 16 different illnesses

The Department for Work and Pensions (DWP) just denied full benefits to a chronically ill and disabled person who lives with 16 different diseases, illnesses and conditions. The decision shows the abject failure of government outsourcing. But it also demonstrates the callous and incompetent nature of the welfare system.

16 illnesses and counting

Personal Independence Payment (PIP) is a welfare entitlement from the DWP. Is it intended to help towards the additional costs disabled and sick people have due to their conditions.

My partner Nicola Jeffery is one such person. You can read all about her medical story here. In short, she lives with:

Oh, and possible Secondary Mast Cell Activation Syndrome. We’re still looking into that.

I gave up work full time to support Nicola. You can read more about that decision here. Since then, we have accumulated probably the best clinical evidence of her illnesses available in the UK. I’d put my neck on the line to say most people have not got the extent of a diagnostic picture she has.

It has cost a small fortune from my mother’s life savings, and we are now having to fund raise to get further treatment for her seizures, like the one below:

This is because the NHS will only recognise them as “functional/dissociative” or “psychomatic”, even though I have hard clinical evidence that proves otherwise.

You can read about our fundraising here, and if your can help please donate via this link:

http://www.paypal.me/MrTopple

She is house bound for 85% of the time. When she does go out, she has to build up to it. Afterwards, she is incapacitated for several days. This is just one aspect of her health. The implications of all her conditions are extensive and systemic, affecting every part of her body.

Going back to the DWP

So, she applied for PIP. We submitted several doctor’s reports, a complete diary of Nicola’s life for the entire month of May, her complex treatment regime and more.

After a PIP assessment where the assessor let a fire door slam onto Nicola, almost knocking her over and injuring her hip, we got this decision:

Nic PIP.jpg

As is usual, the assessor appeared kind and understanding, which we know is never a gauge of the outcome.

I wasn’t expecting the DWP to award Nicola higher rate for both without a fight. But I was expecting standard rate mobility and possibly higher rate for daily living. To say I was furious wouldn’t do my anger justice.

Let me break the DWP’s decision down for you using one area as an example. We have clinical evidence to back up every single claim I make below.

Full time caring? Not according to the DWP

Around four hours of my day is spent preparing Nicola’s complex medication regime and cooking. The former consists of 26 different supplements and pharmaceutical medications, administered at six different points across the day.

This is what she takes in the morning:

_20190719_100357.JPG

The latter consists of a controlled carbohydrate and sugar free diet, where every ingredient has to be measured and the calorie (kcal) content calculated.

Nicola has dysphagia, which means she has difficulty swallowing and can be at risk of choking. She also has impaired cognitive function, meaning she cannot remember what she is taking when. Her impaired cognitive function means she struggles to follow written instructions for something with this level of complexity.

In her May diary, we noted that she attempted to cook a meal once. She struggled to remember the quantities of ingredients and was left exhausted and distressed after trying.

All the supplements, medications and the diet serve various functions to try and improve Nicola’s health; specifically with her ME and hEDS.

To be clear: this is not our medication and diet plan. It’s not a “lifestyle choice”. This is from one of Nicola’s private, General Medical Council (GMC) registered doctors. We also have written evidence of this plan being approved by three NHS, GMC-registered consultants.

The DWP’s score for Nicola on “managing your treatments” was 1 point, the minimum.

The reality? She should have scored 8, as I have to spend more than 14 hours a week preparing and administering it. I also have to “monitor” her “health condition” by taking five blood pressure, heart rate and temperature readings across the day. This is because some of the medication she is on results in changes to these. I also have to “monitor” her “health condition” by documenting her symptoms and being proactive when she has, for example, a Post-Exertional Malaise (PEM) crash, as this requires additional support and medication.

The DWP did not recognise any of this. It was the same story on most of the other descriptors. I won’t go into them as this article will turn into an essay.

But it’s the mobility decision that is the most infuriating.

Mobility chaos

The DWP did not believe that Nicola’s uncontrolled, random seizures warranted me having to support her to make familiar and unfamiliar journeys. Even though I have witnessed her having them in the street, and also at any time of the day. It did not equate that if she did have a seizure, on her own, in the street, and collapsed she would be at serious risk of neck injury owing to her CCI and AAI. Nor did it intersect this with the fact that Nicola can only attempt to go out one day a week.

It didn’t equate for the fact that Nicola cannot risk using public transport anymore due to, again, the risk of injury to her neck. Nor did it equate for Nicola not being able to use public transport anymore due to the risk of infection due to her weakened immune system. It didn’t equate for Nicola having an anaerobic threshold of four metabolic equivalents (METs), meaning she cannot do any exertion which takes her over this. Walking the 0.8km to our train station would be this. Going to and from a bus would use up part of those four METs.

The DWP didn’t take into account that Nicola can no longer plan and go on an unfamiliar route unaided, due to her cognitive impairment leaving her at risk of getting lost. Nor did the DWP take into account that Nicola forgot her parents address recently. They live 30 seconds walk away from us.

A whitewash

Overall, the assessment was a whitewash of the severity of Nicola’s health. The assessor even had the audacity to say that she was “not diagnosed with any cognitive conditions”. Even though ME, hEDS, CCI and AAI all effect cognitive function, as stated in the literature available.

As a side note, the assessor also said:

You are not taking any medications to treat your symptoms of nausea and vomiting and there is no evidence to suggest these symptoms in your plan.

The second part is firstly a lie, as the evidence was there in Nicola’s diary. The first statement about medication shows the incompetence of the assessor and the DWP. Nicola is taking adrenal hormone replacements which, in part, her doctor has prescribed to attempt to improve her digestive transit, thus improving her gastroparesis.

Back in 2016…

What sticks in the throat even more is that Nicola is getting the exact same PIP award as she was previously getting in 2016. That is, standard rate daily living component. This is despite at that time only living with an incorrect fibromyalgia diagnosis. But more over, this is despite a severe deterioration in her health, which I have fully documented. It shows a systematic failure by the DWP to ensure health assessment providers comply with working from the standardised guidelines. Or the department has built in this fault in the system to ensure the muddying of waters when it comes to a level playing field for claimants across the board; with the goal of saving money. It’s probably a bit of both.

The decision also shows the preposterous contradiction that sits at the heart of the DWP.

Toxic contradictions

We are bombarded with this constant narrative of ‘scroungers’, ‘shirkers’, ‘benefits cheats’ and the notion that the government wants disabled people to get back to work.

Yet if you buy into that distinctly capitalist mantra, Nicola’s decision goes against this. Surely the DWP wants to support her to live independently and to get back to work? But by denying her entitlements it’s stopping her health improving. And ultimately, it is stopping her finding a job.

So, which is it?

Neither. Apparently the corporate-driven push to force as many sick and disabled people into work doesn’t apply to complex chronic illnesses. Nor does the notion of the state providing support when life metes out its worst at you, apply either.

Complex chronically ill people, often living with ME and EDS, are literally being left to rot. In Nicola’s and other’s cases, it is partly because the system and specifically the NHS does not even recognise her conditions. The assessor didn’t even know what several of them were. It is also because the PIP criteria is essentially incompatible with these kind of conditions.

Their carers and advocates are also left on the scrapheap. They are left scrabbling around, begging and borrowing, desperately trying to garner some minuscule quality of life for their loved ones. The same DWP contradiction applies here, too. I cannot work full time and therefore contribute tax while Nicola is so ill. Yet by denying her full PIP I cannot get state support either.

Lives, wasted

Two lives. Literally being wasted.

And for what? To save money on a welfare budget [pdf] that makes up around 2% of the UK’s total gross domestic product? We and millions of others are literally paying the price for economic illiteracy, personal incompetence and ultimately nefarious greed. But of course, the system is such it’s supposed to be like this.

Overall, Nicola is housebound the majority of the time. Her son has had to move into his dad’s due to the severity of her illnesses and our attempts to improve her health. She is left:

  • Unable to cook.
  • Unable to clean.
  • Unable to write more than a few sentences.
  • Unable to have visitors for longer than two hours.
  • Unable to use social media for long periods of time.
  • Unable to read more than a few pages of a book.
  • Unable to have sex.
  • Unable to eat properly.
  • Unable to have proper bowel movements.
  • Unable to shower daily and properly.
  • Unable to live any kind of life.

If she does any of the above, her health deteriorates.

And still, all this is worth £57.30 a week to the DWP.

Out of options?

We are now left with a Mandatory Reconsideration, and most likely an appeal. Moreover, we are also left with hardly any financial support.

But most of all Nicola, who was for years told her 16 illnesses were ‘all in her head’, is left feeling disbelieved, isolated and abandoned. Again. Like she has for most of her adult life, not least by her family, some of whom still disbelieve her to this day.

All this just so the DWP can save a few pounds and force people back into work. Our society is truly broken.

I want to give her some quality of life back, despite what the DWP thinks. But I need your help to do it. Please donate what you can below.
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We now have to fund-raise to solve my girlfriend’s seizures

Some of you may be aware of my girlfriend Nicola Jeffery’s story. Many will be aware of her seizures. Now I believe I may have worked them out. But it’s going to cost to prove this. And we need some financial help from the public.

A complex picture

You can read all about Nicola’s medical story here. In short, she lives with:

I gave up work full time to support Nicola. You can read more about that decision here. In short, we are currently on a complex treatment plan for the ME. This is starting to show some results, with improvements across various clinical measures. But progress is slow.

What we still haven’t got to the bottom of are Nicola’s seizures.

Seizures: blighting her life

This is one of them:

She had one this morning (Wednesday). They have blighted her life for many years and no neurologist can work out what’s causing them.

At first, she was told she was waking up incontinent and in severe pain due to the birth of her child, and her now incorrect diagnosis of Fibromyalgia. Her previous partner witnessed a few of them. Her son, a toddler at the time, even had to call an ambulance during one episode.

But since we have been together, I have documented them fully.

Debilitating

The challenge for Nicola is multi-stranded. She lives with ME and hEDS, which makes her muscles weak and prone to exhaustion after exertion. Having a seizure, where her whole body contorts and strains, has a devastating effect on her. It leaves her effectively incapacitated for up to five days.

They severely impact her already damaged cognitive function. She has chipped many of her teeth and due to the hEDS her bottom front ones are now extremely loose. Moreover, she is of course at risk of Sudden Unexpected Death in Epilepsy (SUDEP).

Now, I think I know what is causing them. But to get it properly diagnosed, we’re going to need some help. This is in the hope that we can rid Nicola of one of the most distressing aspects of her illnesses.

My theory

In short, she lives with Hypocapnia, also known has Hypocarbia. This is essentially below-normal levels of carbon dioxide (CO²) in her blood. We discovered this during a two-day Cardiopulmonary Exercise Test (CPET).

Hypocapnia has two major effects. It firstly reduces arterial blood pressure. We know Nicola’s blood pressure is already hypotensive. Secondly, it causes Respiratory Alkalosis, where the blood becomes too alkaline. Normally, Hypocapnia is caused by hyperventilation. But due to the CPET testing in Nicola’s case we know this is not the cause.

What I think it happening to Nicola is the following:

  • Her mitochondria dysfunction, Chronotropic Incompetence and Megaloblastic Anaemia are causing cardio and pulmonary dysfunction. We know from various testing, for example, that Nicola’s mitochondria fail on minimal exertion and that her red blood cells do not carry oxygen around her body correctly.
  • Specifically, she has Ventilation/Perfusion Mismatch, where a part of her lungs get oxygen without blood flow or blood flow without oxygen.
  • This results in Hypocapnia.
  • It then causes her blood pressure to drop extremely low, probably due to vasodilation. It also causes her blood to become very alkaline.
  • The knock on effect is restricted blood flow to her brain. This is known as Cerebral Hypoperfusion.
  • This vasoconstriction leads to the seizures, both the focal autonomic aware and tonic clonic ones.

We know there is a link with her blood pressure. I’ve identified that the night before she has a seizure, her systolic/diastolic blood pressures drop by, on average, 8% and 19% respectively.

So, we can now predict when she will have one or both of her seizures. But I do not have definite answers.

Another long journey

To get these, and finally rid her of these distressing episodes, we will need to find a neurologist, cardiologist, haematologist and pulmonary expert who are willing and open minded enough to do all the necessary testing. It will involve more blood tests, and numerous diagnostics the night before, during and after a seizure.

None of this, from my theoretical diagnosis to the investigatory work, is available on the NHS. Nicola’s seizures have already been labelled “psychosomatic” and “functional” (ie. all in her head) by several neurologists. We will not get help there.

Most of Nicola’s treatment is now private, due to the lack of recognition and clinical care for her illnesses on the NHS. You can read more about that here. We currently have the money to fund this.

But to investigate Nicola’s seizures fully we need help. It’s an unbudgeted expense in her treatment plan.

We need your help

So, we are asking people to donate via my PayPal to support us in trying to get to the bottom of this. Once I have an idea of cost I’ll publish this. I know a standard consultant appointment will be at least £250-£300.

We both understand how hard things are for many people at present. But anything you can donate would be greatly appreciated.

Nicola’s life has been blighted by chronic ill health for too long. If we can solve her seizures, then one aspect of her complex and debilitating medical picture will finally be resolved.

I want to give her some quality of life back. But I need your help to do it. Please donate what you can below.
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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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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

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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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