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 EP19

THIS PODCAST CONTAINS LANGUAGE SOME PEOPLE MAY FIND OFFENSIVE

Welcome to #ToppleUncaged!

Every week, The Canary will be bringing you a new podcast on the media landscape; hosted by me, Steve Topple.

I’ll be giving you the quickest news round-up in the UK in Plucked News. Then, I’ll be going in on some of the biggest stories with a very special guest on Free Flying With… After that, you get to have your say on the week’s talking points in Twitter Chirps Back. And finally, I’ll be bringing you the freshest, most banging political music in Revolutionary Bird Song.

This week’s guests? Up-and-coming journalist Alex Tiffin and UK reggae trailblazer YT.

Enjoy!

FULL SHOW NOTES:

https://www.thecanary.co/podcasts/2019/03/24/canarypod-topple-uncaged-ep19/

LISTEN TO MORE EPISODES AND INTERVIEWS FROM THE #ToppleUncaged PODCAST:

https://www.thecanary.co/topics/canary-pod-topple-uncaged/

 

 

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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The media is waging a coordinated war against chronically ill and disabled people

The UK is currently in the grip of Brexit. But amid this chaos, there is another, more sinister story brewing. It’s that of a group of chronically ill and disabled people, and the all out war against them being waged by medical professionals and the media.

This is the first of three stories. This part deals with the media. The second will deal with the ‘whys’ of the situation. The third will deal with the real-world implications for chronically ill and disabled people.

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’.

To be clear, within this piece ME is referred to as that, ME/CFS or chronic fatigue syndrome.

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

So, this is the disease currently making the headlines.

PACE trial

Also making the news is 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.

Now, over the past few days, there has been a flurry of stories around ME. And all of them are attacking people who oppose PACE trial.

The battle begins

It began with an article on Reuters about why one of the PACE trial researchers and main authors, Professor Michael Sharpe, was quitting his work on ME. It detailed how Sharpe and others were quitting due to being:

on the receiving end of a campaign to discredit their work…

 

Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings. Only two had definite plans to continue researching treatments.

For me, this article was the beginning of a coordinated campaign against people opposed to the PACE trial. And it is being done by industry “shills”.

Enter the Science Media Centre

If you were wondering what I mean by shill, this may help:

Shill.png

‘Shilling’ for who, you may ask? The science and medical industries’ PR machine, the Science Media Centre (SMC).

It claims to be:

an independent press office helping to ensure that the public have access to the best scientific evidence and expertise through the news media when science hits the headlines

But in reality, this is not the case. Because it is actually little more than a corporate industry spin doctor, promoting the views of people who really don’t have the public’s best interests at heart.

$hilling for corporates

The author of the Reuters article Kate Kelland just happens to be quite involved with the SMC. Credit to Twitter user Carol L. Binks for pointing this out to me:

Kelland has been on board with PACE trial since 2011 – as this Reuters article shows. But she also has form.

She previously was involved in some controversy, over an article she did about chemical company Monsanto’s weedkiller and its trial in the US over its links to cancer. There were rumours she obtained vital documents from Monsanto directly. But for me, it’s also likely that the SMC had a hand in this, given they have been funded by Monsanto in the past and published analysis of the trial. Two out of the three scientists it quoted were effectively supportive of Monsanto, with one declaring a conflict of interest.

Then enter the UK fracking industry, and we have a similar scenario. Kelland pushing the safety to public health of the industry via Reuters on 31 October 2013; the same day the SMC were also promoting fracking.

If you want a double whammy, here’s another article by Kelland backing Monsanto, but with a pro-genetically modified (GM) crops thrust. This time it was specifically about Monsanto’s GM corn. And then you have the SMC also caught up in scandal over its pro-GM line – allegedly to help former UK Prime Minister David Cameron.

So, firstly we are seeing a broad kickback against criticism of PACE trial. This looks to me like it’s coordinated by the SMC. But we’re also seeing an all out war being waged in support of Sharpe.

$hilling for Michael Sharpe

Both the Times and the Daily Mail have published supportive [paywall] articles about Sharpe’s ‘troll drama’.  And both papers’ parent companies have previously funded the SMC. Meanwhile the assistant editor of the Times sits on the SMC advisory committee.

In the Sunday Times, notorious columnist Rod Liddle wrote a piece [paywall] supportive of Sharpe and critical of the “ME lobby”. That’d be ‘patients’ to the rest of us. It was factually incorrect, littered with contempt and as amateurish as they come. But Liddle, like Kelland, has form, having written a supportive piece on PACE around the time it was released. He was previously editor of BBC Radio 4‘s Today programme, the BBC forcing his hand to leave in 2002. It’s unclear just why Liddle feels so strongly about PACE and Sharpe. But again, we’re back to the Sunday Times‘ parent company previously funding the SMC.

And then, as if by magic, Sharpe appeared on the Today programme on Monday 18 March:

People such as Dr Emma Reinhold noted that the interview was completely one-sided:

But as Stewart pointed out, the SMC admitted [pdf, p4] that it spoon fed (or “seeded” as it’s known in the industry) Tom Feilden, the science and environment editor for Today, a previous story. It wrote [pdf, p4] that Feilden:

won the UK Press Gazette’s first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award.

Unsurprising, maybe, when you consider one former and one current senior BBC employees both sit as trustees of the SMC.

Also, the SMC included this statement [pdf, p8] in its 2017/18 accounts:

SMC Report Grab 1.png

It did the same [pdf, p7] in 2016/17, although it referred to the “select groups or individuals” as “prejudiced”.

Further to this, Ed Sykes is SMC’s senior press manager and head of mental health and neuroscience. But he was [pdf, p10] also a “non-voting member of the advisory board” of the UK CFS/M.E Research Collaborative (CMRC), a group which historically supported [pdf, p5] PACE trial’s findings. Action for ME, part of CMRC, had been criticised for it’s partial support for PACE trial’s findings, then it’s slowness to keep up with the growing concerns over the trial.

To be fair to CMRC, last year SMC left [pdf, p4] its board and ended any involvement with it. Also, the CMRC recommitted to a biomedical focus on ME. So things there look hopeful.

But still, for me, the current media and medical storm over PACE trial, Sharpe and those critical of it is coordinated. And it’s being done, in no small part, by the SMC. It has blatantly seeded stories to Reuters, the Times, the Daily Mail and the BBC using preexisting contacts and/or it’s network of connections.

For example? This is writer/broadcaster Claire Fox tweeting praise of Sharpe’s appearance on Today programme:

Claire is the sister of Fiona Fox, the SMC’s chief executive. No, really. Then look at who’s been sharing Claire’s tweet. Mark Buckingham, for example – pharmaceutical giant Bayer’s “corporate engagement lead”. Bayer of course are current funders of the SMC.

Meanwhile, Oxford Psychiatry which also retweeted Claire’s tweet has Sharpe as a “principal investigator”.

See what’s happening here, yet? There’s no need for Russian bots. The SMC has a farm of real people acting like them all to itself.

A wider agenda

But why all this fuss? All this effort? Why all this BS?

It probably seems odd that much of the mainstream medical and media community seem so defensive of a trial, whose results have effectively banned in the US.

The situation with ME has many threads to it. Not least among these, in my opinion, is the notion that it is part of a wider pandemic of chronic illnesses worldwide. I’m convinced ME has its roots in virology/immunology. I am also certain it is catastrophically under-misdiagnosed. And I’m also convinced the degradation of our bodies via soil depletion, air pollution, poor diet and more is making humans more susceptible to diseases and illnesses than ever before.

This would be an uncomfortable truth for the corporate, globalised world. As it would throw into question the entire system, and how we structure our lives as a species and as a society. It would also add fuel to the fire over our collapsing, corporate capitalist system. So, diseases like ME are far better left ‘unexplained’. And sick and disabled people left on pharmaceutical painkillers and antidepressants. All that is for another article, though.

But for this thread of the ME story, PACE has implications far beyond people living with the disease.

The second and third articles on this will be published shortly.

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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