THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS.
Welcome to series two of #ToppleUncaged!
Every week, The Canary will be bringing you a new podcast on the media landscape; hosted by me, Steve Topple.
In a special episode, I caught up with UK rapper Anon the Artist. Originally from Sidcup but raised in Croydon, Anon uses his music to tackle political and social issues head-on. Having been rapping and writing lyrics from a young age, he’s recently come into his own with his latest two, stunning tracks: Medicated and Medicated (Part Two), which deal with mental health from a very real and raw angle.
So, I caught up with him for the #ToppleUncaged podcast. We chatted about his musical background, battling mental health, the state of UK grime and drill music and more.
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.
Sleep disturbance / problems.
Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
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 disbelieved, stigmatised, 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.
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:
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.
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.
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.
For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, 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.
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:
Coincidence? Make your own minds up.
Moreover, diagnoses of fibromyalgia are highest among the poorest in society. For CFS, they’re the lowest:
For me, this is due to several factors.
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):
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.
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:
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 repeatedlydisproved, 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.
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.
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.
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.
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.