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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The reality of living with chronic illnesses under our arrogant NHS

If you’ve ever broken a bone, or god forbid had cancer, then I’m fairly sure your experience of the NHS has, on the whole, been positive. Sadly for millions of chronically ill and disabled people, our out-of-date, arrogant factory farm health service is probably making them even sicker.

How much going on…???

My girlfriend Nicola Jeffery is quite the medical thing. Disabled, chronically ill with multi-systemic diseases and illnesses, she ain’t that well. But to look at her, you’d probably think there was nothing wrong. That’s what it’s like to have ‘Invisible Illnesses‘.

Here’s my helpful attempt at collating all her symptoms through the medium of art. I like to call this work part of my “For Fuck’s Sake Period” stylistic phase of painting:

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You can read Nic’s journey so far here and here. But in short she’s currently living with:

Out of all these, POTS, Polycystic Ovary Sydrome and TMJ were diagnosed on the NHS. The two viruses were found by accident in an NHS bone marrow trephine biopsy.

The HSD, the ME, the CCI and the AAI were diagnosed privately. We did this for the HSD because the waiting list for the NHS was two years.

For the ME, Nic is having groundbreaking tests which aim to identify the viruses that are active in her body – the ones the NHS would say are dormant and benign. If you know about ME, you’ll know where we’re going with this. If you don’t, you may like to read this.

Neither CCI or AAI are even recognised on the NHS, and the former was diagnosed by a doctor in Barcelona.

Two years of change

All of these diagnoses have happened in the past two years. Before that, Nic was told it was ‘all in her head’, sectioned because of this under the Mental Health Act (and discharged with no mental health diagnosis), then told she had Fibromyalgia, given antidepressants, told to think happy thoughts with some Cognitive Behavioural Therapy (CBT) and told to pull herself together with some Graded Exercise Therapy (GET, pdf).

What changed? Read about that here.

But ultimately, what’s held Nic back for so many years is sadly the NHS.

Because, in terms of people with multiple chronic illnesses, the NHS is simply not fit for the 21st century. In fact, I’d go so far as to say that for many it is actually detrimental to their health.

The National Health Service

These are Nic’s medical history folders. The middle and right ones are for the NHS:

DSC_0133 (1)

This is the problem. The NHS, which I fully believe should be free for everyone (not free at the point of use, completely free without contribution) is a wonder for cancer patients. It’s a miracle for trauma injuries. Our health service is a blessing if you have leukaemia. But it is broken for people living with complex, multi disciplinary diseases and illnesses.

The NHS fails Nic and so many people like her.

Boxing you off

Medicine is extremely compartmentalised, partly due to an increasingly out-dated view of health, also due to the influence of pharmaceutical companies and moreover due to the increasing involvement of private firms in public health.

It’s sadly also due to medical professionals who are more interested in their own paychecks, and mortgages, than what is best for the patients. Interestingly, we find the lower down the NHS food chain you go and the more ‘everyday’ consultants/bods you see, the worse the self-serving attitude and disinterest gets. The health service’s top professors and consultants in our experience have been the most understanding, honest and helpful.

As Nic always says of the compartmental nature of the NHS:

I’m just keeping people in jobs…

One thing leads to another…

While this currently works for ‘mainstream’ illnesses like cancer, it is beyond ineffective for people living with diseases like ME and Lyme and illnesses like EDS, CCI and AAI. Because these conditions affect every part of the body, the response from the medical profession should be an overarching, holistic one. One professional or centre should deal with everything. Because, for example, the intersections between the autonomic and digestive systems would then be dealt with together – like how AAI can cause colonic motility dysfunction. That’s NeuroRheumaGastrology. Google it. It doesn’t exist.

Great Ormond Street, for example, deals with hypermobility. But when the NHS doesn’t even recognise conditions like CCI and AAI then it is effectively like putting a sticking plaster on a broken leg. You’d think alarms bells would ring when research shows [pdf, p3] nearly 50% of EDS patients report headaches. But no, CCI and AAI are outside the realms of the NHS.

An admission

Admittedly, the NHS ties consultants hands somewhat. As one of the most respected doctors within the EDS and chronic illness field of research told us:

The NHS is like a circle. There’s a white area in the middle where we always sit. Then there’s a grey ring outside of that, and a dark grey ring outside of that. We can sometimes go into the grey ring. But we’re never allowed to enter the dark grey area.

This conversation was in the context of diet and high intakes of vitamin and mineral supplements as partial treatment options for ME. The consultant categorically stated that outside of the NHS:

Our research is leading us towards this holistic approach, away from pharmaceuticals, physiotherapy and pain management. But I can only tell you what is in the white, and possibly grey, areas. That’s in the dark grey area.

He then had to revert back to his NHS script. It was one of the most telling conversations we’ve ever had with a NHS medical professional.

Fuck the GPs

‘Go to your GP!’ I hear you cry. ‘LOL!’ I yelp back at you.

GP’s are often ineffective. Our current one cried when Nic first broke the situation down to her. She cried because she felt overwhelmed by it all.

Try fucking living with it.

But as Nic describes, GPs are like car drivers. They take their test once, then it’s up to them if they keep up-to-date or not. Her GP, the most proactive one she’s had, doesn’t know anything about CCI, AAI, EDS, POTS or ME. We had to direct her to the information.

But still, as one person living with ME pointed out on Twitter, arrogant medical professionals put signs like this up:

Fuck you and the middle class, educated-beyond-your-intelligence horse you rode in on.

That may well have been my response if I’d seen that. There’s an arrogance and classism that pervades the medical profession, along with misogyny. Once again, Nic is a prime example.

Left for dead?

For a decade she was ignored or not listen to. Her symptoms have been consistent. Then suddenly I come along, and within two years she has six new diagnoses and has seen (on the NHS) some of the top neurogastroenterologists, haematologists and dermatologists in the UK. Something to do with my lack of colloquial accent, use of big words, passive-aggressive demeanour, verified Twitter account and the cock and balls between my legs? Make your own minds up.

But still, despite all this, Nic has no conducive treatment plan. At this point I suggest you read my work on PACE trial. If you know about it, then contrary to popular belief it doesn’t just affect people living with ME. It has implications for EDS, Fibro, “MUS“, “MUPPETS” (yes, “MUPPETS”) and other groups of people. It is this, in part, which has made the NHS so toxic for Nic.

Sorry, sorry and sorry again

So, her and countless others like her are left with folders like the middle one in the picture. They’re crammed full of letters, diagnoses, repeated “sorry’s” (the most infuriating word for many chronically ill and disabled people) and metaphorical shrugging of shoulders from every single NHS department. Because there is not one that deals with her health as a whole. Therefore no one is able to see the answers to her apparent health conundrum.

As a leading immunologist and microbiologist recently told us:

[The NHS] may as well have ‘Big Toe Consultants’…

The implication he was making is that the NHS and its structure is so broken up it’s pretty much broken itself.

What they are also often left with is incorrect diagnoses like Fibromyalgia and huge amounts of chemical painkillers. Or medical professionals tell them mental health is playing a major part, and shove them on antidepressants. It is terrifying to think how many people could be living with ME, CCI or AAI, but are eking out their existence with ‘Fibro’ and heavy doses of meds.

Into the devil’s lair

Currently only private medicine offers anything near an effective approach for someone like Nic with her cupboard full of different diseases and illnesses.

But what it also offers is an understanding of chronic illness that stands in stark contrast to the arrogance of the NHS, with it’s sneering signs about “Google”:

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There’s a reason people with so-called ‘rare’ illnesses are called “Zebras“. It’s because medical professionals are taught to think that the simplest diagnosis is the correct one. That is, they’re taught that:

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

We see you, fellow Zebras. You’ve got this.

Interestingly, as a senior neurologist at one of the most respected NHS hospitals in the UK (who had never heard of CCI) told us:

Chronic illnesses are going to be the new cancer and heart disease.

Truth to power. They are. Yet the 21st century NHS, a 20th century factory farm production line where sick people go in one end and healthy people are supposed to come out the other (or have palliative or management care), is in no way equipped for this growing epidemic.

So, that’s why I’ve already spent £3,000 privately to get Nic to this point. Money I don’t really have but money I’ve found because I’ve had to. It’s already run out and we’re not even on treatments, yet – just diagnoses.

As rabid, far-left, borderline anarchist troublemakers, it has been a moral conundrum for us. But for me, it’s one that was quickly solved.

Nicola: changing the world

I cannot stand idly by and watch the NHS catastrophically fail the person I love, when I know the solutions are out there. Yes, I’m playing into the very system (corporatist capitalism) that I despise. But my love for Nic is too much to have allowed this to continue.

Moreover, by fixing her health to the best it can be, we are creating weapons in our armoury to continue to fight the system. The more evidence the chronic illness and disabled community have, the better equipped it will be to fight back. Nic’s medical journey is part of that.

I’m convinced she can help change the world. So, we’re going to get her well. But it will sadly be without the NHS.

Most of Nic’s medical treatment now has to be private. 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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A video I released only tells part of the story

UPDATED ON THURSDAY 14 MARCH WITH YET ANOTHER DIAGNOSIS. SEE THE END OF THE ARTICLE.

SOME PEOPLE MAY FIND THE FOOTAGE BELOW UPSETTING

This is the second part of the story of my girlfriend Nicola Jeffery’s medical journey, and why I’ve stopped writing for The Canary because of it. You can read part one here, which I suggest you should:

https://mrtopple.com/2019/03/07/the-real-reason-ive-stopped-writing-for-the-canary-watch-this-video/

It tells Nic’s story up to this point: childhood systems, her illnesses disbelieved and dismissed by the system to the extent she was sectioned, then a breakthrough. But the journey was far from over. It had actually only just begun…

Continued:

Living off adrenaline

By this point, I think Nic was essentially running of adrenaline due to the extreme stress of her everyday life. She was in constant battles with the education system, as her son was displaying similar symptoms to her as a child. She was living in social housing, with all the problems that presents. And on top of that she had to fight tooth-and-nail with the DWP for her entitlements.

But the real stress which led to all of the above, and what so many medical professionals and other chronically ill and disabled people don’t understand, is the constant threat of social services hanging over council estate, working class single mums. Nic never knew when a knock at the door might come. There was the constant fear of her son being taken away due to her ill-health. So, she fought on until I turned up in her life.

The following section is not to blow my own trumpet. It is merely a statement of fact.

“A change in circumstance”

Nic had little support prior to our relationship apart from her mother. So, with someone now living with her who had a full time job and was used to juggling hundreds of balls in the air, she could finally be as ill as she really was.

The adrenaline disappeared. And so to did the last sparks of health in Nic. We’ve been together two-and-a-half years, now. And for the last 18 months she has essentially been bed-bound for most days of the week. She has about one day where she can actually do what the system would consider ‘normal’ things, like housework, or shopping, or going out. Not all of those things in one day, mind. Just one of those a week. Then, due to the exertion, the rest of the time is spent sedentary.

But what’s also changed since we’ve been together is her diagnoses.

Now we know…

We pushed for the EDS diagnosis, and got it. Initially it was classed as hypermobile EDS (hEDS). This then changed to a Hypermobility Spectrum Disorder (HSD), although the consultant said it’s either one or the other.

Common symptoms include (but aren’t limited to):

  • Chronic fatigue.
  • Easy bruising and scarring.
  • Constipation/diarrhoea.
  • Bacterial infections in the stomach and gut.
  • Subluxations.
  • Joint pain.
  • Vitamin and mineral deficiencies.
  • Cognitive impairment.
  • Lack of spatial awareness.
  • Visual impairments.

She also now has a diagnosis of Myalgic Encephalomyelitis (ME). This debilitating, systemic, neuroimmune disease is characterised by:

  • Post Exertional Malaise, brought on by either physical or mental activities, or both.
  • 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.

She also has a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) – issues with the regulation of blood pressure and cardio function. Nic has deformities in her left foot. She still has the seizures, Polycystic Ovary syndrome (which has been left untreated) and the Temporomandibular Joint Dysfunction. She also has the presence of the Epstein Barr Virus (EBV) and the Cytomegalovirus (CMV). If you’re an ME boffin, I can feel your ears pricking up as I write that last part…

We have recently just got a diagnosis of Atlantoaxial Instability (AAI). This is in some respects the most serious. In layman’s terms, her top two vertebrae do not function properly. This causes the surrounding joints to partially dislocate every time she moves her head from left to right. It also causes complex manifestations neurologically and autonomically, possibly affecting nearly every system in her body. It is potentially progressive, with the most extreme cases leading to paraplegia or even death by self-decapitation of the spinal cord.

Yup. All of that. Which she was told for years was “all in her head” or Fibromyalgia. Just think on that for a minute.

Cock and balls syndrome

But the journey to this point has been bizarre to say the least.

Suddenly, medical professionals are taking notice. For a decade she was ignored or not listened to. Yet her symptoms have been consistent. Then suddenly I come along, and within two years she has five new diagnoses and has seen (on the NHS) some of the top neurogastroenterologists, haematologists and dermatologists in the UK. Something to do with my lack of colloquial accent, use of big words, passive-aggressive demeanour, verified Twitter account and the cock and balls between my legs? Make your own minds up. More on this in another article.

Current positions

So, where are we at?

Well, none of the past two years to get to this point have been easy. We have now exhausted the limitations of the NHS. Nic has tried the treatment options it offers for EDS and ME, and all made her symptoms worse. AAI is not recognised on the NHS, so no treatment options are available.

I have been taking her to private consultants since last year. Not least because the NHS is too slow, but also because of the severe lack of knowledge and understanding within our health service of all of Nic’s diseases and illnesses. So far, just to get testing and diagnoses, it’s cost £2,500. She hasn’t begun any treatment yet apart from a change in diet and an intensive regime of vitamin and mineral supplements.

Oh, and a neck brace for fear one of her vertebrae may chop her own head off unexpectedly:

Nicola.jpg

What’s more, this journey has exposed the systemic failings of the NHS for chronically ill people. Again, a separate article on that. But we’ve also gone down a rabbit hole when it comes to all these illnesses.

hEDS/HSD, ME, POTS and AAI are all subject to intense debate. Because there is no agreement on the causes of any of them, they all fall under ‘chicken and egg’ discussions and all present in often confusing manners. All are subject to the notorious PACE trial, either directly or indirectly (read my work on that here). They are all often cluster syndromes. But ultimately we believe all are severely under or misdiagnosed. This is a rabbit hole I’ll be writing on at a later date.

Looking to the future

So, for the future?

The NHS is giving her an insole for her foot deformation. Hurrah!

The hEDS/HSD is pretty untreatable. And yes, she’s tried everything the NHS recommends.

We are currently seeing two private doctors for the ME, with the approval of Nic’s main NHS neurogastroenterologist. Again, she’s tried everything on the NHS… blah, blah, blah.

The POTS, in my opinion, is a symptom of the AAI. And again, there is little the NHS can do. Although we are exploring treatment options.

The seizures are symptoms of the AAI as well, in my opinion. If you want the technical jargon, in Nic’s case I think it causes pre-syncopes and syncopes which present as tonic clonic seizures (not true seizures).

The Temporomandibular Joint Dysfunction is a symptom of the AAI… Yes, you get the idea. Many roads lead to AAI we think. But again, more on that later.

For the AAI, we’re under a private clinic in Barcelona. If she wants an operation at the latter to correct this, that’s €60,000 please.

So, in other words – the NHS is done with, for us. We have no option left but to go private.

Enough is enough

I came to this decision because I refuse to let Nic’s life be wasted.

She is too intelligent, perceptive, smart, funny, insightful and compassionate to spend the rest of her life in bed, on the sofa or having one day a week where she can do something. She has a son that needs her. And Nic is a force of nature who I believe could do great things and help change the world.

She needs the opportunity to realise her potential. So, that’s what I’m going to give her. But as I previously wrote, to do this I need to focus on her and little else.

Nic has gone through enough already in her 33 years. She now needs full time support, not just with day-to-day living like taking her medicine regime, cooking meals and cleaning the house (all of which she is unable to do, now). But she needs the support of someone to take her through the next stages of her recovery. That person is me.

I’ve been doing all this while also writing 15 articles a week, recording and editing a podcast, doing a weekly YouTube show and other TV and written work. But it got to the point where it was becoming apparent something had to give.

I love Nic with all my heart. I’d walk through fire to protect her. So the choice was easy. Changing the world via journalism can wait. Because if we can get her better, then we can start to change the world together.

I often joke with people that if Nic is like she is now while so unwell, she’s going to be scary when she’s in better health. Because I do believe we can get her better.

So, that’s Nic’s story and a bit of mine. But there is still lots more to come. If you can see yourself in her journey then feel free to get in touch. Thanks for reading.

UPDATE, THURSDAY 14 MARCH:

Yes, Nicola now has yet another diagnosis. It’s Craniocervical Instability (CCI). This is in many respects similar to the AAI. But it means that the whole of the top of her neck is unstable and the implications for the rest of her body more complex.

We were startled to find this out (via a neurosurgeon in Barcelona, whose diagnosis was seconded by the professor who analysed the Upright MRI in London). But it actually makes sense. Most people with AAI also have CCI.

That’s of little comfort to Nic, whose mind is currently blown by all of this.

Most of Nic’s medical treatment is now private. 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 real reason I’ve stopped writing for The Canary? Watch this video.

SOME PEOPLE MAY FIND THE FOOTAGE IN THIS ARTICLE UPSETTING

As some people know, I’ve stopped writing for The Canary, for now. One video sums up my reasons for this decision. But the backstory behind it really hammers home why I’ve done this. And it also acts as a testament to the situation for millions of chronically ill people around the world.

The tip of the iceberg

This is my girlfriend Nicola Jeffery having one of her regular seizures. Some people may find this upsetting:

These apparent tonic clonic episodes happen at least once a month. They leave Nic fatigued, with Post Exertional Malaise (PEM) and bed-bound for days afterwards. But they are merely symptoms of a complex web of underlying diseases and chronic illnesses she lives with. And they are also merely a symptom of why I have given up full time work.

But the true illness here is Nic’s long and complex journey to this point. Because it underscores the systemic failings of our society.

It’s the first time I’m properly writing about this. Me and Nic have taken the decision to start documenting her story because we feel there are various important narratives that need to be made public.

No sob story here

This is not Nic’s ‘sob story’. This two part article is acting as the first point of reference in what will be a long and ongoing series of pieces charting her medical, societal and socioeconomic journey. While elements of her story may not be unusual, as the sum of their parts I believe her case to be extraordinary – insomuch that not many people have got to the point she has in her circumstances.

But the reality in our opinion is that Nic and her medical journey are probably not ‘rare’, even though her diseases and illnesses are classed as such. As she always says:

They’re not ‘rare’. They’re just ‘rarely diagnosed’.

The hope is that this can be a small part in the ongoing movement towards change for chronically ill, disabled and sick people – many of whom are probably mis, under or undiagnosed.

For reference, I’m writing it because I’m the writer. If this was a vlog, Nic would be doing it – because she has an acute skill in verbal communication.

Early signs

Nic was born in 1986. A C-Section birth, the umbilical cord was wrapped around her neck restricting her breathing. It was perhaps the first indicator that her health was going to be a complex matter.

Before the age of five, she was told she had:

• Growing pains including head/neck aches, joints, muscles.
• Asthma.
• Left side sinus complications.
• Disturbed sleep.

Of course, we now know that the “growing pains” and “asthma” were bullshit. The sinus complications and disturbed sleep were symptoms of her current illnesses. But everything was either misdiagnosed or dismissed as nothing. The reason? A working class, council estate mother with the wrong postcode ‘didn’t know what she was talking about’ in the eyes of the middle class, medical professionals of the elitist London borough of Bromley.

Aged five, Nic developed Alopecia, possibly the areata type owing to the autoimmune implications, although we don’t know. Her GP at the time told her mother this was due to her “being jealous of the birth of her brother”. Again, we now know differently. It was probably the first sign that her immune and autonomic systems weren’t what they should be.

And so, this constant dismissal, disbelief or downright disinterest in Nic’s health has continued along the lines of her early medical experiences.

Other early symptoms included Nic’s proficiency at karate – she was extremely flexible. Also, she used to wake up in the mornings with unexplained bruises. Her grandmother noted how she used to move a lot sometimes during the night, ‘like she was playing karate in her sleep’.

A complex history

I’m not going to write paragraphs on her medical history. Putting it in bullet points is easier for you to read. So, here it is:

• Suspected viral Meningitis aged 11 years.
Pityriasis Rosea (a viral infection) aged 12 years.
• Put on the contraceptive pill aged 13 years (came off aged 18) for the regulation of heavy, irregular periods. She was not sexually active until she was 16.
Glandular Fever (a viral infection) aged 17 years.
CIN 11/111 (pre-Ovarian cancerous cells, possibly viral) growths removed aged 19 years.
• Birth of first child aged 20 years.
• Suspected H1N1 virus (Swine Flu) aged 23 years.
• Fetal loss at 20 weeks aged 26 years.

Now, while none of the above may not seem out of the ordinary to many people (maybe  rather upsetting and a lot to deal with) for Nic all of it was. Because when looked at as a whole, they show the patterns emerging of what we now know are her underlying diseases and illnesses.

Downward spiral

She was a very fit and healthy child until she caught Meningitis. After that, she never fully recovered and her energy levels were never restored. She used to have days off from her Grammar school (going there is a whole other story) due to exhaustion. She had to give up karate. But apparently there was nothing wrong.

The same thing happened after the Glandular Fever, which hit while she had what the ‘system’ would consider a ‘good job’ in the City. She was again left in an even worse, permanent state of health than after the Meningitis.

And repeat this process after the birth of her first child. It was then she was completely destroyed, and the extent of her ill-health became apparent.

She was constantly fatigued. Her muscles and joints ached all the time, with subluxations (partial dislocations). She had dizzy spells. She had periods of extreme vomiting. Her digestive functions resembled that of someone with Irritable Bowel Syndrome. She had partial incontinence. Pins and needles and spasms plagued her body. She was also having the seizures. Her cognitive ability was severely impaired.

But, according to the medical profession, social services and the Department for Work and Pensions, this was ‘all in her head’. Apart from a diagnosis of Temporomandibular Joint Dysfunction they all said she was experiencing this because, essentially, she was a hypochondriac and depressed. Now, her symptoms may be labelled as “functional“, or as is becoming more fashionable in junk pseudo-science and psychology circles, “somatic“. That is, stress, anxiety or trauma trigger actual-body responses. However you dress that bullshit up, it’s still someone saying to you “it’s all in your head”.

What followed is absolutely shocking.

A low is reached

Nic’s first concern over her health was that she felt she was not looking after her young son as well as she should be. For example, she was not waking up when he was crying. So, couple that with domestic violence from the father, and she went to social services for help.

Because no medical professional was believing her, she had no proof she was unwell. Also, there were external forces influencing people within social services. In the end, despite her desperate pleas for help, Nic was sectioned in 2008 under the Mental Health Act, as social services essentially said her desperation about her health amounted to her being mentally unstable.

Funnily enough after nine days in a secure unit, where another patient tried to stab her, she was released with a clean bill of mental health just hours before the tribunal over her sectioning was due to be heard.

So, with mental health effectively ruled out as a cause of her illnesses, Nic began the long road of finding answers to her health chaos. Along the way came homelessness, a two-year court battle for custody of her child, hate crimes, discrimination and misogyny. But that’s all for another article.

First diagnosis…

Eventually, after continued dismissal by the medical world, she was given a diagnosis of Fibromyalgia in 2010. In 2011, she was told she had Polycystic Ovary Syndrome along with Epilepsy (only after her seizures were finally witnessed). For this she was prescribed Lamotrigine. When she fell pregnant with her daughter, her GP told her to come off it immediately. We now know this most likely caused her fetal loss, as she probably had a seizure.

Test, after test, referral after referral and consultation after consultation followed for the next six years. All came back showing nothing particularly abnormal apart from odd bits here and there, which weren’t taken seriously.

During this time Nic was researching for herself, and came across something called the Ehlers-Danlos syndromes (EDS). These are genetic connective tissue disorders, where none of the collagen in your body works properly (eg, the flexibility she had as a child would be due to lax ligaments and muscles). She believed she matched the criteria and finally find a consultant who agreed. So, the path to an EDS diagnosis began.

Also while all this was going on, Nic developed an acute social and class consciousness, joining and becoming active in both the Green Party and campaign group Disabled People Against Cuts (DPAC). Then, in 2016, she also met a certain notorious journalist from The Canary news site…

Part two of Nic’s story is here:

https://mrtopple.com/2019/03/08/a-video-i-released-only-tells-part-of-the-story/

Most of Nic’s medical treatment is now private. If you want to support us on this journey, or if you like my writing, any gifts are gratefully accepted. Thank you.
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Me and Nicola in 2017

Why I’m giving up writing. For now.

Hi to everyone reading this.

Further to a discussion with the Canary leadership team I have an announcement to make.

From Friday 8 February I am formally not writing on a regular basis for The Canary anymore. I will be continuing to do the podcast weekly and accompanying music features.

The reasons for this are complicated – but actually very simple. My partner Nicola is chronically ill, as many of you know. Before we got together she had previously been told her illnesses were ‘all in her head’ and mental health-related, even to the point that professionals sectioned her under the Mental Health Act when she was desperate for support. She was not living with any mental health issues. When we met she had been given a Fibromyalgia diagnosis (which, in my opinion, doesn’t exist – it’s a parking diagnosis/bullshit illness when there’s actually other things going on).

Since we met, and pushed the medical profession to take her seriously, she’d now living with:

►Hypermobile Ehlers-Danlos/Hypermobility Spectrum Disorder.
►Myalgic Encephalomyelitis (ME).
►Postural Orthostatic Tachycardia Syndrome (POTS).
►Polycystic Ovarian Syndrome.
►Non-epileptic tonic clonic seizures.
►Deformities in her left foot and leg.
►Suspected Craniocervical Instability.

There has been a noticeable worsening in her overall health over the past year, and the time for pussy-footing around this has ended.

The long and the short of it is we have taken steps, many through the private health route because the NHS is essentially useless, to begin trying to improve these conditions. Some of these have treatment options if you ignore the politically and corporate-motivated mainstream medical profession. Because essentially under the NHS, Nicola has already exhausted NICE recommended treatments, all having proved ineffective.

She has given up parental responsibility for her son for a period of time, as she is too unwell to give him the support he needs. Plus he has witnessed her ill-health from a young age and it will give him some much needed respite.

But for me, the current situation with my writing for The Canary and Nicola’s health is unsustainable. I cannot write the amount I need/want and give her the support she needs to try and improve her health. One thing had to give – and if push comes to shove it will be work.

So, to that end, I am stopping writing for a period of time.

Nicola needs my full support, and that’s what she is going to get, regardless of my ‘career’ (which many of you know was never a planned move by me, it just fell into my lap by accident, so I’m not precious about it). I have essentially been performing the role of a full time carer for over a year. I have to cook every meal, do the housework, arrange Nicola’s appointments, support her travelling to them, speak on her behalf at them, manage our finances, supervise her with a complex range of tablets – all of this while also writing around 15 articles a week, recording and editing a podcast on my own, recording the Topple Galloway show, caring for a 12-year-old child and supporting my mother who has dementia.

I am confident in both mine and her strength and abilities, but also those of the medical professionals we are now dealing with, that we now have some of the right diagnoses. But I’m also now focused on trying to improve her health if possible.

If this does happen, she can start to live her life properly for the first time. As I think with all impairments and illnesses, she has the right to do whatever she wants with her life without any pressure or anyone telling her what to do. To that end, once her health is improved, I’ll be returning full time to allow her to follow whatever paths she chooses in this world, without the pressure of the system and state telling her she has to find work. She has sacrificed enough, and been appallingly treated over the years, that she deserves to be as free as she wishes from the shackles of this disgusting system we live under.

So, that’s it. If you have story ideas please email editors@thecanary.co but I’ll still be about on social media, so feel free to tag me in things/DM/whatever.

There are a few people who I’d like to thank for the support – but they’ll know who they are. There are others who I’d like to extend a ‘fuck you’ to, as many people and groups have essentially dropped Nicola like a hot potato or betrayed her when she needed them most. As Mariah Carey said in the song Petals:

So many I considered closest to me

Turned on a dime and sold me

Out dutifully

Although that knife was chipping away at me

They turned their eyes away

And went home to sleep…

Please feel free to donate so I can continue to maintain this site.

Sending love and solidarity to those that deserve it.

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One letter details the fierce opposition to another of Theresa May’s government appointments

PRESS RELEASE:

Over 65 Deaf and Disabled People’s Organisations, campaigners and mental health professionals have signed a letter opposing the appointment of Professor Sir Simon Wessely to lead the independent review of the Mental Health Act as announced in Theresa May’s speech at this year’s Conservative party conference:

“Dear Prime Minister,

We are writing to urge a reconsideration of the decision to appoint Professor Simon Wessely to lead the independent review of the Mental Health Act as announced at the Conservative Party conference on 4 October 2017.

A review is needed to address mental health injustice, yet Wessely’s body of work on ME (or “chronic fatigue syndrome”) demonstrates his lack of honesty, care and compassion for patients. His unsubstantiated claim that ME is driven by “false illness beliefs” has led to patients being labelled as hypochondriacs, treated with contempt by some in the medical profession and stigmatised by society. His recommended treatment regime of Graded Exercise Therapy caused deterioration in function for nearly 50% of ME patients surveyed, yet he dismisses their evidence as unreliable and labels all critics of this work as irrational and extremist.

He continues to defend the notorious PACE trial, a study into treatment for ME/CFS part-funded by the Department for Work and Pensions and widely condemned by academics for misuse of statistical methods in order to produce positive-looking results.

Wessely’s work on ME led him to play an active role, alongside insurance industry professionals, in devising the theories of “malingering and illness deception” which underpinned the Work Capability Assessment. The WCA has had a catastrophic impact on the lives of disabled people. Wessely is resoundingly unfit to lead an inquiry into mental health injustice.

The appointment of Wessely underlines our fears that under the wrong leadership, the review and any subsequent changes to the Mental Health Act will worsen rather than alleviate the current mental health crisis. We urge you to rethink this decision.

Yours sincerely,

Linda Burnip

Co-founder, Disabled People Against Cuts

Denise McKenna

Mental Health Resistance Network

Andrew Samuels

Professor Andrew Samuels. Former Chair, UK Council for Psychotherapy.

Anne Novis

Chair, Inclusion London

Rich Moth

Social Work Action Network national steering committee

Caroline Collier

CEO, Inclusion Barnet

Simon Duffy

Centre for Welfare Reform

Tara Flood

CEO, Alliance for Inclusive Education

Cathy Maker

Director, RUILS

Kamran Mallick

CEO, Disability Rights UK

Emily Morton

Chief Executive, Disability Sheffield

Kathy Bole

Chair, Suffolk Coalition of Disabled People

Caron Blake

Manager, Greater Manchester Coalition of Disabled People

Dr Jay Watts

Clinical Psychologist and Psychotherapist

Bea Millar

Person-Centred Therapist

Richard House

Chartered Psychologist and Mental Health Activist

Paul Atkinson

UKCP Psychotherapist

Joyce Kallevik

Director, Women in Secure Hospitals

Eamon Andrews

Communications and Project Officer, Shaping Our Lives

Ellen Morrison

Branch Secretary South East London Unite Community

Andrew Lee

Director, People First

Phil Gosling

Secretary, Regard

Ian Parker

Psychoanalyst, Manchester

Helen Ridett

Nurse and GMB workplace organiser

Alec McFadden

Press Officer Salford TUC

Claire Glasman

WinVisible (women with visible and invisible disabilities)

Ariane Sacco

WinVisible

Rev. Dianne Scott-Fowler

Chairperson, Stockport User Friendly Forum

John Pearson

Solidarity Drop-in Stockport

Ron Alexander

Life President, Dial Southend / Southend shop mobility

Christina Young

Mental health activist, Liverpool

Ellen Clifford

Croydon DPAC

Miriam Binder

Chair, Brighton DPAC

Paula Peters

Chair, Bromley DPAC

Nicola Jeffery

National Steering Group, DPAC

Andy Greene

National Steering Group, DPAC

Anita Bellows

National Steering Group, DPAC

Andy Metcalf

Mental Health Activist Alliance

Michael Harrison

Branch Secretary North East Wales Unite Community

Andy Mitchell

Branch Secretary Somerset Unite Community

Trevor Bark

Branch Secretary Durham Unite Community

Bernie Stock

Branch Chair Durham Unite Community

Zarria Phillips

Branch Chair Bristol Area Unite Community

Rachel Holmes

Branch Secretary Herts & Beds Unite Community

Kate Hyndley

Industrial Liaison Officer South East London Unite Community

Hillel Friedman

Treasurer Norfolk Unite Community

Joan Twelves

Co-chair Lambeth & Southwark Unite Community

Geraldine Murray

Norfolk Unite Community

Ian Nottage

Herts & Beds Unite Community

Carl Backland

Camden Unite Community

Amy Broad

Branch Chair, Peterborough, Chair Fenland & Kings Lynn Unite Community

Susan Pashkoff

Branch Chair East London Unite Community

Amina Mangera

Branch Chair South East London Unite Community

Jacqui Burnett

Diversity Officer Herts & Beds Unite Community

Bernard Miller

Co-Secretary Camden Unite Community

Claudia Dias Ferreira

Co-Secretary Camden Unite Community

Rebecca Rocket

Essex Unite Community

Susan Hagley

Suffolk Unite Community

Rob Lugg

Branch Secretary South West London Unite Community

Robin Sivapalan

Branch Secretary Brent Unite Community

Fred Coford

Islington Unite Community

Sarah Matthews

Branch Secretary Suffolk Unite Community

Martin Beverich

Herts & Beds Unite Community

Steve Ballard

Equalities Officer Haringey Unite Community

Kate Hodgson

Islington Unite Community”

 

“So listen to me well, Labour Party, because if you get this wrong again you will be done for, once and for all”

The below is a response from a lady called “Annette”, to an article by former Scottish Labour MSP Richard Baker entitled “Separation is not the answer” (to Labours woes).

The piece originally appeared on http://www.labourhame.com, and was brought to my attention by . The original article can be found here: http://www.labourhame.com/separation-is-still-not-the-answer/#comment-128724

Breathtaking.

I am so tired of the word “nationalism” being branded about by Labour. And, ooh, they inserted the word “patriotic” in their constitution, how quaint. Personally, I don’t give a toss about patriotism and nationalism. I am an EU citizen living in Scotland and I voted YES because it is my firm belief that every country has a right to political self-determination and should not be ruled by another country. This is something that I suspect most Labourites would in theory agree to, because it makes them sound noble, but when applied to Scotland, they suddenly get a hissy fit at the notion of someone “wanting to break up our country.” The only explanation I can find for this behaviour is that they believe Scotland is not a country.

I’m going to help you out here, Labour, because I have watched your decline for a long time and it seems clear that you have not the foggiest idea where you have gone wrong. That is why almost everything you did to improve your prospects has only made things worse. So let me try to explain, and let me tell you in advance that everyone I have spoken to over the last few days agrees with me. Not because I am so super-clever, but because it is blatantly obvious. Only Labour seem to be unable to see it.

Forget Blairism. The con Blair pulled off worked once, but it will not work again in our lifetime, because there are things people don’t forget. Blairism gained Labour the support of a certain number of swing voters and that helped you as long as your core supporters loyally stood by you. Whatever made you think, though, that you could give up the goals and values of your real clientele and that nevertheless they would keep voting for you indefinitely? Sure, many people feel loyal to a party and are patient with it, and there is a certain inertia that needs to be overcome before some voters desert their traditional party. But if that party continually fails to represent their supporter’s interests, these supporters will eventually walk away. The sentence I heard again and again and again these last few months was this: “I have not left Labour, Labour have left me.” That is the core of the problem.

So listen to me well, Labour Party, because if you get this wrong again you will be done for, once and for all: Don’t try to appeal to Tory voters. Tory-leaning voters might vote Labour as a one-off protest vote, but by pandering to them you alienate the people who are your natural clientele. For a few years that might work out, but eventually the Tory-leaning voters will return to the Tory fold and your own supporters will decide you’re just not worth it anymore. If they have any sense, they’ll move on to the Greens, and if not, there’s always UKIP. If they feel seriously conflicted, they might just stay at home and not vote at all. In Scotland, they have serious alternative now. In any case, you’re unlikely to gain back their trust as long as you present yourself as a paler copy of the Tories. Nicola Sturgeon did give you the heads-up in the leadership debate. She said that of course there is a difference between Tories and Labour, but the problem is that the difference is not big enough. It is nowhere near big enough.

There are several ways in which this failure to be properly Labour instead of Tory-lite has played out.

1. You have failed to be an effective opposition. Instead of challenging the Tories’ brutal austerity policies, their hair-raising incompetence with the economy, their blatant favouring of the rich elites, you have done little else than bicker about details. You have allowed the electorate in England and Wales to believe against all evidence to the contrary that the Tories are basically right. You voted with them for more austerity cuts. You voted with them for Trident renewal. You voted with them for more foolish military interventions in the Middle East, even though you must know by now how the Iraq War has damaged you. You abstained from the vote on the fracking moratorium which would have succeeded had you not been so cowardly. You have not been a counterweight to the nasty coalition, you have enabled them.

2. You have allowed the Tories to determine the political narrative. Instead of countering their agenda with your own agenda, you kept telling us you would do much the same as the Tories, only in a nicer way, and you deluded yourself that this would keep everyone happy. All this nonsense about cutting the deficit by slashing public services and restricting government spending, when it is standard textbook economy that in times of recession the government must increase spending to help the economy recover – you could have called the Tories out on this, you could have presented the figures of how the Tory approach had made the economy much, much worse. Why did it have to be Nigel Farage of all people who pointed out in the leaders’ debate that the Tories had doubled the national debt? That would have been your role, you should have hammered this message home relentlessly instead of letting them get away with their ludicrous claim that they had fixed the economy. You even allowed UKIP to set your agenda: Instead of making it clear, like Natalie Bennett and Leanne Wood and Nicola Sturgeon did, that immigration really, really isn’t a relevant problem, you went about printing “Controls on immigration” on mugs and even inscribing it on your ridiculous monolith.

3. Instead of fighting the Tories, you fought your potential allies. This wasn’t so disastrous in the case of the Greens and Plaid Cymru, given their small numbers, but I will say that having a big campaign to unseat Caroline was not only mean-spirited but stupid; those resources should have gone into targeting a Tory seat. However, it was your treatment of the SNP that might well have cost you the election. Again, you let the Tories determine the narrative. They crowed about a constitutional crisis, about a second referendum which neither the SNP nor the wider YES movement are seeking within the next few years anyway, about “breaking up our (sic!) country,” about chaos and nationalism and England being held to ransom. They and their compliant media outlets abused the SNP and the people of Scotland on a daily basis in the most despicable terms. And all you did was parrot them. Nicola Sturgeon could not have held out her hand any more sincerely, and yet you sneered at it.

What you could have done, should have done, was to challenge the Tory narrative. The SNP have been riding sky-high in the polls since September; and you had known for months that you could only form a government with their help. Plenty time to come up with a constructive strategy. You could have pointed out that the SNP are a moderate party of the centre left. You could have pointed out that they have a track record of eight years of competent and sensible and not-at-all-outrageous government in Holyrood. You could have pointed out that they stood for the kind of temperate progressive policies that many, many people in England would have been delighted to see. You could have pointed out that in no imaginable universe would even 59 SNP MPs be able to call the shots in a 650-strong parliament; that you would always be the boss in any kind of arrangement. You could have thrown all your might into convincing the English electorate that a Labour/SNP team effort would be good for the whole of the UK, as it undoubtedly would have been. Instead you declared a week before the election on national television that you would rather see the Tories return to power than work with the SNP. The stupidity of this is mind-blowing. And all under the banner of “not working with a party that seeks to break up the UK.” Tell me, what is your deal again with the SDLP, a party that seeks to unite Northern Ireland with the republic? You don’t even field candidates against them to give them a better chance? If you can work with them, why not with the SNP? But even today you still harp on about “nationalism” when in fact what the people of Scotland have opted for is the moderate social democratic policies which you should have offered but didn’t.

4. Having alienated your core supporters and turned your back on your potential allies, and with no progressive track record as an effective opposition to show to the electorate, you have based your election campaign on sound bites, PR stunts and silly gimmicks. Just after Nicola Sturgeon presented her gender-balanced cabinet and promised to work tirelessly on shattering the glass ceiling, you insulted the women of the UK by inviting them to talk “around the kitchen table” about “women’s issues,” proudly brought to us by a pink van. And you didn’t see it coming that people would call it the Barbie Bus and laugh it out-of-town? You allowed Jim Murphy to run amok in Scotland with one insane “policy announcement” after another – remember the “1000 more nurses than anything the SNP promises?” Why not promise weekend breaks on Jupiter for the over 65s? You wheeled out Gordon Brown at random intervals to make meaningless promises and you expected people to be swayed by the pledges of a retiring back bencher? You had some wishy-washy election promises carved in a massive gravestone and you thought that was a good idea?

Yours was a hopeless, hopeless campaign from beginning to end, without vision, without structure, without conviction. And yet I, like so many, clung to the hope that surely people in England must be so fed up with the Tories by now that they’d vote for you anyway and that surely once the election day dust had settled you’d see sense and head a progressive alliance with the SNP, SDLP, Plaid Cymru and the lovely Caroline Lucas who is worth her weight in diamonds. We could have turned things around for the good of the many rather than the few. Instead the Tories now have carte blanche to suck dry the people of the UK and grin smugly while they feast on our bones. All thanks to you, Labour Party. Now get your act together and make sure this will never happen again. I cannot spell it out any clearer.”

About

Steve Topple is an independent journalist and broadcaster.

He specialises in issues surrounding disability, health, housing, class, economics and government. ‘Mr Topple’ is also now making waves as an innovative music journalist, breaking the mould in terms of his approach to the industry.

Permanently based at The Canary as a broadcaster and writer, he has frequently contributed to the Independent (having covered Prime Minister’s Questions on a weekly basis for them for a time), the CommonSpace, Morning Star, openDemocracy, Red Pepper, Occupy and INSURGEIntel. He can be seen/heard as a regular commentator on RTUK, Al Jazeera and talkRadio, and has appeared on BBC2‘s The Mash Report.

He launched the Topple Galloway Show with George Galloway on Patreon in 2018, and is a regular news reviewer for Going Underground. He also now has a weekly podcast for The CanaryTopple Uncaged – and has begun writing for New Internationalist.

Currently, he has also branched out into medical and science investigatory journalism, having direct personal experience of this with his partner Nicola Jeffery.

Follow him on Twitter @MrTopple

Commissions welcomed – contact via Twitter.

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