Nicola’s Story
Big Pharma and the NHS: a 746% price hike for a disabled person’s vital medication leaves her without it
The one tablet in this article’s main picture used to cost 35p. It now costs £2.66. So, for just five-days worth of medication (eight tablets a day) the cost is now over £112. It was £15. That’s £672 a month – from £90. Welcome to the corrupt world of ‘Big Pharma’ and its extortion of the NHS.
The true cost of medication
Valaciclovir is an antiviral drug, most commonly used to treat the herpes family of viruses. It’s what my partner, Nicola Jeffery, is currently taking to treat her myalgic encephalomyelitis, commonly known as ME. It’s for this which the cost has rocketed.
Price rises for medicines under the NHS are not unusual. This is because pharmaceutical companies often increase their prices, which then has a knock on effect on the health service’s costs. As The Lowdown noted:
in 2017/18 the overall drugs cost at list price in the NHS, before any discounts, was £18.2 billion.
This is an increase of 4.6% from £17.4 billion in 2016/17 and an increase of 39.6% from in 2010/11.
Branded (patented) medicines are allegedly “protected” by a voluntary code of conduct between big pharma and the NHS. This stipulates that companies cannot put the price of medicines up by more than 2%. If they do, then they have to pay the NHS the difference back. In Nic’s case, the branded version of valaciclovir is Valtrex, of which the cost is already high.
But there’s a catch with this price control: it doesn’t cover generic medication.
What price control?
As The Lowdown also noted:
Generic medicines, those that are not protected by patents, are not covered by any price control scheme. UK governments have relied on market competition to control the prices of these products. This has worked to a large extent, generic versions of best-selling branded products are sometimes 90% cheaper than the original branded products.
In Nic’s case, this is valaciclovir, which has several different manufacturers. The Lowdown continued:
There has been a problem, however, with relying on market competition. Although a product may be old and produced as a generic, it will not necessarily have many or in some cases any competitors on the market. Some manufacturers took advantage of this situation and hiked the price of a generic product year-on-year knowing that there could be no comeback.
An article in Pharmaphorum reported that dramatic price increases included the anti-epilepsy drug phenytoin sodium, the price of which was reportedly increased by up to 2,600%.
It is this brazen and nefarious profiteering which has hit valaciclovir.
Rampant profiteering
In short, there is a supply issue at present – most likely due to the coronavirus pandemic and knock-on supply issues from China (along with some political tensions, too) Knowing that, the big pharma manufacturers have forced the price of it up – as I said, by 746%. And it’s the same profiteering which allowed prices of paracetamol to shoot up at the start of the pandemic – along with valaciclovir’s also beginning to head skywards.
What is unusual is that most patients wouldn’t notice, because of the fixed price of an NHS prescription. But because Nic’s treatment is private, we’ve been directly hit by this croniest of corporate capitalist phenomenons. And her valaciclovir is probably the most important medicine she currently takes.
15 conditions
She lives with 15 different illnesses and conditions. You can read more about that here. But sadly the UK’s public health service doesn’t treat many of these. Some of the ones it either doesn’t deal with, or doesn’t treat correctly, are ME and:
- Hypermobile Ehlers-Danlos syndrome (hEDS), which has led to craniocervical instability (CCI) and atlantoaxial instability (AAI).
- Mycotoxicosis [pdf doc].
It’s the ME which we decided to tackle first. Please note that this is not chronic fatigue syndrome (CFS), which in ours and other people’s opinions is a separate illness.
She’s been under the care of the amazing Dr Sarah Myhill for nearly a year and a half. It’s been a long battle: changing diet (from a corporate, glycolysis-based, Western carb and sugar-heavy one to a paleo-keto, fat burning regime); taking a huge amount of tablets and oral solutions (a mixture of vitamins, minerals, hormone replacements, metabolic enhancers, amino acids, enzymes and herbal remedies) and full-time clinical monitoring from me – including a daily medical diary, blood pressure, heart rate, temperature, SpO² levels and perfusion indices.
The first baby steps
As I previously wrote:
We are confident this regime will resolve Nic’s ME. We’re loathed to go into detail until the course is over, but suffice to say the signs so far have been good.
What we can say is that she was living with polycystic ovary syndrome, first diagnosed in 2009. But since starting Dr Myhill’s regime, this has been completely cured. Effectively, the regime for ME has also cured this other illness.
The NHS, meanwhile, says polycystic ovary syndrome “cannot be cured”. We think we know why it has with Nic, and it is absolutely unbelievable when compared to what the NHS offers for those living with it.
We can also now say that Dr Myhill has already resolved some of Nic’s underlying problems. For example, much of her dysautonomia has gone.
Making progress
Her core temperature, which used to fluctuate by up to 1.7°c a day, has now stabilised to a 0.3-0.5°c variation. Bowel function is now regulated – before she could go at least three days without movement; now, she’s almost regular as clockwork every morning. The seizures which plague her have reduced in frequency. Her blood pressure, which used to be constantly hypotensive, is rising. She now sweats normally (before, barely sweating at all). Muscle cramps have gone, and lingering pain from physical exertion (for example, lumbar pain after being upright all day or walking) no longer lasts into the following day. And her bouts of insomnia and disregulation of the wake/sleep cycle have all but vanished.
Central to all this has been Dr Myhill’s vast treatment plan. But crucially, so has the valaciclovir.
Studies into valaciclovir
Several studies (one spanning six years) have shown it to be effective in treating ME. But the criteria was fairly strict: there had to be a proven history of infection with Epstein Barr virus (EBV, more commonly known as glandular fever), cytomegalovirus (CMV) or one of the herpes viruses. This was done by showing antibodies in a person’s blood. But we went further than that.
Nic has had a bone marrow aspirate and a trephine biopsy, which showed EBV and CMV immunoglobulins present (EBV in the highest concentration). We also know she has had either HHV6 or HHV7 (as she had pityriasis rosea as a child).
Further to this, she had advanced flow cytometry testing (one of only a handful of people with ME in the world to have this done), which showed her body was on a three times higher immune response than the general population; specifically reacting to a virus. But crucially, there was no viral pathology present in her blood stream. In other words, her body was trying to fight a virus that seemingly wasn’t there.
There’s no clear reason why valaciclovir works in ME. But I have a theory: I think the EDS caused her ME.
My theory? EDS causes ME
All cells have a protective surrounding environment. This is called the extracellular matrix. It is made up of a lot of collagen. Because Nicola’s collagen is faulty, this has made her extracellular matrix weak.
When she has had viral infections, the viral genomes (the part of viruses which are their genetic coding bit) don’t just attack the major parts of her body. Because of the weak collagen, they have been able to get right into her cells and into their nuclei more easily than in most people. Here, they reproduce their genome constantly.
When a cell is infected with a virus, it warns the body by producing specific molecules (called class I major histocompatibility complex proteins, or MHC class 1). Cells release these onto their surface. The immune system knows there’s a problem because these MCH’s have viral material in them. So, the body can fight the virus.
It’s all about the collagen
But with Nicola, because of her weak collagen the MCH’s cells’ release is faulty (it’s all about peptides, which are amino acids made up of collagen). The immune system is not sure if there’s a virus present in her cells. So, it fights the virus in the obvious places like the bloodstream. But it doesn’t kill it in the nuclei of her cells. Here, it keeps replicating and therefore never leaves – hence the body’s constant immune response, and hence the symptoms of ME like post-exertional malaise (PEM). A similar theory is already being recognised in coronavirus patients, who still haven’t recovered from the virus months later.
Studies have already shown [pdf] or questioned the high prevalence of ME in EDS/connective tissue disorder patients. Anecdotally, speak to people in both communities and the dual diagnosis appears to be common. And I think my hypothesis above would go some way to explaining it. I’m more than happy to discuss this with anyone: I’m not a virologist, immunologist or microbiologist. I am a deeply concerned partner first, and a nosy journalist second.
This theory is where the valaciclovir would come in, and why it would work. But probably only in Nic’s and other EDS patient’s cases with Dr Myhill’s regime in full play.
A complex solution
The active ingredient of valaciclovir is aciclovir. As ScienceDirect noted:
The mechanism of antiviral activity consists of its [aciclovir’s] transformation to triphosphate and subsequent inhibition of viral DNA synthesis. Its action is highly selective. Acyclovir diffuses into the cell infected by a virus and phosphorylates thymidine kinase of herpes simplex to a monophosphate. Uninfected cells do not use acyclovir as a substrate. The monophosphate is subsequently transformed to a diphosphate, and then a triphosphate, which inhibits viral DNA polymerase, as well as viral DNA, where it acts in the process of breaking the chain, thus preventing further elongation of the DNA chains and correspondingly, replication of the DNA virus.
In short, acicilovir stops viruses replicating. On the face of it, this shouldn’t work in Nic – because it doesn’t solve the problem of her body not knowing that the virus is deep in her cells in the first place. But it will work, for several reasons: not least because of Dr Myhill’s full regime putting Nic’s body and immune system in the best health possible, and also because the dose is so high (4g a day is getting towards the dose used in post-operative patients at risk of CMV) that her body is being flooded with aciclovir. Standard doses are one to two grams, but only for a matter of days. Nic has been on valaciclovir for eight months, now.
When most ME patients try and fail with antivirals, their bodies are already on a weak footing: diet is probably Western, carb and sugar heavy and poor; energy delivery mechanisms are weak; deficiencies high; other illnesses (like mycotoxicosis) have probably been left undiagnosed, and overall their bodies are under strain. Dr Myhill’s regime (yes, of 82 tablets and nine oral solutions a day at one point) is torturous. But it’s already yielded results – and we believe it is what will make the valaciclovir work.
Unlike most ME patients, whose illness and severity of symptoms is based around clinical presentation, we’ll be able to prove whether Dr Myhill and the valaciclovir have worked at the end of the process – as Nic will repeat the advanced flow cytometry testing.
So, we need to finish the course of it. And unfortunately, there is no substitute.
No other option
The other available treatment is straight aciclovir. This is infinitely less expensive, currently listed on the NHS British National Formulary (BNF) page as being around £4.50 a box. But it’s not as straightforward as that.
Valaciclovir has a mean bioavailability of around 54.2%. This means that for every tablet taken, the body absorbs 54.2%. So, on Nic’s current dose of 4g a day, she gets 2.1g of aciclovir. But the straight tablet form of aciclovir has a mean bioavailability of 17.5%. This means, by my calculations, she’d need to take around 12g a day to get the some dose as valaciclovir.
That is impossible to administer; not least because her kidneys would not cope with having to process that level of chemical. Moreover with aciclovir, as the dose increases the bioavailability decreases. So, she’d have to spread a minimum 15 tablets (based on 800mg per tablet) out across the day; one every hour.
In May, we got her down to 56 tablets a day, after she was on 82 for six months. Having to add another 7 into the mix (8 of her current tablets are valaciclovir) and spread them out hourly is not fair on her. But overall, switching to aciclovir would be pointless – and ultimately jeopardise her treatment; a clinical plan that’s been in place for nearly a year and a half.
Please help
I refuse to let Nic falter at that point. It’s has been the hardest one and a half years of both our lives, in many respects. And to have got this far only to be forced to give up – not through fault of our own, but because of a system that would happily see us fail in the first place – is not happening.
So please – if you can help towards the cost of Nic finishing her treatment, then donate if you can via http://www.paypal.me/NicolaCJeffery
Thank you for reading and for the anticipated support.
Our house has poisoned our son. We now need your help to treat him.
My partner’s son has just been diagnosed with one of the same diseases she has. It’s come directly from our social housing, through no fault of our own.
So, we’re having to pay for his treatment. And sadly we need your help to try and get him well, as the NHS don’t deal with it. While this illness is not even recognised in the UK, it could potentially affect millions of people.
Rampant chronic illness
My partner Nicola Jeffery is chronically ill and disabled. In short, she lives with:
- Hypermobile Ehlers-Danlos Syndrome (hEDS).
- Myalgic Encephalomyelitis (ME).
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Deformations in left foot, left leg shortness.
- Temporomandibular Joint Dysfunction.
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Hypotension.
- Megaloblastic Anaemia.
- Peripheral Neuropathy.
- Mycotoxicosis.
- Gastroparesis and Dumping Syndrome.
- Non-epileptic tonic clonic and focal autonomic impaired awareness seizures.
Many of these are not recognised on the NHS. So, we’ve had to see private medical professionals to get her treated. Some of this was funded by my mother. Other aspects, like the ME, have been paid for by crowdfunding and donations from friends and the public. We are very grateful for this. You can read more about that, here.
But we now have confirmation that Nic’s son (called Lil Man in this article) lives with one of the diseases she does. The problem is, again, the only treatment available for it is via the private sector.
Please continue reading below to find out more about this. But if you can help with the £1,500 cost of Lil Man’s treatment you can donate via:
http://www.paypal.me/NicolaCJeffery
Mycotoxins
Mycotoxins are secondary metabolites given off by mould and fungi. They cause disease. As the World Health Organisation (WHO) wrote [pdf]:
Mycotoxicoses are diseases caused by mycotoxins, i.e. secondary metabolites of moulds. Although they occur more frequently in areas with a hot and humid climate, favourable for the growth of moulds, they can also be found in temperate zones.
Exposure to mycotoxins is mostly by ingestion, but also occurs by the dermal and inhalation routes. Mycotoxicoses often remain unrecognised by medical professionals, except when large numbers of people are involved.
There’s a lot of literature on illness caused by eating mycotoxins. 25% of our agricultural products are infected with them. Interestingly the UK government recognises this. There are laws in place surrounding the levels that the Food Standards Agency (FSA) permits in products. It’s website notes that:
Mycotoxins can cause a variety of adverse health effects in humans including cancer (some are genotoxic), kidney and liver damage, gastrointestinal disturbances, reproductive disorders or suppression of the immune system. Antitoxins are the most harmful type of mycotoxin, they can potentially cause cancer or problems with digestion, reproduction or the immune system.
But what’s not even recognised in the UK is the impact of mycotoxins from damp and mould in buildings. And potentially, this could be making millions of people ill. Yet no one wants to talk about it.
The health risks
As a US government research site noted, symptoms of Mycotoxicosis include, but aren’t limited to:
fatigue, neurocognitive symptoms, myalgia, arthralgia, headache, insomnia, dizziness, anxiety, depression, irritability, gastrointestinal problems, tremors, balance disturbance, palpitations, vasculitis, angioedema, and autonomic nervous system dysfunction.
Specific conditions include:
infections and mycoses, chronic and fungal rhinosinusitis, IgE-mediated sensitivity and asthma, other hypersensitivity reactions, pulmonary inflammatory disease, immune suppression and modulation, autoimmune disorders, mitochondrial toxicity, carcinogenicity, renal toxicity, neurotoxicity, and DNA adducts to nuclear and mitochondrial DNA causing mutations. A significant mechanism of injury includes oxidative stress…
A health dead end
Yet when you look for Mycotoxicosis on the NHS website, it doesn’t exist. The nearest thing is Aspergillosis, which is a condition caused by mould but only related to the pulmonary system.
Nic was already under the care of Dr Sarah Myhill. As part of her investigations into Nic’s health she wanted her to have mycotoxins testing.
But, this wasn’t straightforward. Testing for mycotoxins has to be done in the US, with a private UK laboratory acting as a middle man. So, we got the testing done, her results were positive, and she had a six month course of treatment.
We always wanted Lil Man testing as well. So, last month he did the same thing.
US testing results
These were Nic’s results:
To break them down:
- Aflatoxins are from the mould fungi family Aspergillus. Among other things like immunosuppression, they have been linked to an increased risk of liver cancer. Dr Myhill told us it was very unusual to see Aflatoxins present, as they generally are only present in contaminated food in developing and Asian countries.
- Ochratoxin A is from the fungal species Aspergillus or Penicillium. It has been linked to cognitive dysfunction and depression, kidney problems and immunotoxicity, among other things.
- Mycophenolic Acid [pdf, p3] is from the fungal species Penicillium. It is usually found in conjunction with Ochratoxin A. It can cause immunosuppression.
- Citrinin is also from the Penicillium fungi family. It’s effects are similar to Ochratoxin A.
So, these were Lil Man’s results:
As a reference point, a Turkish study found the mean level of Ochratoxin A in the sample population to be just over nine ng/g creatinine. At this level, the study pointed to potential health risks, including oxidative stress. So, both Nic’s and Lil Man’s were significantly higher.
In some respects, Nic’s was more concerning. This is because she already lives with so many underlying illnesses and conditions, that the mycotoxins were just making her so-called ‘viral load’ even heavier. The Ochratoxin A was the most problematic.
Her son’s result was expected. But we didn’t think it would be as high as it was (25.97 for Ochratoxin A versus Nic’s 13.44). Literally, at the top end of the lab’s testing scale. Why was it expected? Because we guessed his bedroom had effectively been poisoning both of them.
Flooding
Around seven years ago there was a flood from the neighbouring property into Lil Man’s bedroom. Our housing association came and tidied up the plaster work, but did not dry the room out. A while later, Nicola noticed the floor boards sinking. So, she called the housing association again.
A contractor lifted up one area and all the floor joists were rotten. But they merely put MDF over one small area, and did nothing else. So, effectively the damp from the flood was left untreated.
Now, there is no visible damp in Lil Man’s room. Meanwhile, there is in our bathroom. So, you’d be forgiven for thinking all was well.
But as part of our investigations into Nic’s health, we went to University College London asking if their civil engineering department could do some tests. At this point we knew her mycotoxins results and wanted to know why the Ochratoxin A was so high; we suspected Lil Man’s bedroom. Because Ochratoxin A specifically comes from water damaged buildings. Also, the Penicillium family of fungi is also commonly found in water damaged buildings. So, two of Nic’s other mycotoxins were explained by this.
Groundbreaking testing
The excellent Dr Yasemin Aktas happily obliged with our request. Her team came and did what’s called a Mycometer survey; something they pioneered. The testing has been approved and is used by the Danish government. Essentially, it measures the levels of mycotoxins in the air and on surfaces.
The team did the whole of our upstairs. And the results were as we suspected: Lil Man’s bedroom was the highest; the readings almost being in the red (toxic) zone. The level’s lowered the further you got away from the wall where the flood was; that is, his bedroom, then the toilet, then the bathroom, then the master bedroom:
So, thanks to both Dr Myhill’s testing and UCL’s survey, we can say very confidently that Lil Man’s bedroom has made both him and Nic ill.
A 13-year-old with chronic illness
His symptoms fit with this. He has:
- Repeated bouts of upset stomachs, juxtaposed with difficulty going to the toilet.
- Repeated chest infections after colds, with coughs sometimes lasting for months.
- Short term memory issues which are very marked; difficulty concentrating and some functional disruption.
- Far more fatigue than should be witnessed in someone his age.
- Skin issues with repeated inflammation, coupled with excessive discharge in his eyes.
We have to get this sorted for him. But because the NHS doesn’t recognise it, we’ll have to treat him privately.
We know straight off this is going to cost, in total, around £1,500. This includes medication and repeated testing at the end of the six month course of treatment.
We’re currently on Universal Credit, with me caring full time for Nic while doing as much work as I can to try and get us off benefits. So – we need people’s help to pay for Lil Man’s treatment.
If you can help towards the £1,500 to try and get him better, please donate via PayPal:
http://www.paypal.me/NicolaCJeffery
But it’s not just Nic and Lil Man who are affected.
Millions at risk
Estimates at the number of renters living in damp or mouldy homes vary. But a study by pest control company Rentokil estimated that 5.8 million people lived in rented (private or social) homes with “damp or condensation” problems. But other figures put it even higher.
On the lower side of estimates, and property investigations service CIT said that 12% of social housing had been subject to a complaint about damp or mould. That around 600,000 homes in the UK. Or, to put it another way, at least one in 10 UK residents (just over one million) who live in social housing have problems with damp, mould and/or condensation. Speaking from personal experience, this is probably a vast underestimate.
In private renting, Shelter estimated [pdf, p20] that 38%, or around 3.42 million, private renters had problems with damp.
So, either way, over 4.4 million renters live in damp or mouldy homes. But, this may be the tip of the iceberg. Because testing for damp and mould in the UK does not factor in mycotoxins; hence UCL’s research is so groundbreaking.
Housing associations: washing their hands?
Mould and fungi give off what’s known as hyphal fragments. These fine bits of the organism travel around the environment, and are one of the sources of mycotoxicosis via inhalation and dermal routes. But even when these hyphal fragments die, they and the mycotoxins in them still remain dangerous.
The point being – Lil Man’s water damaged bedroom came back as ‘dry’, therefore safe and not a problem. This was when our housing association’s surveyor came round and tested it. But UCL’s testing told a different story. Because in layman’s terms the ghosts of the mould and fungi are still there; constantly being moved around from the walls and floor cavities they inhabit.
All this means our housing association will not deal with the issue. We’ve been through all its processes and have reached a dead end. So, we’re still living in a property that is effectively toxic. Our next course of action is to take this to the Housing Ombudsman and politicians to try and get help for us. But we also intend to affect change up and down the country.
A public health crisis
Mycotoxicosis is probably rampant across the UK. But because the NHS, housing associations and government don’t even recognise it, people’s symptoms are probably dismissed as mental health, diet-related or due to their lifestyles. We don’t have enough fingers to count the number of people on our estate alone who have far worse damp and mould than us; have chronic illness but yet are not getting any medical or social support.
There is a public health crisis across the country. Yet no one will admit that it exists.
Spain: the only option when the DWP and NHS abandon you
This is a story we believe many people are living through, right now.
It is sadly a desperate plea for financial help. But it’s more than that. It’s a statement on the position that the Department for Work and Pensions (DWP) and NHS leave hundreds, possibly thousands, of people across the UK in. This is just one example.
My partner has to go to Spain for life changing surgery. But it costs. The initial amount needed to begin the process is £8,000.
You can donate via PayPal at http://www.paypal.me/NicolaCJeffery
Read below to find out why we’re having to do this.
I wouldn’t wish chronic ill health on anyone. But if people could spend a day in my partner Nicola Jeffery’s body, then maybe the world would be a very different place.
She lives with 16 different illnesses and conditions. You can read more about that here. But sadly the UK’s public health service doesn’t treat many of these. Some of the ones it either doesn’t deal with, or doesn’t treat correctly, are:
- Myalgic encephalomyelitis (ME).
- Hypermobile Ehlers-Danlos syndrome (hEDS), which has led to craniocervical instability (CCI) and atlantoaxial instability (AAI).
- Mycotoxicosis [pdf doc].
I gave up work full time to care for her. Since then, the DWP awarded her just the standard daily living component of Personal Independence Payment (PIP). You can read more about that here. We sent them a Mandatory Reconsideration. It’s been 11 weeks and counting for its decision. My claim for Carer’s Allowance has now been seven weeks, complicated by the fact I am self-employed. Because of the waiting on these we cannot apply for any housing support. We are now in a very dire situation with no seeming way out.
A ‘thank you’
We’ve been fundraising to continue Nic’s ME treatment under the care of the amazing Dr Sarah Myhill.
We raised enough to buy the majority of her ME treatment for six months, so thank you. This cost just over £1,800 in the end.
This is just about it, excluding the £500 worth of antivirals and £400 worth of mycotoxins treatment (because both are prescription only):
As an example, this is the cost of six months worth of thyroid and adrenal hormone replacements:
I note some people have said on Twitter ‘why can’t the NHS provide these?’. Firstly, because the NHS repeatedly claimed she had no thyroid issues. This, after proper evaluation, was not the case. Secondly, if it did diagnose it, Nic would be given chemical substitutes, which we do not believe in. The hormone replacements she is on are totally natural (bovine and porcine) – and her blood work has shown they have had the same effect as their chemical counterparts.
We are confident this regime will resolve Nic’s ME. We’re loathed to go into detail until the course is over, but suffice to say the signs so far have been good.
What we can say is that she was living with polycystic ovary syndrome, first diagnosed in 2009. But since starting Dr Myhill’s regime, this has been completely cured. Effectively, the regime for ME has also cured this other illness.
The NHS, meanwhile, says polycystic ovary syndrome “cannot be cured”. We think we know why it has with Nic, and it is absolutely unbelievable when compared to what the NHS offers for those living with it.
Sadly, running parallel to this has been a severe deterioration in her EDS-related CCI and AAI.
‘Rare’, or ‘rarely diagnosed’?
We first discovered Nic was living with these in March. I’d suspected as such, as she was symptomatic of them. So we had a £1,250 upright MRI (not available on the NHS and the only way to properly diagnose the conditions). Then, a Spanish surgeon interpreted the results and confirmed both.
As MEpedia describes, CCI is:
a pathological condition of increased mobility at the craniocervical junction, the area where the skull meets the spine. In CCI the ligamentous connections of the craniocervical junction can be stretched, weakened or ruptured. This can lead to compression of the brain stem, upper spinal cord, or cerebellum and result in myelopathy, neck pain and a range of other symptoms.
CCI usually develops as a result of physical trauma such as a car accident, an inflammatory disease such as rheumatoid arthritis or a congenital disorder such as Down’s syndrome. More recently, physicians have reported an increased prevalence of CCI in patients with hereditary disorders of connective tissue such as… (EDS).
AAI is kind of the same. The main difference between the two is which vertebrae are involved.
In short with both, the ligaments holding her top four vertebrae (the cervical junction) in place are floppy due to the EDS. So, the vertebrae are not held in place properly. They move in ways in which they shouldn’t, interfering with many of the nerves that come out of that part of the spine.
We know she has a 42° overshoot of her C1 over her C2 (her top two vertebrae). It should only be 35°. She has brain stem compression due to odontoid displacement (a piece of bone that allows the C1 to pivot on the C2). We know that her facet joints sublax (partially dislocate) on turning her head to both sides.
The effects of her CCI and AAI are systemic and overarching. Vomiting, seizures, difficulty swallowing, loss of bladder control, cardiac and pulmonary dysfunction and weakness in her muscles and joints to name but a few.
Overarching, systemic effects
Nic has numerous conditions and symptoms which I believe the instabilities are responsible for:
- Gastroparesis and dumping syndrome. These are conditions which seem to alternate in her. The former is where the stomach doesn’t empty properly, the latter where it empties too quickly. Both cause various, severe symptoms like uncontrollable vomiting. They are both probably related to brain stem compression; specifically the vagus nerve. She was free of gastroparesis from August until October 19, when it returned with a vengeance. This was the longest she had been without it. We believe it came back partly due to a strain on her cervical junction which at first resulted in severe pain extending into her thoracic area and down her left arm. But it also flares up whenever she has a ‘crash’ due to the ME, which she also appeared to have. I think the process here is this: any form of exertion results in post-exertional malaise (PEM) due to the ME. This, in part, impairs her already compromised mitochondria function (due to the ME), thus disrupting energy delivery. Therefore, any underlying EDS/CCI/AAI-related issues (like impairment of stomach muscle/nerve function in gastroparesis) are made even worse. Hence when Nic has PEM, her gastroparesis flares up. This time, the additional issues with her cervical junction appear to have been the trigger of it.
- Dysphagia. This is where swallowing is difficult due to nerve and muscle dysfunction. Again, this is probably related to vagus or accessory nerve interference in the brain stem or cervical junction.
- Focal autonomic/impaired awareness and tonic clonic seizures. A neurocardiologist agreed with my theory that the below is likely to be the process which leads to her seizures; in my opinion, once again at the root of this is brain stem compression as the heart’s sinoatrial node’s rate of production is ultimately controlled by the vagus nerve:
- I can accurately predict (with an 89% confidence rate) when she will have a seizure. This is due to an average 11% drop (versus her usual mean) in both her systolic and diastolic blood pressures the preceding night.
- Postural orthostatic tachycardia syndrome (POTS). This is where the heart fails to respond properly when posture is changed. It causes dizziness and imbalance. This could be caused by interference with the vagus nerve, which controls the parasympathetic aspects of the heart; essentially heart rate at rest. In short, the baroreceptor reflex is not being communicated to the medulla oblongata in the brain stem correctly. This causes her heart rate to remain increased after going from a supine/sitting to standing position.
- Peripheral neuropathy. This is loss of sensitivity in her extremities, like hands and feet.
- Cerebrospinal fluid (CSF) leak. This is where the fluid that cushions the brain and/or spine leaks out due to a tear in one of the duras (membranes). It happened in August during the postictal stage of a tonic clonic seizure. Nic projected herself out of bed, hitting her head and neck on the dressing table. Kings A&E said it was rhinosinusitis. We had to see a private neurologist to confirm the leak. The symptoms passed by the middle of October. But the leak showed that the vulnerability of her cervical junction has increased, as this was the first time she has had one.
- Reflex micturition/neurogenic bladder. This is an increased need to urinate and a degree of loss of bladder control, which has manifested more since the CSF leak. Nic has to urinate around once an hour, sometimes more – even though her fluid intake is less than mine. Whether this relates to the brain stem compression is more complex. If it does, it may be due to signals from her bladder’s afferent nerves being miscommunicated. Or, it may be faults in the hypogastric/pelvic/pudendal nerves. But if it’s the latter, that may be an indication of a fault lower down her spine; specifically tethered cord syndrome which we need to get her checked for.
- Cervical radiculopathy. This is nerve interference in the cervical junction, which causes pain to radiate from this area to other parts of the body (depending on what nerves are compromised).
- Chronotropic incompetence. This is where Nic’s heart rate does not increase appropriately during exercise. I believe this is caused by interference with the cardiac plexus via the sympathetic trunk and/or left vagus nerve; this controls heart rate over 100bpm. But this could also be related to hormone dysfunction due to the ME, as well as the vagus-controlled parasympathetic response to initial heart rate increase.
Wheelchair bound
But Nic’s muscle and joint strength has also deteriorated. It has got to the stage where she sometimes has to use a wheelchair to go out. This is because the weakness in her legs and lower back pain means she cannot walk more than a few metres without having to stop or being in pain. Sadly, one of only a handful of neurosurgeons in the UK who understand the instabilities didn’t think her weakness was bad enough to warrant surgery on her cervical junction.
What he failed to realise is that Nic practised karate to a proficient level as a child/early teen. This has meant that her strength started out as being more than your average patient. So, what the neurosurgeon considers to be strong now, is actually a worsening by Nic’s standards. In this case, one size doesn’t fit all.
Off to Spain
So, we have to begin the process of potential surgery in Spain. Why Spain? Because the NHS doesn’t recognise the CCI or AAI, therefore there are no treatment options available.
This surgery will cost anywhere between £60,000-£200,000, depending on the extent of what Nic has to have done. This will be a separate fundraiser. In short, the surgery involves fusing/screwing her vertebrae together to hold them in place. This is not without it’s own serious complications and risks.
To do this, we have to have more non-NHS tests done, like a 3D CT of her cervical spine, MR angio/venogram, cineradiography flexion/extension and CT of her lower spine to check for tethered cord syndrome. This will be around £1,200 plus consultation/interpretation fees. Then we will need to travel to Barcelona for a face-to-face consultation with the surgeon. The cost of the appointment is around €300 plus travel costs. Nic can’t fly with her instabilities due to the risks posed by pressure changes, so boat or train it will have to be. This makes the trip even more expensive.
We also need to have her genetic testing for Ehlers-Danlos done. This is because there is now a question mark over her subtype. It may be classical. Ultimately, we want Nicola to be tested so her son can then get the diagnoses he needs. This is because EDS’ are inherited conditions. A positive genetic test for her means he won’t have to endure the years of being told his symptoms (some of which he already has) are ‘all in his head’, as his mother did. We don’t want him to suffer in the same way Nicola has. This will be £2,000 each.
UPDATE: for those asking why the NHS cannot help with this. Nicola’s EDS diagnosis has all been done privately, due to two-year NHS waiting lists. The EDS specialist at NHS UCH is now no longer taking patients. This is who we saw privately. We’ve tried to get the NHS to do the genetic testing. But the request from the GP just got bounced back, as did my own request direct to the centre that does the testing.
The additional spinal scans are not available. This is because the NHS does not even recognise Nic’s CCI and AAI. Moreover, if you want cases in point of how the NHS views people who have had spinal fusion surgery abroad, check out my podcasts with Samantha Smith and Victoria Cheney:
CanaryPod: Topple Uncaged meets… #SaveSamantha
All in all, we think this is going to cost around £8,000 to begin with.
Rebooting life
It is a damning indictment of the NHS that any of this has to be private, let alone abroad, in the first place. But Nic is not alone. Google “craniocervical instability” and look under “news” and you’ll see countless other people in her situation. All are fundraising as the NHS doesn’t help.
It’s also a damning indictment of the DWP that the instabilities, plus all Nic’s other illnesses, only ‘deserve’ £58.70 a week.
We hope that once the ME, CCI, AAI and mycotoxicosis (more on that in another article) are resolved as best they can be, Nic can hit the ‘reboot’ button on her life. She has never known being a mother, or an adult, without chronic illness. A whole world of possibilities awaits her, if we can just get her well.
So, once again – if you can help please, please do.
I want to give her some quality of life back. But I need your help to do it. Please donate what you can via:
The DWP denied benefits to someone with 16 illnesses. We now need your help.
The Department for Work and Pensions (DWP), the UK’s social security agency that is supposed to support disabled people, just denied full benefits to a chronically ill and disabled person who lives with 16 different diseases, illnesses and conditions.
The decision shows the abject failure of government outsourcing. But it also demonstrates the callous and incompetent nature of the welfare system.
UPDATE: we urgently need to raise £1,500 to begin with to be able to continue Nicola’s treatment, otherwise everything will have to stop. This is unthinkable for me. If you can please help, donate via http://www.paypal.me/MrTopple
16 illnesses and counting
Personal Independence Payment (PIP) is a welfare entitlement from the DWP. Is it intended to help towards the additional costs disabled and sick people have due to their conditions.
My partner Nicola Jeffery is one such person. You can read all about her medical story here. In short, she lives with:
- Hypermobile Ehlers-Danlos Syndrome (hEDS).
- Myalgic Encephalomyelitis (ME).
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Deformations in left foot, left leg shortness.
- Polycystic Ovary Syndrome.
- Temporomandibular Joint Dysfunction.
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Hypotension.
- Megaloblastic Anaemia.
- Peripheral Neuropathy.
- Chronotropic Incompetence/Intolerance.
- Hypothyroidism.
- Mycotoxicosis.
- Gastroparesis.
- Non-epileptic tonic clonic and focal autonomic impaired awareness seizures.
Oh, and possible Secondary Mast Cell Activation Syndrome. We’re still looking into that.
Nicola has deteriorated. The CCI and AAI are becoming severe and dangerous. She had a seizure a few week’s ago which caused a fluid leak from her brain. She has brain stem compression. Now, she often cannot leave the house without a wheelchair, as she is too weak:
I gave up work full time to support Nicola. You can read more about that decision here. Since then, we have accumulated probably the best clinical evidence of her illnesses available in the UK. I’d put my neck on the line to say most people have not got the extent of a diagnostic picture she has.
A financial black hole
It has cost a small fortune from my mother’s life savings, and we are now having to fund raise to get further treatment. We are having to fund raise for her seizures, like the one below:
This is because the NHS will only recognise them as “functional/dissociative” or “psychomatic”, even though I have hard clinical evidence that proves otherwise.
Now, we are also having to try and raise the money to continue her treatment.
She is currently under the care of one of the only doctors in the UK that attempts to properly treat ME. She has been on a programme for several months. But now, if we don’t raise £1,500 quickly, this will have to be stopped dead in its tracks, and all the progress she has made so far will be undone. This is terrifying.
We also have to begin the process of potential surgery in Spain. Why Spain? Because the NHS doesn’t recognise the CCI or AAI, therefore there are no treatment options available.
This surgery will cost anywhere between £60,000-£200,000, depending on the extent of what Nic has to have done. This will be a separate fundraiser.
To do this, we have to have more non-NHS tests done, like a 3D CT of her cervical spine, MR angio/venogram, cineradiography flexion/extension and CT of her lower spine to check for tethered cord syndrome. This will be around £1,200 plus consultation/interpretation fees. Then we will need to travel to Barcelona for a face-to-face consultation with the surgeon. The cost of the appointment is around €300 plus travel costs.
We also need to have her genetic testing for Ehlers-Danlos done. This is because there is now a question mark over her subtype. Ultimately, we want Nicola to be tested to her son can then get the diagnoses he needs. This means he won’t have to endure the years of being told his symptoms (some of which he already has) are not ‘all in his head’. We don’t want him to suffer in the same way Nicola has. This will be £2,000 each.
You can read about our fundraising here, and if you can help with the £1,500 for the ME treatment, or the £8,000 for the EDS-related work, please donate via this link:
She is house bound for 85% of the time. When she does go out, she has to build up to it. Afterwards, she is incapacitated for several days. This is just one aspect of her health. The implications of all her conditions are extensive and systemic, affecting every part of her body.
Going back to the DWP
So, she applied for PIP. We submitted several doctor’s reports, a complete diary of Nicola’s life for the entire month of May, her complex treatment regime and more.
After a PIP assessment where the assessor let a fire door slam onto Nicola, almost knocking her over and injuring her hip, we got this decision:
As is usual, the assessor appeared kind and understanding, which we know is never a gauge of the outcome.
I wasn’t expecting the DWP to award Nicola higher rate for both without a fight. But I was expecting standard rate mobility and possibly higher rate for daily living. To say I was furious wouldn’t do my anger justice.
Let me break the DWP’s decision down for you using one area as an example. We have clinical evidence to back up every single claim I make below.
Full time caring? Not according to the DWP
Around four hours of my day is spent preparing Nicola’s complex medication regime and cooking. The former consists of 26 different supplements and pharmaceutical medications, administered at six different points across the day.
This is what she takes in the morning:
The latter consists of a controlled carbohydrate and sugar free diet, where every ingredient has to be measured and the calorie (kcal) content calculated.
Nicola has dysphagia, which means she has difficulty swallowing and can be at risk of choking. She also has impaired cognitive function, meaning she cannot remember what she is taking when. Her impaired cognitive function means she struggles to follow written instructions for something with this level of complexity.
In her May diary, we noted that she attempted to cook a meal once. She struggled to remember the quantities of ingredients and was left exhausted and distressed after trying.
All the supplements, medications and the diet serve various functions to try and improve Nicola’s health; specifically with her ME and hEDS.
To be clear: this is not our medication and diet plan. It’s not a “lifestyle choice”. This is from one of Nicola’s private, General Medical Council (GMC) registered doctors. We also have written evidence of this plan being approved by three NHS, GMC-registered consultants.
The DWP’s score for Nicola on “managing your treatments” was 1 point, the minimum.
The reality? She should have scored 8, as I have to spend more than 14 hours a week preparing and administering it. I also have to “monitor” her “health condition” by taking five blood pressure, heart rate and temperature readings across the day. This is because some of the medication she is on results in changes to these. I also have to “monitor” her “health condition” by documenting her symptoms and being proactive when she has, for example, a Post-Exertional Malaise (PEM) crash, as this requires additional support and medication.
The DWP did not recognise any of this. It was the same story on most of the other descriptors. I won’t go into them as this article will turn into an essay.
But it’s the mobility decision that is the most infuriating.
Mobility chaos
The DWP did not believe that Nicola’s uncontrolled, random seizures warranted me having to support her to make familiar and unfamiliar journeys. Even though I have witnessed her having them in the street, and also at any time of the day. It did not equate that if she did have a seizure, on her own, in the street, and collapsed she would be at serious risk of neck injury owing to her CCI and AAI. Nor did it intersect this with the fact that Nicola can only attempt to go out one day a week.
It didn’t equate for the fact that Nicola cannot risk using public transport anymore due to, again, the risk of injury to her neck. Nor did it equate for Nicola not being able to use public transport anymore due to the risk of infection due to her weakened immune system. It didn’t equate for Nicola having an anaerobic threshold of four metabolic equivalents (METs), meaning she cannot do any exertion which takes her over this. Walking the 0.8km to our train station would be this. Going to and from a bus would use up part of those four METs.
The DWP didn’t take into account that Nicola can no longer plan and go on an unfamiliar route unaided, due to her cognitive impairment leaving her at risk of getting lost. Nor did the DWP take into account that Nicola forgot her parents address recently. They live 30 seconds walk away from us.
A whitewash
Overall, the assessment was a whitewash of the severity of Nicola’s health. The assessor even had the audacity to say that she was “not diagnosed with any cognitive conditions”. Even though ME, hEDS, CCI and AAI all effect cognitive function, as stated in the literature available.
As a side note, the assessor also said:
You are not taking any medications to treat your symptoms of nausea and vomiting and there is no evidence to suggest these symptoms in your plan.
The second part is firstly a lie, as the evidence was there in Nicola’s diary. The first statement about medication shows the incompetence of the assessor and the DWP. Nicola is taking adrenal hormone replacements which, in part, her doctor has prescribed to attempt to improve her digestive transit, thus improving her gastroparesis.
Back in 2016…
What sticks in the throat even more is that Nicola is getting the exact same PIP award as she was previously getting in 2016. That is, standard rate daily living component. This is despite at that time only living with an incorrect fibromyalgia diagnosis. But moreover, this is despite a severe deterioration in her health, which I have fully documented. It shows a systematic failure by the DWP to ensure health assessment providers comply with working from the standardised guidelines. Or the department has built in this fault in the system to ensure the muddying of waters when it comes to a level playing field for claimants across the board; with the goal of saving money. It’s probably a bit of both.
The decision also shows the preposterous contradiction that sits at the heart of the DWP.
Toxic contradictions
We are bombarded with this constant narrative of ‘scroungers’, ‘shirkers’, ‘benefits cheats’ and the notion that the government wants disabled people to get back to work.
Yet if you buy into that distinctly capitalist mantra, Nicola’s decision goes against this. Surely the DWP wants to support her to live independently and to get back to work? But by denying her entitlements it’s stopping her health improving. And ultimately, it is stopping her finding a job.
So, which is it?
Neither. Apparently the corporate-driven push to force as many sick and disabled people into work doesn’t apply to complex chronic illnesses. Nor does the notion of the state providing support when life metes out its worst at you, apply either.
Complex chronically ill people, often living with ME and EDS, are literally being left to rot. In Nicola’s and other’s cases, it is partly because the system and specifically the NHS does not even recognise her conditions. The assessor didn’t even know what several of them were. It is also because the PIP criteria is essentially incompatible with these kind of conditions.
Their carers and advocates are also left on the scrapheap. They are left scrabbling around, begging and borrowing, desperately trying to garner some minuscule quality of life for their loved ones. The same DWP contradiction applies here, too. I cannot work full time and therefore contribute tax while Nicola is so ill. Yet by denying her full PIP I cannot get state support either.
Lives, wasted
Two lives. Literally being wasted.
And for what? To save money on a welfare budget [pdf] that makes up around 2% of the UK’s total gross domestic product? We and millions of others are literally paying the price for economic illiteracy, personal incompetence and ultimately nefarious greed. But of course, the system is such it’s supposed to be like this.
Overall, Nicola is housebound the majority of the time. Her son has had to move into his dad’s due to the severity of her illnesses and our attempts to improve her health. She is left:
- Unable to cook.
- Unable to clean.
- Unable to write more than a few sentences.
- Unable to have visitors for longer than two hours.
- Unable to use social media for long periods of time.
- Unable to read more than a few pages of a book.
- Unable to have sex.
- Unable to eat properly.
- Unable to have proper bowel movements.
- Unable to shower daily and properly.
- Unable to live any kind of life.
If she does any of the above, her health deteriorates.
And still, all this is worth £57.30 a week to the DWP.
Out of options?
We are now left with a Mandatory Reconsideration, and most likely an appeal. Moreover, we are also left with hardly any financial support.
But most of all Nicola, who was for years told her 16 illnesses were ‘all in her head’, is left feeling disbelieved, isolated and abandoned. Again. Like she has for most of her adult life, not least by her family, some of whom still disbelieve her to this day.
All this just so the DWP can save a few pounds and force people back into work. Our society is truly broken.
I want to give her some quality of life back, despite what the DWP thinks. But I need your help to do it. Please donate what you can below.
We now have to fund-raise to solve my girlfriend’s seizures
Some of you may be aware of my girlfriend Nicola Jeffery’s story. Many will be aware of her seizures. Now I believe I may have worked them out. But it’s going to cost to prove this. And we need some financial help from the public.
A complex picture
You can read all about Nicola’s medical story here. In short, she lives with:
- Hypermobile Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder (hEDS/HSD): diagnosed in 2017 as hEDS, updated in 2018 to HSD due to change in diagnostic criteria, then re-diagnosed as hEDS in April 2019.
- Myalgic Encephalomyelitis (ME): diagnosed in 2018.
- Postural Orthostatic Tachycardia Syndrome (POTS): diagnosed in 2018.
- Deformations in left foot, left leg shortness: diagnosed in January 2019.
- Polycystic Ovary Syndrome: diagnosed in 2011.
- Temporomandibular Joint Dysfunction: diagnosed in 2008.
- Craniocervical Instability (CCI): diagnosed in March 2019.
- Atlantoaxial Instability (AAI): diagnosed in March 2019.
- Hypotension: diagnosed in March 2019.
- Megaloblastic Anaemia: diagnosed April 2019.
- Peripheral Neuropathy: diagnosed April 2019.
- Chronotropic Incompetence/Intolerance: diagnosed May 2019.
- Hypothyroidism, diagnosed May 2019.
- Mycotoxicosis via four different mycotoxins: diagnosed May 2019.
- Non-epileptic tonic clonic seizures with apparent focal autonomic aware prodromals: present for at least a decade. Formally first assessed in 2011. Originally put on Lamotrigine. Rediagnosed as non-epileptic in 2018.
- Presence of Cytomegalovirus (CMV) and Epstein-Barr Virus (EBV): reported via bone marrow trephine biopsy in 2018.
I gave up work full time to support Nicola. You can read more about that decision here. In short, we are currently on a complex treatment plan for the ME. This is starting to show some results, with improvements across various clinical measures. But progress is slow.
What we still haven’t got to the bottom of are Nicola’s seizures.
Seizures: blighting her life
This is one of them:
She had one this morning (Wednesday). They have blighted her life for many years and no neurologist can work out what’s causing them.
At first, she was told she was waking up incontinent and in severe pain due to the birth of her child, and her now incorrect diagnosis of Fibromyalgia. Her previous partner witnessed a few of them. Her son, a toddler at the time, even had to call an ambulance during one episode.
But since we have been together, I have documented them fully.
Debilitating
The challenge for Nicola is multi-stranded. She lives with ME and hEDS, which makes her muscles weak and prone to exhaustion after exertion. Having a seizure, where her whole body contorts and strains, has a devastating effect on her. It leaves her effectively incapacitated for up to five days.
They severely impact her already damaged cognitive function. She has chipped many of her teeth and due to the hEDS her bottom front ones are now extremely loose. Moreover, she is of course at risk of Sudden Unexpected Death in Epilepsy (SUDEP).
Now, I think I know what is causing them. But to get it properly diagnosed, we’re going to need some help. This is in the hope that we can rid Nicola of one of the most distressing aspects of her illnesses.
My theory
In short, she lives with Hypocapnia, also known has Hypocarbia. This is essentially below-normal levels of carbon dioxide (CO²) in her blood. We discovered this during a two-day Cardiopulmonary Exercise Test (CPET).
Hypocapnia has two major effects. It firstly reduces arterial blood pressure. We know Nicola’s blood pressure is already hypotensive. Secondly, it causes Respiratory Alkalosis, where the blood becomes too alkaline. Normally, Hypocapnia is caused by hyperventilation. But due to the CPET testing in Nicola’s case we know this is not the cause.
What I think it happening to Nicola is the following:
- Her mitochondria dysfunction, Chronotropic Incompetence and Megaloblastic Anaemia are causing cardio and pulmonary dysfunction. We know from various testing, for example, that Nicola’s mitochondria fail on minimal exertion and that her red blood cells do not carry oxygen around her body correctly.
- Specifically, she has Ventilation/Perfusion Mismatch, where a part of her lungs get oxygen without blood flow or blood flow without oxygen.
- This results in Hypocapnia.
- It then causes her blood pressure to drop extremely low, probably due to vasodilation. It also causes her blood to become very alkaline.
- The knock on effect is restricted blood flow to her brain. This is known as Cerebral Hypoperfusion.
- This vasoconstriction leads to the seizures, both the focal autonomic aware and tonic clonic ones.
We know there is a link with her blood pressure. I’ve identified that the night before she has a seizure, her systolic/diastolic blood pressures drop by, on average, 8% and 19% respectively.
So, we can now predict when she will have one or both of her seizures. But I do not have definite answers.
Another long journey
To get these, and finally rid her of these distressing episodes, we will need to find a neurologist, cardiologist, haematologist and pulmonary expert who are willing and open minded enough to do all the necessary testing. It will involve more blood tests, and numerous diagnostics the night before, during and after a seizure.
None of this, from my theoretical diagnosis to the investigatory work, is available on the NHS. Nicola’s seizures have already been labelled “psychosomatic” and “functional” (ie. all in her head) by several neurologists. We will not get help there.
Most of Nicola’s treatment is now private, due to the lack of recognition and clinical care for her illnesses on the NHS. You can read more about that here. We currently have the money to fund this.
But to investigate Nicola’s seizures fully we need help. It’s an unbudgeted expense in her treatment plan.
We need your help
So, we are asking people to donate via my PayPal to support us in trying to get to the bottom of this. Once I have an idea of cost I’ll publish this. I know a standard consultant appointment will be at least £250-£300.
We both understand how hard things are for many people at present. But anything you can donate would be greatly appreciated.
Nicola’s life has been blighted by chronic ill health for too long. If we can solve her seizures, then one aspect of her complex and debilitating medical picture will finally be resolved.
I want to give her some quality of life back. But I need your help to do it. Please donate what you can below.
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 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.
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:
- Hypermobile EDS (hEDS)/ Hypermobility Spectrum Disorder (HSD). She was diagnosed as hEDS before the criteria changed. So she now fits the HSD bracket.
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Non-epileptic focal and tonic clonic seizures.
- Polycystic Ovary syndrome.
- Temporomandibular Joint Dysfunction (TMJ).
- Clinical hypotension.
- Deformations in left foot, left leg shortness.
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 reduced my work to support Nic. Most of her medical treatment now has to be private; a challenge in itself with little income and on Universal Credit.
If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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:
You can read Nic’s journey so far here and here. But in short she’s currently living with:
- Hypermobile EDS (hEDS)/ Hypermobility Spectrum Disorder (HSD). She was diagnosed as hEDS before the criteria changed. So she now fits the HSD bracket.
- Myalgic Encephalomyelitis (ME).
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Non-epileptic tonic clonic seizures.
- Polycystic Ovary syndrome.
- Temporomandibular Joint Dysfunction (TMJ).
- Presence of the (allegedly dormant) Epstein Barr Virus (EBV) and the Cytomegalovirus (CMV).
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:
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”:
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.
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.
UPDATE: as of January 2020, I returned to writing part time for The Canary.
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:
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.
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.
UPDATE: as of January 2020 I returned to part time writing at The Canary.
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:
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.
Mr Topple 