The Pandora Papers: this changes nothing (again)

Posted on by Mr Topple

In April 2016 a group of journalists exposed a huge cache of documents about offshore tax avoidance and evasion. These were called the Panama Papers. Now, we have another leak by the same journalists. Called the Pandora Papers, the Guardian trumpeted that:

The secret deals and hidden assets of some of the world’s richest and most powerful people have been revealed in the biggest trove of leaked offshore data in history.

The problem is – we’ve been here before. I wrote the article below on the day of the Panama Papers leak for a now-defunct website – hence I’m republishing it here. The name of the leak may have changed – but the result will stay the same; that is, to paraphrase Naomi Klein – ‘this changes nothing’.

The following article was originally written for Consented on 4 April 2016:

So, out of the blue this evening we had the biggest data leak in history revealed by the Guardian – the so-called “Panama Papers”.

2.6TB of information, 11.5 million documents, 214,488 companies involved, 14,153 clients all spanning more than 35 years – disclosing confidential details of how some of the world’s elite actively avoid tax, via offshore “havens” such as the British Virgin Islands, Bermuda and the Cayman Islands.

The Guardian promised that the leaks would reveal “a world of hidden wealth”, exposing the “offshore pandemonium” that is tax havens, with “evidence of Russian banks providing slush funds for President Vladimir Putin’s inner circle; assets belonging to 12 country leaders, including the leaders of Iceland, Pakistan and Ukraine; companies connected to more than 140 senior politicians, their friends and relatives, and to some 22 people subject to sanctions for supporting regimes in North Korea, Syria, Russia and Zimbabwe; the proceeds of crimes, including Britain’s infamous Brink’s-Mat gold robbery; and enough art hidden in private collections to fill a public gallery”.

Shocking stuff. Kind of.

Anyone involved in politics, journalism or economics knows full well the scale of tax avoidance that quite legally goes on via these small islands in the middle of nowhere. Anyone with an open mind is aware of the practices that companies and individuals use to lessen their tax bill and increase their wealth.

But the fact that the mechanics of this have now been highlighted in such a stark way can, in some respects, only be a good thing. Most people are probably aware of the problem, but don’t allow it to seep into their consciousness just how deep the rot runs – or how much money is involved (over $1 trillion, by Global Financial Integrity’s estimates).

But the problem is – where does this leak go from here, what will be done with the information and will “we” allow business as usual to continue?

The Guardian is already giving us a pretty big hint. Screaming about “VLADIMIR PUTIN’S TIES TO MASSIVE OFFSHORE WEALTH!!!” and “REGIMES IN RUSSIA!!!”, while lauding the fact that “some world leaders are now taking a stand”, going on to name David Cameron and Barack Obama specifically – it appears to me crystal clear what will be revealed, and what will not.

Yes, Russia (for example) is as corrupt as hell – this is by no-means a surprise. Nor is the fact that former Prime Ministers of Iraq, Jordan and Qatar are named, along with the current President of Ukraine, the Kind of Saudi Arabia and the President of Argentina. It comes as little shock the Lord Ashcroft was named (I thought this was well-known), or Baroness Sharples – or even that David Cameron’s Father has been implicated.

In fact, none of the names “named” are really shocking – these are all avid supporters and middle-men for the corporatist system we live under. So a few reputations will look a bit shady for a while. Big deal.

This, as far as I can see, still will go no way to addressing the underlying problem – it’s not really individuals, but the system and the corporations at the top of it that need addressing.

Are Chevron going to be mauled, for example? The 16th biggest corporation worldwide, operating in 180 different countries, with assets of $266bn – who run a staggering 264 (yes – two hundred and sixty-four) different subsidiaries out of Bermuda, covering every country on the planet and more?

Are companies like Vanguard and BlackRock, two of the most notorious crony corporatist organisations on the planet, going to be forced to change their ways and stop investing in both sides of every war, industrial battle and exploitative profit-making exercise?

Will Bill Gates and Warren Buffett, the first and third richest men on the planet, be called up for the fact that their companies actively avoid tax, while at the same time these individuals call for a Robin Hood Tax, and we all lap this shit up and believe their sincerity?

There are, according to research by a Swiss university, 43,000 companies the OECD defines as ‘transnational’. The majority of shares in these corporations are owned by the richest 1,318 of these 43,000. Of the 1,318 companies, 737 control 80 per cent of them and, at the very top, 147 control 40 per cent of the 737. Do we think that these 147 companies are going to stop serving the interests of a few individuals and start playing fair, even if the avenue of tax havens is partially closed-off?

People and companies can be exposed as much as we want. Names can be named. Corporations can claim to be trying to clean up their act. But the truth of the matter is that when you have a few companies and people controlling all of the worlds wealth, there is always going to be one thing at the forefront of their minds: greed.

To think that David Cameron and Barack Obama will do more than just tinker around the edges of this, as the Guardian seems to imply otherwise, is naïve in the extreme. Both countries whole economies rely on the kind of practices exposed in the Panama Papers for their stability.

Furthermore, to even think for one second that the Guardian (hypocritical in the extreme, when they themselves avoided tax not so long ago), and the “International Consortium of Investigative Journalists (who are funded by corporatists the Ford Foundation, the Carnegie Endowment, Kellogg’s and the Rockefellers – HT to Craig Murray for the quick work) are going to make any more of this than turn it into a propaganda exercise against the West’s cartoon, make-believe enemies, is deluded.

This will end up being just another exercise in conveniently apportioning blame at the doors of others, to attempt to counteract a growing swell of public disdain at the state of our current global financial system.

Corporatism is severely floundering. More people are waking up.

But, sadly, still not enough are – and the “Panama Papers” will be used as little more than a sleight of hand to continue to deceive the public as to who the real enemies, and architects of global inequality, are.

The ones right on our doorsteps.

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Knaxx: “Like You” Single Review – Mr Topple

Posted on by Mr Topple

UK DJ David Rodigan recently said on his BBC 1xtra show that there are no recognisable producers/labels in Reggae/Dancehall music any more. Enter Tru Ambassador Entertainment to prove him completely wrong.

Like You, released via Tru Ambassador Entertainment, is the first release from producer Week.Day’s forthcoming EP The Xesperience. The track is with up-and-coming Knaxx on vocal duties – and it doesn’t disappoint: showcasing Week.Day’s now recognisable composition and production style perfectly.

The track is ostensibly AfroDancehall in its formation, but it leans more towards the RnB-influenced end of the genre. This has created an almost ‘Afroballad’; much like the Jahmiel x Week.Day collab We Alone (you can read Pauzeradio’s review of that here). But Like You has a slightly faster BPM and more focus on the rhythm, not the melody.

Its bass line is smooth, rich and resonant – but Week.Day has avoided the trap of keeping it on the same rhythmic motif throughout. Instead, it ebbs and flows with the overall arrangement. At points, it runs a dotted semibreve-crotchet pattern; at others the syncopation increases – and listen carefully for some gorgeous glissandos, dotted throughout. Melodically it avoids the tonic of the scale, generally working around the third and fifth. This smart melodic trick creates a sense of momentum and movement, which fits perfectly with the drums.

Their line is interesting and highly complex, drawing on several genres. The synth hi-hats are sparse, tinkering in and out with the occasional Trap buzz roll. Then, Week.Day has made snaps central to Like You. They regularly hit the two and the offbeat after the four – essentially replacing what the snare would normally do on an Afrobeats riddim. Some hi-passed tom-toms rattle across rapid, dotted notation on occasion. And the snare itself refuses to have a fixed pattern. At times, it hits the semiquaver before, and then directly, the third beat, and the final off after this. On other occasions it runs a more drawn-out rhythm, playing parts of that recognisable AfroDancehall broken clave – and it’s this which is the main rhythmic driver of Like You.

One of Week.Day’s signature instruments are strings. Here, he once again uses them to full effect. They lead the broken clave (at its peak, across a ‘oneeeeee-twooo-and-(three)-and-four’) across bowed, staccato (short), dampened and reverbed chords. This bowed arrangement is then embellished, removing elements of the clave across the bridges with the engineering adjusted to make the sound crisper and more high-passed – before some fairly complex runs come in. Then, there’s a separate pizzicato (plucked) and dampened string line too, which runs a countermelody to Knaxx’s main one. These are further complemented by a bottle bell-type synth which also has its own melodic line.

What also stands out about Like You is the variety in the construction. The chorus is memorable but different each time. Week.Day has mixed up the complexity of the arrangement across the verses, also giving the track one stand-out bridge (with its stabbing strings), but also a smoother one. Overall, Like You is detailed and fulsome. Add Knaxx into the mix, and the track is then elevated further.

He’s a quality artist; not least his vocal delivery – which is crystal clear, pitch perfect and with a pleasing timbre. His performance is forthright but still tinged with light and shade, pulling the dB back appropriately. Knaxx’s mashing-up of vowel sounds is delicious, too – for example mixing up ‘life’ into ‘loyfe’ at times. Melodically, he swerves between a straight vocal and a vocal-led singjay, giving a memorable chorus and some interesting work on the verses, soaring across his mid-tenor range well but also knowing when to draw the melodic intricacy back in. But it’s Knaxx’s rhythmic arrangement which is particularly impressive. It works around both dotted and straight rhythms, but he has matched these perfectly with Week.Day’s music. Rapid semiquavers marry with increases in instrumentation; drawn out dotted quaver-to-semiquavers when the arrangement is pared-back. There’s also a brilliant section on the second half of the first verse, where Knaxx moves the dotted rhythms to clash with the beats, creating a driving, Afrobeats-like stuttering vibe. He impresses overall, and it’s good to hear an artist completely tune in to the producer’s musical vision.

Like You is yet more top-quality work from Week.Day. Taking his Dancehall-Afroballad sound up a notch, it is impressively rhythmically complex – and as is always the case, his use of strings is that of a talented composer who has settled into his own unique style. Knaxx is on point, and overall, the track is peak Week.Day: you know it’s him by just listening to it. Take note, Rodigan.

A series of podcasts on myalgic encephalomyelitis (ME/CFS)

Posted on by Mr Topple

A series of six daily podcasts I produced, hosted and edited for UK-based media site The Canary. These were for a week of action surrounding the disease myalgic encephalomyelitis, known as ME and sometimes incorrectly referred to as chronic fatigue syndrome (CFS). All episode links below.

CanaryPod: Topple Uncaged meets… the Millions Missing: Tina Rodwell
CanaryPod: Topple Uncaged meets… the Millions Missing: Dr Myhill
CanaryPod: #ToppleUncaged meets… the Millions Missing: Jessica Taylor-Bearman
https://www.thecanary.co/podcasts/2019/05/10/canarypod-topple-uncaged-meets-the-millions-missing-nicola-jeffery/
CanaryPod: Topple Uncaged meets… the Millions Missing: Wilhelmina Jenkins
CanaryPod: Topple Uncaged meets… the Millions Missing: David Tuller
CanaryPod: Topple Uncaged meets… the Millions Missing: all six episodes

The Harmony Party UK’s organisational structure

Posted on by Mr Topple

As part of the #MeetTheMovement series, The Canary spoke with the founder of the Harmony Party UK John Urquhart. They explained about the party’s organisational structure:

We operate by direct democracy but we’re both a singular entity and many smaller ones the larger entity is comprised of.

The components are Assemblies, which can be divided into two types. The larger, Committees and Committee Societies, and the smaller, Working Groups or Societies. Members can join or depart and participate as they see fit. We have both the geographically-oriented Assemblies – our Constituency Societies – and then we have an array of what you might call “topic-focused”, non-geographic Assemblies.

Assemblies can overrule their own decisions, and Society Committee or Committee decisions can overrule Working Group/Society decisions. The Party as a whole at conference can overrule any decision.

(Assemblies can also spawn other Assemblies. A good example of this is how our Operational Working Group is likely to become the Operations Society Committee in the near future: it will need to spawn focused Assemblies for IT and other things as it grows and specialism becomes more viable.)

All of the Assemblies (regardless of scale) have the same structure and the same basic processes for making decisions in common, and all Assemblies have an elected organiser, called a Secretary.

The Secretaries are tasked with ensuring everyone is aware of Assembly events in accordance with the will of the Assembly members; chairing Assembly gatherings; and helping Assembly members find consensus by negotiating between disparate viewpoints during discussion & debate of members. They can also delegate, and can create Deputies, though the Deputies are also directly elected and are NOT appointed.

Whenever there is no Secretary or Deputy in an Assembly, the general secretary undertakes most of these responsibilities.

The Secretaries also facilitate communication between Assemblies, and five key Assembly Secretaries are members of the day-to-day working body, the Secretarial Committee – as am I as Party general secretary.

The SC is constrained to act only within the consensus of the Party. If we don’t, we can be recalled.

Decisions themselves happen in up to three phases. An Assembly might come to a decision by simple discussion – and if there is no dissent whatsoever, that’s fine. It’s done: you’ve got consensus!

If there’s disagreement and it isn’t reasonably simply resolved, the chair of the discussion will call for a formal debate.

At the Moot itself – which can be physical or digital (or a combination of those) – there is a structured, formal debate. If a decision emerges, that’s consensus.

If one doesn’t and there are still multiple options on the table and the Secretary feels the debate has become intractable, then we move to a STAR (Score then Automated Runoff) ballot. The Party uses STAR for all internal balloting.

At the moment all of this is digitally organised – via the central hub for organising, the Party Moot.

It’s the heart of the Party for participation. It’s somewhat similar to a live chat forum but we also have Zoom conferencing and other useful features, and the Operational Working Group is working on more in the background.

Members are sent to the Party Moot by their “digital welcome pack” (we’ve not jumped to physical packs just yet).

You’ll notice that we have no designated leaders in any of this: and that’s because everyone, collectively, is in charge. And that’s kind of the point. If Harmony Party members are elected into office, even locally, it’ll mean you could walk into our meetings – physically or in the metaphorical digital sense – and change local policy just by talking and persuading people you’re right.

So is there another political Party out that there that could revolutionise government just by being elected to it?

I believe we’ve got the power to be truly transformational at every level.

Featured image via the Harmony Party UK

Mariah Carey returns on scintillating form with “Save the Day” – review by @MrTopple

Posted on by Mr Topple

Perhaps the greatest vocalist to ever have lived, Mariah Carey is celebrating 30 years as a recording artist. And what better way to mark that, than to release not only a highly pertinent anthem for our time – but also to do it with the help of another living legend.

Save the Day, released via Columbia/Legacy and Sony Music Entertainment, sees Carey drop the first cut off her forthcoming album The Rarities; a collection of songs that never made it onto albums. First penned back in 2011 with producer Jermaine Dupri and Randy Jackson, Save the Day has been brought back to life – and the track is wholly invigorating and classy in equal measure.

It is ostensibly what Carey helped pioneer back in the 90s: the effortless fusing of Hip Hop beats with Soul sensibilities; a sound she mastered, which others then followed. It opens with a grandiose string quartet arrangement, which runs a demisemiquaver glissando before briefly elongating out with some heavy vibrato. This then makes way for a tinkering piano line. It’s classic Carey – the left hand driving the chord progressions, the right running a syncopated countermelody to the main melodic line, offering responses to its calls. Then, the strings delicately return across breves, before both lines rapidly crescendo – and the track begins proper.

Hip Hop is the driving force of Save the Day. The drum beat is incessant: the kick driving on the one and three; the snare on a ‘and-two-(three)-and-four’; hi-hats filling in the spaces in between along with the inclusion of tom-toms. It’s persistent and unrelenting – and creates a stark contrast to the rest of the instrumental arrangement.

Save the Day is also bass-heavy. Working off a drop-beat rhythm, it generally misses the two and then syncopates across the rest of the bar, except on the third of its four-bar phrase. This skipping of beat two is particularly effective, as not only does it serve as a musical breath, drawing our ear automatically to Carey and Hill’s vocals, but the space serves to increase Save the Day’s wind. The use of the piano throughout the main part of the track has been scaled-back, but it still gently runs a countermelody, almost out of earshot.

Save the Day can’t help but reverting back to its Soul roots, though – as Carey and Dupri have embedded a glorious bridge into the track. It begins stripped back with just her vocal line and the piano; then, the bass returns, as do the strings – before the Hip Hop vibes come crashing back in again. The bridge, intro and outro serve as smart musical bookending – framing the harder Hip Hop beats with Soul, nodding to the genre-smashing and enhancing the thought-provoking and searing lyrical content.

But it’s the Killing Me Softly… sample which shows the intuitive creative talents of Carey and Dupri. That vocal riff of Hill’s, where she does the tightest of runs across vowel sounds, is seared into the consciousness of a certain generation of people. Here, it fits perfectly into the track – used as a counter vocal line to Carey’s infectious main melody across the chorus. Melodically it’s perfect, fitting into the chord progressions. Creatively it’s deft – drawing in one of the most recognisable vocal performances of the era that Save the Day harks back to. But as an analogical statement it’s also extremely smart – both Hill’s crying vocal run, symbolising our species’ collective screams, and the track it’s from, as those in charge of our society physically and metaphorically ‘kill us softly’.

Save the Day is undoubtedly Carey’s show, though. The first thing that stands out is something many critics probably take for granted: Carey’s ability to do MTR vocals across separate octaves and harmonies, and then layer them together in perfect rhythmic and melodic sync. Here, the preciseness of her recording skill is faultless; as is her vocal.

It’s classic Carey: sweeping across around three octaves, from the low alto of the harmonic line; the whispering middle soprano of the main verse and chorus; the higher soprano when she breaks out after the main bridge and that classic whistle register, hitting F6 at one point. Her breath control is that of a classically-trained singer – ensuring that her intake of oxygen only happens when the lyrical phrasing allows. Carey’s use of vibrato is as controlled as it has ever been – employing it immediately on the pianissimo notes, but holding it back on the forte ones so as to emphasise the lyrics before the deep, rich vibrato kicks in.

Her vocal runs are as impressive as ever – detailed, well-enunciated and pointed; her rapid switching between her chest and head voice very controlled, and use of crescendo and decrescendo effortless. She’s lost little of her technical skill over the years, with no vocal engineering in sight apart from the obligatory reverb – and still sets the standard most other female singers have to look up to. But as is often the case with Carey, she’s combined this musical and technical mastery with ingenious, poetic and searing lyrics. The timing is perfect, as chaos engulfs us all, with Carey giving a protest cry for common humanity and unity amongst us – and not those who seeks to divide us. As she sings:

“You got a right to your own opinion, but when it comes to the world we live in, isn’t it time that we start rebuilding all of the things that have basically crumbled? We all tend to forget that we all cease to exist if we all live for ourselves; if nobody bothers to find a solution”.

Pertinent and on-point – perhaps the anthem that sums up 2020 and what we need, right now.

Save the Day is a very welcome return from Carey and Dupri. It’s exceptionally clever – in terms of a nod back to an earlier era in her musical career that also serves, with its style and Hill’s sample, as an allegory to a time when everything seemed more settled, more hopeful – even if it actually wasn’t much different to now. Musically deft, Carey’s vocal is sublime – and if this sets the standard for The Rarities, then the album should be immaculate. Stunning.

The A-Level students Williamson forget: personal stories from the front line where you don’t have any grades at all

Posted on by Mr Topple

To accompany an article for The Canary, here are some more personal stories from private A-Level students. They have essentially been forgotten about by the government, and have been left to either resit exams or retake the whole year. 

You can read the full Canary article here.

“Classist”

Israt, 19 years old from Newham in London told me:

I chose to resit due to extenuating circumstances where my father was on his death bed during my 2019 A-Level sitting. Evidently, this had a great emotional toll on me that reflected in my grades and I knew I had to resit as I was determined to obtain grades that reflect my potential and ability. In addition to this, my desire to resit also stemmed from wanting to leave generational poverty and social inequality that has been inflicted upon me. Unfortunately, being a young BAME person from a low income family in one of the poorest boroughs in the UK, on free school meals and occasionally provided with £60-£90 in bursary per school term (£20-£30 per month) has not given me leverage in life. In fact, it has hindered my progress dramatically.

 

I am predicted A*AA, secured all five offers. I respectively accepted London School Of Economics & Political Sciences and Kings College London to study History.

 

Finding an exam centre was extremely difficult. My sixth form refused to let me resit, despite my extenuating circumstances that they were aware of. Various sixth forms and colleges in my borough and neighbouring boroughs rejected me as a resit student due to capacity and funding issues. This forced me to look elsewhere, particularly private exam centres which are all very expensive. I was quoted an immense amount of money. I will quoted me £1,195 for three subjects when exams themselves cost between £25-£65 each:

A Level Prices

Israt continued:

The mark up is ridiculous given we are young people who simply want to obtain better grades to get access to a better life for ourselves. I also spoke to exam centres via telephone that quoted me £755 and £925. Most students that take the brave decision to retake do so due to extenuating circumstances, not because they have disposable income to spend on getting higher grades.

 

To assume that resitting exams is easy as all you have to do is study for your exams couldn’t be far from the truth for most external/home schooled students. Particularly, for BAME, low income disadvantaged students, who make up majority of A-Level resits. To resit A-Level exams for many of us is the only way for us to move forward as we don’t have the comfort of generational wealth, family savings, internships, travel infused gap years and other opportunities that money can bring to make us stand out in our CVs. Moreover, many courses such as law, medicine, pharmacy, dentistry etc. and universities such as Russell Group ones are highly competitive, requiring you to secure top grades to be considered for a conditional offer (alongside great experiences, interpersonal skills and extra curricular activities in which many BAME and disadvantaged people don’t have the comfort of exploring).

 

What most people don’t understand about the consequences of having to sit back a year whilst your peers are moving on with their lives is how extremely difficult it is itself. I can confirm that I have struggled immensely this year. Taking a gap year for most resit students as an external/home school student isn’t solely about the grades. Our mental health and social skills were at an expense for our decision to resit exams. We lived an extremely isolating year full of a lack of social cohesion, where our only friend was our textbooks. When your friends move on and move away and your stuck in the same spot for a year, it’s really difficult to cope with the sadness, depression and isolation that evidently inflicts upon you when you’re out of a routine and possessing minimal human interaction.

 

I’ve had to work odd jobs and hours to pay for my academic resources such a exam fees, books, printer ink, transport fees e.g. to the library, tuition and more to maximise obtaining grades that I deserve. I have spent over £1,000 doing so alongside endless and immense amounts of energy and hours dedicating myself to my studies. That is the reality of external/home school students who don’t have the convenience and support of teachers, teaching resources, funding etc that students in compulsory education have.

 

To be told that external/home schooled students have to resit again for yet another year that is beyond their means is not only incredibly insulting but a nightmare. It is extremely frustrating how the majority of the A-Level 2020 cohort were given a U- turn from being given CAGs [centre assessment grades] that were proved to be classist and downgraded, providing them with grades that are largely unreflective of their potential to a double lock of being given teachers predicted grades and the option to resit in Autumn, whereby whichever grade is higher will be their official A-Level grade. This allows majority of students with the option to attend university, resit with the assurance of keeping higher grades or deference in university entry with a confirmed space. This is absolutely unjustified given resit students have worked extremely hard this year, if not harder given we’ve had to deal with the mental and financial challenges that came with resitting A-Level exams, internalising how vital these exams are in determining our future.

 

We are no different to the rest of the A-Level cohort. COVID-19 does not discriminate, so why are we being discriminated against for choosing to (or in my case, the only choice I had) enrol in an exam centre as opposed to an institution. Despite this, many external students who have studied at their institution for years have been refused grades too. We deserve justice. We deserve to move forward too.

 

External/home school students want to be issued with their UCAS predicted grades as they were issued by their own teachers or tutors who know them best. It is clear that there is no difference between UCAS and teachers providing predicted grades for the rest of the cohort. Neither UCAS predicted grades, teacher predicted grades or CAG’s were moderated, yet the government chose to solely issue the majority of A-Level students with their predicted grades; neglecting 20,000 external/home schooled students.

Another student who wished to remain anonymous told me:

I was an A-Level resit student who took a gap year to improve my grades so I could apply for medicine. I registered as an external candidate at a centre to do my exams. However they refused to give me any grades for A-Levels meaning the whole country gets grades except external candidates. I had two offers for medicine this year which have all gone down the drain. This is so unfair and will mean I would now have to go on a second gap year. I cannot believe how the department for education didn’t have a plan for external and home-schooled candidates like myself to receive grades.

This is seemingly the tip of the iceberg. You can read more via The Canary here.

Featured image via Wikimedia

Big Pharma and the NHS: a 746% price hike for a disabled person’s vital medication leaves her without it

Posted on by Mr Topple

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:

Nic during a CSF leak

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.

MEDS 1

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.

ECLg55oX4AAOsUM

Our house has poisoned our son. We now need your help to treat him.

Posted on by Mr Topple

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:

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:

Myco perameters.png

Nic Myxo.png

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:

 

Lil Man myco

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

Posted on by Mr Topple

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:

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):

MEDS 1

As an example, this is the cost of six months worth of thyroid and adrenal hormone replacements:

MEDS 2

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:NICOLA SEIZURE PATHOLOGY
  • 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

CanaryPod: Topple Uncaged – Antonia’s story, part one
CanaryPod: Topple Uncaged – Antonia’s story, part two

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:

http://www.paypal.me/NicolaCJeffery