Tuesday, 1 May 2012

Game of Crohn's (or how I learned to stop worrying and love lactose-free diets)

I got diagnosed with Crohn's Disease in March of this year, although I'd been experiencing the symptoms since mid-2011. Crohn's is an inflammatory disease and is widely believed to be an auto-immune disorder that usually afflicts the colon, but can occur any where along the digestive system including the mouth and stomach, causing painful ulceration and internal bleeding, whilst making digestion very difficult. If you have the disease or know someone who does, you probably already know the score - diarrhoea, abdominal pain, fatigue, vomiting, rapid weight loss and malnutrition are just some of the symptoms of the incurable and life-long disease. So yes, no fun at all.

Having said that though, as of the 12th of May 2012 (update: 2nd of October and still going strong), I am completely symptom free, gaining weight and feeling better than I have in over a year and I attribute this solely to undertaking a lactose-free diet. I will explain why in some detail below, but first a small amount of background to give some context.

I have so far received no official medical treatment of any kind for my Crohn's disease, mostly due to appointments constantly being cancelled, often delayed for periods of up to six weeks. Given that almost six months had passed since first going to the doctor, and with no treatment of any kind in sight, I was left to my own devices to manage the illness.

I first came across the idea of a lactose-free diet when I chanced upon a small website http://www.cureforcrohns.co.uk/ run by Mandy Boylett, which first introduced me to the idea and much of the information I relate here is taken from or inspired by the information on this site, so if you want to ditch this blog and read that site instead I won't blame you. I'll give a basic run down of some of the science behind the idea and also why I believe this idea has not been researched or discussed.

The Science
I'm not a scientist but if I was, this would be my vague hypothesis. For certain genetically predisposed people, the presence of MAP (Mycobacterium avium paratuberculosis) bacteria in the digestive system causes the immune system to go into overdrive attacking areas of the digestive system where the bacteria may be present such as the stomach and colon. This causes damage to the otherwise healthy digestive system resulting in what we know as Crohn's disease. Simple.

Crohn was one of the first people to identify
 the disease for which he is named.
MAP bacteria is recognised as the cause of Johne's disease, an illness that primarily afflicts cows and similar ruminant species, causing diarrhea and bodily wasting. Sound familiar? MAP bacteria is incredibly tough and is reportedly able to survive chlorination, high temperatures and pasteurisation - the process currently used to sterilise milk. MAP bacteria usually resides in the digestive system and has been detected in the digestive system's of Crohn's sufferers at far higher levels than non-sufferers. MAP is found almost all around the world and is thought to infect around 68% of cattle herds in the US alone. Burrill Bernard Crohn, whom the disease is named after, strongly believed in and argued for the link between Crohn's and MAP but was unable to prove it in his lifetime.

So, if a type of bacteria is the root of the problem, how can we solve it and what does this have to do with a lactose free diet? If the above hypothesis is true, then in theory, Crohn's could be solved or at least limited by removing the MAP bacteria from the digestive system, but how can we do this? MAP originates from cows and there is much evidence that it can travel through cows milk and thus enter the human body. Boylett hypothesises that the MAP bacteria survive by eating lactose, which seems entirely plausible. Lactose is a sugar; a common form of sustenance for different kinds of bacteria. This also explains why the MAP bacteria exists so prevalently in lactose-heavy cow's milk and why the bacteria is able to persist in the digestive system for long periods of time; most modern diets contain large amounts of lactose.

This is where the lactose-free diet comes in. In theory, if their food source is removed, the bacteria will be unable to survive in the digestive system and should quickly disappear; the damage being done to the digestive system should grind to a halt, effectively stopping Crohn's disease.

I hasten to add that much of this is speculation and this theory has not been definitively proved. However removing lactose is working excellently for me and others, so I really do believe there is something to this. However, more research definitely needs to be done to fully assess this link. So, why isn't it being done?

The Economics
One would think that if a disease as serious as Crohn's could be solved by something as simple as changing your diet, it would be a well known form of treatment, but obviously this doesn't seem to be the case. In looking for why this is, we need to look at the economics of the situation and examine the major players involved.

1. The Dairy Industry
The dairy industry has steadfastly refused to acknowledge any responsibility for propagating the disease. Judith Bryans, director of the dairy industry lobbyist group The Dairy Council, claimed that "There is no need for anyone to alter their consumption of milk based on current scientific knowledge" which is awfully convenient for her and the industry. She also cast aspersions on the link between MAP bacteria and Crohn's by stating that "it is important to stress that not all Crohn's patients have MAP in their intestines" which is funny, because research from the VA Medical Center consistently isolated MAP "from 100% of patients with Crohn's disease". No seriously, all of them! One hundred percent!

The Dairy Industry has repeatedly hidden behind the lack of concrete evidence for the link, using the lack of conclusive research as an excuse not to try attempt further research, creating an infuriating tautology and perpetuating the status quo. Not that we should be too surprised by this; the dairy industry stands to gain nothing from establishing a link and stands to lose huge amounts if their product were to become linked to a serious, life-long disease. Dairy is a huge industry, and from a business perspective, maintaining the status quo clearly trumps propagating such information, in spite of the human cost.

2. The Pharmaceutical Industry
As free-market advocates are quick to remind us, many treatments, medicines and cures have their origin in private sector pharmaceutical companies creating drugs to be sold at profit to individuals or government healthcare initiatives like the NHS. In terms of money and power, such groups dominate modern medical research, whilst government funded research tends to be confined to a scattering of universities. Now I do not seek to turn this post into a debate on the merits of private vs public healthcare or anything like that, I will simply analyse how a business, dealing in pharmaceuticals, would likely approach this issue from a business perspective.

Currently, patients with Crohn's disease represent the ideal customer for the pharmaceutical industry for a number of reasons. Firstly, the disease is a life-long condition which only rarely kills those it afflicts meaning that any drugs used in treatment will be required for the rest of the patient's life. This, combined with the fact that Crohn's most commonly occurs at a young age (teens to early twenties) means that the industry can expect a the patient-customer to require their products for fifty or sixty years! Compared to other illnesses, such as the flu, where a patient may require drug-based treatment for only a couple months or even weeks, Crohn's disease is an incredibly economically viable disease simply because of it insures a perverse form of customer loyalty that lasts a lifetime.

Crohn's also manifests a wide variety of painful and debilitating symptoms that require a wide variety of expensive drugs to treat and limit. Corticosteroids (budesonide, prednisoloneprednisone) or  aminosalicylates (sulfasalazine) to limit inflammation, immunosuppressants (mercaptopurine, azathioprine) to limit the damage done by your immune system, antiobiotics to prevent internal ulcers becoming infected and a whole host of painkillers ranging from paracetemol to morphine to fight the pain the illness causes. It may seem cynical, but there's clearly a lot of money to be made in traditional drugs-based treatment of Crohn's disease, so it makes sense that such companies would want to maintain the status quo. However, what money is there to be made in advocating of a lactose-free diet? Even if such companies did come across evidence that Crohn's could be cured drug-free with a simple dietary change, the most economically sound thing to do would be to conceal such information to prevent the loss of customers and revenue - something they are legally obliged to do, on behalf of their shareholders. As with the dairy industry, the pharmaceutical industry has nothing to gain and much to lose from this information.

While the industry should be lauded for providing treatment for Crohn's patients in the past, it's worth remembering that such drugs come with their own range of painful and crippling side effects. Using Corticosteroids can cause depression, suicidal thoughts, insomnia, bone thinning, cataracts and increased likelihood of infections to name but a few. Immunosuppressants also increase the probability of serious infections whilst also causing headaches, nausea, vomiting and fatigue. 

3. The Government 
The other major player in the game of Crohn's is the government. Unlike the pharmaceutical or dairy industry, governments have no financial incentive to not advocate lactose-free diets. In countries such as the UK where much healthcare is provided by the government, they'd be even keener to spread such information and thus save tax payer money not having to buy expensive medicines whilst also helping their citizens. So why hasn't this happened? Well, as I've stated before, the link remains unproven and governments simply don't have the same resources that private companies do to establish a connection. Milk is one of the most widely consumed drinks in the world and most governments wouldn't most likely wouldn't want to create a panic regarding something they weren't sure about, as this could prove politically embarrassing if it then turned out they were wrong.

Industrial lobbyists are also an incredibly powerful force in modern politics and both the dairy and pharmaceutical industries have their fair share, ready to quash potentially damaging (to them) ideas when they come up.

It's also possible that many government's simply aren't aware of the connection. Crohn's in not a widely known disease and as a health problem, there's very little voter demand for it to be addressed, especially when compared to other diseases, such as breast cancer and heart disease, which command a great deal of public attention and concern. Without a widespread scientific consensus or public demand, governments are unlikely to take risks or spend time or money dealing with a problem it most likely barely even registers.

Final Thoughts
If you're a Crohn's sufferer, I hope what I've said will persuade you to at least try a lactose-free diet. It's really not that hard to adjust to - lactose free butter, milk, cheese and even chocolate are available at many supermarkets. If you don't have Crohn's, but know someone who does, giving them this information would be great. If you have any questions, feedback or experiences you want to share feel free to leave a comment and I'll continue to update this post if and when new information becomes available.

Monday, 4 July 2011

A New Low, Lower Than All The Other Lows

A strong candidate for most shockingly awful news story of 2011, the revelation that News of the World journalists hacked Millie Dowler's phone in order to access her voicemail has spread worldwide in a tidal wave of contempt and revulsion. As if hacking a teenage murder victims phone wasn't low enough, the report also revealed that NotW hacks (the term has never been more appropriate) deleted much of her voicemail in order to clear space for more messages whilst Millie was still missing. Not only did this destroy potentially crucial evidence at a time when every piece of information was vital and confuse an already weak police investigation, it also provided the Dowler family with false hope that Millie was still alive (as it was believed only she had access to her voicemail). In a heartbreakingly cruel irony, this revelation actually lead to the Dowler family giving an exclusive interview to the News of the World where they expressed optimism and hope that the developments may signal the return of their daughter.

While hacking the phones of celebrities and politicians looking for dirt was sleazy enough, this utterly extinguishes the NotW's erstwhile defence throughout the phone hacking scandal that the only targets of hacking were fame hungry celebrities and potentially corrupt politicians, and that such hacking served the interests of the public.

David Cameron would be seriously unwise to still wave through Murdoch's takeover of BSkyB given these revelations and Rebekah Brooks, editor at the time of the hacking, who has also been remanded in the past for domestic violence as well as being linked with abetting police corruption in the Met will doubtless continue to avoid the spotlight as much as possible as she has done in the past. Her and her newspaper represent all the worst aspects of modern journalism and I can only hope justice will be served by any means necessary.

I hope you fucking die lose your job.

The Top 3 Lib Dem Justifications For Joining The Coalition (...and why they're bullshit).

Nowadays when someone says they'd vote Liberal Democrat, you can usually expect a series of justifications and excuses to immediately follow that statement as they uncomfortably try to justify their preferred party's role in the coalition. Some will play the numbers game and compare the number of respective MP's from the two governing parties, which conveniently ignores the fact that the Tories requires Lib Dem MP's to make up his majority, giving Nick Clegg the power to jettison literally any single piece of legislation he wants. Other yellow apologists argue that there was sadly no other option, which seems strange given the excitement in all levels of the party as the prospect of a hung parliament became more likely back in 2010. The most common strategy employed by party activists and ministers that have wandered onto TV shows lies somewhere between total denial and distracting them by pointing to shiny things, or in this case identifying supposed policy achievements the Lib Dems have accomplished while in government. Despite extravagant claims that the Lib Dems have implemented a vast proportion of the manifesto (I've heard different ministers and activists cite figures ranging from 50% to 80% already), only a small number of policies seem to actually be regularly mentioned. So without further ado, I present the Top 3 Lib Dem Justifications For Joining The Coalition (...and why they're bullshit).

1. The Pupil Premium

What it is.
The pupil premium is a £430 government bonus for every student on free school meals a school takes on, the aim being to discourage economic segregation in education and encourage schools to take more disadvantaged students. Sounds great, huh?

Why it's bullshit.
The pupil premium is usually evoked as a means of deflecting flak from the other education policy disasters the Lib Dems have suffered, a way of proving they're still the 'nice' party that cares for the poor even in the face of Dickensian Tory ambivalence and is easily one of the most loudly trumpeted Lib Dem policies. So by that logic it should be something really special right? While the policy obviously means well, two immediate problems spring to mind. Firstly, the school is under no obligation to spend the money on things that benefit the children that enabled the school to claim the money, and such children may never see a penny's worth of benefit from such a programme.

Secondly, the money that would pay these 'premiums' comes out of the existing education budget. You know, the one that's being well looked after and protected by the Coalition government. If you take money from something and then give it back to that same institution, you're not really helping it, just rearranging money around. Heck, if I stole £10 from a homeless man in order to give it to another homeless man, I wouldn't be fucking boasting about it. And given the massive cuts to education, it's impossible to argue that schools have benefited from coalition policy. 

2. Electoral Reform!

What it is.
We were all told how the Lib Dems heroically snatched much needed electoral form from the gritted teeth of the Tory Party, securing a much needed Democratic boost that would be fairer to smaller parties and enfranchise voters. OK, so it was only a referendum but surely the public would recognise the obvious superiority of a new voting system. And yes it was the Alternative Vote, a system that nobody really seemed happy with but still, any change would be an improvement right? And could even pave the way for more modern and proportional voting systems.

Why it's bullshit.
Obviously, this justification hasn't been around for a couple months now, but before May it really was arguably the biggest ace-in-the-hole the Lib Dem's had. Ignoring the obvious (and somewhat justified) self-interest on the party's part, Nick and co. should be congratulated for trying to bring about some much needed electoral reform. They should then be slapped for ruining any chance of Britain receiving the previously mentioned electoral reform. Prior to the 2010 election, support for electoral reform was strong and many people were hoping to see it happen. So what went wrong?
By the time the referendum rolled around, the Lib Dem brand had become so heavily toxified and associated with the Tory Party, even long time supporters of electoral reform were having trouble ticking yes, for fear of endorsing coalition policies and thousands of students and public sector workers just wanted an excuse to punish Clegg. Liberal Democrats also made the mistake of trusting the Conservatives to run an honest, low key campaign.

Good luck with that.
Nick Clegg ended up featuring heavily in No-To-AV propaganda, David Cameron vigourously joined the campaign to much Lib Dem consternation and the 'Yes' campaign barely seemed able to outline the positives of reform, let alone correct the lies of the 'No' campaign. Anyay, AV ended up being dealt a massive defeat and the cause of electoral reform was set back for another generation. Thanks guys.

3. Civil Liberties

What it is.
Pretty obvious really. When the coalition was agreed upon, it was announced that a shared passion for personal freedom and civil liberties would be the glue that bound the coalition, in stark contrast to many authoritarian new Labour policies.

Why it's bullshit.
The coalition has a decidedly mixed bag on civil liberties. On the one hand efforts have been made in removing people from DNA databases, Labour's Freedom of Information Act has been extended and ID cards have been scrapped, although it's hard to imagine any situation where that wouldn't have happened.

Most prominently, Nick Clegg attempted to position control orders as the centerpiece of Lib Dem civil liberties policy, but ended up compromising on it and giving it a makeover and a new name, a strategy that would again be used for the ASBO replacement scheme. Twenty-eight day detention remains a reality, random stop and searches continue and the Coalition government has also moved to criminalise squatting. Clarke's admiral attempt at justice reform also ended up being flushed down the toilet and was replaced with harsher sentences and more prison.

Throw in the most brutal crackdowns on legitimate protest since the miner's strike, the rise of kettling and vast seisures of information from 'contained' protesters, the Minority Report style 'pre-crime' style arrests around the time of the Royal Wedding and the ongoing charges allayed against the peaceful Fortnum & Mason protesters and you're left with a poor excuse for a 'civil liberties government'.

'Civil liberties' delivered via baton