Why I can’t accept the ice bucket challenge

The ice bucket challenge in which people film themselves having a bucket of iced water thrown over their heads, has reportedly earned MacMillan Cancer more than £250,000 in additional funds.

“That’s great!”  I hear you shout.

Well actually, no it isn’t for two reasons:

First, the bucket challenge was created by ASL (Amyotrophic lateral sclerosis) Association in the US for a specific reason: the shock experience of being immersed in ice cold water is the nearest reversible experience you and I can have to the experience of Motor Neurone Disease.  So the original challenge was either to donate to the cause or have the experience.  The “ice bucket challenge” makes a lot more sense now, doesn’t it?

So it is pretty disgraceful that MacMillan Cancer Care – an organisation with an annual income of more than £132 million – should hi-jack this campaign to fund their already bloated coffers.  And my objection is as much to do with public awareness as money – the UK Motor Neurone Disease Association has an annual income of more than £13 million. 

Cancer is one of the most publicised diseases, and cancer charities enjoy an income that is disproportionate to cancer’s impact on the population as a whole.  Other diseases such as stroke and heart disease have a much greater impact but enjoy a fraction of the funds that go to cancer care.

 

Motor Neurone Disease is relatively rare, but it is a horrendous illness.  So when a campaign to raise awareness takes off on social media, it is shocking to see bigger and more popular causes circling like vultures to grab the attention… and the money.

MacMillan has come in for a drubbing from many of their own supporters.  Some of the comments on their Facebook page are instructive:

“Umm...although I support the cause this idea was already in circulation in support of an ALS/Motor Neurone charity in the US. Isn't it bad practice to hijack another charity's campaign...?”

“So disappointed in Macmillan taking attention from the ALS campaign doing the same thing. A high profile charity should know better. And the excuse that ALS bucket challenge is only a US campaign (as tweeted by you) doesn't wash with me. Something that successful for a little known charity was always going to be picked up by sister charities over here. Shame on you!”

“My mum has terminal cancer and I support McMillan 100% but the ice bucket challenge is supposed to raise awareness for ALS/MND as so many people are unaware of how cruel this disease is. People need to know about this, just as much as cancer!”

MacMillan has attempted to counter these comments by claiming that nobody “owns” the ice bucket challenge.  They make the spurious argument that people have been dousing themselves in water to raise money for charities for decades.  As such, they were as entitled to jump on the bandwagon as anyone else. 

We must hold them to this next time they produce a ribbon, wristband or badge to raise money for cancer care.  Presumably they will accept the argument that people have been selling these items to raise money for charity for decades, and as such, nobody “owns” them.  Of course, were the tables reversed in this way, you can guarantee that MacMillan’s lawyers would be all over you! 

Unfortunately, because of the bully-boy antics of organisations like MacMillan, the ASL Association has now had to use precious resources to try to trademark the “ice bucket challenge” in order to prevent further abuse.

And remember, unlike a simple bucket of water, the ice bucket challenge was devised precisely because it could be related to the symptoms of Motor Neurone Disease.  I have yet to come across anyone with cancer who would relate this experience to their (undoubtedly equally unpleasant) symptoms.

This brings me to my second reason for not accepting the ice bucket challenge.  Charities like MacMillan have morphed into an unpleasant form of corporate body that has all of the drawbacks and few of the benefits of the private and public sectors.  It is a mutli-million-pound entity whose de facto first duty is to more than 1,000 staff, some of whom enjoy the kind of incomes that ordinary donors could only dream about.  It privately provides a service that should be being delivered by the state, and thereby adds to the decline and privatisation of the NHS.  And, as this latest scandal shows, it has the predatory instincts of the most ruthless of private corporations.

I refuse to fuel its direction of travel, irrespective of the many people who undoubtedly benefit from its activities.  Indeed, I am sure its beneficiaries would be much happier if the service was delivered by the NHS and accountable to Parliament.

So am I just some curmudgeonly old git who refuses to be charitable?

Well, this week I have been doing a lot of pro bono design work for a local charity in Cardiff.  Just a couple of weeks ago, and despite suffering with joint pain, I rode a bicycle 55 miles from Brecon to Cardiff Bay to raise money for a local charity.  So I am not against charity per see.  Rather, I am against the direction that a handful of super-charities have taken.

In my book, What’sWrong With Charity? I explain in greater detail how just 1.2 percent of charities in England and Wales enjoy 70 percent of all charity income.  This has led to a series of behaviours that will ultimately destroy the charity sector as a whole.  These include:

o    Inadequate legislation and regulation

• Increased fraud and mismanagement
• The end of “voluntarism” and the over-payment of employees
• Tax avoidance
• Hi-jacking political discourse

These are not reasons to stop supporting charity.  They are reasons to stop supporting multi-million-pound organisations in favour of supporting local charities that can make a difference to your community.  Importantly, you can take the time to get to know your local charities, find out whether they are any good, and (assuming they are) develop a relationship with them that goes beyond throwing cash in a tin (or, indeed, a bucket of ice water over your head).

Another Idiot on the BBC

When Dr Sally Mitton agreed to be interviewed by the BBC Newsbeat programme about the rise in inflammatory bowel diseases in recent years, she was probably unaware of the political subtext behind the story. This would make her what political philosophers refer to a a “useful idiot”.

When asked about the cause of inflammatory bowel disease - Dr Mitton quite rightly stated that, “we know that there are many genes that predispose somebody to get Crohn’s disease”. She probably should have gone onto explain that currently despite a raft of medical research, scientists have no idea what causes or triggers inflammatory bowel disease. She might also have said that there is currently no known cure; that patients who have the condition experience severe pain, internal bleeding, and severe diarrhoea and dehydration; that there are drugs that can bring about remission, but only at the cost of potentially life-threatening side-effects.

Unfortunately, Dr Mitton chose to espouse her own particular pet theory as to what factors might make inflammatory bowel disease more common: “but we also know that lifestyle factors like eat a lot of junk food or taking many courses of antibiotics may make it more likely to happen”. One suspects here the Dr Mitton has her own agenda. It is clear that many clinicians now regard junk food as a major cause of metabolic syndrome, a condition that is now so prevalent that it threatens to wreck the National Health Service. It is also clear that many clinicians are greatly troubled by the rising antibiotic resistant bacteria, which threatened to make many common conditions incurable, and which in turn may also add a further burden to over stretched National Health Service.

To raise these concerns on the back of a story about a widely misunderstood illness is foolish to say the least. It is clear that the establishment - the major political parties, the civil service, the BBC, and other news media have an agenda to begin the privatisation and dismantling of the National Health Service on the back of a campaign to demonise people with severe illnesses and disabilities. We have already seen the BBC acting as a cheerleader for the current government’s attempts to demonise disabled recipients of welfare benefits. One of the key ways in which this is done is to use stories that portray the disabled as being at least partially responsible for their own plight. So, for example, where people with disabilities can be shown to have smoked, drank excessive alcohol, or allowed their weight to spiral out of control, they are blamed for being unable to work and to being a burden on wider society.

We don’t know whether Dr Mitton is another disability denier (or simply another hard-pressed clinician doing the best they can in an over-stretched system). If she is, then she will no doubt be delighted by the manner in which the BBC chose to cover the story.

Playing down the genetic causes of inflammatory bowel disease, the BBC chose to highlight Dr Mitton’s junk food hypothesis. It is worth quoting the well respected, evidence-based NHS Choices here:

"There is no evidence to suggest that a particular diet can cause Crohn's Disease, although changes to your diet can help control certain symptoms and may be recommended by your specialist or dietitian".

If Dr Mitton is not a disability denier that she may wish to reflect on the damage that her utterances will have done. On forums, blog posts and social media, people like myself who have to live with inflammatory bowel disease have been outraged by the coverage. As with many conditions, inflammatory bowel disease is seldom talked about (other than enclosed forums of fellow sufferers) and is often confused by the general public with a much less serious irritable bowel syndrome - a distressing but ultimately minor and usually stress-related condition.

Already, people who suffer inflammatory bowel disease are experiencing ignorant comments about the condition being caused by their dietary habits. Worse still, we - people whose lives are threatened by the condition, the drugs that we have to take to keep it in remission, and the surgery that we often have to undergo to avoid premature death as a result of the condition itself - are now being told that it is possible to treat the condition solely by changing diet.

This is far and away the greater damage done by Dr Mitton’s comments. As with all conditions, inflammatory bowel disease attracts the usual army of cranks peddling a whole raft of alternative and complementary therapies. High among these are the so-called “nutritionists” who prey on people’s fears about the potentially serious consequences of formal medical treatments. Who among us would not want to believe that simply swapping apples for bananas would be enough for us not to have to take a drug like azathioprine (a medicine whose side effects include several cancers, liver disease, kidney failure and a whole raft of other unpleasant and disabling effects) for the rest of our lives.

Dr Mitton more than most will be aware that these treatments are not dished out willy-nilly. In a seriously strained National Health Service nobody is about to pay the treatments that people don’t need. When somebody with inflammatory bowel disease is told that they need surgery and/or a course of immune suppressant drugs, it is because there is a high risk that they will die without the treatment.

I prefer to believe that Dr Mitton is a useful idiot - someone who ignorantly blunders their way into providing expert cover for a viewpoint that the establishment wishes the general public to believe. While I don’t doubt that government ministers in general and Iain Duncan Smith in particular would like to go around blaming sick and disabled people for their plight, it is clear that such cruelty would not be tolerated by the wider public. So it suits them to have the media wheel out politically naive academics such as Dr Mitton to say these things for them. The public is much more likely to believe a doctor than they ever would a politician.

If Dr Mitton really wants to do something about junk food, we would all be better served if, instead of blaming dangerous illnesses on its consumption, she just came out straight and called for better regulation of the food industry, taxes on dangerous foods, and investment in public education about the harm is done by many of the substances that are commonly found in processed foods.

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Since writing this post, Dr Sally Mitton was contacted by the charity Crohn's and Colitis UK, and gave the following apology:

20th June 2014

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and Iwould like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

This confirms my view that Dr Mitton is a "useful idiot", and her treatment by the BBC should be born in mind by other clinicians and academics who are tempted to trot out personal opinion instead of sticking to the scientific evidence.

Is this sexism disguised as science?

Women account for two-thirds of all cases of anxiety and depression.  That is a "fact" that has been established for decades.

But "facts" are tricky things.  A "fact" can be something that is happening out in the real world, or at least a proxy measure of something that is happening in the real world.  But a "fact" can also be a problem with the way look at the world.  Maslow once wisely said that "if all you have is a hammer, everything looks like a nail".

So when a group of Pennsylvania fMRI technicians report that higher rates of depression in women are explained by oestrogen causing greater blood flow to the emotional centres of the brain, I am naturally suspicious.  A functional MRI scanner is a very complex and expensive hammer, and the technicians that use it are like Maslow's young boy who - given a hammer - finds that everything needs to be thumped!  

Of course they want to show that their hammer is useful; not least to justify their continuing research funding. But do their findings stack up?  There are several reasons for believing that they do not.  

The least scientific of my objections is that the study was reported in the Daily Mail (famous for inventing "facts" about health).  This does not prove anything, but it should sound a note of caution.  It is sensible never to believe anything that the media in general, and the Daily Mail in particular reports about health.

A more important concern is with the study itself.  The study was not a test of differences between men and women affected and not effected by depression.  Indeed, the study itself had nothing to do with depression.  Rather, it was an examination of brain development in 922 healthy young women aged between 15 and 22.  It did not distinguish men (who were not even studied) from women, or healthy women from those with mental illnesses.

The study found that changes in oestrogen levels correlates with increased blood flow to the emotional centres of the brain as women go through puberty.  But, since the study made no comparison between women with and without mental illnesses like anxiety and depression, there is no way of knowing whether this finding relates to depression at all.  Indeed, since the increase in blood flow occurs in all women (not just the 1 in 10 who are diagnosed with anxiety or depression) there is good reason for believing that this finding has nothing to do with depression whatsoever.

The biggest objection concerns the way we define and measure mental illness.  Psychiatrist and Radiologist Daniel Amen points out that "psychiatry is the only clinical specialism that does not examine the organ it claims to be treating". Conditions like anxiety and depression are not real, objective illnesses that can be measured in the way that we measure an infection, a broken bone or a damaged organ.Where other specialisms use blood tests, x-rays, ultrasound scans and MRI scans to see what is going on, psychiatrists make subjective (educated) guesses based on patients' descriptions of their symptoms.

The patient may be wrong or incomplete in his or her description of the symptoms.  The psychiatrist may misunderstand what the patient is saying when interpreting the symptoms.  This alone gives serious cause for concern about the way mental illnesses are diagnosed.  But even more worrying is the way particular clusters of symptoms come to be defined as "real" illnesses that increasing numbers of psychiatrists and drug companies claim (without evidence) to be disorders of the brain.    As Professor Sami Timimi points out, "most psychiatric diagnoses have been literally voted into existence".  Diagnostic manuals are drawn up by groups of psychiatrists - the majority of whom receive significant funding from the pharmaceutical corporations - who vote upon which symptoms are included (and excluded) from a diagnosis.

So what if the "fact" that depression is much higher in women than men is the product of another of Maslow's hammers - that once a pharmaceutical company has a treatment, then every treatable symptom looks like an illness?  Depression in men would be a lot higher if symptoms such as increased anger and irritability, and increased alcohol and drug use were included in the symptoms clusters used in diagnostic manuals. However, these symptoms are not improved by antidepressants, so they have been excluded.  As such, it may only appear that more women than men have depression.

Throughout the ages, sexism has been based on unsubstantiated claims that because women are biologically different they are inevitably socially, politically and economically different too.  Without care, the use of fMRI scans today to suggest that, for example, women are more prone to mental illness than men, may be little different to Victorian phrenologists feeling the bumps on people's heads to determine who would be a criminal.

There may be real differences between the sexes in predisposition to mental illnesses.  But the difference could just as likely lay in the very poor manner in which mental illness is defined and measured.  Either way, bad science and bad science reporting add nothing to our knowledge but a great deal to our prejudices.

Did Brave Frenchmen Die in Vain? More UKIP incompetence...

If you are going to hijack our shared history to support your narrow-minded xenophobic messages, the very least you could do is make an effort.  

When UKIP decided that it was okay to use the graves of men who died on the Somme under the headline - "They Fought and Died to Keep Britain Free from Foreign Invasion and Control by Foreign Powers" - at the very least, you would expect them to use a photograph of British war graves.

Instead, they used an image from the BBC website:

These are graves from the Australian Imperial Force cemetery just outside Flers...  So not even a British cemetery.  In fairness, the AIF cemetery contains 2,811 British, 402 Australian, 163 French, 84 New Zealand, 68 Canadian, and 27 South African graves.  So it would have been possible to find a photograph of British graves within the AIF cemetery.  But - ironically given their anti-foreigner stance - the picture is of the graves of French solidiers who, whatever else they were fighting for, were assuredly not fighting to keep Britain free from foreigners!

UKIP seems to be picking up where the BNP left off - presumably in an attempt to woo former BNP supporters.  In the 2009 European election, the BNP used an image of a Battle of Britain spitfire to attack Polish immigrants, but failed to notice that the spitfire had Polish insignia.  It is worth noting that in the dark days of 1940, Britain owed her survival to the Commonwealth, French and Eastern European pilots who volunteered to fight for her cause.  Moreover, Britain only ended up on the winning side because millions of foreigners joined the allied armies.

The way UKIP stirs up racism and xenophobia while pretending their views are reasonable is objectionable. I am disturbed that they legitimate the racist views of a highly unpleasant minority of my fellow citizens.  And I am appalled that UKIP refuse to condemn racism and xenophobia among their supporters.  But most of all, I object to the fact that they are incompetent in their xenophobia.  

At the very least, when you are trying to employ the imagery of the two World Wars, try to choose an image that doesn't remind everyone that were it not for the sacrifices of millions of men and women from more than 100 countries around the world, Germany would have won!

Is Mindfulness the New Prozac?

Mahatma Gandhi once said, “First they ignore you, then they ridicule you, then they fight you, and then you win”.  This sentiment might well be applied to the recent popularity of mindfulness as a means of treating common mental illnesses and as a method for stress reduction.

The practice of mindfulness – of stilling your thoughts, relaxing your body, and becoming focused on the here and now – has been around for several millennia.  Popularised in the west by the hippy generation, mindfulness aka meditation was largely ignored as a somewhat obscure practice that could have little useful impact for most people.  It was only when professor of medicine, Jon Kabat Zinn brought the meditation practices learned from yoga and Zen Buddhism into medicine that the potential benefits of mindfulness for people experiencing stress and mental health problems began to be realised.

The modern forms of Mindfulness-Based Stress Reduction and Mindful Cognitive Behavioural Therapy have only proven themselves in the last 20 years, and were largely ignored (and occasionally ridiculed) until about 5 years ago.  However, in the last 5 years, we have witnessed a growing interest in the application of mindfulness practice not just as a mental health therapy, but as an aid to educational and business success.

There is no doubt that the practice of mindfulness can be very helpful for thousands of people affected by common mental health problems.  But it isn’t a miracle cure.  Nor is it an entirely benign and peaceful practice – while the aim of meditation is to switch off your thought processes in order to become fully present, the practice often involves wading through traumatic memories, fears and worries.  Both Buddhist and yoga meditation teachers warn that your mind (like an unruly monkey) will fight hard every time you set out to tame it.  So mindfulness is a life-long practice, not a 6-week quick-fix for the often profound psychological and social causes of mental illness.

Like Prozac and Cognitive Behavioural Therapy (CBT) before it, Mindfulness has followed a path to popularity that will inevitably lead to mass disappointment.  This disappointment will come not from mindfulness itself – Prozac and CBT continue to help millions of people every year, and there is no reason why mindfulness should be any different.  Rather, the problems come when politicians and public health systems seek to use these approaches as one-size-fits-all mass treatments.

Prozac didn’t fail because it didn’t work.  It failed because it didn’t work for everyone.  CBT has not failed because it didn’t work.  It failed because it didn’t work for everyone.  Mindfulness won’t work for everyone either.

Antidepressants like Prozac failed in part because the pharmaceutical companies’ marketing departments grossly over-stated their impact on people with depression.  But a larger part of their failure lay with the millions of people who believed that all they had to do was to take Prozac. Similar failures are now emerging in relation to CBT.  Whatever its initial promise, the attempt to deliver it to a mass of patients through the English Improving Access to Psychological Therapies (IAPT) programme has resulted in a 58 percent failure rate.  And just like Prozac, far too many people have been led to believe that attending CBT sessions was all they had to do.

One thing Prozac, CBT and mindfulness have in common is that those using them to reduce their stress or treat their mental illness must also take action.  If they work for you, drugs like Prozac may lift your mood and increase your energy levels so that taking action will be easier.  Talking therapies like CBT can help you to work out what actions you need to take. Mindfulness can also help you to unlock the very core of your being, enabling you to develop core skills and realise your deepest dreams and wishes: But only if you take action.

The problem is that most of us either do not want to, or do not know how to take action.  So with mindfulness now emerging to eclipse CBT (just as it eclipsed Prozac) as the most popular treatment for common mental health problems, it looks set to follow the same trajectory from miracle cure to disappointment.