cancer

"I do my own research"

Something that I see a lot in on-line debates about alternative medicine is phrases like “I did my own research” or “people should be allowed to do their own research and make their own decisions”

However, I don’t think that the vast majority of people are able to do their own research. Now, that’s probably a pretty unpopular opinion. It’s patronising, paternalistic, and it flies in the face of patient choice. Who am I to question the intelligence and abilities of other people? Why do I think I'm so clever compared to anyone else out there? Allow me to explain myself.

I've been a pharmacist for a very long time now. From uni, through pre-reg, to my own revision at work, I've been taught critical appraisal skills. Yet to this day, it’s something that I actually find really hard work. It’s a skill that requires continual honing, and every time I use it I feel like I am fighting with my brain. 

Even in the last two weeks, I've been revisiting my critical appraisal skills to make sure they are up to date. I've done some in-house work, three on-line courses, and a one to one training session. Yet I still find myself sat here at my desk for several hours, if not days, looking over the same study with a furrowed brow, desperately trying to make the numbers and statistics tell me their story.  If I find it so hard, then how on earth is someone without any medical background or critical appraisal training supposed to do any of it? 

There’s hazard ratios, odds ratios, confidence intervals, numbers needed to treat, event rates, absolute risks and other confuddling terms to deal with. I naturally struggle with numbers at the best of times; like most people, I much prefer narratives. That means that I have to constantly argue with myself to keep looking at the results page, rather than just flicking to the discussion. Because if I did that, I'd be relying on what the authors, with all of their possible biases and agendas, say their numbers say. Then, when I eventually manage to squeeze the swimming mass of figures into some sort of order in my head, I find out that these numbers aren't the full story, and I need to dig even deeper into other analyses of the same figures to find out what’s really going on.* 

A quick and very simplistic visualisation of all the layers of interpretation that might lead to information found on your common or garden health information website. That's a whole lot of bias.

A quick and very simplistic visualisation of all the layers of interpretation that might lead to information found on your common or garden health information website. That's a whole lot of bias.

It’s not a pleasant task by any stretch of the imagination. It really does feel like a mental marathon. I often question whether I am even up to the task- I can end up feeling stupid, and confused. But in order to really figure out whether or not a drug works I need to strip away all the levels of other peoples’ interpretation and start from scratch, with the cold, hard, impersonal numbers. That way I can build my own narrative, uninfluenced by what the study’s authors or sponsors want me to think, by what newspapers want me to believe, by what campaigners want me to know. The only way to know the truth is to start right at the bottom, in a dark dank pit of statistics, then to slowly start building yourself a ladder until you emerge, blinking, into the pleasant knowledge that you've worked out what on earth is going on.

This sort of raw data is not only extremely hard to deal with once it’s in front of you, but its also pretty difficult to come by. Finding it in the first place includes searching multiple medical databases- and these things aren't just a quick free text search like you would do on Google. Constructing a search can in itself take an hour or so, and then you have to trawl through the results to decide which are relevant to what you are specifically looking for. For me, most of the time, a question is structured like this:

What is the evidence that [drug/ group of drugs] works for [disease] in [patient group

 So, in my poorly drawn Venn diagram below, I need to find those holy grail papers that reside in the pink area:

I am truly terrible at MS paint, but you get the idea.

I am truly terrible at MS paint, but you get the idea.

What a typical EMBASE search looks like. This is for a new drug with few synonyms so its a fairly straightforward one. Others can have forty odd lines of searches.

What a typical EMBASE search looks like. This is for a new drug with few synonyms so its a fairly straightforward one. Others can have forty odd lines of searches.

Some of these papers might be pay-walled, so it’ll take me a week or so to get my hands on them. Some of them might initially look promising, but once you start to dig down into the figures you see that there might actually be problems with how they were undertaken or reported, or they might turn out to not quite fit in some way- perhaps the dose they used in the trial is different to the licensed dose in the UK, or the people enrolled into the trial don’t quite fit the population you want to know about, or perhaps the trial just didn't recruit enough people so any results from it are invalidated.

I've been doing this job for years, and I really do still struggle with all of this stuff. That’s not because I'm poor at my job, or because I'm stupid, or because I haven’t put the effort in to understand it. It’s because, when it comes down to it, this stuff is really bloody hard. It’s time-consuming, boring, and unintuitive.

People might well feel like they've done their own research. They might spend several hours digging about on the internet and feel empowered by any decisions that they make. But what they don’t realise is that what they've been researching isn't just the information- it’s the information with many, many layers of interpretation (and therefore bias) added. For a choice to be truly informed, you need to go right back to the start, to those terrifying tables of numbers and statistics. That’s simply not realistic for the majority of people.

Far better, then, to learn how to decide on whose interpretation you’re going to rely on. Will it be those that take the media reports at face value, or who have an agenda or a product to sell you? Or will you go with those that have years of training in how to pull apart complicated data and disseminate it in understandable ways?

Hxxx

*I thought I’d give you a quick real life example here, but I thought it best to asterisk it because I've probably bored you enough already. I'm currently looking at a drug called edoxaban and its use in reducing the risk of stroke in patients with atrial fibrillation. It’s the newest in a series of novel oral anticoagulant drug- they’re supposedly like warfarin, but less faffy. So I find and look at the main trial, and spend days unpicking the stats. It looks like both strengths used in the trial are no worse than warfarin, and the higher dose might even be a little better. Great, right?

Well, that’s not quite the end of the story. Because it turns out- and this isn't reported in the trial at all, but instead is contained in the FDA’s briefing document- that in people with fully working kidneys, edoxaban is actually worse than plain old warfarin. In people whose kidney’s aren't quite at full capacity though, it might work better than warfarin. So the overall trial results are kind of skewed, and if we didn't dig deeper, we might have been giving a whole group of people a more expensive drug with worse outcomes than warfarin. Even the FDA findings are borderline- some of what they describe doesn't reach statistical significance.

Why it's okay to question a charitable cause

I wrote last year about how I dislike Facebook “Games” that “Raise cancer awareness” in a vague and most probably pretty useless manner.



There’s another one doing the rounds – that of taking selfies without makeup on the raise awareness of cancer. The specifics of where it arose are shadowy and exceptionally vague. Some people state that it is for breast cancer awareness, some just for cancer.



It actually seems to have arisen from a well-meaning but very misguided campaign by some friends of a girl who recently hit the headlines after dying from cervical cancer – yet not one selfie post which I have seen mentions this particular type of cancer.



This appears completely random. There’s no connection between wearing makeup and “being aware” of breast cancer. The posts do not on the whole give information and advice on how to check your breasts for signs or what symptoms to look out for.



I’ve questioned it on Facebook, as have others. The response has been… defensive. Of course people who are posting selfies and who are supporting them are doing so in good faith, and I have no problem with this. What I do have a problem with is the vagueness of these campaigns, of the fact that adding “for cancer” on the end of any old nonsense seems to be a code for “Do not question this or else everyone will think that you’re a meanie and will get all offended with you.” This leads us down a dangerous path, which in rare cases leads to real, tangible harm. Those cases - though rare - should be enough to make us stop for a moment and question.


I drew a little cartoon to explain this. I’d like to point out that it’s generalised, and simplified, and is no way aimed at well meaning people who take part in potentially questionable campaigns. Its just the process that I go through, and what many other people do, and I would love it if more and more people understood it, and why it is perfectly okay to question any charity campaign.

Scenario One:
 

Scenario Two:

A healthy dose of skepticism can make any campaign worth its salt even stronger in the end. Being open and honest when questioned only serves to strengthen a cause. Defensiveness doesn't help anyone.

Hxxx

Postscript: This selfie craze ended up making a lot of money for breast cancer charities, which is great. No one has ever denied that making money for charities is wonderful. I'd argue that donations started for this- as well as the ALS ice bucket challenge that followed- not instead of, but because of, healthy skepticism about the purpose of the craze. 

Facebook, breasts, and why the combination of both has been annoying me

"I like it on the living room floor!"
"I like it on the kitchen counter!" 


Blah blah blah. These are the sorts of bawdy Facebook statuses that surface every year. They're then followed up with a message along the lines of "hey, let's not tell the MENwhat we're doing, but according to this arbitrary nonsense below, put something attention seeking as your status update to help raise awareness of breast cancer".

There's always the inevitable guilt trip of "most of you wont bother with this, and you're all terrible, terrible, evil people who don't care about people with cancer and you will all go to hell"

These sorts of statuses/ messages have always bothererd me. The whole Carry On Breast Cancer vibe is just uncomfortable, for starters. They are infused with the same sort of superstitious, guilt-ridden nonsense as the old chain letters you used to get back in the late 80s. And people seem to go to great lengths to defend them, and any even remotely negative comments about them are batted straight back with an unthinking "why wouldn't you want to raise awareness of breast cancer? are you some sort of EVIL PERSON?!"  I have raised the point on my own Facebook and have also seen some friends take flack for daring to question these games. 

There is a great piece of writing about exactly this subject that you can find about this subject here. You'll also find a piece from Skepchick here. However, there are a couple of other points that I want to raise in addition and to compliment the points raised in that piece, and some of the arguments used to defend the game that I have seen used on Facebook. These points are in no particular
 

How much awareness are these "games" raising? 

Given that the messages contain no information on the symptoms or how to check for breast cancer, or any links to good quality information sources, I'm not convinced that it is raising awareness. There have already been huge campaigns to raise awareness of breast cancer- people in the main already know that the disease exists. Therefore this campaign needs to add something specific to that: how best to check for signs of breast cancer, practical tips, or signposting to other good quality sources of information. Furthermore, actively excluding an entire gender or other large group of people from your awareness campaign seems like a very odd tactic indeed. The messages include how the "bra game" made it to the press- this appears to be the case, although not in the way the message would like to imply. But have any of the other campaigns that surface regularly made it to the press? I certainly haven't seen so.

Who has started these campaigns, and what charity etc are they raising money for? its not clear, and it would seem that no one knows who or why they originated. So what sort of awareness are they really raising?
 

Cold, hard cash

These games aren't asking for money to be donated to any particular charity. Yet, when it comes to cancer research, it is cold hard cash that makes the difference. There is a risk that people may feel that by taking part in the game, they have done their bit already in helping to raise awareness, which might discourage any further action. In actual fact, if you want to help, donate some money to a cancer research charity.Is there any evidence that this sort of bid to raise awareness translate into money being donated? No, of course there isn't, so we should all be focusing our efforts elsewhere. 
 

Dignity

Really people, are we that unimaginative that we require this arbitrary nonsense to put something titilling as a status? Do we so desperately want to feel a part of something that we will lower ourselves to this sort of bawdy crap? Can we really not think up any better innuendos to grab male attention as we appear to be so desperately doing here? These sorts of statuses sit on the same level of annoyance as the ones that are simply an unhappy face so that many people will reply with "what's up hun?" and the original poster will get lots of attention. If you want to be tacky and attention seeking, go right ahead, but do so with a bit of imagination and personality, not according to some formulaic crap involving handbags.

Exclusion

In 2010, breast cancer rates in men were approximately 1 per 100,000. Just imagine how emasculating, shocking, and devastating this diagnosis may be. The fact that bright pink is constantly associated with this disease can't help matters. That awareness campaigns like this one actively exclude men is frankly unforgivable. Campaigns that raise awareness of testicular or prostate cancer are often very inclusive of women (I'm thinking of the Movember campaign in particular, problematic as it may be for other reasons), despite the fact that for obvious reasons the likelihood of women getting these types of cancers is zero. 

In addition, as a good friend of mine pointed out, it may be men who notice or feel changes in their partner's breasts before they do. Why would they therefore be excluded from any awareness campaign? It just doesnt make sense.
 

Humour

"Oh but its just a bit of a laugh isn't it?". I've seen this used as a defence for these games. No actually, no its not a bit of a laugh- its breast cancer, for crying out loud. Humour is undoubtedly a powerful tool in coping with such a diagnosis, but this is going to be different for everyone and needs to be treated as such. some people might find this funny whilst others might find it plain offensive. No Facebook chain message is going to be able to deal with the complexities of when and how to use humour in the face of a potentially devastating diagnosis.

So there is some thoughts to be going on with. I may or may not add to them as time goes on. In the meantime, if you'd like to do your bit, you could always donate a few pennies here. Meanwhile, for information on how to check your breasts, try this Breakthrough Breast Cancer page.

Hxxx

The Vaper Verdict

I seem to have gotten myself a bit of a reputation as a Vaper-hater. In truth, I'm actually really not.

I even once owned a disposable e-cigar. It was a good few years back now. Although I consider myself a non-smoker, I do smoke the odd cigar, but about one a week and only when the weather is nice (so about 4 days a year then) and only when someone has brought me some back from their holidays probably does not constitute a habit, or would be considered the world's most pathetic addiction. I would never dream of smoking indoors, and somebody thought it would make a nice stocking filler for me one year.

I used it a few times, and it was alright, in the same way that a Pot Noodle is mildly enjoyable in its own right, but bears no resemblance to a steaming hot bowl of freshly cooked spicy Szechuan chicken in udon noodles (no 69. on the menu at Nudo, my favourite restaurant in Newcastle. Its always giggle-worthy ordering it). E-cigarettes are the Smash mashed potato of the smoking world, a Cup-A-Soup to a home-made broth.

I can see how it would be good to have something vaguely resembling a cigarette if you're trying to give up smoking, and I can certainly see how a nicotine delivery method that avoids all the tar, chemicals and other gunk that smoking dumps in your lungs is more healthy.

My reservations are thus:

  1. If they're unregulated, you have no idea what's in them. It might say on the pack that it contains x mg of nicotine and chemicals y and z but there is no guarantee of this. Some have been found to contain toxic chemicals like ethylene glycol, for example. Its undoubtedly likely that they still contain less dangerous chemicals that cigarettes, but it would be very nice to have that guaranteed.

  2. There's no long term safety data. We literally don't know what the long term effects of these things are. For all we know, the seemingly safe-at-first ingredients could actually prove to be carcinogenic, say, when inhaled in this way in the long term. Admittedly its unlikely the products would be as bad or worse than smoking, but without the studies we just don't know. Theoretically they may seem like they're going to be harmless, but without the data there to back it up we just cannot make that assumption- its that sort of reasoning that lead to the thalidomide disaster, for instance. Unknown does not mean safe.

  3. There's evidence that products are often do not contain what it says on the label (if they even have a label at all). A study in the BMJ's Tobacco Control found that products contained variable and potentially dangerous amounts of nicotine- most often the product contained less than was stated. Now, if I'm paying for a product that says it contains 72mg/ml of nicotine, I expect that product to contain 72mg/ml of nicotine, just as I would expect a 500mg paracetamol tablet to contain 500mg paracetamol. If it contains less than this, I'm essentially being ripped off. The other available nicotine replacement products- patches, gums, inhalators etc- all have a license, and I don't really see why these electronic cigarettes should be any different.

  4. In smoking cessation, using a product which looks like a cigarette might be helpful in the short term, but it doesn't help to address the habits of smoking rituals, and in my experience of helping people quit, that's half the battle.

  5. The risk of serious accidental nicotine poisoning in both adults and children. 

  6. There is a risk that the ease of use of the products and ability to use them indoors might actually increase nicotine intake in some people.

  7. Even if nicotine itself were entirely safe (which it isn't), its still an addictive substance. Any addiction can lead to harmful effects in a person. For evidence of this, try speaking to me on a day when I have not had any caffeine. If I added up all the time and money I have spent in my life engaging in drug-seeking behaviour to feed my addiction (mainly desperately trying to find the nearest kettle or coffee shop), I suspect it would be very upsetting.

Today there has been, in my opinion, some good news. The MHRA have decided to start . This decision essentially eliminates concerns number 1, 3 and 5 and starts us on the road to also ruling out concerns 2,4 and 6. The BMA have responded enthusiastically to the news, stating:

“We can now build on this and press for good research which looks at the efficacy and health implications of e-cigarettes. It’s really important that we find out if the hand to mouth use of e-cigarettes either breaks or reinforces smoking behaviours. We need to know if e-cigarettes actually help smokers quit."


I'm also enthusiastic about this step. Whilst it may lead to decreased availability and choice of these products, it will hopefully lead to a smaller number of better quality products being legitimized and incorporated more formally into smoking cessation or harm reduction schemes- if they are proven to work in robust clinical trials. This is yet another case where, instead of waiting until we have good, robust data that a product works and is safe, it has been widely sold and adopted by users in lieu of risk or efficacy information. There will no doubt be an outcry from users and manufacturers, and wails that the MHRA have banned e-cigarette sales, that its a Big Pharma conspiracy to give everyone cancer so they can sell more drugs, that big evil corporations are trying to trample the little guys down, when all they are trying to do is save some lives. But none of this regulation means that.

All a manufacturer of e-cigarettes would need to do to continue selling their product is to prove its safety, efficacy and quality. It will take money and time, but if they have been already producing their wares safely and in accordance with Good Manufacturing Practice guidelines, they're already some of the way there. Gaining a license will of course cost time and money, but if these manufacturers are genuinely interested in saving lives- and not just unscrupulously making profit- they would see the value in the licensing process, and the opportunities available for a licensed product in the long run.

So here's to what could be start of a new dawn of smoking cessation or harm reduction. I really hope so, but will reserve judgement until the evidence starts piling in.

Hxxx

Some thoughts on quality and quantity

The sad news about Iain Banks has gotten me thinking today. 

I'll be honest here and say I've never read any of his books (so many books in the world, so little time!). I know nothing at all about him. Yet when I read his statement at work this afternoon, I had tears in my eyes. His words were so dignified, so stoical, and so noble that they really touched my heart. The ability to have humour at such a time is something I admire hugely.

I'm sure his words are the tip of the iceberg. I really can't even begin to understand what a lengthy, horrific process it must be to come to terms with such news. But what struck me most of all was his plans to spend his remaining time with his family, friends and loved ones. Isn't that, when it comes down to it, what we would all want? And yet it seems to me that cases such as his appear to be in the minority of those that are reported in the media. 

Many moons ago, at university, I went to a lecture by Sir Michael Rawlins. He discussed the thorny issue of how NICE assess drugs, and he touched upon quality of life measures. I remember being utterly shocked when he said that the majority of terminal patients choose longevity over quality of life. That's always stuck with me, as it seems so starkly counter-intuitive to me that I genuinely can't get my head around it. I also know that's very easy for me to say, and that I have absolutely no idea what it must be like to have to face such decisions. A few years ago I did my Diploma in Therapeutics, and we had to try out some of the quality of life rating scales that are used at NICE. Believe me, this really gets you thinking about how difficult these sorts of choices are. I also remember a really brilliant workshop with Claud Regnard, a palliative care consultant and author of some highly-esteemed books in the field. I remember being bowled over by how positive and creative such a potentially depressing subject could be.

We're a nation (and potentially a planet) that are very medicalised. We hunt for a cure for everything, and a miracle pill to make us cleverer, slimmer, healthier. When given the choice between taking a tablet and changing our lifestyles, I think it's safe to say that most of us would rather opt for the former. This is fuelled by any number of things, but I think the media has a lot to do with it: there's always a story about how some new drug is going to cure Alzheimer's, or obesity, or heart disease, and there's story after story of families desperately searching for a cure or treatment that can cure their love ones.

And here's what I've been thinking about: when all the options have been explored, and there is no cure, practitioners of conventional medicine (by which I mean medicine which is proven to work) will usually tell you so. 

At this point, the quest for something else, perfectly understandably, kicks in. Of course you would grasp at any straws, any vestige of hope. And so, right at the time where people should be spending their days doing what they love with the people they love, as Iain Banks is doing, some of them turn to alternatives. 

It could be weird diets, it could be homeopathy, it could be a certain well-known quack's clinic in Texas, it doesn't matter. What all of these things do is sell hope when all else has failed. They're a very seductive prospect, and it may well seem perfectly logical that you'd spend every penny in trying them, and you'd leave no stone unturned trying to find the perfect treatment for you, or your loved one. 

Just at the time when you should be kicking back and enjoying your time as much as you can, you end up on a plane across the world, which is stressful enough for anyone at the best of times. Or you might end up on a strict diet regime, having to deprive yourself of the foods you love just when you should be enjoying them more than ever. You might end up a slave to a complex regime of megadose vitamins, enemas, pills and injections when you should be being made as comfortable as possible with palliative care. 

These people who sell false hope rob patients not only of their money, but of their precious time as well. And that, in my opinion, is the most evil and unforgivable of sins. 

I hope that, eventually, we get to a place where a quality life and death become the most important thing to anyone with a terminal illness. 

This is yet another blogpost where I feel the need to write "hope this all makes sense" at the end. I probably should just plan posts better, but I've always found I'm usually better at just writing as I think at times. My humble apologies also for any typos... I'm absolutely rubbish at touch screen typing


Hxxx

The Burzynski Connection

There's an event coming up in Newcastle that I'm really looking forward to. There's a lot of excitement about Street Spice, a street food festival coming up at the end of February, dedicated to celebrating world spices and food. And, to make it even better, its being held to raise money for charity- Brain Tumour UK.

So how does this fantastic event cross over into the murky realms of Dr Burzynski's work? Many others have covered the Burzynski debacle much better than I would ever be able to do. If you do want to know more about it, I recommend starting at Josephine Jones' blog, as she has a pretty extensive list of her own blogposts, along with those written by many others in the skeptical community. 

The event is being held in memory of Kuly Ral, who died of a brain tumour. I know very, very little of this chap, except for the information given on the Street  Spice website:

"Kuly Ral made up one third of super Urban-Bhangra group RDB when his devoted family and Three Records label colleagues discovered that he had a terminal brain tumour. Although Kuly sought to get treatment in America for this, it was not to be:"

It's a very sad fact that my heart sinks every time I read or hear the words "treatment in America" for cancer. I can't help but dread that it means Burzynski's clinic, and with a bit of digging, it seems that in this case it was indeed Burzynski's clinic that Kuly was receiving treatment from when he died. I know nothing of the circumstances of his treatment, or how he died, but given that Burzynski supporters have been known to use the names of dead patients as testimonials for successful cancer treatment, showing no respect whatsoever to the deceased or their loved ones, I'm frankly amazed that Burzynski and his cronies aren't shouting from the rooftops about how they were treating such a high profile Bhangra personality. (In the past I have emailled the Burzynski Patients Group to ask if they were going to take down the name of a patient who had been dead for months. Unsurprisingly, I received no reply.)

I'm making no judgement here on anyone who would choose to go to Burzynski. I'm also still really happy to be going to any supporting the event, as it's raising money for Brain Tumour UK rather than for Burzynski himself. The person who I judge the most in this situation is Burzynski himself, who seems rather happy to be making his millions providing unproven treatments, deceiving patients, making shoddy movies, and claiming an FDA conspiracy, when he could quite easily silence his critics-and the FDA- by simply publishing the results of his "clinical trials". If he spent half the time he spends on shameless self-promotion by sitting at his desk and actually writing up some results, then at least he could back up all of his miraculous claims, and all of us who are critical of him would have to sit down, shut up, and happily accept that there is a cure for cancer on the market.  

So here is my own tiny little memorial to Kuly Ral. It takes the shape of a simple plea, and goes thus:
 

"Dear Dr Burzynski,
Please publish the results of your trials.
Its the least you could do"

Malik's Mesothelioma Magic

I'm still pretty new to this skepticism thing, but I'm starting to become immune to the bog-standard nonsense claims that I see homeopaths constantly making. There are still the odd ones, however, that knock me for six and leave me feeling rather staggered at the sheer dangerous nature of the claims.

It'll come as no surprise to some of you that the culprit of the most recent of these claims is "Dr" Nancy Malik, who yesterday posted the following on twitter:

That's right, people, apparently mesothelioma is curable with "alternative and natural treatments". And so, with bated breath and already-slightly-higher blood pressure, I followed the link provided by I'm Not Really A Dr Malik. What I was faced with was, to say the least, rather misleading and made my blood boil. Take this paragraph for instance:

"If mesothelioma patients have the desire to maintain quality of life, often they will choose alternative and natural treatments for the disease. The survival rates for those having success with natural treatments greatly enhance quality of life during treatment due to the fact that they forego poisoning their systems using toxic chemicals that hamper the body's immune system."

In other words: if you choose conventional medicine, you're an idiot who is essentially killing themselves by choosing poison. So what would they recommend instead, this website which has no references at all to back up their claims, and who appear to be desperately trying to sell me various nonsense books? 

There is one thing I can say in defense of this website is at least it appears to be peddling herbal medicines rather than homeopathy. I wonder if "Dr" Malik has realised this, as she seems to have been furiously retweeting and promoting things from this website. 

They recommend Nigella sativa, celandine, mistletoe, and cat's claw. Oh really? let's check that, shall we, by having a lookie at the evidence for these products in mesothelioma, brb....
...
Nigella sativa: no evidence. 
...
Celandine: insufficient evidence to rate effectiveness for cancer. 
No evidence in mesothelioma

...
Mistletoe: insufficient evidence to rate effectiveness for cancer. No evidence in mesothelioma
...
Cat's claw: no evidence.

Well, that was quick then. For transparency, I checked the evidence using the Natural Medicines Comprehensive Database, a gold standard resource for information on herbal medicines. 

This website does of course close with the obligatory "It's all a big conspiracy and big pharma and the medical profession just want everyone to die horribly" statement, so any teensy tiny miniscule scrap of plausability has gone out the window even without the total lack of evidence to back up their claims.

Do these people really not realise the danger they put people in by encouraging them not to use conventional medicine (which we have evidence to say it works at least some of the time) and to use alternative medicines (which there is zero evidence to say if it works or not) So where is the conspiracy here, folks? Is it really from the people who know about physiology and pharmacology, and who are primarily motivated to help people? Or does it come from the "alternative" camp, who seem hell bent on selling various books and expensive remedies and are happily peddling misinformation like there is no tomorrow?

H xxx

Alternative medicines and brain tumours- Some ramblings.

There's been a lot of press attention in recent days about the case of  Neon Roberts,whose mother had apparently ran away with him in order to avoid him being given post-surgery radiotherapy.

I will admit at this point that I haven't looked too closely into the case. I'm writing this on my lunch break so don't have time to go into all the details, but it appears that after being found, Neon has been taken into foster care and has been given the treatment he requires.

If the press reports are to be relied upon (and bear in mind my main source is the Daily Fail), this seems like a striking case of the sort of harm misinformation about alternative medicines can cause. Reportedly, the mother only wanted him to receive "natural remedies" as he recovers from his surgery. The implication is that natural remedies would be safer for the child, whereas conventional treatments like radiotherapy and chemotherapy are evil, toxic poisons.

And yet this distinction between "natural" and conventional medicines is highly blurred, particularly when it comes to chemotherapy. Some of our most powerful (and potentially toxic) chemotherapeutic agents are derived from plants- the taxols for example. Ultimately, the main difference between these agents and alternative medicines is that they have been tested and have been proven to work. If other natural, alternative medicines went through the same testing processes and also had positive results, they too would cease to be alternative and would become conventional medicines. Radiation, similarly, is an ultimately natural process. So how do the public at large decide what constitutes a "natural" remedy? We can see from this case the potential consequences of such misinformation.

Another thought that occurs to me is the distinction between complementary and alternative medicines. I think we can all agree that there is a potential benefit from somenatural remedies for some cancer-associated symptoms or problems. So as an example I have no problem with a patient who decides to try a herbal remedy to treat say anxietyalongside their conventional treatment, providing they are doing so with a knowledge of the pros and cons of the treatment, and with their healthcare provider's knowledge. Complementary therapy, in other words. What's infinitely more worrying is the concept of alternative therapy, e.g. where a patient makes a decision to not use conventional medicine but to use a herbal remedy(or homeopathy, or acupuncture etc) instead. The evidence base for alternative medicines is absolutely nowhere near the level required to justify a patient using them instead of conventional medicines for something as serious as cancer.

And this brings me on to homeopathy. Yes, homeopathy again. I'm not going to cover how homeopathy works, as its been done much better at this site:http://www.howdoeshomeopathywork.com/ . What is particularly worrying about this modality is the advice given that conventional medicines need to be avoided to allow the homeopathy to work. This is bandied about in an inocuous sort of a way by websites such as this. So, by recommending a homeopathic treatment for a serious condition, homeopaths are directly harming their patient by encouraging them to not take conventional medicines (which may have a chance of working at least) and to replace them with Magic Woo Memory Water Sugar Pills (which have zero chance of working). One of the most heart-breaking things i have ever read on the internet are the letters of Penelope Dingle to her homeopath, who treated her pancreatic cancer. If you haven't seen this already, I highly recommend that you have a look, but warn you that it is likely to induce tears, then rage. 

I've noticed that a few homeopaths on twitter have already picked up on the story of Neon Roberts, and are gleefully tweeting things like "UK Boy to Be Forced Into Chemotherapy" (forgetting the fact that it's actually radiotherapy that he will be receiving). Of course I'm Not Actually A Doctor Nancy Malik is involved. So I thought I'd have a look at what evidence there is that homeopathy can treat brain tumours, before they all start claiming that it can. So I've checked Medline and Embase, the leading medical literature databases in the world. My search stratedy was: Search for homeopathy. Search for brain tumours, and limit to therapy or treatment. Add the two together. See what comes out.  Makes sense, right? 

The answer, of course, is a big fat zero. 

I'm Not Really A Dr Nancy Malik, however, has other ideas, and has helpfully sent me links to 4 sources that she claims are evidence that homeopathy can work in brian cancer treatment. Three of which are studies looking at  tissue cell culture, and one of which is for treatment of side effects (ergo as complementary, rather than alternative therapy, and which bears no resemblance to whether or not it could actually treat a brain cancer). The in vitro studies are very interesting i'm sure, but to use them as evidence that homeopathy can treat brain cancers in humans is an enormous stretch. With something so serious, would you really be willing to base a treatment decision on what happens to a couple of cells in a lab? Or would you rather base it on what happens to thousands, if not millions of other people in real-life? I know which one I would go with.

One other footnote to this news story is one which I fear may have been forgotten about. Imagine being a child, who has just undergone surgery for a brain tumour. Imagine the fear this poor boy feels on a daily basis, not to mention how physically ill he may be. Now imagine being taken by your mother on a trip elsewhere, then being taken into foster care and having to be given radiotherapy, whilst a court case battles on around you. I can't even begin to imagine what this child is feeling. This time would have been bad enough for him as it was, without any of this being added onto his trauma. 

Hxxx