Expression Is Not Free

This weekend I journeyed to the centre in the freezing cold to join the Rally for Free Expression opposite the House of Lords. Here’s my flickr set, plus you can see One Law For All’s videos and photos as well (of course, in the one I’m in, I’m making a weird face). Pod Delusion have some excellent highlights in Episode 123.

It was toe-numbingly chilly, but worth it! The turnout was good and the speakers were exceptional.

What for?

Right, there have been some disturbing occurrences in some London universities lately, which I’ve yet to write about, but this is a good time to collate them and look at the (serious) problem at hand.

University College London

First we have UCL. The Atheist, Secularist & Humanist Society (ASHS) advertised for their latest pub-based meet-up, which happened to feature a frame from one of the Jesus and Mo comics – appropriately featuring Jesus and Mohammed having a pint together. Aww.

Following what seems to have been one complaint from an angry person to the UCL students’ Union, the UCLU for some reason decided it was appropriate to tell the ASHS to remove the image so that this person, and others, would not be offended.

This all went on for a while, the whole debacle involving resignation, criticism from many angles, demonstrations of support from other universities, cities and indeed countries. Fortunately it did result in the UCLU taking a step back, though the overarching expectation of censorship-to-protect-religious-sensibilities does seem to remain. It’s been a bit of a PR nightmare for UCL – and it is an important issue, well-summarised by Ministry of Truth – but things could have been worse.

Here’s Susan Zuang of the UCL ASHS speaking a bit about it at the rally:

London School of Economics

For example, as they have become at the LSE, which has effectively brought in its own form of blasphemy law following a tiny number of complaints (given the size of the LSE student body) against their ASH posting the same cartoon in solidarity with the UCL ASHS.

The situation here is far more concerning, yet seems to have escaped the media’s notice; a far more heavy-handed and outright defence of religious privilege by the LSE Student Union. I would urge any current and former students to look into this and make their feelings known.

This action by a university – a supposed forum for learning, discussion, philosophy, ideas and progress, is throwing out accusations of racism:

The LSE Students’ Union would like to reiterate that we strongly condemn and stand against any form of racism and discrimination on campus

A depiction of two historical figures sharing a pint is both racist and discriminatory? Even though subscription to a religion does not make one part of a particular race, nor is one’s participation in a society automatically indicative of discriminating against those who don’t? LSE, we are disappoint.

Edit: here’s an account of the correspondence between their ASH and the SU.

Queen Mary University of London

Closer to home for me, as a QM student myself, and an even more worrying incident.

Here are the QM ASHS representatives talking about the fear and intimidation caused when the planned lecture on Sharia Law and Human Rights was interrupted by a man threatening everyone whilst filming them on his phone:

The police were called and the lecture cancelled. Again, in a university, which should be a rich ground for debate about a huge range of topics. Fortunately, the principal has been pragmatic and reassuring.

Principal Simon Gaskell has spoken publically following reports of a disturbance at a recent meeting of the Atheism, Secularism and Humanism Society, and spoke to reassure students that Queen Mary takes your freedom of expression and safety seriously.

“The democratic right to freedom of expression and debate is one Queen Mary strongly upholds and promotes. Talks, meetings and debates are held peacefully at Queen Mary on a daily basis and we will continue to host such events.

“We are equally committed to our duty of care to students. A police investigation of Monday night’s incident is currently underway and Queen Mary will conduct its own review. We will do our utmost to ensure this occurrence is not repeated and that our students are able to gather and engage in debate freely without interference of any kind.”

A short time later the principal released a further statement to all students and staff of the university, which I have reproduced below for those who would like to read it. He reiterates many of the points made by those involved in the events summarised above, and by all of us who support the people involved.

Rhys on Facebook

Finally, our friendly neighbourhood teenage skeptic strikes again. He uploaded the Jesus and Mo cartoon as his Facebook profile photo, again simply to show support for the students in London and in disagreement with the Unions’ approach.

His school later saw fit to tell him to take it down, or face some kind of disciplinary action. Tell me when it became acceptable for schools to interfere in students’ lives outside the school gates, when the matter is nothing to do with the school whatsoever and harming no one?

Here’s Rhys at the rally:

Defend Free Expression

So regarding the rally itself – the turnout was pleasingly high despite the challenging temperature.

You can listen to all of the speeches here on the Pod Delusion – with a full list of the speakers. I would particularly recommend Nick Cohen, Jennifer Hardy (as seen above, a bit), Derek Lennard, Sue Cox, Kate Smurthwaite and Joan Smith, but of course all of it if you do have time. I’ve got some more video snippets: Dawkins, Derek Lennard, Maryam Namazie.

Kate relayed a very moving anecdote about one of her students (she has taught English to immigrant classes), an Iranian woman who always seemed very committed to her religion; ensuring she always had her headscarf if any men were present, excusing herself from class to pray at the proper times and in the correct direction.

The subject at the time was adverbs of frequency (woo, grammar!) and Kate used the example:

“I never go to church”

To which the Iranian woman responded,

“But aren’t your parents angry?“

“No, because they also never go to church.”

And her sincere reply was both enlightening and sad:

“So… you are free.”

Probably the most moving speaker was again Sue Cox of Survivors’ Voice, whom I have seen previously at both the Protest the Pope rally and March for Secular Europe. Sue is an incredibly brave and admirable woman who speaks out against the abuse she and countless others suffered at the hands of Catholic clergy.

She told of a survivors’ group consisting of deaf and speech-impaired individuals, who had all endured terrible ordeals as children, including one man who recalled being passed around a group of  more than 10 clergymen who treated him as “a piece of meat”.

Sue thanked all those who have supported her and the survivors’ groups, which has in part enabled them to take their protest to the Vatican itself, although it is not permitted to speak ill of the Pope himself or hold any kind of demonstration there. With the march followed by helicopters, that same man was told to put down his Ratzinger, Out! banner because it was offensive.

He put it down, picked up someone else’s placard and kept going.

Not that it needs saying, but you know what is offensive? Powerful religious institutions protecting serial child molesters while showing little to no regard for their victims (until they’re found out, and even then some still manage to give excuses and receive protection – like this from yesterday: a ‘victory’ for the Holy See as abuse victim withdraws lawsuit).

The Bottom Line

A wide range of topics were covered at the rally, from child abuse to libel reform, blaming of rape victims, corrupt politics, the nuances of comedy, and of course the censorship of students by the societies set up to support them.

The message was clear; that freedom of expression is vital to progress. Pick any paradigm shift you can think of – the Suffragettes, Martin Luther King, anything – had those people shied away from offending, we would not be where we are.

We cannot progress further if criticism and debate are stifled. The only speech that needs protecting is that which offends (and we’re not talking hate speech or incitement to violence; those are legislated against for obvious reasons – see the Holocaust or Rwanda genocides, as Nick Cohen rightly pointed out. And people need to stop pretending things fall under this umbrella when they don’t). The things that need changing are those that some people won’t want to have questioned.

Without the freedom and encouragement to ask all kinds of questions, express ideas and new ways of thinking, we cannot better ourselves or help those who cannot help themselves. We can’t oppose abuses of human rights and we can’t improve anything for anyone.

So please, lend your support to those who need it and make sure the message is clear, that we will defend free expression – since, sadly, it still appears to need it.

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Burzynski II

Sorry for the unimaginative title, but I get the feeling number 2 won’t be the last and at least this makes it easily searchable.

In this post, I want to talk about people’s online behaviour regarding this issue, think about it a bit and hopefully get others to do the same. It’s not a sciencey one (lots of links at the end for that, though), but I hope people will read it nonetheless.

I would say that the general acceptance of alternative medicine by the general public (and indeed the NHS, having walked past the ‘Hospital for Integrated Medicine’, formerly the Royal London Homeopathic Hospital, again the other day) creates a dangerous accepting background for these kinds of situations and media coverage of them (the BBC as well), and is a huge contributing factor in people’s choices. So that’s where raising awareness of the dangers and lack of evidence behind alt med as a whole comes in.

With the recent publication of an ‘apology’ from the Observer – actually it’s not an apology, it’s a hamfisted justification for their worryingly positive portrayal of the Burzynski clinic in the previous article that drew all the attention in the first place – it is unfortunately time to step back and really think about what’s going on here. Andy wrote an excellent post in reply the same day over at Quackometer and Josephine Jones is collating responses here.

Today Keir Liddle has also written a good post at the 21st floor starting to address the question of how the anti-Burzynski crowd (let’s call it that, to avoid ambiguity and meaningless labels) is coming across. In addition, upon hearing about people tweeting directly at patients enrolled at the clinic, Hayley Stevens posted her thoughts.

The issue

I am very concerned about this. A very small number of people are thinking it sensible/acceptable/useful to send tweets to people, one account in particular which I won’t link to here, who are paying for Burzynski to treat them. Let’s call them patients.

Let us set the scene.

These people are very ill. They have cancer; most of us have experienced family members and/or friends dealing with various types of cancer (it’s important to remember it’s not just one thing, just as virus isn’t – measles is a specific disease, as is pancreatic cancer, but cancer alone is an umbrella term) and do try to bear in mind how big an emotional toll that takes.

Generally if they have made the decision to spend their life savings and more on a last-ditch attempt to find a cure, you can be sure they have been giving a certain amount of time to live. They know they are dying and, while we all are, when your mortality is thrown in your face by something like a diagnosis of terminal cancer, your perspective is likely to change.

Also, having made said decision to spend thousands on a certain strategy attempting to prolong your life, some strangers shouting at you is unlikely (to say the very least) to change your mind.

The effects

Next, let’s think about what Twitter is. For those of us that use it, this really shouldn’t be difficult to get our heads around, however I’m finding that it actually can be.

Twitter is a bit like your text inbox, or ceefax if you really aren’t an internet person (though in that case you’re unlikely to end up here… anyway). It’s a stream of events coming to you from out in the ether, you read it when you feel like it, unless you have alerts set up as well (like a text notification noise and/or vibration), in which case you’re more aware of each time you get a message through.

Imagine you are one of these patients and your twitter feed starts lighting up with messages from concerned skeptics. They’re telling you that the man you’re giving all your money to is a fraud, a liar and a quack. They’re telling you you’ve been conned, duped, you’re wasting your money and your time.

Now, one reasonably polite message from you, you think, surely won’t come across badly?

I’m just concerned. Surely it’s better they know the truth?

Normally, yes, I prefer the truth over a dangerous lie any day. But again, these are very vulnerable people who have already made a commitment. What possible benefit do you think your attempt to enlighten them will bring?

Imagine your twitter feed/inbox filling up with messages from people you don’t even know, have never met and will never meet, telling you these things – insinuating that you’ve made a horrible decision so close to the end of your life (for yourself or family members). One message from you, one message from someone else… how many hundreds of people are following? If they all decide to raise their concerns, do you think this is positive?

Think about it

Here’s my problem.

I do believe the vast majority of skeptical types and everyone who is following and contributing to this story are good people, people who are concerned for their fellow human beings, who don’t like to see an unscrupulous, ethically blind man take advantage of the sick and dying. I like to think most people I engage with in any case are that kind of person.

But if you think it’s ok to force your voice into the world of the people mentioned above, in this context, then I am concerned. I am concerned that you are being selfish.

Why? Because, as I said, telling people whose minds are made up about all this evidence for Burzynski being a conman is going to make no difference to them, except make them feel horrible, and they don’t need any more of that.

Aren’t you just going directly to them because you want to absolve yourself? You have information, important information, that you feel everyone should know about. Informed decisions are the best kind. People are ill, you don’t want them to do the wrong thing – that’s understandable. But it’s too late. As much as you want them to listen to you and change their minds, that won’t happen, so don’t approach them in the first place, please.

Harsh truth

You want people to accept an awful reality, but I’m afraid you must do the same. We cannot help everyone. The patients are not the target here – nor are the generous fundraisers who have already made commitments to give their time and money (even if we feel it is misdirected, again, you cannot ask people to go back on their well-meaning promises) – because no amount of data and facts will convince them that what they’ve committed to isn’t right. They have access to all of the things coming to light, which they can read if they wish. Directing your otherwise well-intentioned concerns at them will not help.

We have to accept that however much we would like everyone to suddenly see the light and embrace the truths that have been unearthed, that’s not going to happen.

This information must be shared so that fewer people in future, when faced with such a terrible situation, will go down this path. What we don’t need is people coming across as insensitive and rude with no concern for people’s situations – because then things like that nasty Observer editorial will happen, and as a minor point – the reputation of the ‘skeptical community’, whatever that is, is tarnished. That can really have a negative impact on whatever good we can glean from these kinds of occurrences now and in the future.

It’s similar to politics; it’s the fence-sitters and undecideds, not the safe seats, on which attention needs to be focussed, if you actually want to make a difference.

Philosophies and ethics

Today a friend shared this excellent article about how doctors tend to deal with death. They don’t fight for every last second they can muster, they realise what can and can’t be done, what’s inevitable and what’s important. Quality of life over quantity, in the case of many terminal illnesses.

A friend of mine who is a doctor recently told me of a patient who had had very serious strokes and was not going to recover. She had got to know her and the family well, and they were arranging for her to go home to spend her last few days with her loved ones. However, a senior doctor who was rarely on the ward decided to come in and instead override that decision, recommending her instead for rehabilitation – keeping her in the hospital, trying to get her to restart, essentially. She died in hospital, without her family, and my friend was, understandably, incredibly angry. There are serious questions about prolonging life, which are beyond the scope of this post, however.

A major finding that Sense About Science has is that people who spend their last months chasing hopes around the globe, spending their money and time exhausting themselves – when it’s all over and done with, loved ones will wish they had just spent time together, enjoying what life they had left.

That is the real crime; that people like Burzynski and all the other quacks we will continue to attempt to expose are exploiting people’s desire for life to continue, and in doing so, they rob them of it.

I haven’t written about it before, but when a good friend of mine died of an incurable form of brain cancer, in addition to the loss, pain and anger, I was also relieved. Relieved that her family was so strong and dealt with it so well – she spent her last time in a hospice, with wonderful care (the amount of respect I have for end-of-life carers cannot be expressed in words), with family around. We, her old friends, were also allowed to visit her, for which I am very grateful.

Unfortunately, children cannot generally make sense of such a situation and cannot make their own decisions; their parents will make them instead. The act of dragging a child across oceans for invasive medical procedures that cause them pain and impede their ability to enjoy the life they have is seriously questionable in ethical terms. Again a bigger issue, but something else that should be considered if you are thinking about engaging families of patients directly.

Do you want to accuse people of causing their children pain? Again, the hope is to prevent people from taking such decisions in future, but addressing those who cannot be swayed is simply pointless and brings no benefits.

Don’t be a Dick

We’ve said it before and we’ll say it again.

I think the number of people who would send such messages because they are just dickish, want to spread their correct opinion around and care not for the feelings of others is very small.

The rest of the people, I expect, are well-meaning but are directing their concerns the wrong way. Your anxiety for their situation is not the point, your desperation to tell everyone you find who is doing something you consider stupid or wrong – in this case, you must keep it to yourself.

There are factors that make this particular case distinct from, say, homeopaths trying to treat illnesses for which effective medical treatments are available. It’s different from people who want to take their baby to the chiropractor. If you can’t see why, read slower, think more – leave a comment? I’m finding that some people get it, some don’t. If you don’t, at least refrain from saying things before you’ve asked a few people.

This is important – for this case and how it could turn out, for the people involved (also, who must remain anonymous wherever possible, for the above reasons), for the skeptics.

Links

Here are a few links, stuff that’s been happening in the #Burzynski tag, for those who aren’t following.

Science-Based Medicine addresses the fact that Burzynski is often using cocktails of chemotherapeutic drugs on his patients. Drug combinations that are not approved for the types of cancer in question. Drugs that some patients are unaware they’re signing up for. Drugs people are specifically hoping to avoid in many cases. Sadly this is common with a lot of alt med; especially TCM. Actual drugs are often included, at unknown levels and from unverifiable sources, making the treatment even more dangerous than if it were just harmless.

An important analysis of what’s really going on with Burzynski’s claims of approved treatments, publications and specific types of cancer patients they recruit, from the Ministry of Truth.

The clinic issued a Press Release suggesting their ‘representative’ Mr Stephens had been fired*, but we bloggers would still be pursued for libel. *Though he is still listed on the Patient Group website as the “Marketing & Sponsorship” contact  (noted by @writerjames ).

Some hard reading showed the list of publications in said press release to be, bluntly, crap.

Martin Robbins has also been in touch with the clinic about Stephens and received a response.

Even the BMJ have picked up on the story now.

Skeptical Humanities is researching patient outcomes. Sadly they are overwhelmingly worst-case-scenario, with only a handful of survivors.

Saul Green had researched in the past Burzynski’s claim of having a PhD, which seems to be false.

Josephine Jones is still updating the Burzynski-topic post Master List

On charging to enrol people in his trials. Interestingly, if one wishes to donate donate to clinic, one writes cheques to him personally!l

The clinic on Facebook – where the wall was shut down and many people came out with ‘this isn’t a place for negative comments’ type comments. Worrying.

The cancer act is rarely enforced – but it is illegal to claim you can cure cancer when in fact you cannot. @jon_S captures such a claim.

Some of the costs of a course of treatment at the clinic are described here by some people who went there.

Burzynski

I think it’s time for me to say something on this subject. It is after all very closely related to my current… vocation (if one can call it that, being a PhD student still!) and impacting directly on some of my friends.

One of those friends is my co-host of our long-neglected podcast, Super Duper Woo-Fighting Duo (With Capes)! – Rhys Morgan.

Edit: even BoingBoing is on it this evening!

Background

Feel free to scroll down to ‘The Threats‘ and ‘Some Interesting Correspondence‘ sections if you know all this…

The subject is one Stanislaw Burzynski, based in Houston, Texas. He offers an experimental treatment (though to call it that is probably a bit generous) to cancer patients called “Antineoplaston Therapy”. These antineoplastons are claimed to be peptides (bits of protein – though they’re generally not, technically – see comment 11 for more) found in urine. When a difference between cancer patients’ and healthy individuals’ urine peptide profile was found, an assumption was made that cancer sufferers were lacking these protein chunks and therefore replacing them should be an effective cure. A list of his patents and publications can be found here. This NYT article is extensive and demonstrates the shocking wealth accumulated:

… the gross income of Dr. Burzynski and an institute he runs was $40 million from 1988 to 1994… he took home $1 million a year.

However, the theory itself is dodgy at best and years of tests have not convinced the worldwide medical community. Yet Burzynski continues to run his clinic, charging people tens of thousands of dollars with promises of efficacy and hopes of being cured – even if the patients have been given a few months or years by doctors elsewhere.

Edit: this is shocking – records show Burzynski threw random chemotherapy cocktails at people (those saying chemo kills; well, he certainly didn’t seem to do his research on it), failed to disclose pharmacy ownership conflict of interest, did not alter treatment despite scans showing no improvement... Texas Medical Board might finally be doing their job.

Also see here for his public record – makes for a disturbing read. Plus, they also have a range of ‘healthcare products’, unsurprisingly – glorious website full of scibabble nonsense words and indeed typos.

What’s happening?

Now, more and more people are starting to criticise this man and his practice and the tactics we have seen so many times before – legal threats, bullying, hoping to silence – are coming thick and fast. There is now a petition asking the clinic to release a concise, publicly-available review of all the clinical trial data it has accumulated over the years.

The turning point was this uncritical article in the Observer about a stricken family with a little girl suffering from a serious brain cancer. The family details their emotional struggle – one which many of us will sympathise wholeheartedly with – and the resulting search for hope, their sights landing on Burzynski’s clinic.

Peter Kay offered to do some benefit gigs to help towards their $200,000 funds goal for this ‘treatment’. These were on the 24th and 25th November last week, and tonight the Comedy Store in Manchester is hosting another with various acts. I also saw a tweet reporting that BBC 6 Music had run an advert for one of the money-raising events.

Many immensely generous donations have been made. It is heartening to see human kindness at work – but so very upsetting given the circumstances.

Here are some e-mails regarding the article that were not published (or at least, not fully) by the Observer – a lot of people are concerned by their endorsement and the lack of provision to challenge what was written. Obviously this is a sensitive issue, around a grief-stricken family, but many others will continue to suffer if this is not properly addressed.

Publicity around this man and his dealings has soared today, as a result of retweets from Stephen Fry, Ben Goldacre, Dave Gorman, Dara O’Briain and continuing valuable support from others such as Simon Singh.

Another friend of mine, Kat, has written a fantastic post for the Cancer Research UK blog – this is serious stuff and those of us who have watched people deal with such a terminal illness do not want to see them swindled, spending their hard-earned savings lining fraudsters’ pockets and losing precious time with their families and loved ones.

Some people who have been directly affected have set up their own website in the hope that others won’t follow in their footsteps: http://www.burzynskiscam.com/

The threats

So, regarding the bullying I mentioned. Rhys wrote a post in mid-August detailing his views of Burzynski, backed up with accounts of past occurrences – including this case:

“Dr. Stanislaw R. Burzynski, had defrauded the plaintiff and violated the terms of the health plan.
We agree that the defendant may not trick the plaintiff into paying for an unlawful, unapproved drug. We AFFIRM.”

and how the 30+ years of trials have yielded very little to support the claims made. Check out Quackwatch from way back in 1998 for more.

He had to take the post down at the beginning of this month but he has now published all the correspondence here – please do have a read (also on Google+, and I’m pasting it below (click ‘read more’ if you’re on the blog homepage and can’t see it) because his site keeps going down!).

His silence was broken because Andy Lewis started receiving his own threats after he wrote his criticism of the Observer article, Kay’s unquestioning support and the issue as a whole. Another here for your amusement. Also read more from The 21st Floor, David Gorski, scienceblogs (good comments), Peter Harrison and Zen Buffy – Josephine Jones is compiling a kind of I Am Spartacus! list for posts on the subject.

Some interesting correspondence

A friend sent me this link to a September 2004 letter to the editor of the academic journal Integrative Cancer Therapies (who have published quite a few of Burzynski’s papers) from a researcher by the name of Andrew Vickers. He takes issue with an article by Burzynski published in the journal in March of that year:

Burzynski SR. The present state of antineoplaston research.
Integr Cancer Ther. 2004;3(1):47-58.

I’ve downloaded and saved this paper if anyone wants a copy, get in touch on Twitter or in the comments so I can e-mail you.

The article cites 73 papers and articles, 38 of which have Burzynski as first author, and a further 10 have his name as one of the first 3 authors – probably he’s in the list somewhere with the rest – plus a couple have one Burzynski B. (presumably a family member). If you search his name in PubMed, 45 articles are returned.

—

Moving on to Andrew’s letter regarding the paper cited above, it’s reasonably short – again if you want the PDF, get in touch, but I’ll paste it here with minimal commentary at intervals.

“Editor:

I read with interest Dr Burzynski’s recent review of research on his technique for treating cancer.1 I have several serious concerns about the scientific quality of his article. The first results presented by Burzynski concern glioma. It is claimed that 7% of 62 evaluable patients had a minor response. However, no fraction of 62 rounds to 7%: 4/62 is 6.45%, 8/62 is 8%*. There is also no fraction of 62 that rounds to 36%, the proportion given for objective response.”

So we can be fairly confident that he’s fiddling numbers from the get-go? * It has been pointed out that this is a mistake: 5/62 is 8%. Presume this is just a typo on Andrew’s part – the point remains.

“Burzynski goes on to report preliminary results of clinical trials on colon cancer conducted at the University of Kurume Medical School in Japan. He claims that the “survival rate of more than 5 years” on antineoplastons was 91% compared to 39% in the chemotherapy control group. Burzynski states that “the study was randomized and compared the results of treatment in 19 patients on . . . chemotherapeutics and antineoplastons [with] 56 patients who received . . . chemotherapy alone.” Yet the reference cited (reference 68) is to a case study. Moreover, a 91% survival rate for 19 patients is impossible, as it corresponds to 17.3 patients.”

 Again some weird numbers coming out, and reference to an article claimed to be about a trial, yet is in fact a study of one case.

“Burzynski also reports a single-arm study of 16 patients with liver cancer in which it is claimed that patients had longer recurrence-free intervals on antineoplastons than off. The citations supporting the claim include a case report and a lab study. Furthermore, the figure illustrating the results shows “time to recurrence [statistic not stated] in patients given antineoplaston AS2-1 after standard chemotherapy compared to control group.” This is despite there being no control group in the study.”

Again no reference to actual trials, but to a single case and lab-based work. Plus a lack of controls (so no valid comparison/conclusion can be made).

“There are several other serious shortcomings of the article. Survival data are presented in bar charts: the techniques for presentation of survival data (such as Kaplan Meier) are well established and were developed specially to deal with issues such as censored data; bar charts are unable to incorporate these features of survival data and are therefore considered inappropriate. No number presented in the text (eg, proportion surviving 5 years) is presented with a measure of uncertainty, such as a standard error or confidence intervals.”

 No reputable clinical study would discuss survival using bar charts. Kaplan-Meier curves have been standard for years. Also he’s presented no statistics for confidence in these numbers.

“I am aware that Burzynski is presenting preliminary data, and I have made no comment or criticism concerning the failure to present inference statistics. Nonetheless, even for a preliminary report, I see no excuse for the use of idiosyncratic and highly inappropriate techniques of presentation, failure to incorporate basic statistical estimates, citation of studies in support of statements when those studies have no bearing on the referring statements, inclusion of obvious mathematical errors, and citation of data for nonexistent control groups.”

He cites Burzynski’s study, to which he is referring, at the end of the letter.

—

Burzynski then wrote a reply! In the same month as Vickers’ letter was published (emphasis mine):

Reply to Vickers 

“Editor:

After reading Andrew Vickers’s letter, one may wonder  why the Assistant Attending Research Methodologist  of the prestigious Memorial Sloan-Kettering  Cancer Center would argue about 0.5% of minor  response and statistics that were not required, while  entirely missing the big picture: a proof of concept  and data on efficacy of antineoplastons in Food and  Drug Administration–supervised clinical trials involving  more than 200 patients. Vickers’s many arguments about unimportant issues obscure the realities of the data that we have presented, which indicate remarkable results in cancers for which chemotherapy and radiation are ineffective.

Publication of my article titled “The Present State of Antineoplaston Research (1)”1 occurred at the same time (March 2004) as the printing of Vickers’s article, “Alternative Cancer Cure: Unproven or Disproven?”  in the March 2004 issue of CA: A Cancer Journal  for Clinicians. In his review article in CA Cancer J Clin, he made reference to only 2 articles on antineoplastons published since 1987. He failed to cite more than 40 of our publications and approximately 300 publications by other authors on antineoplastons and their derivatives. In his letter to the editors, Vickers criticizes reporting of results of the clinical studies conducted at our clinic and also at the University of Kurume Medical School in Japan.  The criticism of our report concerns rounding out percentages to the nearest number. That is why we reported 36% of objective responses instead of 35.5% and 7% of minor responses instead of 6.5%. In the article, I also presented the actual number of patients, allowing readers to make their own calculation.

Vickers objects to my presentation of survival data in bar charts. This objection is unjustified in the context of my review. Kaplan-Meier survival probability estimates are more appropriate for detailed reports describing individual clinical trials. In my review, which describes numerous past clinical trials, there was not enough space for these estimates. Also, one should not compare apples and oranges. We can easily produce Kaplan-Meier diagrams for our studies, but, unfortunately, they were not published for comparison studies, such as Prados et al.2 If Vickers reads our recent articles describing survival in antineoplaston clinical trials, published in peer-reviewed journals between 1999 and 2003, he will indeed find Kaplan-  Meier data. Our data on the proportion of patients surviving 5 years contain no uncertainty, since they are  not estimated but true survivals. The patients are either dead or alive after 5 years. No standard error or confidence intervals are necessary.

The final reports on the studies conducted at the University of Kurume had not yet been published at the time my manuscript was submitted to Integrative Cancer Therapies. Japanese researchers have published preliminary reports and case reports; these were listed as references. The Kurume researchers presented the summary of research data directly to me with permission for publication. I described these as “preliminary results” on page 55 without making any changes.  Those researchers are now preparing the final reports for publication.

In conclusion, I believe I have sufficiently answered  Vickers’s questions regarding the clinical trials conducted  by our clinic. Further details will be provided in a number of articles that are now in preparation for  publication.”

Make of that what you will – no further correspondence noted.

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I’ll just paste the acknowledgements from the paper in question here as these names may be of interest, and comment that the figures are generally of very poor quality, for a 2004 paper:

The studies were sponsored by the Burzynski Research Institute and supervised by its Institutional Review Board (IRB). The membership of the IRB was in agreement with the FDA. The authors [just Burzynski, for the record] express their appreciation to Lucy Rorke, MD, professor of pathology and neurology, University of Pennsylvania, Children’s Hospital of Philadelphia, for review of pathology slides; Dieter Schellinger, MD, professor of radiology, chief, section of neuro-radiology, Georgetown Hospital, Washington, DC; and Joshua Pleasure, MD, M. D. Anderson Cancer Center, Houston, Texas, for evaluation of MRI and PET scans.

The following physicians at the Burzynski Clinic (BC) participated in the study: Robert I. Lewy, Robert Weaver, Marc Bestak, Maxwell Axler, Alonzo Peters, Benjamin Saling, Barbara Burzynski, Tomasz Janicki, Jaroslaw Paszkowiak, Vishnu Alapati, Dmitri Davydov, Vsevolod Dolgopolov, Barbara Drynia, Andrzej Himmel, Wojciech Iwanowski, Gabor Jurida, Mohammad Khan, Eva Kubove, Grace Ormstein, Joseph Nguyen, Mohammed Radmard, Basel Salhoot, Barbara Szymkowski, and Marek Walczak.

The following senior scientists (PhD), microbiologists, pharmacists, and engineers at the BRI and the BC participated in basic research: Robert Waldbillig, Majciej Klimczak, Elwira Ilkowska-Musial, Leszek Musial, Anna Baranowska, Piotr Kuligowski, Ryszard Madry, Donat Manek, Mike Mokrzycki, Andrzej Wieczorek, Anna Wisniewska, Kris Wisniewski, Irma Witkowska, Dennis Wright, and Iwona Zapedowski.

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I’ll paste Rhys’ post below in case his site is down.

Invisible Lives

It’s a skeptics in the pub write-up!

In case you missed it, I luckily made it to Westminster Skeptics to see Juliet Jacques give her talk,

Thinking critically about transgender issues

and you can listen to it on the Pod Delusion but I shall write up my notes for those who prefer to read!

Firstly Belinda Brooks-Gordon introduced the talk by saying that trans rights have not really moved forward along with women’s rights. To try to highlight this and educate people, Juliet has a Guardian blog where she posts regularly about trans issues.

Now we can hear what Juliet has to say – it’s a lot of stuff, hugely informative, and it was a great talk!

I’ve put in a few thoughts of my own with [Comment: ...] along the way.

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“Transgender” is almost deliberately a loose term. There is no commitment to a transsexual (TS)/transvestite (TV) distinction; the two not being the same thing, in case you’ve never thought about it before.

It turned up in late 1960s United States literature and became popular in the 1990s as an umbrella term for gender non-conformity and gender-variant identities.

Terms such as male/female (referring to bodies) were challenged by transgender communities.

A Whistle-Stop Tour of Trans History

Gay/lesbian histories and identities are far better explored (also bisexual but to a lesser extent) and it is much easier to define these terms.

In the Victorian era, modern industrial cities like London were giving people the chance to cut themselves off from their families and old friends, to reinvent themselves and be isolated from their past.

Thus, LGBT identities became possible.

However, men who dressed as women in public were arrested and sent to court. The Met, from 1829 onwards, accused the offenders of being ‘sodomites’; Victorian authorities associated cross-dressing or, officially, ‘men in female attire’, with homosexuality.

[Comment: at this point I'm reminded of one of my favourite comedians. Now, it might piss some people off that I bring it up, but having had close family dismiss him for his transvestism when I was quite a lot younger, since then I've felt uncomfortable when people poke fun.]

Men would often try to have the charges dropped using a defence of humour; “it was just a lark”. They dismissed their actions in this way to avoid prison.

In 1870 two men were often seen out and about as women. The mainstream press showed photos of them and they were well-known in London theatre. One was also associated with the aristocracy. They were charged with committing an “unnatural offence” and were subjected to examinations trying to prove they had engaged in anal sex. This (unsurprisingly?) failed and new charges were brought:

“Conspiring to incite others to commit an unnatural offence”

There was no frame of reference. Law and the media were reacting to events, creating legislation. The prosecution tried to prove cross-dressing was innate in order to suggest that sodomy had occurred.

There was the basic assumption that these people were deliberately trying to deceive men into having sex with them, by pretending to be women.

Obviously everyone’s lives revolve around heterosexual male perceptions!!

Women were also not accorded sexual agency; feminine sexuality was also suppressed.

[Comment: it was in the Victorian era that genital mutilation really took hold culturally; sex was something to be ashamed of and dampened, for both men and women. Circumcision was touted as a cure for boys' masturbation 'problems' and female circumcision became popular to suppress female sexual desires and 'hysteria']

A new defence was then brought: that they’re actors! Actors continuing their roles outside of the workplace. Male-female cross-dressing was a long tradition particularly in English theatre so there was an assumption of performance associated with it, and that London was a City of vice.

The judge did not like the police; he felt they had violated the men’s human rights with their invasive ‘questioning’. Public support increased due to this mistreatment.

In 1885 an amendment to criminal law was made: 2 years in prison for male-on-male sexual acts (which ensnared Oscar Wilde and he was sent down under this law).

Germany’s Paragraph 175 outlawed homosexual behaviour. After this, sexology developed, in order to classify and understand human sexual behaviours.

The medicalisation and pathologising of ‘conditions’ such as homosexuality and transgender/gender-queer identities then began.

Medicine and Media

In 1909-1910 Havelock Ellis published a book called The Erotic Drive to Cross-Dress.

Language is always evolving but there was little to describe transgender behaviour. Transvestite was coined as a broad term then, but is obviously more specific now; referring only to the act of wearing clothes traditionally thought of as being suitable for the opposite sex.

During World War I, Edwardian British and German sexologists were less active. There was still no separation of maleness vs. masculinity or femaleness vs. femininity.

In 1928 The Well of Loneliness was published, one of the first accounts from female perspectives.

The Institute of Sexual Science was founded in 1919 and pioneered sex reassignment surgery. A Danish painter, Lili Elbe, died after attempted ovary and uterus transplantations (Niels Hoyer wrote an account of her life, Man Into Woman). In 1933, the National Socialist Party closed the Institute down and people photographed the book burnings that took place.

These events caused the study and understanding of gender issues to be significantly held back.

Gender verification in sport also became an issue, resulting from people’s suspicions and prejudices, particularly those of Avery Brundage. Examinations to determine (mainly female) competitors’ sex were introduced with the intention of identifying people with an ‘unfair advantage’ – i.e. those born physically male but living as women.

In 1945 the first female-male sex reassignment surgery was performed on Laurence Michael Dillon who later wrote his own book, partly inspired by The Well of Loneliness.

Male-to-female transitions drew attention. A TV/TS schism formed, and also between TS and Gay/lesbian – the latter emphatically not desiring of surgery.

Then the first male-female transsexual was a friend of Dillon, in the early 50s; Roberta Cowell, an ex-pilot and racing driver. Her transition was serialised by the then equivalent of OK/Hello! magazine.

The front page of the New York Times featured Christine Jorgensen, a former US army conscript, in 1952. Her doctor, the sexologist Harry Benjamin, emigrated to the States during WWI. He worked on medicine for TG people, and with those who believed in pathologisation of the ‘condition’. He was closely involved in the development of phychological assessment and requirements for patients to follow ‘paths‘ to get the treatments they wanted.

The medical establishment was in control; unreasonable demands of femininity were made of M-F trans people (F-M were somewhat invisible – people assumed that women did this for practical reasons, to assume more powerful and respected roles in society); antiquated ideas of femininity were forced on people.

In ’66 Benjamin’s book The Transsexual Phenomenon was published, which detailed types of TS e.g. ‘Type 4′ – those with no desire to undergo surgery. These were all ideas articulated by non-trans people.

TS people became aware of the book. People understood the boxes to tick to get what you want - answering the questions posed ‘correctly’!

In 1960, April Ashley had surgery in Morocco. She had been married to Lord Corbett. He took her to court for divorce and the ruling was that she should still be considered male, so the marriage was void and there was to be no settlement. This set a legal precedent in the UK – that TS people’s sex is defined by what is printed on their birth certificate.

In the 60s, transitions and who could afford them were strictly controlled. ‘Sects’ emerged, for example in San Francisco. Sex workers funded their surgery. Police often harassed and blackmailed them in Compton’s Cafeteria, eventually causing them to fight back and a documentary film was made covering it.  Later the New York Stonewall Inn bar, rented by the LGBT community, was scene to more famous riots, where Sylvia Rivera stood up to police oppression. This led to the modern movement of Stonewall as the gay liberation front (gay in this context being queer & non-conforming identities).

People became more vocal about trans not being equal to gay and vice versa. Many were trying to integrate with ‘respectable’ hetero society. It became a cliché in the press; “I was born into the wrong body” – people started to think it was a new idea.

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Lesbian and feminist groups became prominent in the 1970s. These were women-only spaces; M-F transitionists, did they fit in at all? Sport was also a bi-gender separated space. Trans decisions (and often requirements) to conform to patriarchal ideas of femininity annoyed some feminists.

Janice Raymond wrote ‘The Transsexual Empire: the making of the modern she-male’ and other anti-trans feminist literature, very aggressive in its content.

She managed to suggest that TS women were worse than rapists, that the appropriation of female bodies “becomes a total rape” (!). [Comment: hovering dangerously close to a no true Scotsman, I feel that 'feminists' being so obviously prejudiced against gender non-conformity would run against the very core of feminism itself, but maybe that's just my view of it.]

She claimed [comment: epic invocation of Godwin's law here] that TS technology was perfected in concentration camps, but there is no evidence for this. She interviewed 12 TS women (TS men didn’t fit; they were mainly dismissed as butch lesbians). This was prominent in the media.

Carol Riddell addressed Raymond’s comments in 1980. Sandy Stone also responded with The empire strikes back: a post-transsexual manifesto.

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The Victorian persecution of cross-dressers made trans people invisible. Clinicians were free to frame the experience in a light designed by them alone, to propagate stereotypes, create legislation and silence trans people.

The mainstream media/trans schism developed as trans people were not used in film, TV etc. – the experiences presented were not framed by trans people themselves.

Authors stepped forward to promote the anti-transphobia cause, including: Jan Morris (Conundrum: An Extraordinary Narrative of Transsexualism, 1987); Kate Bornstein (Gender Outlaw: On Men, Women And The Rest Of Us, 1994); Leslie Feinberg (Transgender Liberation: A Movement Whose Time Has Come, 1992); and Viviane Namastie (Invisible Lives: The Erasure of Transsexual and Transgendered People, 2001).

The organisation Press for Change was established in 1992 and finally the UK government passed a bill to create the Gender Recognition Act in 2004.

Today

Trans identities have some constitution now. The meanings of words for ‘Gender-queer’ individuals (TS, TV, TG etc.) are still evolving. We are experimenting with the language. The challenge is tackling transphobia and in a sense this is following on from the gay liberation movement. Homophobic violence is still often based on gender expression and identity.

Fear of unknown and unusual drives people’s prejudices. This is often reinforced in the media, a prominent example being Psycho; in which Norman Bates fits the ‘all crossdressers are crazy!’ stereotype. [Comment: I'm reminded again of Mr. Izzard's distinction between TV people in general and the "fuckin' weirdo transvestite!"]

Work is ongoing to close the gap between the mainstream media, trans people and how articles are produced. Also questioning the usefulness of bracketing TG with mental illness; at the moment it is still in the DSM of mental disorders. Perhaps we can overturn the idea that TS is a mental health issue. TS people do have a fear of ‘coming out’ so to do so may help.

In tackling transphobia there is a need for good language use and critical thinking on these issues.

Questions

Q. The ‘Real life experience’ requirement – no scientific basis to it; just tradition?? Good reasons for it potentially being harmful. Barrier and ritual humiliation. People coming to harm via the ‘Hormonal black market’ – e.g. oestrogen without prescription.

A. Especially in Britain. The Trans pathway is structured by the NHS’ fear of being sued; transition and regret. Public money and anxiety over its use! People often suggest decommissioning of gender reassignment to save money (approx 70% comments on Guardian!).

Need for some gatekeeping. If there’s no test; it’s an irreversible surgery. Russell Reed: hormones as diagnostic tool (effects are reversible) – one can stop and revert.

Bit of an endurance test. Street hassle, everyday things become an ordeal. Some programmes do away with the psychiatry element. Difficult – more flexibility? Equality? They were allowed x time… cut-off points?

Increased acceptance – more people – pressure from the right to not spend money?

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Q. Language. LGBT(Q) bit awkward? Internal disagreements – your view?

A. Ever-expanding acronyms. LGBTQQI (lesbian, gay, bi, trans, queer, questioning, intersex) – a way around?

Umbrella term. But PC & this are kind of concurrent. Press fatigue with ‘PC’. Introduction of new words isn’t really tolerated now cf. 70s/80s.

“PC” is now pejorative. Causes some friction? Sexuality =/= gender identity. The state didn’t separate these.

How do to this but keep an ‘alliance’? Tend to occupy the ‘same spaces’. Contesting rights (Belinda BG). Trans & bi rights trampled! Medicine/sci/law intersection and research is behind –> guesswork policies.

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Q. Liz D. Popular culture e.g. Coronation St. (did it badly?) M-F trans people e.g. in Little Britain – offensive?

A. C St. Hayley. History of trans people not given a direct voice/part. Spurred dialogue and was sympathetic to the issue.

Dana international won eurovision; informing people that TG different from L/G etc. “City of Lost Souls” TS singer in lead roll. Autobiography “Man Enough to be a Woman”. Warhol, punk etc.

Tara O’Hara character. Argument on need for surgery and ‘womanhood’.

Little Britain:  trans women as comedy. Trans men ignored; men who want to be female/feminine are funny whereas if women want to be men it’s practical. Merton & co. should be more careful with jokes.

You don’t always know how your creation will be perceived eg.. Al Murray pub landlord! Taking the piss out of people but then they adopt it; uncritical identification and missing the point.

 

Stereotypes often have a basis. Not being critical of them, historical context needed. The LB catchphrase “I’m a lady!“  is now shouted at people; people aren’t aware of transphobia.

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Q. Pronouns. He/she/it ?? Queer has pejorative connotations (depends on who it’s from) – are you happy with the bifurcation?

A. Personally, yes. Have there been attempts to create new terms for people who don’t fit M/F and or don’t want – outside the binary; se/hir.

If you’re not sure, ask! Give the right of ID to the person rather than imposing your definition, but if you can’t…

e.g. Sonia/David Burgess and tube incident. Press coverage was awful.

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Transmedia watch. Work with media creators; gap in education. Social innovation camp; trans techies, media, journos/broadcasters – contact us @transmediaact @transmediawatch

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Q. A utopia where law does not interfere with people and their gender? Legal M-F/F-M transitions.

A. There was; they just existed. Legislation and pathologisation led to project to re-normalise.

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Q. Change of language ?? To reflect diversity of trans group?

A. Complicated! TG is useful for many. Weird stereotypes around TV e.g. otherwise successful men putting wife’s undies on at home.

Trans cf. privacy issues. Often that history is irrelevant and incidental.

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Q.  Is the goal to erase negative or balance negative with positive?

A. Balance. People will share strong negative opinions inevitably.

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Q. 1. is use of ‘proper’ pronouns a barometer for accpetance? 2. Maybe human minds are wired to categorise things. 3. Sexuality =/= gender… do you think it might be useful to dissociate completely from LG(B)?

A. 3. Trans people have sexuality; B or G or L… L&G esp have fixed gender associations and so are inadequate to deal with trans. Hence, LGBTQ(I) more relevant.

BBG: Stonewall etc. have resources and can often help.

1. Principle: right to self-determination. Choose your own pronouns (cf. ms?) Changing beauty standards related.

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Q. Scientific studies e.g. on brains etc. If there is a ‘trans test’, is it good or potentially harmful?

A. It would change dealing with transsexuality.

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Q. Ignorance. People are unaware of the issues; do trans people need to ‘get real’ and understand that people generally have no knowledge of these things?

A. Panic about making mistakes can increase their frequency; allay people’s fears – better for all – some trans responsibility here.

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LGBTQQ… we’re all beaten up by the same people!

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A call was made for a Corrie/LB blogpost.

Also: David Walliams played ‘Vulva’ in Spaced; when wearing some make-up after filming and walking through a park – he was verbally abused and stones thrown – he wrote about it and was apparently amused by this?!

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Also listen to the Pod Delusion report by Liz in Episode 107! Transgender and the Media (41:00) ft. Nathalie McDermott

The 3rd Perspective

In the spheres of skepticism and alternative health there are two main perspectives we encounter:

The ‘good’ and the ‘bad’

1)      That of the incredulous skeptic who insists all is bullshit, gets angry at the quacks and tries to stop them peddling rubbish at gullible people.

2)      The alt med proponents; be they sellers or consumers, they aggressively try to persuade you that it works and big pharma/your doctor are lying to you and the global conspiracy has suppressed all the ‘natural cures’.

Of course there are various severities of those views, stronger and milder, but they’re the most prominent types.

The Ugly?

However, there is a point of view that receives less attention. The sufferers of chronic incurable conditions whose friends and family, often merely out of care and concern, insist on telling them about this or that treatment/remedy/ritual/product that will make them better or even cure them.

Once or twice these suggestions can be laughed off or you can humour the person, but after a while it becomes more difficult to ignore.

One of my best internet friends (we’ve never met but have talked for years) has Ehlers-Danlos syndrome (EDS), a rare genetic disorder that affects connective tissue and causes frequent and painful dislocations and many other complications, depending on the exact mutation involved, that can make life very difficult.

Recently she’s expressed extreme frustration at all the people sending her articles about things that will cure or make her feel better. She suffers from other conditions as well, including Crohn’s disease, which gives the obsessive alt medders even more ammunition. I’m going to use her words (with her permission) because they convey the feeling better than my commentary would.

Here’s your anecdotal evidence

“I now have three people trying to convince me that eating right (read bizarre hippie stuff) will “cure” my EDS. Yes cure the syndrome I have, which is caused by a faulty gene I was born with.

I’ve to boil a chicken for at least 24 hours, until the collagen in its joints breaks down, because consuming that will cure me. To think I’ve wasted all this time going to doctors who’ve only studied the condition for years and know how genes work. I should have been chatting to this woman who read a page on the internet! It had nothing to do with EDS but her logic is sound.

Until this cure kicks in, I’ve to make an “elixir” of grains which have been fermented in raw milk from a pastured cow, raw honey, chillies, vinegar and mixed aromatic spices, which has been left to stand in a dark cupboard. I’ve to make it on the night of a new moon and allow it to brew until the next new moon. I then swallow a few spoonfuls several times a day. This will build up my strength, prevent pain and stop me from catching any viruses. It’s been proven to work. The guy whose website it’s on has posted several testimonies from people who tried it (the ones who didn’t die one assumes).

I’m only in pain though because I take painkillers (amazing how that works, I thought I didn’t start taking them until I was in pain!). Oh and my genetic abnormality (that I was born with) was caused by my being fed that poison called baby milk and getting the rubella vaccine (after I was born).

Another concerned friend enlightened me with the fact that if I consume large quantities of raw milk, raw butter and raw eggs, again from those “pastured” animals, along with “good meat”, more fermented grains and fermented beans, I will cure both my Crohn’s and psoriasis pretty much immediately. She has a friend who did it and cured herself and all her children. Those idiot doctors are just trying to make money so they hide the truth from us. There are several websites that prove this too.

Yet another friend knows of an homeopathic pill which will also cure my psoriasis. Yup, expensive water on sugar pills, plus fermented beans, will cure my autoimmune diseases.”

—

(To jump in here myself – my friend is obviously very sensible and intelligent, she knows all this is nonsense. But not everyone has that advantage and there are a lot of vulnerable people looking for advice and support online, including very seriously ill individuals…)

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Dangerous advice

“A woman posted on a forum looking for advice. She has breast cancer and breastfeeds. She’s about to start chemo and radiotherapy so has to stop feeding her baby this way. Her baby refuses to take a bottle though and frequently uses the breast for comfort but won’t take a dummy. What should she do to help him adjust? Well these educated women leapt in to help:

DO NOT go for chemo or radiotherapy, it kills more people than they let you know. Instead, go to this website or that website where they have “proven” you can cure cancer with the right diet. All you need is this combination of supplements and drink lots of vegetable juice. Don’t go back to your doctor, this man has a Facebook page that explains how to cure cancer naturally.

The best one?

You have lots of time before you need to worry, don’t trust your doctor. It’s much safer to use this diet.

Apparently, just by reading some website she trundled across one day, this woman is able to asses the progression and stage of your cancer and determine how much danger you’re in. Since she obviously knows more than any oncologist (well have you ever heard of one with this amazing skill?) I think we should all listen to her. Damn the big pharmaceutical companies and their sinister plot to suppress this life-saving knowledge. All it takes is some fermented grains, the tumor will evaporate and all remaining cancerous cells will reverse-mutate into happy ones again.

Seriously there were so many people claiming this stuff. It was scary. I hope this poor woman has the sense to ignore them. How vile can you get?  They are risking the life of a woman, with very young children, a woman they don’t even know! All because of their paranoia and their hatred of doctors and drug companies.

Oh and don’t get me started on their claims about what chiropractic can do. So many, Americans especially, believe in chiropractic and homeopathy. I wonder if they have ever actually looked at how these “treatments” are supposed to work? It’s the most surreal nonsense ever. Someone did say I should go to a chiropractor for my Crohn’s once. Of course, it’s obvious, cracking my spine is sure to stop my immune system from attacking my gut.

I know people on Facebook who take their newborn babies to chiropractors. It’s madness. Why the hell would you trust some glorified massage therapist to manipulate your baby’s spine? At best it’s painful and scary for them. God knows what they could accidentally do.

Then there are my ‘real life’ friends who keep trying to convince me I should let them do Reiki on me. It’s so logical, have someone hold their hands somewhere near you while they think really hard. I bet I can stop taking my pills after just a couple of sessions.”

I’m not stupid

“I know it comes from them wanting to help but I think it’s also that they want to show how much they “know”. They’re also saying that they know much better than me, the person who has to live with these conditions, and implying that I haven’t bothered to do any research. If I had, then of course I would have come to the same conclusion as them.

If anyone dares challenge their opinions, it’s claimed that you just haven’t done enough research. Apparently doctors do not use evidence based information in their treatments. I had one person tell me that some people want to heal themselves, others just want to treat the symptoms. Basically saying that my choice of conventional medication and therapies is stupid. I actually get pitied for trusting the doctors who have specialised in my disease for most of their lives. Who have seen thousands of people like me and have been able to compare their histories, eating habits and symptoms.

It’s draining and sometimes offensive. I don’t want to upset anyone by asking them to shut up about this stuff, so I bite my tongue but it gets to me after a while. I am not an idiot and I’m not naive. I am doing what I believe is best for me and for my family. I’m sick of the attitude and frustrated that they don’t respect my choices. Especially considering the stuff they choose to believe is based on bizarre, illogical claims.

At best their repeated claims are annoying and frustrating. At worst they’re downright dangerous. I don’t have an annoying cramp or a case of the runs. I have a very serious disease which almost killed me. It will not go away and there is every chance my life will be in danger again. If they hadn’t gotten my immune system under control, it would have destroyed my bowel. Now imagine that I had been determined to not take any of these “toxic” drugs. My body could have been so badly diseased that I couldn’t recover, that’s if I didn’t starve to death.

The only reason I am able to eat now is that I take two different pills, three times every day, which stop me rejecting everything I eat and drink. Trying to digest pulses would be so dangerous for me. Yet these people insist it’s what I need to do to get better. Thank god I know enough about my body and my disease that I haven’t tried it.

What if I didn’t know that? What if that poor women with cancer isn’t smart enough to immediately dismiss everything she was told? It was all presented as fact. “

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She also has issues with the amount of prayers people are offering, something I agree with but not everyone will and not as potentially dangerous as the kinds of things discussed here – so I’ll leave that out for now. Another popular one, especially on Facebook, at the moment is chemtrails. Sigh.

Not only risking yourself

While the stories of people choosing woo to treat their own conditions is sad in itself, worse still is people forcing it upon their children, potentially risking their lives.

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“One of my ‘friends’ daughters developed a severe rash, really nasty. It seemed allergic. She decided not to get it treated at all. Instead she dabbed breast milk on it and left her body to fight it. She actually risked her daughter, not herself. Refused to get it checked even though it was horrendous. She posted photos of it in her blog. It spread over her entire body, which was all swollen. Her face swelled badly, closing her eyes.
She knows better than any doctor though. The breastfeeding, no-vaxing mothers all talk about how amazingly healthy their children are…”

—

In addition, not only do these attitudes endanger them and their children, but other people’s as well. Declining herd immunity means we have seen resurgences of whooping cough and measles, for example.

Yet now, people are trying to promote recovery from Andrew Wakefield‘s fraudulent claims in the form of publicly-available written accounts, our libel laws are once again an impediment – fascinating and disturbing that the solicitor who paid Wakefield is also the director of the Society of Homeopaths, considering homeopathic measles ‘vaccines’ have been under scrutiny of late (on Newsnight, for example). Just sayin’.

We’ve a very long way to go.

I consider myself a very tolerant person but it is so so hard sometimes. When I’m repeatedly confronted by this idiocy it weighs me down. The religious nonsense is very hard. Even the ones who are otherwise nice people are tainted by their faith. They’re closed-minded, judgemental, bigoted, condescending and rude. Not to mention completely irrational and illogical, willing to dismiss extremely obvious facts if they even slightly contradict the doctrine.