Category: http://janrebel.eu/darbopqppyqbl.html Skeptical Activism

The August SitP Tour

June 2, 2012

The folks at Edinburgh Skeptics have been organising a skeptics on the fringe festival since 2010 and have seen fit to ask me to do my talk on definitions of autism, interventions, cultural representations and Applied Behaviour Analysis (ABA) on August 22nd, 2012.

I’m also booked to speak at Royal Tunbridge Wells Skeptics, Brighton Skeptics and Horsham Skeptics in August and I turn 27 on the 9th, so it will be a very busy month indeed!

other medications. UPDATE:  booked at Nottingham for September 4th. 

As the information on the Skeptics on the Fringe website points visitors to this here website, I thought I’d provide a bit more information on what I’m going to be talking about and why. Dates, links and details of the upcoming August dates are at the end of the post.

Studying and working

In 2004 I was studying psychology and noticed a sign on the uni psychology noticeboard about ABA. I was learning about Skinnerian behaviourism at the time and doing a module that included Autism on the syllabus. I’d seen the film Rainman and had a few ideas about what Autism was. I was also vaguely aware of the MMR vaccines scandal but wasn’t fully aware, at that point, how bad it was or would get.

I applied to be a tutor for the child, (who I’ll call Jack, to preserve his anonymity) and started learning more about ABA. I was very lucky and, I feel, privileged to work with such a delightful, wonderful child. Jack completely confounded all my expectations about what Autism is and I loved working with him. I worked with Jack until he went to a mainstream nursery and his available one-to-one home tutoring time clashed with my lectures and seminars.

Getting skeptical

In 2008 I left Cambridge to come back to Reigate, where I still live, and embarked on a period of self-employed work as a freelance writer, editor and part-time ABA tutor. In 2011 I joined Guildford Skeptics, which I now run. It was after I started identifying as a ‘skeptic’, in around 2010, after finding the Skeptics’ Guide to the Universe and Skeptics with a K podcasts, that I started realising that some of the interventions and ‘treatments’ that many Autistic Spectrum Disorder (ASD) children were undergoing were pseudoscientific, often actively harmful and sometimes downright dangerous. And I got angry. The list is almost endless, but treatments involve Acupuncture, Ayurvedic, Chinese Medicine, Chiropractic, Chelation*, Homeopathy, Hyperbaric Oxygen Therapy* (HBOT), Holding/Hugging Therapy, Energy Medicine, Facilitated Communication,  Secretin* and Lupron*.

* Chelation, HBOT, Secretin and Lupron are the treatments I’ve chosen to focus on for my talk.

Taking action against quacks

One evening I resolved to do something about it, even if it was just raising awareness, and my idea for a three-part talk was born. The first part of my talk is about the results from 700 people who completed my autism survey. In a further post, sometime in the near future, I will present my results in full, but not before I present them live, on stage, at Horsham, Brighton, Edinburgh and Tunbridge Wells (date of the latter yet to be confirmed).

I’ve now done my talk twice – at Guildford and at Hackney and I’ve had some good feedback from some ASD people and from some representatives from HiPHackney, an  independent forum for parents and carers of children with disabilities in Hackney:

Hackney skeptics tweeted: I gather lots of you were here for the first time and were coming more for autism than skepticism? Hip Hackney tweeted: through the ASD grapevine locally. We run a forum for parents of kids with disabilities; a couple of parents saw your poster. Hip Hackney tweeted: yes but maybe not for the last time! ASD parents need skeptics! Well done for spreading awareness through evidence. Hip Hackney tweeted: @HackneySitp @tannice_ yes massive thanks to Tannice. She did an amazing job dealing with all us obsessive ASD parents. Well done all. HipHackney tweeted: in reply to @RDGrainger (how did the skeptics talk go?) just fab - she did a great job - all about the evidence really. Some treatments for ASD are nothing more than child abuse...

Image has Alt Text or click here to read the tweets pictured above.

If you represent a charity or organisation for children with disabilities or a specific group for Autism, please do get in contact as I have further plans afoot. Watch this space and, if you can, come along to see my talk on any of these dates:

Talk dates

August 2, Tunbridge Wells, The Grey Lady

August 13, Horsham, The Tanner’s Arms

August 14, Brighton, Caroline of Brunswick (ticketed event)

August 22: Edinburgh Skeptics on the Fringe, Banshee Labyrinth 

September 4: Nottingham Skeptics, Fellows Morton and Clayton (details not on website as yet)

Burzynski & The Observer

November 25, 2011
(Originally posted on 25th Nov 2011, here)
 
The Observer Logo
Dear Observer,

Regarding: The worst year of my life: cancer has my family in its grip – http://www.guardian.co.uk/theobserver/2011/nov/20/a-family-gripped-by-cancer

As the daughter of a man with cancer I’m always interested to read about new therapies and scientific breakthroughs into cancer treatment. However, I felt I must write to you about the article by Luke Bainbridge, the uncle of Billie of Billie’s Butterfly fund.
I feel that the publishing of this article without any context is irresponsible and dangerous and that you’re actually missing a bigger story. Whilst I’m thrilled that so many celebrities have got behind Billie’s cause, I am saddened at what and who the money is going to. If only it was going to a better cause than this clinic.
Irresponsible and dangerous
Dr Burzynski has not, so far, published any results for his trials; trials conducted over thirty years. His studies have not been published or peer reviewed. Here’s what Cancer Research UK has to say about his research:

Some people promote antineoplaston therapy as a cancer treatment. But available scientific evidence does not support claims that antineoplaston therapy is effective in treating or preventing cancer.

Although Dr Burzynski’s own clinic have reported positive results for these trials, no other researchers have been able to show that this type of treatment helps to treat cancer. Other researchers have criticised the way the Burzynski Clinic trials have been carried out. Despite researching this type of treatment for over 35 years, no phase 3 trials have been carried out or reported. (My emphasis) (Retrieved 25 Nov from http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/what-is-antineoplaston-therapy )

Without any context to this article, others whose children are stricken with similar afflictions are likely to want to get the treatment that is talked about in the article. This is false hope. Often, these alternative therapies are undertaken by desperate families who eschew conventional treatment in favour of something with little to no evidence of efficacy.
Quackwatch goes into the science behind why it’s bunkum (and Burzynski’s credentials, or lack thereof) in great detail, here:
The bigger story
  • The FDA in the US have not approved the use of antineoplaston therapy for use in humans as a drug treatment. Burzynski is using them in his own trials, for which he is charging phenomenal amounts of money, without having proven anything. These are bogus trials: set up purely due to the fact the treatments are unlicensed, and so cannot be legally administered other than in a clinical trial.
  • (From Wikipedia) Burzynski’s use and advertising of antineoplastons as an unapproved cancer therapy were deemed to be unlawful by the U.S. Food and Drug Administration (FDA) and the Texas Attorney General, and limits on the sale and advertising of the treatment were imposed as a result. In 1994, Burzynski was found guilty of tax insurance fraud for filing a claim for reimbursement by a health insurer for an illegally administered cancer treatment.
  • There’s a film and a book that are convincing people around the world that conventional cancer treatments don’t work. This is highly dangerous and characteristic of alternative medicine purveyors who are doing their best to undermine the efforts of real scientists and doctors who are fighting against the horrendous illnesses we call cancer. Stating that there’s only one real cause of cancer is another claim that’s characteristic of quacks, yet it is known that cancer isn’t actually just one disease.
I urge you to write another article, with the facts about Burzynski laid down for all to see. It’s a difficult subject, especially given that many of his patients are children. However, I believe that it’s extremely important that people aren’t mislead by heart-wrenching articles about the victims of the cruelty we call cancer. There’s a wider, more important issue at hand: this man is making money from people’s grief, vulnerability and ignorance. 
If you need more context on this, there are blogs on the subject all over the place – something the mainstream press is missing out on. This one gives a very good rundown of extra links, for context.
Yours faithfully,
Tannice

The Psychic Sally Adventure

October 21, 2011

In October, @xVirtutex (Myles) and I decided to go down to Guildford’s GLive venue to speak to Sally Morgan fans. On the 1st October Simon Singh @SLSingh had tweeted that Sally had seen him coming and blocked him before he’d had the chance to even follow her (spooky, eh?) so I decided to follow @SallyMorganTV for laffs. Little did I know she’d be coming to the home of the Guildford SITP – an event that I kind of help out with running.

Reading about 10 minutes behind tweets, @SallyMorganTV said “Another new venue, at the G Live in Guildford tonight. It’s a sold out show. Look forward to seeing you there xSx”

Jokingly, I tweeted “Sally Morgan’s in Guildford… tonight? Why did no one tell me!” and “Maybe I should print out some @ProjectBarnum posters and give them to the audience?”

Sally Morgan

I should point out that I wasn’t entirely serious. At such short notice  there was no way I’d get there (45 mins drive from my home) in time to speak to them before they went in. However, I did get some encouragement from Alice Sheppard (@penguingalaxy), Simon Clare (@faithlesseye) and Hayley Stevens, (@HayleyStevens/@ProjectBarnum) who founded Project Barnum.

Project Barnum Logo

 

Project Barnum is a campaign to get theatres to understand the kind of psychic trickery that many Mediums and Psychics use in their shows & a free online resource for info on psychic trickery and how you might be being misled

Myles was kind enough to volunteer to come along to gallantly defend me from any kind of shenanigans so we put on our trainers in case we needed to run away (we definitely didn’t) and went on down.

Of course, being a sold out show, there was absolutely nowhere to park, so we settled on York St parking and went away to a nearby pub to regroup, talk about psychic practices (Myles is not particularly au fait with the skeptic movement… yet). Returning to the venue, we saw streams of fans pouring out, towards the very car park we had parked. Fortuitous.

I nearly lost my bottle but my curiosity got the better of me and I approached a group of three women. My cold reading skill told me that they were clearly related. Breezily, I asked them if I could ask them a few questions.

They had indeed been to see Sally, they had heard the media reports of her alleged cheating, but they weren’t put off by them. Sally had apparently covered that in her show and moved on to what she does. They hadn’t received a reading themselves, but they were hoping to hear from their deceased grandmother/mother. I asked them whether they thought it was for entertainment purposes but they clearly didn’t believe that. They seemed to understand that theatres had to say it was for entertainment purposes only to cover themselves, but didn’t recall that there was any information about that on the tickets or at the venue. After asking them a few more questions about whether they believed in Sally’s powers (they were paying for their parking), we skipped off. I was fairly happy to have got some answers to my questions, but they were perplexed as to why we asked them. It probably helped that we only asked questions, we didn’t try and push our agenda. That wasn’t really our aim.
Their curiosity piqued, they caught up with us, asking why we wanted to know. Myles had a few posters from the Project Barnum website in his hand and we showed them what we had.

That’s where things got interesting. The older lady said that she didn’t believe that a grandmother could be lying on stage. ‘Argumentum ad twinset and pearlsum’, said @Mickvagg.

Old Ladies: Not exempt from lying

Indeed – although this is actually argument from personal incredulity with a bit of emotional appeal thrown in. The lady’s daughter seemed to see the fallacy in her mother’s argument and pointed out that old ladies and old men sometimes do unspeakable things. Having a child who then has another child does not mean that you are immune to doing things that are immoral or illegal or even just a little naughty.

After speaking to them a while and gently putting my point across about the techniques that some psychics and mediums employ (using the ‘Spot a cheat‘ sheet from Project Barnum):

Project Barnum 'Spot a cheat' sheet

Image credit: Project Barnum (projectbarnum.co.uk)

and talking about Randi’s million dollar challenge they suddenly seemed a little uncertain about Sally’s powers and we gave them another poster with a link to Project Barnum’s website to seal the deal.

We later talked to a group of two women and three guys. One of the men seemed slightly taken aback that someone would approach him to ask questions and Myles and I both said later that we were worried he might kick off. But he didn’t. He was aware of P.T Barnum (the man, the legend) and appreciated the link. His wife was a tarot reader, which set my skeptical brain off a little. I didn’t go into tarot reading, but she seemed rather skeptical of it herself. They too weren’t aware of the ‘entertainment only’ caveat but did seem a little on the fence about the abilities of psychics, which leads me to ask why someone would spend around £25 quid on a ticket if not for entertainment value? We had a jovial conversation and they went off to eat their McDonald’s meal in peace, with another poster that linked to the website.

By the time we’d finished speaking to those people, most of the other fans had gone but we felt proud to have said our piece and maybe made a little dent in the confidence that those 8 people had in the power of the Psychic to reach across to the other side. Worth the 90 minutes of driving? Absolutely.

Is it time the ASA told us how it makes its decisions?

August 19, 2011

After @landtimforgot‘s successful campaign to get the MHRA to publicly list its registered homeopathic ‘medicines’ and a quick chat with @jimbobthomas at @GuildfordSitP, I decided to write about some correspondence I recently had from the ASA.

I complained about my local acupuncturist, who was making some claims about treating, amongst other things, asthma and gallstones (he has now changed his website). Having suffered from both conditions in the past, I know that both can be life-threatening. Thankfully, I seem to have stopped suffering from asthma and, due to a Cambridge surgeon, no longer have a gall bladder to fill up with nasty stones. Asthma can kill: no doubt about that. Gallstones can also kill you, if left untreated, due to infection, although this is rare. They also hurt like… well, women who’ve been through childbirth and had biliary colic told me they’d rather pop out some more kids than go through it again.

You can view the images that I sent to the ASA about my local acupuncturist here.

(thanks to @Simon_Perry for creating Fishbarrel, which you should install immediately, should you wish to make complaints to the ASA)

So… on to the ASA. They wrote to me to tell me:

“CAP and the ASA have previously seen evidence that acupuncture can help treat dental pain, nausea and vomiting, provide short-term relief of tension-type headache, migraine headaches relief, temporary or short term relief of low back pain and provide temporary adjunctive treatment for osteoarthritis knee pain. The ASA therefore accepts that acupuncturists can make the above claims about their therapy. However, the complaints we have received highlight that some acupuncturists are making claims to treat other medical and health conditions for which we have not seen evidence.

We intend to take one complaint about advertising claims for acupuncture forward as a formal investigation, which will be chosen on the basis that the claims made in the advertising are representative of the types of advertising claims made across all the complaints we have received. We will ask the advertiser in that case to provide substantiation for their claims, and we will publish our findings on our website as a formal adjudication. We will then be able to follow up any further complaints we receive about efficacy claims for acupuncture (for which we have not seen evidence), as a compliance issue.”

I was surprised to note that CAP and the ASA have seen evidence to substantiate the claims acupuncturists make about the above list, so I had a look around, wondering what I could possibly be missing. Had new evidence come to light? Were there new studies? I thought that it was likely I would have heard about this new physiological basis for acupuncture, on Twitter, especially from Simon Singh and Edzard Ernst, writers of ‘Trick or Treatment‘.
I found nothing that seemed to properly substantiate these claims in terms of studies. So I wrote to the individual at the ASA again:

“I note that in your letter that you write that CAP and the ASA have seen evidence that acupuncture can treat dental pain, nausea and vomiting, tension-type headache, migraine, low back pain and oesteoarthritis knee pain and that therefore acupuncturists can make claims that they treat this on their marketing material and websites.

I would be very interested in the specific evidence that you have received to this effect and would politely request you to point me in the direction of this evidence as I’m sure that it could put my mind at rest as to the efficacy of acupuncture in these circumstances.”

I thought that, given these are medical claims, there would be some kind of resource the ASA provide that say what they base their decisions on; maybe even some links to peer-reviewed articles? Who, on behalf of the ASA, evaluates the evidence? After all, it’s not always easy for the layman to see through some methodology: even having studied research methods at uni, I often find my evaluation skills lacking and somewhat lazily rely on people like Ben Goldacre to re-explain where there are holes in scientific data collection methods, or a skew in population sampling, or other confounding variables. Having looked at a job profile for a position with the ASA in recent months, I note that a science-based education is not mandatory (not that I believe it should be). It’s just an observation. Who is responsible for deciding what alternative therapists can claim to treat? The ASA’s biography list of Council Members, who decide on each advert, doesn’t specifically include anyone with a medical or scientific background. However, the senior management team does have one person who has a degree in chemistry. Although, when I asked on Twitter, someone who saw my question said that there was a possibility they did call on scientific experts. Just to be clear: I am not decrying the work of the ASA here, just asking some questions.
Anyway, I received a response that seemed to me, at least… a bit… well, I don’t know… you read it:
“The ASA has almost 50 years experience of investigating advertising claims, and CAP and the ASA are experienced in assessing the evidence sent to us in support of advertisers’ claims, including evidence for claims to help or treat medical conditions. We assess both the content and the methodology of the research in our assessment of whether the evidence backs up the advertising claims. Our current position about advertising claims for acupuncture reflects our assessment of the evidence we have seen for the use of acupuncture in the treatment of certain conditions and it does not form part of our current investigation. Please note that we are not in a position to forward that evidence on to you.”
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