OMG an OBE!!

I received this email earlier today.
Of course..............

The School Reunion

On Saturday night (October 27th, 2012) I went to a school reunion. I have to say it was an event I approached with mixed feelings. I left school after my 'A' levels in 1980, and apart from one person I'd not kept in contact with people from my 6th form until I joined Friends Reunited a few years ago. Here I was able to see information about some of the people I'd been in school (and elsewhere) with. However, it had the possibility of getting a bit confusing as the information you could find was determined by putting in the name of the schools you attended and then filtering according to the year you left. This created a bit of a problem! While I stayed on to 6th form and left in 1980, most people didn't and so left after 'O' levels and CSE's in 1978 (we were pre-GCSE although there were moves already happening leading to the change). Some people I knew well stayed on in Lower 6th dropped out at various stages. So, in order to catch up with everyone I knew I had to look at 1978, 1979 and 1980. I then had a load of names from those years who weren't in my school year but left at the same time, so that were a large number of people I didn't recognise. Oh well, it was entertaining to plough through the lists of names. I also looked for names of people I knew in the years above me to find out who'd signed up. Of course, one of the biggest problems with such a social network is that membership is largely self-selecting although you could invite people you knew to join but that meant knowing how to get in touch with them in the first place.......

Oh well! Through Friends Reunited I was able to see information on people I'd know back in school and actually got in touch with a few of them. In some ways, finding out a little of what was going on with so many people I'd been in school with did make me think about my reasons for wanting to find out what was going on with them. Was I simply curious? Was I wanting to find out about their successes and failures? Did I want to see people I liked and got on with in school succeeding and those I didn't get on with failing (and was that genuine loathing or being mean-spirited on my behalf)? It's fair to say that before 6th form, there were just a handful of people I'd call friends and even in 6th form there were some I wouldn't count as friends. At least there weren't people in 6th form that I really didn't like........

Was it the prospect of a reunion that possibly worried me? No. I'd been to reunions from my year in medical school and was even involved in organising the last one in 2010, the 25th anniversary of qualifying as a doctor. TWENTY-FIVE YEARS as a doctor!!!! Add five years on to that and that's how long since I left school. So, by now, it was 32 years since I left school and 34 years since I'd seen those who left in 1978. I think mainly it was the possibility of meeting up with people who I'd not got on so well with at school and wondering what the reaction was going to be, both their reaction to me and my reaction to them. Of course, I've changed enormously as a person and so has everyone else. After thirty-odd years we've all experienced something we call "life". As teenagers, we may have thought we knew what it was all about and had all the answers and had our lives mapped out. Aww! The innocence and naivety of youth. I wonder how many of us actually ended up doing exactly what we wanted to do in the way we wanted to do it and without any sort of mistakes, bad luck etc. Probably very few, if any!

So, how did the idea of a reunion come about and was it worth it? The idea was proposed by someone who I was in 6th form and taken up by several others. However, Friends Reunited seemed to have become somewhat passé. Facebook had taken over as the major social network for getting in touch with former friends and organising events, so it was over to Facebook! Several former members of the school year were already there and so connections were established. The idea was mooted that the reunion should be for those who had reached the grand age of 50 +/- 1. It was always going to be somewhat unpredictable as to the level of response, so opening up had the opportunity to get bigger numbers of people to attend. As is the way with these things, an initial flurry of activity was followed by a quiet period before someone else took up the challenge to get the details sorted out to actually ensure that the reunion actually took place. After many weeks and months of ideas going around, eventually the plan was to meet up at the Central Hotel in the Trallwn area of our home town of Pontypridd. I think the last time I went there was probably around 1981 or 1982, so of course it had changed enormously since then. Most of the building seems to be taken up by an Indian (Bangladeshi) restaurant, so the plan was to meet in the upstairs function room before eating later in the restaurant. This was good - I do like a nice curry and have even been known to make a few myself.

It wasn't really clear as to how many were going to turn up to the reunion. It seemed that while there were many people keen to meet up, there would only be about 20 or so wanting to eat. Maybe they knew something about the restaurant.........

The night of the 27th October arrived, so my wife and I set off on the short journey to Pontypridd. When we arrived at the Hotel, there were around 20 or 30 people there, but this gradually filled up so that I would estimate that there were around 70 or 80 people there. The biggest challenge was trying to identify people I knew! Some were easy, as I'd seen their pictures on Friends Reunited or Facebook. There were several people there I hadn't known in school, so I had no chance of knowing who they were. One person took the sensible step of wearing a badge with his name on and a picture from school! Maybe we should all have done that!

I did spot a few people I recognised and got chatting, reminiscing about school days and catching up with what they were up to now. A few people had moved around and were living away but there were many who were - like me - living in Cardiff and many who were still in the Pontypridd area. It seemed that quite a few of those still in Pontypridd were in regular contact, whereas those who'd moved away had mainly lost contact, even if only in Cardiff. Social networking has, however, allowed many of us to re-establish long-lost connections.

So, how was the reunion? Was it enjoyable or just painful? I have to say, in spite of my anxieties, I really enjoyed the evening. I chatted to people I'd been good friends with and others who I wasn't so friendly with. It was good to hear what people were doing with their lives. Sadly, some people had suffered ill health (one had a  bone marrow transplant for leukaemia, another had a renal transplant - both doing well now). One guy had apparently choked to death in a restaurant - grim! Many of us had changed in appearance. Some said I had changed the most - maybe that's true! I used to wear black plastic-framed glasses in school (from the age of 9) and didn't get "trendy" metal frames until well into medical school. I finally shed the specs about 18 months after qualifying. What was gratifying was being one of the few with a full head of hair, albeit going somewhat grey! Sorry, guys!

The food turned out to be a bit disappointing and the service was poor, but at least it was cheap! You get what you pay for. The chief organiser did apologise, but it wasn't her fault and at the end of the day it's doubtful if the reunion would have happened (at least not by now). The social aspect of the evening was far more important than a curry which was adequate if nothing special. I don't think I would necessarily choose that restaurant again unless I was drunk and there was nowhere else to go. However, if another reunion is organised, I'm definitely up for it. Bring it on! Somewhere in the depths of my attic are a whole bunch of photos from school - I was an avid photographer and member of the school Camera Club. I must try to get to them soon and scan them in to post on Facebook. One girl I was in school with (and fancied like crazy!) went on to win the "Miss Wales" title - perhaps all those pictures I took of her somehow inspired her to start modelling. School wasn't all bad - was it?

Carlton Hazlewood, the Burzynski Research Institute IRB chairman - what ARE the links between him and Stanislaw Burzynski?

The well-known blogger and cancer surgeon & scientist Orac has written another great blog examining aspects of the failures of the Burzynksi Research Institute (BRI) Institutional Review Board (IRB), linking to recently discovered letters relating to FDA inspections. It brings into question the entire relationship between Dr. Burzynski and Carlton F. Hazlewood

Carlton Hazlewood may be an even more "interesting" character than even the FDA letters appear to make him. A study of Burzynski's CV (available to download from the Burzynski Clinic website http://www.burzynskiclinic.com/sr-burzynski-md-phd.html shows that his very first mention of the word "antineoplaston" appears in a paper published in 1976 (listed as number 140 in the CV) in a journal listed (by abbreviation) as Physiol Chem Phys - this turns out be be "Physiological Chemistry and Physics". This has now morphed into "Physiological Chemistry and Physics and Medical NMR" in 1982. http://www.physiologicalchemistryandphysics.com/

Sadly, the online archive of this journal is incomplete, with only 2 articles from 1976. PubMed has no abstract available  

http://www.ncbi.nlm.nih.gov/pubmed/1013179

Oh well! However, further information reveals on the journal's website that its "Editorial College"  has listed among its members, a certain Carlton F. Hazlewood 

http://www.physiologicalchemistryandphysics.com/editorial.htm

Bottom left-hand corner. Hmm! It also turns out that Hazlewood was employed by Baylor College of Medicine from 1965 until 1997.

http://www.forbes.com/profile/carlton-hazlewood/

When Burzynski first worked in the US, he worked at - Baylor College of Medicine - from 1970 to 1977. This, of course, may be pure coincidence and I don't know how long Hazlewood has been on that journal's Editorial College. Burzynski does, however, have 5 other publications in that journal between 1973 and 1977.

Also of note is the name of the journal's Chief Editor, Gilbert Ling. He has a number of book titles listed on Amazon, but doesn't have a Wikipedia entry. Googling his name, you can find his own website - the contents seem a little "odd" to me (are those ducks I can hear?). Going further down the list takes you to this

http://gerson-research.org/docs/HildenbrandGLG-1979-1/index.html

Yes - it's a Gerson website. Oh dear! Searching that page you find several mentions of Ling and - Carlton Hazlewood. It appears that the article is a re-publication of an article published in something called "The Healing Journal". The title itself raises a red flag. It's certainly not PubMed listed. Googling it takes you to http://www.thehealingjournal.com/

This is going from bad to worse - the red flags are waving so much you could start a wind farm! The article is dated 1979 and seems to be too old for the archive on the website. 

Much is made in the article of a connection between Ling, Hazlewood and Raymond Vahan Damadian, inventor of the MRI scanner. Curiously, there seems to be no mention of Ling or Hazlewood on Damadian's Wikipedia page or on that about the MRI scanner. Perhaps someone can enlighten readers about the veracity of this claimed connection? It seems that the article's author, Gar Hildenbrand, (more red flags - Gerson!) thinks that MRI will prove that Ling's theories about cell structure, which seem to be at odds with the work of other scientists in the field of cellular structure, e.g sodium channels. http://en.wikipedia.org/wiki/Sodium_channel

Gar Hildenbrand is, it seems, a former Executive Director of the Gerson Institute.

I have no idea whether Ling is or was a genuine cell biology researcher who may have gone bad (there do seem to be several articles authored by him listed on PubMed) or is simply having his name taken in vain by cranks. It's not my field - if someome knows the real story could they please provide a link or reference. However, the article on that Gerson website claims that "Gilbert N. Ling may very likely be known by future generations of scientists as the Father of Cellular Biology". Really? Surely such an achievement would've merited a Wikipedia entry..... 

Maybe I'm simply making too much of connections by association. Maybe someone in the USA knows more or can find out more about Carlton Hazlewood. There is some more stuff on Google, but I'm not sure how relevant it is to this subject. 

Another letter has just emerged from the FDA to Hazlewood dated 14th December 2009 shows that the Burzynski Research Institute hadn't been keeping up with its obligations and had failed to register "at a site maintained by the Department of Health and Human Services".

http://www.circare.org/info/bri/fda_to_bri_undated.pdf

It's still not registered, it seems http://ohrp.cit.nih.gov/search/irbsearch.aspx?styp=bsc

One has to wonder if the relationship between Burzynski and Hazlewood is more complex than it appears to be based just on the IRB stuff. 

 

Welsh Intensive Care Society Summer Meeting 2012

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Another family seeking a miracle, but why won't the Independent (Ireland) publish my comment?

Recently, I was made aware through Twitter that another family were looking for a miracle cure for their sick child. The story was published in the Ireland version of "The Independent"

http://www.independent.ie/national-news/us-treatment-hope-for-little-alexandra-3168094.html

Now, as many skeptics have pointed out previously, the desperation of families in such a horrible situation is awful and yet understandable. Parents will do just about anything to give their children health and long life, so when you have a sick child it is completely understandable that when given the awful news that your child is dying of cancer (or any other disease, for that matter), you will seek out anything that offers hope of life prolongation or even a cure. These days, for better or worse, the Internet gives access to far more information than was available 20 years ago. The problem is that no matter how much genuine information is posted by genuine cancer doctors and scientists, there is just as much, if not more, useless information put out there by quacks, charlatans and those who have left behind science and medicine to feather their own nests by promoting their own half-baked, debunked therapies. So many such "therapies" have failed when subjected to appropriate scientific scrutiny, for example Laetrile, homeopathy. A good summary is provided at http://www.cancertreatmentwatch.org/reg/125.shtml but even that barely scratches the surface of some of the biggest worthless treatments out there. Have a rummage around on http://whatstheharm.net/ to see the problems encountered with the likes of homeopathy.

One such treatment which has failed to show any evidence of having anything to offer is that offered by the Burzynski Clinic in Houston, Texas, run by one Dr. Stanislaw Burzynski. There are multiple blogs pointing to the failure of Burzynski to publish anything of any value in showing that his "antineoplaston" therapy has any proven benefit in any form of cancer. It seems that Dr. Burzynski once had a theory that patients with cancer were failing to secrete into their urine various chemicals that patients without cancer were. He therefore sought to give substances - which he termed "antineoplastons" to patients with various forms of cancer on the premise that replacing these missing substances would somehow cure their cancers. According to his CV, published on the Burzynski Clinic website, http://www.burzynskiclinic.com/sr-burzynski-md-phd.html , he has been researching these compounds since 1976. Simple mathematics therefore gives a period of approximately 37 years of research into "antineoplastons".

So, when I see articles referring to The Burzynski Clinic providing "pioneering" or "groundbreaking" or indeed any other adjective that might suggest in some way that "antineoplastons" may have an as-yet undiscovered potential for treating or curing cancer, my blood runs cold. Such terms have been frequently used by mainstream media sources and have been rightly criticised for being examples of lazy journalism. Sadly, yet predictably, the cancer sufferers highlighted in such stories have a tendency to die from their cancers in the way that the doctors said they would - in other words, the original prognoses turned out to be reasonably accurate and nothing that the treatment provided the Burzynski Clinic made any difference. Dr. Burzynski has been soundly criticised for systematic failure to complete clinical trials and publish their results. According to the Clinical Trials database (a service of the US National Institutes for Health), Dr. Burzynski has 61 trials registered.http://clinicaltrials.gov/ct2/results?term=burzynski  Of those trials, only one - yes ONE - trial is recorded as completed in possibly 2009 but the results are not published anywhere. All bar one of the other registered trials are listed as status "Unknown", "Withdrawn" or "Terminated". The Burzynski trolls who loiter on Twitter looking to spread the word of the "miracles" performed by the Burzynski Clinic conveniently ignore this abject failure to publish while banging on about the single registered Phase 3 trial. Yes, you read that correctly - Dr. Burzynski has apparently never conducted a Phase 3 trial of his "antineoplastons". However, he does have permission for a Phase 3 trial listed for the treatment of optic nerve glioma. It has been pointed out by cancer scientists on Twitter that this particular tumour has a 90% long-term survival rate with conventional cancer therapies.

http://www.pedsoncologyeducation.com/OpticPathwayGliomaPrognosis.asp

The value of studying a "new" therapy for this tumour type is therefore questionable. According to the Clinical Trials database, the Phase 3 Burzynski trial for this tumour was registered in December 2010 and was due to start recruiting in December 2011. There's no further information as to the status of this study, but not even the trolls seem to know anything about this trial starting. Some skeptics are suggesting it's just an elaborate marketing ploy. As if.........

http://clinicaltrials.gov/ct2/show/NCT01260103?term=burzynski&rank=61

The Burzynski Clinic website implies that Dr. Burzynski has an extensive list of publications. http://www.burzynskiclinic.com/publications.html However, even just a preliminary analysis of this list shows that many of these publications are just conference poster abstracts, generally regarded as being of very low value as posters are not subjected to a peer-review process. A more accurate state of Dr. Burzynksi's publications is given by the PubMed database. A search for "Burzynski antineoplaston" reveals just 37 publications in total and none since 2006.http://www.ncbi.nlm.nih.gov/pubmed?term=burzynski%20antineoplaston  Even what has been published is of questionable value. A summary of this is given by Jen McCreight in her blog http://freethoughtblogs.com/blaghag/2011/11/a-look-at-the-burzynski-clinics-publications/ Essentially, there is no published evidence of any benefit from Dr. Burzynski's antineoplaston therapy. Late in 2011, the Burzynski Clinic really put it's collective foot in it by employing someone called Marc Stephens to clean up the Internet by getting bad news stories about Burzynski and the clinic removed. He set about harassing various bloggers who had posted stories showing Burzynski and the clinic in an adverse light by pretending to be a lawyer and threatening to issue libel proceedings against them. Needless to say, the reaction on the Internet to such threats was swift and damning, releasing a Streisand Effect. The clinic later issued a statement saying that Stephens had been dismissed but that they were still considering issuing proceedings against the bloggers.

https://docs.google.com/file/d/0BzijOpjuex1bMjE4N2JjOGItZGFlOS00NDE0LTk2YzktMThkYjFiOTU2YjNl/edit?hl=en_US&pli=1

To date, over 8 months later - no law suits. Hmm! Of course, the best defence in a defamation case is to show that what was said or written is true..... It's turned out that Stephens is not a lawyer - at the very least he's not registered as such in either Texas or in his home state of California. In several US states it's a criminal offence to pretend to be a lawyer. Perhaps Dr. Burzynski's real lawyers have been too busy with his ongoing legal battle with the Texas Medical Board and with a former patient suing him.

http://reg.tmb.state.tx.us/TMBPublicWebSite/BoardOrders/ViewBoardOrders.aspx?ID_NUM=49851

http://www.hcdistrictclerk.com/edocs/public/CaseDetails.aspx?Get=mrq5CdIKQl7cEbvbErD5t7rNS1R7XxgRz81DDtWr5vexteWmqrSe/4oHf8IMvoVJ8hmVyNS1HCqT2VdYM9PGmgbiimoTXAiRz5f75gE/GFg=

A great list of all the blogs and news stories on Burzynski is given here:-

http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

It was further discovered that Marc Stephens is a web developer and responsible for "Marketing & Sponsorship" for the Burzynski Patient Group, a "support group" for raising "public awareness of Dr. Stanislaw Burzynski's breakthrough treatment for cancer using Antineoplastons and gene-targeted therapy" and to "provide useful information and emotional support to cancer patients and their families".

http://bhttp://burzynskipatientgroup.org/contact-us

http://burzynskipatientgroup.org/about-us

The reliability of the information presented on this site has also been brought into question by skeptical bloggers, as it seems that several of the patients listed there have subsequently died from their cancers.

So, on Saturday, 14th July 2012 the following story (apologies for duplication of the link from the top of this article) appeared in the Irish edition of "The Independent" 

http://www.independent.ie/national-news/us-treatment-hope-for-little-alexandra-3168094.html

I don't know if this was just the website or in the printed edition as I'm not in Ireland. When it first appeared there was the opportunity to post comments. I therefore wrote the following comment:-

 

While it is desperately sad for the child and her parents, the Burzynski Clinic offers nothing but false hope and charges vast sums of money for no benefit. Burzynski has been "researching" his "antineoplaston" therapy since 1976 but is yet to publish ANY evidence of benefit for any type of cancer. The overwhelming majority of doctors and cancer scientists would describe this form of so-called "alternative" medicine as not so much unproven but - given the length of research time to date - disproven.

I cannot blame the parents for wanting to explore every avenue to find a cure for their child's cancer. However, Burzynski offers nothing but financial pain and misery. There are many useful resources available on the Internet which document the failings of Burzynski to deliver anything of any value.

http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-antineoplas...

http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynskis-personaliz...

http://scienceblogs.com/insolence/2010/05/05/harnessing-peoples-good-to-pay-f...

http://scienceblogs.com/insolence/2011/12/05/personalized-gene-targeted-cance...

http://scienceblogs.com/insolence/2011/12/12/what-dr-stanislaw-burzynski-does...

http://www.quackometer.net/blog/2012/03/the-burzynski-millions.html

http://bioworld.blogs.bioworld.com/2011/12/05/burzynski-institute-patient-exp...

http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

I don't want to come across as the bad guy here! However, readers should also note that Dr. Burzynski is a convicted fraud and is the subject of an ongoing investigation by the Texas Medical Board. Caveat Emptor!"

Given what has been discovered and written about the Burzynski Clinic, I didn't think this was overstating the case, saying anything untrue (and therefore defamatory) or seeking to blame the parents. Upon posting, I received a standard "Your comment is awaiting moderation". Ok, fair enough. It's their website. I waited, but the comment never appeared. On the Sunday, a comment was posted by a Cardinal which also critised the Burzynski Clinic but my comment never appeared. I therefore resubmitted my comment. Today, Monday 15th July, not only has my comment not been posted but the Cardinal's comment has disappeared. Furthermore, there is now no longer an option to post comments on this story. One is left wondering why. In the UK, similar stories led to severe criticism of journalistic standards, most notably in regard to a story published in "The Observer". The failure of journalists to do any proper research into stories such as this about medicine and science only serves to mislead the readers and viewers as to the evidential truth of such stories.

The best advice I can give here is to take stories of "miracle cures" and "groundbreaking research" with an extremely large pinch of salt! If reading about such stories on the Internet, a really useful tool is to use the "Web of Trust" ratings tool http://www.mywot.com/ and to use resources such as http://www.senseaboutscience.org/

America must be so proud (not)

Burzynski and the Illuminati? Err? Where did this one come from?