By Keir Liddle
Something has been troubling me over the last few days as the Burzynski clinic saga has been unfolding the slowly increasing involvement of Burzynski supporters and followers in the online twitter debate. Such instances have thus far been sporadic but I would like to urge all those involved in twitter exchanges on Burzynski to keep in mind that patients and prospective patients of the Burzynski clinic are already in dire and desperate situations battling with cancer. It should not need saying, and thankfully the vast majority of skeptics, medics and tweeters have engaged sensibly and sensitively, but these people are not the enemy.
They are desperate for a cure, for a treatment, desperate to live and they do not need to be engaged in debate or argument on the internet pointing out to them directly that the treatment is nonsense or that their arguments are founded on logical fallacies. These people are seriously ill, they deserve our sympathy and support.
I would like to stress that the vast majority of direct engagement has thus far been civil, sensitive and sensible. Let’s keep it that way.
But the whole twitter storm has raised some interesting questions for me. Are we doing enough to protect and support those who have been taken in by promises of miracle cures? Is it enough to simply offer the evidence and the dissenting view and hope people make a choice based on the best available evidence and knowledge?
What about those who only discover after the fact that the miracle cure they have signed up for does not in fact work or worse still may be an out and out con?
I would like to think that by blogging and raising awareness that was doing enough or doing everything that we can possibly do but more and more my gut is telling me this is simply not the case. We reveal the lack of evidence in support of these miracle cures and alternative treatments and we will even publicise far and wide the tragic human cost of many of them. But is it enough as skeptics to just carry on as we are and simply do this?
Increasingly I doubt it is.
Which is why I am on the search for support groups, charities and other organisations that exist to help support those who have been taken in by snake oil salesmen. Or have lost relatives, friends or life savings to the false hope promised by quacks, charlatans and pseudo scientists promising salvation. If anyone knows of any please comment below and we at the Twenty-First Floor will work towards creating some form of online resource for the victims of quackery.
If such a thing does not exist I am willing, though I will almost certainly need the support and assistance of others, to explore the possibility of setting up a charity to show these individuals that skeptics have not forgotten them. That their plight isn’t just about blogviews or quackbusting but rather that skepticism has a (for want of a better turn of phrase) a “human side”. The major obstacle to this endeavour is that I would be starting from scratch with zero knowledge so I would appreciate if anyone is able to advise on this in any way, shape or form.
My proposal would be to explore whether a charity that offers access to counselling for those duped by alternative medicine treatments or affected by bereavement following the use, in desperation, of alternative and unproven treatments. A charity that could perhaps also offer legal advice to those whose life savings have been sunk into unproven and perhaps dangerous treatments.
On a small scale this could perhaps be achieved by seeking trained and qualified volunteers from the skeptical community itself. Setting up a time bank or similar where those with counselling or legal experience could offer some initial advice to those negatively affected by quack treatments, psychic cons or other such things. If this might be something that would be of interest to you please comment below (as I feel it is the most achievable thing we might be able to do).
We could perhaps also use some of our quackbusting time to contact local medical charities and organisations to see what support they offer. For instance in the UK people could contact their Citizens Advice Bureau and we could collate such information into an online guide or website for those affected.
There are big versions of this idea and smaller more manageable ones and there may be others out there with better ideas of what is achievable and what we could realistically do. Please do comment or otherwise get in touch as I think we could make at least some small difference as skeptics by helping these people.
I am a skeptic because I care about the damage that quackery can cause. I reckon it’s probably about time I tried to do something about that. Whether or not I can remains to be seen, but I’m not sure I can’t at least try anymore.
If you know of any such groups that already exist or might be willing to help in some way, no matter how small, please do comment below.
twentyfirstfloormirror 
Fantastic idea, Keir.
I hope this will actually happen.
I’d be very happy to help out in any way I can.
My main concern, personally speaking, is time (and a mild phobia of telephones!) but I would be happy to coordinate the gathering of information and collate it into some sort of guide or resource.
Or do what legwork I can online checking out the various rules and regulations that will need looked at.
I can guarantee I will need help though. Lots of help.
In principle I agree wholeheartedly with the premise and would be prepared to contribute in some way to such an endeavour if it was demonstrably beneficial to the victims of quackery.
Of course, this should, as a minimum, be set up in a way which genuinely benefits those victims. If this was not done then it would be grossly hypocritical (although the standards expected and required are nowhere near that for a medical treatment). I think the biggest problem would be in isolating what impact this has on those who have been scammed.
For instance, the family of the person that died or suffered is not likely attribute much of their pain of grief to the quacks that stole. After all no cancer treatment is 100% effective, and some hope is better than no hope. And, they were taken in in the first place, and probably have been coached by the quack in order to keep them onside even in the event of death.
Also, in many cases, the costs are borne by fundraising efforts such that the family themselves may not be adversely financially impacted. Of course, in that case the “victims” are far greater in number, but the individual impact on each is fairly low. It’s unlikely that many would feel the need for councilling or legal action and in some cases (like the Peter Kaye fundraiser) they may feel that they got something out of it.
And, of course, there is the very real issue that raising the possibility that they have been duped may create further stress and anguish for the victims.
Of course, the real damage is far wider. The quacks and their supporters will slander the genuine medical professions (as only by discrediting them can they reel in more gullible punters) and money and effort is diverted away from genuine medical research that could actually find genuinely effective treatments or even, in some cases, cures for the myriad of ailments we call “cancer” (for which there can be no single cure, except death).
So, whilst I would wholeheartedly support a campaign or organisation which genuinely provided beneficial support for the victims, I wonder if that is possible. I believe that the evil genius of these quacks is that their crimes are difficult to prosecute and their their victims are unaware they’ve been scammed.
I would love to be proven wrong.
So I would propose a better use for such a charity, organisation or campaign would be to push for some form of tighter legislation on fundraising for medical causes.
Sensitive writing and excellent idea. I’ll help any way I can.
All journalists should be trained and encouraged to contact http://www.senseaboutscience when considering writing a medical, health or scientific story.
They are a charity. They have many experts on board who can help verify claims, check evidence etc.
I am not connected, just an admirer.
http://www.senseaboutscience.org/
That’s a lovely and constructive idea. I’m going to think about ways that might happen in the US too.
I really like this idea and agree it’s vital to keep the focus on the human impact of this kind of quackery. Happy to help put a fundraising “case for support” together if you wanted to start something. Not aware of any charity that currently offers this service and agree it could be hugely positive. The idea reminds me slightly of those organisations that exist to help those exploited or affected by religious cults. I imagine Sense About Science would also have some good ideas as they do a lot of work with patient groups and have an advice service for people unsure about a particular scientific claim.
Compassion in action. I commend this.
This is an excellent blogpost, and brings up one of the awful sides of being a skeptic – in a situation like the one we’re in the middle of, the interested world splits into two ‘teams’ – on one side is the quack and the families he is treating, and on the other are the skeptics. The thing that we cannot give the families is the thing they get from the quacks – hope. When you face a family member having incurable cancer, you want to do something – anything – to make them better. Raising money to send them to a clinic is something you can have control over. Even though it would be of far better use to raise money for useful cancer research, this is too disconnected from that family member to make you feel better. And you’ve already been face to face with mainstream doctors telling you that, unfortunately, there is not much that can be done.
Once a family has committed to a treatment, there is very little we can constructively do for them. Anything we do will be hurting them, which is just awful, but it’s an almost unavoidable byproduct of our activities. I think that we should, in a sense, stick to what we do best, which is warning those who are not yet committed or aware of the medical facts away from quackery, and encouraging/pressuring the authorities to do their job in regulating this sort of thing. I don’t think we should get out of our depth or be unrealistic about what we can achieve.
I think your last sentence is the most important – if we can identify groups/orgs/charities that already have the infrastructure set up to supply counselling, etc, we should put our efforts into supporting them.
I would suggest that the next step to move this forward would be to gather information.
By contacting various health charities and similar to explore what support mechanisms already exist and then we can publish this.
This could lead to the creation of (at least) two online guides:
What to do if you have been duped?
(With details of support services and directing people to legal advice)
and
How to help stop others being duped?
(How to make a complaint to the ASA, trading standards and what legislation might help stop the promotion of harmful quackery)
I would suggest looking through the Charty Commission as the first step: http://www.charity-commission.gov.uk/
Find out if such a charity already exists, and then find out what you need to set in place before applying for a licence to operate a charity, having got charitable staus it then allows banks and Inland Revenue to give tax free status to the organisation.
Find trustees willing to put their names on a public register, a bit like a board of directors, but unpaid.
Linking with a similar American organisation is a good idea, better if the same operating name is used, just think of all those international charities that do just that.
Apply for a Lottery Fund grant to set up the charity, then set about asking celebrities to raise money for the charity.
Who is going to run it, if it gets too big to run as an after work organisation it will need to employ staff and rent premises.
Yeah I know it seems as if I’m running before I learn to walk, but you have to plane ahead, at least a minimum 3 year plan.
I’d get directly involved but I’m already involved in too many things, and I’m in no position to set up an organisation (No fixed abode.).
Another quack.. honestly given any progress like laura’s tumour decreasing 36% needs to be acknowleged. You are very positional and extreme in taring all progress. Why?
what about this quack who had no evidence and was also hounded inappropriately.
Ignaz Semmelweis
An engraved portrait of Semmelweis: a mustachioed, balding man in formal attire, pictured from the chest up.
Dr. Ignaz Semmelweis, aged 42 in 1860
pen sketch by Jenő Dopy.
Born July 1, 1818
Buda, Hungary
Died August 13, 1865 (aged 47)
Vienna, Austrian Empire (now Austria)
Nationality Hungarian
Fields Obstetrics
Known for Introducing hand disinfection standards, in obstetrical clinics, from 1847
Ignaz Philipp Semmelweis[Note 1] (July 1, 1818 – August 13, 1865) was a Hungarian physician now known as an early pioneer of antiseptic procedures. Described as the “savior of mothers”,[1] Semmelweis discovered that the incidence of puerperal fever could be drastically cut by the use of hand disinfection in obstetrical clinics.[1] Puerperal fever was common in mid-19th-century hospitals and often fatal, with mortality at 10%–35%. Semmelweis postulated the theory of washing with chlorinated lime solutions in 1847[1] while working in Vienna General Hospital’s First Obstetrical Clinic, where doctors’ wards had three times the mortality of midwives’ wards. He published a book of his findings in Etiology, Concept and Prophylaxis of Childbed Fever.
Despite various publications of results where hand-washing reduced mortality to below 1%, Semmelweis’s observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community. Some doctors were offended at the suggestion that they should wash their hands and Semmelweis could offer no acceptable scientific explanation for his findings. Semmelweis’s practice earned widespread acceptance only years after his death, when Louis Pasteur confirmed the germ theory. In 1865, Semmelweis was committed to an asylum, where he died of septicemia, at age 47.
You are forgetting that patients are not asking for your help? You are making this up for us is just as annoying as those who are trying to help. You are causing distress for me and I suspect many patients who wish the freedom to choice what they wish, without this harassment of fear of being bullied, yes bullied by you and your views. I find your interactions with laura distasteful and lacking in respectfully letting her make her choices and share the outcomes. I wish you would get on with your campaign and leave her and those who like to have choices vs what is only available here. Your hounding her with your ritious cause to protect people is inappropriate. If she come to you asking for help then this is fair enough but clearly she is not needing your interaction. I just came across all this yesterday and your galliant behaviour has distressed me greatly as someone who has benefited from alternate therapies greatly and that is my personal choice and if i share about it.. i do not want to be harassed if i decide to do something you can’t approve of! Being harassed for finding new solutions is not cool .. if someone says something they helped them , then that is so for them , if you can explain it scientifically or not.
Science is not truth and in fact our science changes all the time.. so i don’t really get why you are thinking interacting with someone as if you are protecting them when they are clearly improving in any way.. is being a guardian of patients as you seem to be positioning yourself .. i a offended by your position of accuse first .. where is your scientific evidence that all alternative treatments are quackery? Where is your research upon which you base that patients are being duped and need your protection? I understand you care , I understand you wish to do good, but honestly please bring a little consideration for the patients who are finding these things helpful. Yes we must raise the standards of what is available and make sure it is safe, but has anyone died over there that you can prove was due to these treatments? It is all very well not being able to replicate something or explain it.. but what evidence do you have that this is not working even just a little but. Having choices is the foundation of our society.. but please do this with dignity and respectfully.
Surely, If only one patient has any kind of progress in reduction of tumour let alone disappearance of a tumour that IS reality. There have been many things that we can not explain scientifically in history. What arrogance to assume what you can’t explain that has in reality produced what the scientists can not understand. If we can not treat these patients with anything and they tried it the scientific way all that is available and get some kind of result at all… i mean at all.. scientific or not , we should be celebrating it, encouraging exploration vs accusing that person of quackery. I think you need to get a grip and a sense of balance.
Why would the FDA allow a trial if it harmed people? Not challenge the movie and actually approve the trial to phase 111? We need to get a grip here. This pressure you are creating for me and other patients is distressing.. i don’t need your help, i want to see the outcome and then decide. Just because something can not be explained by the human mind does it mean it is not so. We used to think the world was flat and harrassed the person who discovered it was not, we could not explain the universe. We are still learning to adjust our perspective as the hadron collider reveals what we could not have known or see. So please, bring some grace back here and respect patients choices. In this case where there is an official trial approved by the US government, what basis are you feeling the need to run it down and not wait till the end of the trial to review the data by those who are in the scientific realm
The cost to the NHS for our exhisting treatments is probably the same maybe more.. given the repeating pattern till death.. i just don’t get what this is about for you and Rhs. So the clinic stood up for themselves and were what in the uk is inappropriately heavy handed and maybe even inappropriate.. but in the US this is a way of life and we in the UK are adopting the sue first nature vs dignified dialogue and resolve that we founded this country upon. I think you have taken this too far. I think egos are involved here and whilst i support anything that helps patients .. i honestly think you are making life more difficult for those who are having great success in using alternate treatments to be heard. I would not be here if it was not for stepping outside of the nhs and standard treatments. Why is only the rich can access more effective treatments privately? That is more interesting. There is much available for patients that is so out of reach by those who skim money off the top of the nhs because they are approved and make this impossible to have. I know people who had a vertebrae sculpted from their hip bone to replace a worn torn one.. this was not mentioned to them until they said ‘what can be done privately’. This is what is not ok and people are having to pay the same kind of fees for. Private medicine approved or not does cost this kind of money. All pioneering things cost money. People spend £100,000 on a new car? let people have the peace of mind to seek and explore things if they choose to without being harrassed if they share they found something that is pioneering.. this is their choice. I want protection from you and your communities feelings that you have to find bad things in anything you can’t explain. Science is not the truth it is only us catching up in understanding what has not been explained before. If Einstein adopted this approach he would not have been able to prove it as he would have been looking from the limitations of his on limited abiilty to see what can only be seen from his view.. i think that in letting go of what he knew and being willing to accept he did not know everything or even could not prove it … was the access to humanity being able to expand and progress.
I hope we do not make laura’s life any more stressed than it needs to be just because we have a point of view about something she chose to try given her prognosis was and did everything available here. I understand in looking at the clinic in question they offer other treatments approved by the fda and available to people in the us on insurance… so how come this is not being included in the views shared? I really don’t understand what is going on here. , please be careful in your zest for helping people.. that we don’t suppress something that is progressive and being monitored by a government. If this was not in fda trials i could understand your aggressive position .. it just makes no sense. i appreciate your commitment but not the way you are doing this. seems to me that the clinic mess up in protecting itself and because this was a gallant passionate and highly intelligent school boy which i celebrate such ability to present a case and a view.. is fueled some kind of over reaction?
but can you please take better care of the patients who wish to explore these avenues and wait to see what happens on the official trial and the scientific actual data at the end and use something based upon research that you so clearly advocate? I hope so as reading your communities interactions with laura is stressful to watch. whilst i know both have a good heart we need to find grace.
take care
a cancer patient
There are many issues logically and factually with your post a cancer patient. But addressing them is not appropriate to this thread.
Thus we will have to agree to disagree on these matters and I would ask other commenters on this post to stay on topic and address simply the issues raised above.
I’d just like to add that this site has not made a point of discussing the situations of individual patients. Our articles have made every attempt to stick to discussion of the broad medical claims, not those specific to named patients.
It’s true that the first article, “False Hope”, initially discussed an individual case, but we removed names and details from the piece following a reasonsable (I feel) request from the family on the day after its publication.
The vast majority of our discussion of Dr Burzynski has been focussed on the clinic’s claims and the science.
In the case of this article, for example, the only mention of a named case comes in the comment above, which chastises us for picking on individuals! You can see how that might be frustrating.
It’s all about stomping anyone that is doing anything innovative right?
Who cares if people have been cured using ANTINEOPLASTONS – who cares if anyone is ever cured by cancer right? It’s all about people dying –
nothing is better than ignoring the USA gov’t data on antineoplastons, and then saying “screw those cancer folks” – “let ‘em die!” people should only be poisoned with chemo & radiation and THEN die, the people do not deserve these “Antineoplastons” – how dare they ask for non-toxic treatment and live – fuck them!
all who have cancer need to die like those on concentration camps like the dirty cancer-victims they are, and die from chemo, radiation and have their bodies cut apart.
we need to tell the world that they do not deserve an “Option” – let ‘em die!
Anyone that is cured by these urine “antineoplastons” they need to be shot! all of them!
America is NOT free – and anyone that thinks that they deserve an option of cancer treatment—especially if they choose antineoplastons—needs to be shot on site!
to death to all who refuse to choose chemo and radiation or surgery (except biopsies because then the burzynski clinic can analyze them) but after they do! BURN THE CANCER PATIENTS WHO RESIST!
all cancer patients must accept their poisoned induced death!
I LOVE THIS BLOG!
DIE CANCER PEOPLE WHO REFUSE CHEMO, RADIATION OR DISMEMBERMENT! TO HELL WITH YOU!
FINALLY A BLOG I CAN BELIEVE IN!
AMERICA, FUCK YEAH!
Lesmond, my old friend …. Cancer is awesome right? Ain’t it great when people get sliced up before they die – or better yet, they get injected with poison before they die? But the BEST is when they drop a friction’ atomic bomb on their breasts, LESMOND! You know you love it!
How DARE anyone request anything different, especially a treatment that isn’t urine (but everyone else thinks it is!) treatment and they get cued 30% of the time – WE MUST KILL THOSE PEOPLE ON SITE AS SOON AS THEY ARE CURED!
NO ONE WHO IS CURED (OR HAS A SPONTANEOUS REMISSION – which is 30% of the time with antineoplastons) THEY ALL NEED TO BE SENT TO THE OVENS FOR EVEN GETTING CURED!!!! FUCK THEM LESMOND – RIGHT!>???
anyone cancer-free wearing the “antineoplastons” badge needs to die!
YEAH!
OraclsGod, your comments are far more objectionable and offensive than anything that has been written above. No one has said any of the things that you appear to be attempting to sarcastically object to.
Those comments are unlikely to endear you to many people, and won’t make anyone accept what you are saying. If you have some evidence that we have overlooked, please feel free to share it.
Lesmond, Let’s begin the “antineoplastons survival death camp!”
if any and everyone ever cured using antineoplastons were killed by us, and anyone who understands how to administer the medicines were also cured…. chemo, radiation, and dismemberment will rule!
we can’t EVER allow anyone to either “think” they were cured of cancer in a non-toxic means, or be fooled by “spontaneous remission” – these people must DIE! ALL THOSE who are diagnosed with cancer should DIE! FUCK THEM!
LESMOND MY FRIEND, it will be like the old days in germany, but only harder, because he actually have to get biopsies – but wait! what about those who got biopsies and were cured by antineoplastons!
… I promise Lesmond, if that is you, I will spare you, and only burn, poison and slaughter the others that also have biopsies – I will sit in the gutter with my antineoplastons and share it with you….
but those other people – THEY DIE – DIE DIE DIE!
I LOVE YOU LESMOND!
I am SO sorry, “Endless Psych” – I promise you “Endless Psych” I will sit with you and Lesmond and share the antineoplastons – as the rest of the cancer people die under the fire, poison and dismemberment.
Endless Psych – you will be with me and Lesmond when we rule as cured antineoplastons folks as the rest of the world suffers in cancer misery!
Have I mentioned how much I love this blog yet?
OraclsGod: you’re disturbed. And an idiot.
I am neither a medic nor a lawyer, but I do have quite a bit of friendly contact with both here in France.
I’d love to help with setting up a French branch of such an organisation.
As well as cancer support groups, charities like AIDES might be interested in cooperation.
LESMOND, and ENDLESS – WE WILL BE THE ONLY CANCER-FREE PEOPLE ON EARTH ONCE WE STEAL ALL THE ANTINEOPALSTONS ON THE PLANET!!!!!
Can you believe anyone would ever question the cut, poison burn? of ANYONE gets out of line, and refuses the cut/poison/burn we KILL THEM!
(but we keep the antineoplastons to ourselves)
I LOVE THIS BLOG! I LOVE AMERICA!
Antartic-Ky TEAPOT!
Do you agree? All those who choose antineoplastons instead of surgery, chemo and radiation, they should die on site right?
While I am not usually a big fan of the banhammer, I think OracIsGod has earned a prize place in the bozo bin for outstanding services to douchebaggery.
Lesmond, I know you – and I know you don’t mean that – we go WAY back – let’s kill all those fucking cancer patient bastards who refuse the “standard treatment” – right? Remember when we used to kill those stage IV folks who tried to get Antineoplastons? C’mon Lesmond – don’t pretend you don’t know my brother!
I am ORAC, I AM GOD!
Anyone who choses “Antineoplastons” much meet the wrath of death. Any and everyone who has ever had cancer needs to be forced to undergo the KNIFE, the POISON, and the RADIATION!
How dare anyone “want” another option…. they need to die – we all know that if they choose “Antineoplastons” and live – our fences will fall, all hell will divide the planet and we will be forced to accept our fate!
And boys, Lesmond, Endless Physco-colon – we know we can’t allow cancer patients to live – especially at the hands of antineoplastons – if they do – we must answer to the lords – the Phrma lords…. and we all know what that means.
FOR THE LOVE OF ORAC WE CAN’T LET THIS HAPPEN!
ALL CANCER PATIENTS MUST DIE!
The 21st Floor has thus far never blocked or banned any commentator who did not appear to be a spambot. But may be about to make an exception.
We pride ourselves on allowing anyone to comment on our posts but clearly there are cases which test the bounds of good taste and decency.
If OracIsGod wishes to engage critically with the criticism of Burzynski they are free to do so. If OracIsGod wishes to discuss that they find the notion of a charity that casts users of alternative medicine in a victim role they are free to do so.
Indeed to address the second point, as it has been raised elsewhere. The aim of any information gathered or organisation founded would not be to campaign against alternative medicines but to inform and support those who have been taken in by unscrupulous and unregulated quacks. To put people in need in touch with those who might be able to help them. Be they counsellors, lawyers or qualified medical practitioners.
It would be designed and intended to help those who felt they needed it. Be they former patients, friends and relatives despairing that a loved one has been taken in or anyone else who feels they need support.
I fear such an endeavour would ultimately fail if it sought to recast all those who make as informed a choice they can about their choice of therapies or treatments as victims. So this is not the basis of this idea.
This idea is motivated by a desire to help those who might need it and offer support to those who don’t know where to turn.
Again I will request OracIsGod, be you a genuine supporter of alternative treatments or simply a good old fashioned troll, to engage sensibly and sensitively or regrettably we will have to dust off the ban hammer.
@Endless Psych,
I will be happy to support a charity of this kind in every way I can.
From a quick IP check it looks like OracIsGod is another sockpuppet of Eric Merola, director of “Burzynski: The Commercial”.
At least he’s been smart enough to change his email this time. Or maybe this is his room-mate using his computer. You never know!
@Lesmond # 1 December 2011 at 2:39 pm
On a similar, albeit not particularly useful note…
There are several ways to track a web-user aside from src IP (or X-fordarded-IP), each slightly more difficult to evade and apply:
i) use the cookie generated by the Wass-up plugin (you may want to consider a reverse-proxy and dump wass-up… it will slaughter your server on high-load);
i) a) use the native WP cookies;
ii) use the user agent-string;
iii) use javascript to pull browser-specific configs and combined with user-agent string for a higher-entropy identifier, e.g. language settings, window size, etc (don’t knock it, it can be exceedingly effective);
iv) use the browser’s caching scheme against it (we’re now into advanced territory but surprisingly hard to evade);
v) use a construct like “ever-cookies”, potentially unlawful though.
And yes, I am at a bit of a loose end at the moment.
I like this idea and think skeptics have ways in which they can help, both those who realize they have been conned and those who haven’t. One thing that struck me about some of the sad tales of people who saught expensive alternative treatment is the delay needed to raise funds, and how some families are left with regrets about not having been able to start treatment for their loved one sooner. These people should not have to feel that they failed when it’s a no-win situation already.
Being concerned about the effect of your actions on people is responsible and commendable.
UPDATE from Hope For Laura website~
Well Tuesday 29th November was the day of Laura’s MRI scan. As part of the clinical trial protocol Laura needs to have regular scans every 4-6 weeks so we can keep a very close eye on what is happening up there!….. I’ll cut to the chase…. We got a call and an email from the clinic tonight and here is the AMAZING RESULT:
Left frontal lobe mass 1.9cm x 1.7cm = 3.23cm (36% decrease in tumour since previous scan 6 weeks ago)
IMPRESSION: There is significant decrease in the size of the peripherally enhancing, cystic mass in the left frontal lobe with improvement in the intensity of enhancement noted as well……We are so pleased with this news, it is especially important as it has come at a time where a small minority of internet bloggers are trying to discredit the amazing work of Dr Burzynski and his medical team and at the same time hamper the fund raising efforts of not just Laura but a number of other patients from the UK who have decided to pursue the same treatment, some of them young children who like Laura have advanced aggressive Brain cancer and have been clearly told by their doctor that there are no other treatment options available for them….
http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day
Shontelle Hiron’s story (once given 6 weeks to live), She was told she had a 0.4% of living by her oncologists ,2000 Olympic torch carrier!
PART 1 (1994): http://www.facebook.com/photo.php?v=2375706886150
PART 2 (1995): http://www.facebook.com/photo.php?v=2375919211458
…
PART 3 (2000): http://www.facebook.com/photo.php?v=1613798398914
Note the facebook page is Shontelle Hiron’s so I imagine she is still alive.
It’s truly brilliant that these people are improving.
However this simply further highlights the scandal of Burzynskis poor research protocols and publication records. If his treatment really is what is helping these patients than he simply hasn’t shown that to a standard that any scientist or clinician outside the clinic can accept. This is truly a scandal. No one proclaiming a cure for cancer should morally or ethically be able to get away with not producing such evidence and by doing so, if this treatment works, sentencing many more patients to death.
If his treatment worked and he could prove it with science do you think the NHS and other healthcare providers in other countries wouldn’t provide it? They wouldn’t be able not to if there was a sound evidence base to provide it. Even if the clinics treatment does help Burzynski is still killing patients with his attitudes towards research and trials. Which in thirty years has produced no convincing evidence of a treatment effect for antineoplasteons.
As mentioned in another post CRUK are conducting trials into stratified and matched chemotherapies (which appears to be, going by some sources including the latest Texas Medical Board allegations) to be what Burzynski is attempting to do (asides from the antineoplasteons). Unfortunately not for brain cancers at present I believe but with more funding than perhaps this could become an option.
Again fantastic to hear the good news. But it is important to state that this is not simply a case of whether or not the treatment works. I have my doubts about it’s efficacy however far more important to my mind is the poor quality of research and his poor publication record should be a medical scandal.
Just to add to the above, I don’t think there is a skeptic, medic or researcher who wouldn’t love for Burzynskis treatment to work.
Unfortunately we have to currently apply the Scottish verdict: not proven.
Which leads us to worry about the practice of charging so much money to take part in trials and that the trials have taken so long. This is by no means standard practice in research.
I’m glad to hear there are improvements, that’s brilliant news! I hope it continues.
Unfortunately, we can’t draw conclusions from individual cases and testimonials. To do so would be submit to confirmation bias. The only way to reliably determine efficacy is to examine the data from properly conducted trials. Patients have been enrolled into (and paid for) more than 60 such trials over the years and none of the data has yet been made available in the peer-reviewed scientific literature, where it can be properly scrutinised. The charging of patients to take part in trials is bad enough (it’s EXTREMELY unusual to charge for experimental treatment, even in the US) but to then withhold the data. The only data from the trials that is available is in the form of conference abstracts (for posters or presentations), and these are next to useless. And they also contain some curious claims – for example, the most recent abstract claims “complete response” in 23% of the patients based on MRI, but 5 year survival of only 8%. Which is curious. We need to see the proper data and methodology to make sense of a result like that. But Burzynski hasn’t published the proper data and methodology in the peer reviewed literature.
I hope it works, I really, really do. But that’s been 20 odd years now, with no clinical trial data published in the proper channels, despite more than 60 trial registrations bearing Burzynski’s name. Let’s get the data out and see once and for all.
A great idea – maybe a way in which Sense About Science could extend its good work? They are set up to reach the public directly, as well as via journalists I believe. I will help if can.
Anecdotal evidence is all very heartwarming, but insifficient for approval as an accepted treatment I’m afraid, now what worries me is that if all the claims of efficacy are true, then why hasn’t the good Dr made it widely available? The only reason I can think is that if he keeps it to himself, and carries on charging for trials (via a back door method.) he can charge whatever he wants.
Ethically it would be better if the trials of the last 20 years are published and peer reviewed, the the procedure made available worldwide, and that could actually lead to Dr Burzynski making more money from licencing agreements, which again begs the question, why his he trying to keep outside scrutiny away from his miracle cure?
Regarding this post here I think it would be worthwhile to (at the least) investigate what sort of support services exist for those who have been harmed by unproven and quack treatments.
So I am looking to find volunteers to help crowd source information on what services are available currently, what legislation may exist for people taken in by health/medical fraud and what recourse they might be able to take and info on how people can help stop others being taken in.
The last part should be fairly easy for us as it involves things like ASA complaints, trading standards etc. and perhaps advice on blogging experiences. The First two parts are perhaps more difficult.
I’m basically posting this to ask folks to help crowd source info on services that are available and perhaps help in the collation of this info in order to provide a resource guide (that can be used by skeptics when they encounter folk taken in or by those taken in themselves) that we would host originally on the twenty-first floor but look into hosting it elsewhere also.
If anyone can help or has any leads comment below or send me an email endless_psych@thetwentyfirstfloor.com
Hi there
Keir, I’m sure you’ve seen this blog (I think you tweeted it)
Have you thought of getting in touch with Storm Lily.
http://kickingadyingman.wordpress.com/2011/12/01/counting-blessings/#comment-20
This is a great post. To reiterate what Keir has already said, we are criticising the Burzynski clinic – not its patients.
I hope some good comes from this and I will do what I can to help.
I think we should call this charity Jemima after the famous duck.
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I’d been meaning to put my name down for this -it’s an excellent idea. I’d be happy to help however I can, although I can’t promise a great deal of time.