If we think we live in a land of free speech and information, we are truly wrong, or perhaps it depends what you want to speak about.
It seems that unfair, misleading and down right untruths are allowed and that these can be delivered by a person/persons hiding behind a pseudonym.
They can call for information to be removed or seek to have views and opinions squashed, which in turn prevents information and choice being available to the public and still not identify themselves.
In October 2012, Cichealth has planned a convention that will bring together various therapies and techniques that are currently being used and developed that may be able to help support healthy tissue
Clearly according to the 1939 Cancer Act, we are not allowed to say that any therapy can treat a person for cancer or provide a cure, but no one can promise a cure, be it allopathic medicine or a more complementary/naturopathic approach.
Our speakers at the convention have attracted the attention of a most insidious website that calls itself the Quackometer. I will give you the full route to find it as we at Cichealth have nothing to hide and are more than happy for any reader to view the ridiculous writings of the 'Le canard noir'
www.quackometer.net
The convention would welcome the participation of a representative from the Quackometer site if they could offer something constructive and agree to appear as themselves or may be they choose to hide.
I find it ludicrous that any one should want to hide behind a pseudonym, let alone one as ridiculous as 'Le canard noir' oh please!!
Still, some seem to have free speech and can write whatever without revealing who they are. They can slate professionals and never reveal themselves, yet the public are not allowed to have anyone aim treatments at them, with any indication that those treatments may help in the treatment of cancer.
Are we to assume the public are too stupid to discern a path way for themselves or perhaps seek to further their own knowledge on treatments that are available. Interesting appraisal on the public in general.
Does a law protect and if so who? Is it the 'stupid' public or the interests of the NHS and all that it entails, drug companies and other vested financial interests.
Cancer is a vast industry world wide, So many jobs depend on it and it alone! From those that have specialised in it as a career, the drug companies with there new patents on yet another drug for it all the way to the huge charity organisations that fund raise for the research and supporting of the sufferers.
It must bring in the highest amount of money from charity than any other illness and that is because it is an illness with such fear around it. That is a fact that is played on to extract money from the public to help in the research into cancer, yet where are the results for the vast sums that the public so generously poor into it?
The cancer act is obviously there to protect the public at vulnerable times, if we are to assume that the public at large can not be objective, yet there are no laws that say you can not prey on people for their money with such emotive tactics.
I found it disgusting that while my sister was in hospital on a cancer ward, that one of the cancer charities box came round. For a donation, you could have a daffodil pin or pink ribbon etc etc.
If you are not allowed to inform the public what is available that may help in the treatment of disease, then should it be allowed that money tins are rattled under the noses of those suffering with the very disease you are collecting for or play on the emotions of the relatives at that time?
The answer to the 'cure' of cancer is not singular. It could be assumed that is is as different as there are people that contract it.
Is the word 'cure' too positive? Aiming for a cure? Far too positive it seems. We are only allowed to aim for remission! Well that's great! I like to think if I was struck with this problem, I would be aiming for a cure and not a remission, but then there is no money in curing cancer or any disease. Money in ill health but not in health!
Who makes the most money in this? Well we don't need to look beyond drug companies for the answer to that and we all know how desperate they can be.
Great play is made of the money that the so called 'alternative' treatments charge, but is that true? I know many excellent therapists that most certainly do not charge excessively for their skills and very often in treating cancer either charge less or give their time voluntarily.
I don't think drug companies are handing over free drugs or oncologists not taking their salaries.
In life we should be allowed to be informed of what ever is available and as long as nothing is deemed as a cure then let the information be out there and debated/discussed and questioned by the public.
I just happen to believe that we the public are not silly and can be informed of things and then make considered judgements. Better to know what may be available and how it may benefit before a problem in the health arises, they may even discover how to prevent illness such as potentially serious ones in the first place.
Why is cancer so different to other ills in terms of the law. Perhaps its because the NHS make it so fear based that they themselves make the sufferer vulnerable rather than empowered. It is easier to get a patient to comply if they are coming from a base of fear rather than one of taking control.
It does seem that the public are denied choice under this act though, as how would your everyday person in the street know what is out there if other methods are not allowed to be given an opportunity to be heard
Cichealth make no claim that any of the treatments being discussed are a cure for treating any person for cancer as the act states, neither do we say they are a cure in themselves.
It is an opportunity to hear and debate the treatments and nothing more.
That must surely be allowed in a country that prides itself on free speech and education.
The speakers are of the highest calibre and all professionals, so lets respect that and give all the opportunity to hear views.
If you can be bothered to visit the Quackometer site, and I do urge you to, as you will no doubt see the ridiculous way information can become misinformation by what I'm sure the author considers himself to be skilful in.
Patricia Peat has given an invitation to her critics to go and speak with her, but of course that may reveal the truth and clearly Quackometer are not so keen on that.
Bill Bradford has most certainly never claimed that Meditherm's thermal imaging is a replacement for mammography and I would like to see where Le canard noir can prove otherwise from Bill.
Re Steve Hickey, It is easy to throw suspicion on to a speaker by claiming that there is no record of that person working at a particular organisation...pity they don't add that they did, but have moved on to other areas as we all do in our work. Some how it doesn't have the same sinister 'suggesting of a lie' about it.
I could go through all our speakers and correct the misinformation that this Quackometer site has deemed to write, but given all our speakers are of the utmost professional being, they really do not need me to do that. Their work speaks for them.
So Le canard noir, cheap tricks in your writings are just that and our far from stupid members of the public see right through them.
For more information on the convention www.cichealth.org.uk click on 'Cancer Convention'
Please visit the Quackometer site and as you do keep a large pinch of salt handy!
Sarah - you are deeply confused on many levels. Firstly, unlike you, I give my full name on every page of my website. I am not anonymous.
ReplyDeleteYou accuse me of speaking misinformation about your conference and speakers - and yrt you do not gibe one single example.
If I am to take you seriously, would you care to do that? And correct your assertions that I am anonymous?
I think that your comments are indicative of your confusion as i have stated 2 examples where you sited misinformation and of course one has to stop somewhere and i choose really that our speakers credentials are of the highest order and they will all speak for themselves.
ReplyDeleteAs for the the pseudonym, well why bother with one if you are the site creator??? I guess that is just an oddity then for you. Given the subject matter you have elected to deal with, i just find that slightly immature then.
Your motivation behind your negativity on the conference is intriguing, and so very unscientific. The purpose of such debates is to look for the truth and not decide beforehand what that may be and seek only to write with a view that simply confirms your own beliefs.
Your specific interests and back ground on the way that you declare such vitriol on those you disagree with may be having a undue effect on your own individual learning and growth.
I take the stand that it is better to hear free speech and use the intelligence i was blessed with to ask and enquire with an open mind before dismissing anything and considering developments in all areas of medicine.
Sarah
ReplyDeleteI have many concerns about your conference. I suggest it would be in everyone's best interest to take them seriously.
I fear that many of your speakers are promoting unproven or nonsensical treatments and diagnostic tests for cancer. Leaving aside the legality of this, I believe you have an ethical need, as organiser of the conference, to ensure anyone visiting does not go away misled. What steps have you taken to ensure this does not happen?
When you have speakers, who represent clear commercial conflicts of interest about their subject matter, with no counterbalance to their claims, then you risk misleading people. When the claims are far from the accepted mainstream, you are very likely to be promoting quackery. This is something that I hope you would take seriously.
The worst fear is that such fringe claims prey on people's desperation. Few are in a position to critically appraise such claims and they might come to harm, both financially and bodily, if they embark on unvalidated and doubtful treatments.
You must be aware of the many criticisms leveled against Burzynski, for example, where his 30 years of 'trials' have not resulted in substantive peer reviewed publications. Enrolling people in trials and then not publishing is a betrayal of their trust - at the very least. Burzynski is not a research academic with great credentials. He is a lone maverick (at best) who makes a great deal of money from orphaned chemo drugs at vastly inflated prices, anti-aging skin creams and vitamin pills.
Promoting thermal breast screening is also very problematic. Let me remind you what is said on your facebook page "Mr Bill Bradford, our local representative of Meditherm will talk about and demonstrate their Digital Infrared Thermal Imaging machine which detects subtle physiological changes and can be used to help flag up changes in breast tissue and other areas, that may need further investigation. It is non-invasive and painless - no contact with the body and involves no radiation, so there are no concerns about damage to the tissue in an effort to detect disease!"
Would an average reader think that you were promoting this technique as an alternative to mammography? There is a real risk there. People paying such a clinic privately for such a scan risk being frightened by overinterpreted results from people without medical qualifications. That again, is an ethical disaster.
We obviously disagree on what might be convincing credentials here. Non-academics with degrees unrelated to the subjects they are talking about might raise re flags. Of course, they might still be right- but it is wrong to introduce them as authorities on the basis of academic credentials when they have no relevance.
If my words come across as vitriolic (which is a strong word), I hope you see them in the light of a concern that people, at their darkest hour, may be being misinformed by people with deeply dangerous and deluded ideas. Free speech also carries responsibilities.
Are you sure you are not shouting 'Fire' in a crowded theatre?
Sarah, i won't address all of your points as others already have. Your reply on the Quackometer site started quite admirably and i appreciated your sensible style of writing whilst obviously staying true to your beliefs. Then it descended into conspiracy theories about 'Big Pharma' so to speak, drugs companies making money etc, and I was suitably aggravated that your once sensible and well structured reply had turned into something, which sadly may attract ridicule from some.
ReplyDelete1.I would like to query/address a few of your points
1. 'Interestingly i treat many people with scientific backgrounds and the one thing true scientists are open to is research and an awareness to keep an open mind as that is the only way true progress is made. Many in our history who made great discoveries were at first thought of as foolish, only to be later proved right'
Absolutely, as a scientist i like to think i have an open mind and i have done a lot of reading of both scientific publications and mainstream books regarding various claims of 'natural therapy'. It is a fascinating field no doubt, sadly littered by a lot of people wanting to make money out of 'treatments' for which they have no proof. This does not mean there are not diamonds in the rough, i agree. However, when all of these 'pioneers' who were originally doubted and ridiculed about their ideas were around, the scientific method was far less developed than it was now. There was no or limited peer review, and limited communication between scientists, due essentially to lack of phones and email. Communication is the key to bringing other people round to your scientific hypotheses/theories, and this is now instantaneous with any person, anywhere in the world. My point is the process of proving your treatments work with evidence based medicine is now easy...if your treatments do indeed work. And as a side note, I can speak for most cancer research scientists here: If cancer was ‘cured’ tomorrow, I would happily give my job up and go and work somewhere else. Those of us who work for charities/in academia get paid peanuts for the level of education we have to attain – we could not give a damn about the ridiculous ‘conspiracy of cancer being an industry’.
'If you are not allowed to inform the public what is available that may help in the treatment of disease, then should it be allowed that money tins are rattled under the noses of those suffering with the very disease you are collecting for or play on the emotions of the relatives at that time?'
The big difference between these two situations you state is thus: 'Unproven treatments' whether natural or standard, but just unproven...are marketed on the fact that they may benefit the patient themselves, at that time where they are parting with their money. Most patients will be aware when giving money to a cancer research charity - that £1 they put in the box, is not going to help them - its going to help others to not go through what they are currently going through. Its more a selfless act, which yes may make people feel more empowered. I also strongly challenge your notion that current fundraising etc makes cancer patients feel 'vunerable' - have you seen the thousands of women (many cancer survivors) running the race for life?
‘It must bring in the highest amount of money from charity than any other illness and that is because it is an illness with such fear around it. That is a fact that is played on to extract money from the public to help in the research into cancer, yet where are the results for the vast sums that the public so generously poor into it?’
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DeleteWhere are the results? Are you serious? Well, as a 15 year survivor of childhood cancer, im sitting right here. Had I been born in the sixties or seventies instead of the eighties: I wouldn’t be here right now. Yes, different cancers are being ‘cured’/successfully treated at vastly different rates, some still have huge levels of mortality and its completely unacceptable – hence the need for continued research. However, in the 1950’s/1960’s pretty much everyone died of any type of cancer. Now the five year EFS (I dislike this term as much as you I guarantee it…) is over 50%. Its still crap, yes, we can’t save everyone, but we are trying our hardest to make it better.
Sarah: I do have one question for you if you will entertain it. I have no particular issues with any other speakers at your conference – many of them practise what I would describe ‘alternative medicine’ with no scientific basis…i.e. alkaline diet, but actually a few who appear to be legitimate scientists. Infact I have met one of them and had a good chat with him, he is in a similar field to me. I am a little surprised he has agreed to speak at the conference considering many of the other speakers do not appear to support the evidence-based medicine route, but will see him again in July and have a chat with him regarding it. As for the other speakers – well, each to their own, if cancer patients wish to follow an ‘alkaline diet’ during treatment, that’s up to them.
HOWEVER (my apologies for tangenting) you claim on your website about Dr. Burzynski:
‘from the Burzynski Institute, Houston, Texas, who will talk about his use of antineoplastons, which act as tumour suppressors. The FDA have given Dr Burzynski a license to synthesise these chemicals in his laboratory in Houston and they have shown some outstanding results. First used in the treatment of inoperable brain tumours in newborns, they are now used to treat other cancers as well with no harmful side effects.’
1. Are you willing to actually state on your website that his drugs act as tumour supressors, when there are no scientific studies supporting this fact (by him or anyone else).
2. Outstanding results is a subjective statement, which you do not backup in your blurb (aka. Curing 99% of glioma patients)…untrue by the way.
3. My biggest gripe. ‘No harmful side effects’. This is simply not true at all, and I believe if you leave this text on, you are highly highly irresponsible. The toxicity of antineoplastons has been linked to toxicity-linked fatalities by an FDA report.
You can find the information summarised here: http://www.chron.com/CDA/archives/archive.mpl?id=1998_3051685
The FDA noted that hypernatremia, or an excess of sodium in the blood, was a toxicity noted in 65 percent of the 404 patients participating in a study and it that it may have contributed to the deaths of at least seven patients.
Hypernatremia means serious water depletion, leading to central nervous system problems, coma and even death.
Regardless of whether his treatments work or not –it is incorrect to say ‘No harmful side effects’ particularly in newborns. Reports of death by kidney failure in children have been seen in his patients and the only reason we don’t know how many…is because he has so few publications.
I rest my case.