I’ve been having a bit of fun, going through your responses and writing down some more questions for you.
Since you are obviously working hard to answer my existing questions, I thought it only fair to advise you of the scale of the task in advance. I look forward to your detailed responses. If they are not forthcoming I will have to assume that you were unable to answer them.
Btw, I notice yet again that you have ignored a response from someone for whom LDN did not work.
Your statements in black. My responses and questions in blue.
However we do have a basic problem with respect to clinical trial evidence in that clinical trials do tend to give markedly different results.
How would you suggest that we improve clinical trialling to improve reliability?
…I do not feel licensing is the appropriate route. Licencing should mean safe, absolutely safe is of course not an available option but at present it means nothing like safe. There should in my view be a separate category for proven with known risks.
Every single drug that is sold in the world today comes with risks. (Every single thing we put into our bodies, whether liquid, solid or gas, comes with risks!) Prescription meds come with detailed information leaflets which explain potential side effects. How are these side effects and risks uncovered and quantified? What is the acceptable level of side effect so that a drug might come into your “safe” category? How would you administrate this? How would this differ from how organisations such as NICE and the FDA undertake this?
However once a treatment is in widespread use and I think you could now say both LDN and CCSVI treatment fit into that category
How many people have undergone CCSVI treatment? How many people take LDN? How many people stay on LDN for more than one year? How many people stop using LDN within 3 years? What number counts as “widespread”?
it is the only way to get long term data anyway, you can not run 20 year double blind trials.
No, it is not. Long term data can be acquired in a much more scientific way by following people from earlier trials. It is these kind of data that have revealed the significant benefits that the injectable DMDs deliver in terms of the reduction of both relapses and progression. How would you apply best practice research methods to the analysis of anecdotal evidence?
Who funds it well clearly you can not expect the drug indusry to fund anything except for commecial gain, however in this country why not the NHS, they always say they are short of money why will they never investigate cheap treatments.
It costs $250m to bring a new drug to market. What proportion of the NHS’s total budget does this account for? Which parts of the NHS’s current responsibilities would you cut to pay for this? Which diseases would you prioritise for this expenditure? Why?
If we assume that the NHS only trials drugs that are already known to be safe (so they can bypass some of the earlier phases), how much would it cost them to establish the efficacy of just one drug? What level of evidence is required by NICE to approve a drug? Multiply the two - what do you get?
In my view the current system favours the drug industry far more than the patient. There is nothing wrong with deriving profit from making people well but at present too many effective treatments are being ignored because of an over biased system in favour of the money.
How would you fund the research and development of new drugs? If the money is to come from government, what would you cut to free it up?
I am now just looking for evidenced based answers to sum up what percentage of people get treated by evidence based medicine in the UK with a chance of slowing disease progress?
What percentage of people get treated by evidence based medicine in the UK that have any chance of benefiting in some other way?
What precisely do you mean by evidence based medicine here? Do you mean drugs that have been properly trialled and approved by NICE? If yes, then please tell me what proportion of ALL drugs that are prescribed in the UK are approved for the use they are given. Now add the drugs for which there is full safety and efficacy data specific to the purpose for which they are prescribed, but that NICE has not approved. Now what “percentage of people get treated by evidence based medicine in the UK”? In fact, what percentage of the monies spent on medicine in the UK is not based on scientific evidence?
Just for your information here is the original link I posted to back up the claim I made which clearly states the basis of the evidence is overwhelming anecdotal evidence. If it was overwhelming in 2005 what will it be by now?
Not a question, an answer: overwhelming + more = overwhelming. Simple English really.
Saying something has seen the light of day because it is published in medical literature but not followed up rather reminds me of the opening lines from the hitchhikers guide to the universe, - It was published in a report locked in the basement of the planning office.
There are thousands of research papers published every year. Much of this is flawed; some of this is actually very poor and only manages to get published in third rate journals that almost no one reads. The vast majority of published studies are never followed up. The vast majority of published studies are never even cited by another researcher. In fact, most research is never even written up and submitted.
All studies are not equal. It takes many years of training and expertise to be able to tell the difference. How many of the links you have posted are robust citations David? Why are they better than the ones which contradict them?
Although I would like medical research to be funded by some mechanism separate from drug sales so that drug companies vitamin and herb providers and the like made reasonable profits from supplying their wares.
What profit margin do pharmaceutical companies make? What profit margin do homeopathic providers make? What profit margin does Dickson’s make on LDN?
Precisely what is your ideal route to market for prescription drugs (from research and development through to sales)?
I started this debate because every time I post anything about LDN I am criticised by making claims unsubstantiated by clinical trials.
The claims you make are not even supported by the people who supply LDN. They are not supported by any research paper (even small scale, pilot studies). They are not even supported by the links you post yourself. You do not make claims that are unsubstantiated by clinical trials. You make claims that are unsubstantiated by anything!
Where is the published evidence that LDN stops all disease progress? Where is the published evidence that LDN stops all relapses? Where is the published evidence that LDN is the best DMD?
I have already given you the date and magazine this worked was published in back in 1997. It relates to many more than one patient. Do you honestly think NASA would endorse the work of a doctor based on a report based on one patient?
You have provided no evidence that NASA have endorsed this work. You have showed that one person who works at NASA cited this study in support of his own work. This is very different to endorsement. So, in reply to your question, no, I do not think that NASA would endorse the work of a doctor based on a report based on one patient. Do you know of anything official from NASA overtly stating that they endorse this case study?
Medical research needs to be separated from product sales if we wish to address that issue.
How would you fund the research if the researcher could not recoup their costs in sales?
If I am going to consider a treatment licensed or not I am interested in two sources of information, what the patients say and what doctors say who have experience with that therapy say.
How do you find information about the people who have not continued treatment for whatever reason? How do you find information about why these people have discontinued treatment?
Why do you persistently ignore people who state that LDN has not worked for them?
However if people do make a decision to go for say LDN or CCSVI both of which are not currently recognised treatment for MS surely it is wrong that no one makes any official attempt to define how effective they are.
Perhaps you would like to summarise the CCSVI research being undertaken in Canada (and their findings to date)? Perhaps you would like to review the research presented at the ECTRIMS conference? Perhaps you would like to try and justify why the NHS should offer CCSVI treatment for MSers?
Oh and yes I do agree it is vital to do careful research into any treatment before excepting web based miracle cures. The only way I know to find the NASA report on magnetic therapy is to look for magnetic therapy devices on the web. They then use that report to justify cheap, possibly totally ineffective, devices that do not replicate what Rueven Sandyk did at all, which according to his hypothesis treats calcification of the pineal gland.
How would treating a consequence of neuropathy cure MS?
Not hidden, just not publicised and explored by evidence based medicine. NASA endorse the work of Professor Reuven Sandyk who used very small magnetic pulsing directed at the pineal gland with apparatus slightly different for men and women. The weakness of the NASA report is that whilst they endorsed his work they did not do that by repeating it but by basic lab work.
See above. Also, in what way and why would NASA follow up this study? What proportion of their budget would this use? Which personnel have an interest in neurological conditions? What has NASA’s budget been for each of the past ten years?
If you look into the other work done into calcification then there is other published work to suggest it may be relevant to MS.
Where are the references?
If we then look at the availability of the other licensed treatment availability in the UK then I doubt it much exceeds 10% of those diagnosed with MS. So in total some 10% maybe as much as 15% of people diagnosed with MS in the UK have no evidence based solution even offered to them.
What do you mean by “evidence based solution”? Are you excluding symptomatic relief? How could MSers be offered a cure before it is known? What proportion of drugs that are given to MSers for symptomatic relief have not been through clinical trials?
LDN it is the mammoth amount of anecdotal evidence for stopping or slowing MS relapses and progress. CCSVI seems to amount to the same type of evidence but less in numbers terms.
Others have covered the fact that anecdotal evidence is fatally flawed. What proportion of people who have had CCSVI treatment have found it to stop or slow MS relapses and progression? What proportion of people who have had CCSVI treatment have found it to do nothing, or even worse, make them worse? What proportion of MSers have CCSVI? What proportion of people with other neurological conditions have CCSVI? What proportion of healthy individuals have CCSVI?
Although that report may relate to a limited sample size he has had his work published related to a much larger sample. I did read it all up but in essence it is much more complicate than a layman can do and the guy practises in New York. It is written up in the Journal of Alternative and Complimentary Medicine in 1997
I accessed this paper. It is a review. It is not a study. How well does this support his hypothesis?
The other problem is for instance that treatment of CCSVI is available but not on the NHS
Why would the NHS offer CCSVI treatment? How would the NHS fund this? What services would you cut to pay for this?
sativex is another licensed product difficult to obtain on the NHS.
Sativex is not approved by NICE.
I personally do not think licensing is the appropriate route for known to have the potential to kill products
How would you better control access to such drugs?
We need to remember nothing works for everybody
LMAO! These words I will enjoy quoting to you as often as necessary for you to stop making outrageous claims about the efficacy of LDN.
Let’s round it down. It’s now 60-0. Your turn to shoot.
So good to see you again.