David, you berate me for not responding to this thread and then you completely ignore my posts. I have to conclude that you could not answer my questions.
Tbh, this information is completely obsolete, because the questions you then pose are unanswerable. Non questions, if you wish. Why not prove me wrong and provide what you think the answers are, as well as the data and logic behind these? (Incidentally, I did not spend long finding these links. For all I know, they could be as poor as the ones that Geoff has already exposed.)
The current system is our best shot to date of your ideal world. How then would the ideal world mean greater access to drugs? How then would the ideal world bring down prices? Btw, the current cost to bring a single new drug to market is in excess of $250m. This does not include the cost incurred by all the drugs that fail en route (and most new drugs fail).
The internet is truly incredible, but it is also a terrifying medium. Millions and millions of scarce resources are being spent on crazy theories because of tsunamis of lay opinion. Thousands of people choose to believe individual videos and self reported “miracle cures”, consequently making dreadful mistakes and spending ill-afforded funds on procedures, “cures” and treatments that have nothing but a placebo effect (if they are lucky). Millions of people chose to buy into the “click-through” garbage instead of the advice given to them by extremely well qualified medics and scientists.
I am all for discussing unlicensed treatments. I am utterly against the use of exaggerated claims in those discussions.
Finally, and not for the first time, it is disease PROGRESSION, not progress!
Yes, David, I am only responding to one of your points (as you call them). I see them as trying to create a smokescreen.
Shill site - let’s look at some of those ads:
Resolve Herpes - 50 day detox
Big Berkey Water-filters
Virtual Balancing - Quantum Prayer and Resonance System
Gabriel Method of weight loss
Global Healing Center
US Wellness Meats - Grass-fed Beef
Diabetes defeated in 6 weeks - with a cure your doctor has never heard of.
Like I said - click-through shill site. I got exactly one pop-up, and it was for computer memory. On a like-for-like basis, it would be cheaper to buy from Amazon. But, no Lloyds Bank, no broadband providers.
Thanks, Rebecca, that’s a very good example of how the internet is a mixed blessing for people with chronic ailments. It’s great for the sassy and switched on, but it’s an awfully dangerous place for people made frightened and vulnerable by their health problems.
Sorry out today but I will return to speak to my loyal fan base again tomorrow. I note so far no one has given a number for the people given Tysabri in the UK or a number for those given any licensed drug.
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.
David you wanted to know how many in the uk where on Tysabri this is the info I got
As of September 2011 there were 92,200 world wide and as of December 2011 there where 193 cases of PML no cases of PML in the UK
And as of 3 or4 months ago there were an estimated 1000 on Tysabri in the UK Charing Cross London is the biggest prescriber with Newcastle RVI second there are 127 of us and growing on The Uk Tysabri users page on Facebook.
Hold on there, David - you were the one who cited the NASA report as evidence of a treatment that was being hidden.
It was not about magnetic therapy, but it was about the growth effects of pulsed magnetic fields on one particular cell type, grown in laboratory conditions.
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.
As a lay person I have to accept the NASA scientists opinion that this lab work is sufficient to suggest that Sandyk work has some relevance to MS, because they say it does. If you look into the other work done into calcification then there is other published work to suggest it may be relevant to MS. The connection being that calcification may be causing a lack of neurotransmitters to be generated thus causing some of the symptoms of MS. If you wish I will look out the specific references to Sandyk’s published work. I do try to understand this stuff but in general have to rely on the conclusions drawn in these articles, starting on page 26 in the case of the NASA report.
The point here is that there is another potential treatment option with some scientific evidence that it can significantly reverse MS symptomatically far better that Tysabri/LDN/ treatment of CCSVI or anything else I am aware of, hence my interest.
So what will happen, well my guess is it will sit in the medical literature much like CCSVI did for years until some one who has qualification in medicine and physics with a personal interest such as sick wife digs it up and works it all out from the literature.
So again something that may have significant benefit to people with MS just sits in the medical literature.
Thanks that is about the number I thought it would be.
So if we take the decision for people diagnosed with MS have then Tysabri is the only licence drug proven to licensing standard to slow the progress of MS.
There are other licensed options which are proven to reduce relapse rates and other licensed treatment for various symptoms. Gilenia of course has some evidence to support reduction of disease progression but sits awaiting a NICE decision
If we take the 1000 figure on Tysabri that equates to 1% of the estimated 100000 diagnosed with MS in the UK. So if the 99% who can not access it for one of the many reasons then they have either to accept a licensed treatment with no evidence that it will stop disease progression or look at some other non licensed treatment.
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.
That then set the scene for why people diagnosed with MS seek treatment outside evidence based medicine.
We then come to what is suitable evidence for such choices.
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. At least the lack of blood flow can be relatively simply be diagnosed to see if that issue is relevant then a relatively low risk option of treatment which regrettably at present looks as though it will need repeating from time to time.
You then come to a host of other alternate solutions that seem to be very safe but need to be tried to see if personal benefit is achieved.
That is the principle problem I see with evidence based medicine currently available for the treatment of MS. If you want to slow disability progression then Tysabri is currently the only licensed evidence based solution and that is unavailable to 99% of people diagnosed with MS.
Yes, I do see other problems with evidence based medicine and I have listed some of my concerns but bottom line even if none of those problems existed it is still not currently available to most people diagnosed with MS in the UK.
That is in no way intended to criticise people with MS who have been offered the licensed treatments and chosen to accept them.
Read the posts David. Surely that is not beyond you? Oh, sorry, I forgot: based on past history it is indeed too difficult - you are blind to things that challenge your bigotry.
[quote=“Rebecca85”]
I know people with Crohn’s that are in danger of losing their life, and they refuse to take medicine and insist they know someone who can cure them with diet. It might ave worked for them, but not everyone will benefit, and the stakes are too high. . [/quote]
I have an example of what Rebecca has said.
In the last year of my (late) son’s life, he was introduced to someone who claimed experience in “the healing power of crystals”. He had this magic box where one plugged it into the mains, held the two handles at the end of a lead that came from it, and it would put a lot of diseases into remission (including lung cancer - my son’s condition). He generously allowed my son to borrow it.
Being somewhat inquisitive, I took the opportunity to open the box when my son was out. Oh, surprise, surprise, the lead from the two handles was connected to nothing whatever inside the box (the mains input went to one side of a transformer, with nothing connected to the other).
The person who introduced my son to the charlatan was undoubtedly sincere, and I know she was terribly upset when he died, but what of the man himself? No doubt, if the cancer had gone into spontaneous remission, or the chemo- and radio- therapy had produced a longer effect, there would have been a claim that the magic box was responsible. One of the hardest things for me was having to stay silent during the period that my son believed that he was getting some benefit. When he died, there was some panic to recover the box and return it to the charlatan (no doubt to prevent his being exposed).
Just another reason to require adequate scientific proof for any treatment.
I fully accept there are some charlatans around, I have already said that the NASA report is being used to sell devises that are possibly useless.
I agree that in an ideal world every treatment would evidence based with clinical trials followed by long term follow up of clinical trials.
However so far there is only one treatment proven to licensing standards to slow the progress of MS and that is available to only 1% of people in the UK diagnosed with MS and clearly that does need long to follow up to see what its long term clinical benefits ,good and bad.
When we however look at the solid proof even for licensed treatments however there is much evidence that some of the important data is not released.
Most people with MS need to consider some other treatment if they want to slow up, stop or reverse their MS
LDN is one supported by many doctors discovered by conventional medical research that might slow or stop MS disease progress. Have you actually been to one of the medical conferences that you call pseudo conferences? There are others which you also seem to want to rubbish, why? Why do you not take a look at the evidence that is available if you really want to help people with MS?
People have signed petitions presented to the Scottish petition committee achieved a debate in parliament about LDN and I have not done any of that organisation. No one is listening to these people. Why?
That 1% of people that are on Tysabri there are a lot and I know of a few personally have been offered or wouldn’t take Tysabri if offered to them not everyone diagnosed with MS would risk it and thank God they can cope with there MS without it but people like me who are agressive rrms don’t really have a choice well they do they can go down the route of trying diets and LDN and I’m glad I have friends who’ve tried those routes and told me when I was talking to them about what I could to do to try and slow the relapse rate I was having.
All of them told me to try Tysabri they wished they had that choice it was to late for them now and I’m glad I have friends like that I had to beg my neuro to let me try Tysabri it was only new and there was only 1 or 2 people here in N.Ireland on it so he sent me for an MRI which showed my MS was very active that was July 2008 and i started Tysabri in August 2008 and since then my MS has been stable even having improvements I can feel them but its nice to see them in black and white on an MRI image.
I know of a young 40 year old woman that was told by my neuro that her MS was needing Tysabri she was on Rebif and came of it cause of listen to people tell her drugs where bad for you started following diets and juiceing and LDN I could see her getting worse everytime I seen her but she wouldn’t go for the Tysabri she said such and such said this works and there doing well but they hadn’t highly aggressive RRMS but believe me if the neuro says you need Tysabri take it it my have risks but its less then the risk of your MS getting you if your like that she didn’t take it and is now in a nursing home needing full time care she cant get Tysabri now cause her MS has now went to secondary progressive.
But Tysabri is now starting stage 3 trials for people with secondary progressive MS I really hope it shows it works for them to.
I’m going out for the day going to the gym and a bit of swimming that would have been impossible without Tysabri!
she cant get Tysabri now cause her MS has now went to secondary progressive.