Warning over online "miracle cures".

Discussion in 'General Health & Wellness' started by gapsych, Sep 21, 2009.

  1. gapsych

    gapsych New Member

    I found the following article very informative. See below where you can access the pamphlet.



    By Tom Rayner, PA

    Monday, 10 November 2008

    Patients should not place "false hope" in promises made by untested internet miracle cures, medical experts warned today.

    Independent medical charity Sense About Science said many vulnerable patients are being duped by "surreptitious promotion and misleading stories" online and spending thousands of pounds on drugs that might be nothing more than snake oil.

    The charity said it is worried about "the emotional and financial costs of over-hyped treatment claims that sell false hope".

    Tracey Brown, managing director of Sense About Science, said: "We've been contacted by so many people exhausted from the pressure they feel to try advertised treatments, dietary regimes and exercises.

    "One person told us how the last years of his wife's life were spent endlessly pursuing new treatments, from goats blood serums to unlicensed stem cell treatments abroad, all to no avail."

    To assist, the charity has published a guide called I've Got Nothing to Lose by Trying It that explains how to tell the beneficial drugs from the bogus.

    The guide has received the backing of the Royal College of GPs whose vice-chairman, Dr Clare Gerada, said: "This guide provides a wealth of sensible information to patients and the public.

    "It goes a long way to taking the mystery out of medicine and I would recommend it to patients as a common-sense read."

    Patients suffering from Parkinson's disease, multiple sclerosis and motor neurone disease are particularly targeted.

    Dr Kieran Breen, director of research with the Parkinson's Disease Society, explained how patients are prepared to try anything to ease their suffering.

    He said: "It can be tempting to believe personal stories of miracle cures, but only by using tried and tested methods can we move forward and provide people with Parkinson's with the best available advice and treatments."

    The campaign has also secured the political support of Liberal Democrat MP Phil Willis, who is chairman of the Innovation, Universities, Science and Skills Select Committee.

    The politician said: "The cruellest deception for a patient with a chronic illness is the promise of a cure based on empty hope, not evidence.

    "The publication of I've Got Nothing to Lose by Trying It is an inspired attempt to empower patients to evaluate so-called 'miracle cures' with evidence-based advice."

    :: The guide can be downloaded from http://www.senseaboutscience.org.uk
  2. gapsych

    gapsych New Member

    9/21/09 9:36 PM Desperation
    It is hard not to get lost in desperation. When you are suffering, you just get to the point where you'll do anything to make it stop. But when you have a chronic illness that has no cure, there is no miracle out there. If it sounds too good to be true, it usually is. And as we've seen so many times, what works for one person never seems to work for another. We each have to find our own balance.

    9/21/09 9:52 PM TeaBisqit

    You are absolutely right and that is why I posted this.

    I think we can all identify with the horrid feeling of desperation. We are only human.

    The thought of people profiting from of our illness, is lower than low.

    The ones who actually believe in what they are pedaling are the ones that scare me.


    9/21/09 10:11 PM re: cures, etc.

    Sometimes I feel like people look down on me because I am not "doing" anything to get well, aside from the basics. I feel that for me there is no protocol that will help honestly and I don't want to waste my money and effort. I had a remission and I truly believe that if I get well it is all a matter of time and not some magical cure. This doesn't mean that I think people should not engage in protocols and things that could help them in some way, it is just that in my experience with my subset of CFS I've discovered these things aren't for me. I agree that there is a lot of money being wasted in many cases.

    9/21/09 10:23 PM isiselixir

    Actually, I think it sounds like you have done a lot. You have found what works best for you.

    Knowledge is power and helps us become better consumers.

    What people choose to do with this information, is up to them.


    [This Message was Edited on 09/21/2009]
  3. gapsych

    gapsych New Member

    Gotcha!! ;0
  4. harmonypie

    harmonypie New Member

    Tom, Just because there has never been cures doesn't mean we ever give up.. My nephew suffered unmercifully with lupus for 35 years. He said the only theing he had to look forward to was getting worse. Then he tried alkaline water form enagic machine 501 and i n two months he sais he can't even remember feeling so well. So many improvements. And it was right in front of his face..... Novena
  5. gapsych

    gapsych New Member

    No, we can never give up hope. However, if you read my original post you will see that I am talking about the kind of treatment you are advocating.

    If it sounds too good to be true, it probably is.

    But hey, what is $6,000 if it is going to "cure" you!!

    If you selling these, you must be making a lot of profit.[This Message was Edited on 10/07/2009]