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The MS Society - New guide dispels myths of miracle cures

Posted: Mon Nov 10, 2008 5:12 am
by Nemotoday
10 Nov 2008

The MS Society has today joined forces with charitable trust Sense About Science as part of an initiative to highlight the importance of evidence-based information on new treatments and therapies.

A guide published today entitled ‘I’ve got nothing to lose by trying it’ explains how to tell the beneficial from the bogus in the face of miracle cure stories, new wonder-drugs and breakthrough therapies that are increasingly promoted in the media and elsewhere.

The leaflet, produced in conjunction with the Motor Neurone Disease Association, Alzheimer’s Society and Parkinson’s Disease Society, acts as a warning from experts to people with long-term incurable conditions about the emotional and financial costs of over-hyped treatment claims that sell false hope.

Lee Dunster, Head of Research at the MS Society, said: “The significance of giving people information that is credible, accurate and based on evidence cannot be underestimated and that is why the MS Society has been involved in this important initiative.”

Sense About Science is an independent organisation, which exists to promote good science and evidence for the public.

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 goat’s blood serums to unlicensed stem cell treatments abroad, all to no avail.

“This guide aims to help patients and their families to evaluate the treatment claims they are bombarded with.”

Download the guide below.

I've got nothing to lose by trying it.pdf (pdf 2922kb)
View 'I've got nothing to lose by trying it' ... sense.html

the money problem

Posted: Mon Nov 10, 2008 7:17 am
by notasperfectasyou
An unproven therapy may turn out to be effective; but we need scientific evidence before saying who it might help, what symptoms it might treat and what level of improvement, if any, it might bring.
I completely understand the thrust of this article. I spend a long time discerning my way through a lot of material years ago. I've read about diets, hyperbaric chambers, accupuncture and the list goes on. So I'm on board for the overall meaning of the article.


The therapy we have selected for Kim is working and as best as I can tell, it's fallen through a major crack in the rigorously described, rigorous method of trialing a drug. It's very hard to trial a drug therapy when there's little money to be made from a successful trial. Ken

Campaign to warn people against using untested remedies

Posted: Mon Nov 10, 2008 7:19 am
by Nemotoday

Looks like a bit of a push going on here.

Patient groups have launched a campaign to warn people against trying untested remedies.

Many of the organisations believe that misleading information on the internet is leading to an increase in the number of vulnerable people turning to alternative treatments that cost them a lot of money and do not work.

When Daniela Muallem was first diagnosed rheumatoid arthritis ten years ago conventional treatments were of limited help.

She was left exhausted and immobile for periods.

In desperation she turned to alternative treatments.

These included reflexology, applied kinesiology - which involved listening to the sound of vitamins she might be lacking - and seeing a nutritionist.

At the time she felt she had nothing to lose by trying them - but now she feels cheated.

"I started these things with huge hopes," she said.

"Week by week you are investing energy and time, but you are getting more and more demoralised because you are still not improving.

"Practitioners will often imply that it's sort of your fault - that if you had the right attitude it would be working."

It was a similar story for Jane Chippendale in Kent whose husband Mark has MS.

Goats' blood drug

Without a conventional treatment on offer they tried what was described as "a revolutionary new drug" - based on goats' blood.

It cost £180 per injection and Mark needed four injections each week.

At first it seemed to work and the couple actively campaigned to promote the drug to others - but then it stopped having an effect.

Jane said: "Me and my husband both felt that we weren't being honest with the public, because they were re-mortgaging their houses, cashing in life savings to afford the drug. We just felt it want right."

The charity Sense About Science has been tracking sites on the internet that offer hope to those without hope.

According to director, Tracey Brown, many sites offer treatments for conditions that conventional medicines cannot treat - and many are very expensive.

Among them are stem cell treatments for brain disorders.

But, according to Ms Brown there have been no clinical trials to show that these treatments are effective - or even safe.

'Vulnerable exploited'

She says it is often the vulnerable that are most exploited: "They go on-line looking for help at a time that they are most open to people making all sorts of suggestions.

"And there is a willing army of people ready to take their cash and offer them the promise of a cure which, if it was out there, scientists would be queuing up to be working on."

Patient groups have become concerned about the lack of regulation of health claims, especially on web sites.

Lee Dunstan, who speaks on the issue for the MS Society, said: "There is really deregulation on the internet.

"People can sit in the comfort of their homes and decide what it is that they want to buy and purchase it at the click of a button.

"There are a lot of companies out there that are making significant amounts of money on nothing more than just a promise."

Posted: Mon Nov 10, 2008 8:21 am
by robbie
The thing with trying different things is you don't know for sure if it's working. ms can make a fool of your beliefs and expectations because of the way it changes on its own giving you false hope that you are doing something right. Ms takes so much your pocket book shouldn’t be one of them.But then again whats money without your health.


Posted: Mon Nov 10, 2008 9:28 am
by notasperfectasyou
Woman in the video said:
"But the reality is that most of those things don't work for most people and the energy and time that you spend and the efforts and the feeling of failure is something I really don't want to deal with again."
how about this:

"I lost money in the stock market and the feeling of failure is something I don't want to deal with again"


"A girl broke up with me and the feeling of failure is something I don't want to deal with again"


"I didn't pass my math class and the feeling of failure is something I don't want to deal with again"

First, it's about ownership. Too many of us, including Kim and I, take stuff because someone said it helped them. Meaning, all the info we have is that it helped someone else. Like, Evening Primrose Oil. I read a book about it and bought it for Kim. I'm guilty.

But, Evening Primrose oil is cheap, not dangerous. I have no problems with the majority of supplements folks take for these reasons.

Antoher issue is practitioners of alternative medicine making money from your hopes. This is another variant and still subject to ownership issues. But, its harder to combat since you likely chose to go see the therapist and therefore you were primed to be more likely to accept what they were telling you. This is not so cheap but not so dangerous.

Ownership is the key word. Check out the thing you are embarking on. Checking it out means more than chatting with others who have had success with the concept. Check out journals, read professionally published articles, read enough of the science to see if there is genuine logic to the idea. See what others have to say against the idea. Gather info, as I hope you would before spending thousands of dollars on a new car. You would read consumer magazines, wouldn't you? You would read car and driver reviews, wouldn't you? You would test drive dozens of cars and review the histories of other similar models, wouldn't you? You wouldn't just walk in a showroom and buy the one you like, would you? If you would, then --- the BBC concept applies to you and you should not do stuff unless it's approved. You must have sufficient discernment to work an alternative path.

Yes, picking stocks is not easy, but if it was impossible then no one would be doing it, right? So there must be levels of applied discernemnt at play and if you can't discern well enough, it's best not to play. The gal in the video clearly didn't discern her way through the choices she made, she clearly didn't even understand how the therapies where supposed to work. If you don't understand, don't do it.

But, don't ever make yourself a loser because someone else tried before you and they lost. If that were the case in life, we'd never accomplish anything. Failure to try (which includes learning) because of fear of failure is a very sad thing. Ken