Page last updated at 07:11 GMT, Monday, 10 November 2008

Warning over untested remedy use

By Pallab Ghosh
BBC News science correspondent

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Daniella Muallem feels cheated by untested remedies

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.

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
Tracey Brown
Sense About Science

"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."



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