Great Article from BBC -
- Arthritis sufferer Daniella Muallem's experience of using alternative remedies - Video Here.
The group, backed by charity Sense About Science, says vulnerable people are being increasingly exploited by the online promotion of such treatments.
Many untested remedies are expensive and do not work, and are often based on "unreliable" evidence, the experts say.
A new guide has been published to help patients recognise bogus treatments.
Sense About Science says there are now hundreds of websites offering hope to people who are desperate for a cure.
Many online adverts and chat-room conversations testify to the "incredible" benefits of new medicines and treatments, often selling the empty promise of curing the incurable, the charity says.
Some offer stem cell treatments for brain disorders for tens of thousands of pounds. Others sell cures for multiple sclerosis and cancers.
But the evidence behind the remedies is often unreliable, experts say, and patients are increasingly being exploited.
Experts and patient groups want to see tighter regulation to reduce unfounded claims.
Dr Kieran Breen, director of research at the Parkinson's Disease Society, 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."
'Looking for hope'
Lib Dem MP Phil Willis, chairman of the Innovation, Universities, Science and Skills Select Committee, said the "cruellest deception" for a patient with chronic illness was the promise of a cure based on "empty hope not evidence".
Ian Douglas, who has multiple sclerosis, agreed, saying patients with incurable conditions found hope in short supply and looked for anything that might help.
"This makes them particularly vulnerable to treatments that are supported only by anecdote and rumour," he said.
A new guide, called I've Got Nothing To Lose By Trying It (download available here), has been published by Sense About Science with the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer's Society and Parkinson's Disease Society.
It aims to help patients tell the difference between beneficial remedies and bogus treatments.
Hazel Thornton, a patient advocate who acts as a liaison between patients and healthcare providers, said the guide would help people "bring a critical eye and a questioning mind to what they read and hear".
Have you bought remedies advertised on the web? What has been your experience with them?
Published: 2008/11/10 00:36:23 GMT
© BBC MMVIII
Experts and patient groups want to see tighter regulation to reduce unfounded claims.
Dr Kieran Breen, director of research at the Parkinson's Disease Society, 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."
'Looking for hope'
Lib Dem MP Phil Willis, chairman of the Innovation, Universities, Science and Skills Select Committee, said the "cruellest deception" for a patient with chronic illness was the promise of a cure based on "empty hope not evidence".
Ian Douglas, who has multiple sclerosis, agreed, saying patients with incurable conditions found hope in short supply and looked for anything that might help.
"This makes them particularly vulnerable to treatments that are supported only by anecdote and rumour," he said.
A new guide, called I've Got Nothing To Lose By Trying It (download available here), has been published by Sense About Science with the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer's Society and Parkinson's Disease Society.
It aims to help patients tell the difference between beneficial remedies and bogus treatments.
Hazel Thornton, a patient advocate who acts as a liaison between patients and healthcare providers, said the guide would help people "bring a critical eye and a questioning mind to what they read and hear".
Have you bought remedies advertised on the web? What has been your experience with them?
Published: 2008/11/10 00:36:23 GMT
© BBC MMVIII
Thanks. This is an important reminder.
ReplyDeleteGood post. I tried my alternative treatment (a drug used for something other than MS) because it involved minimal cost and was hundreds less than I was already paying for stuff that didn't work, and it had no side effects. This time it was a no brainer but in the beginning after my diagnosis my mom sent me every "cure" under the sun.
ReplyDeleteLisa, you know my answer. LOL Nada.
ReplyDelete