Reading Time: 2 minutes Dr Richard Bedlack is based at the Duke ALS Clinic in America. Back in 2009 he founded ALSUntangled and to start off MND Awareness week he writes about the group and what they’ve achieved in the past five years. ALSUntangled started in 2009 as a method for helping people living with MND (commonly known as ALS…
Reading Time: 4 minutes The only ‘proven’ treatment to slow the progression of MND is Riluzole. There are, however, many organisations offering expensive ‘unproven’ and ‘alternative’ treatments for MND. We have worked with the organisation Sense about Science to help produce their ‘I’ve got nothing to lose by trying it’ information booklet so that people living with MND can…
Reading Time: 3 minutes We are aware that a number of MND organisations, forums and people living with MND have received spam messages regarding a gentleman who claims that he can stop the deterioration for MND through an ‘electro medicine’ treatment. He urges readers of the message to reply to his email so that he can provide his proof.…
Reading Time: 2 minutes We have been made aware that there’s a new kid on the block in terms of unproven treatments, which is a new route of administration of stem cells at the X-Cell stem cell clinic based in Germany. As a brief background of the story to date, last year, a group of international researchers collectively known…
Reading Time: 2 minutes An unproven treatment called ‘Spirulina’, which is a type of blue-green algae, has recently been investigated by ALSUntangled*. They concluded that there is no evidence that Spirulina is effective for treating MND. Their findings also suggest that it could be toxic to people with MND. In their investigative paper, which is free to download and…
Reading Time: 2 minutes The room was crowded at 8am for the first presentation of day two, from Dr Doug Sipp (RIKEN Institute, Japan) on ‘Unregulated ALS/MND treatments and public education’. Dr Sipp provided an insightful and entertaining overview of the plethora of self-styled stem cell ‘clinics’ and the tactics they employ to attract business. During the talk, the song Snake Oil, by…
Reading Time: 2 minutes ALSUntangled have debunked yet another unproven treatment advertised on the internet. Publishing these results in a reputable journal is of the utmost importance as it means that their findings can be read and be trusted as a reliable source of information. The unproven treatment that the group of clinician-researchers investigated was the Stowe/Morales treatment protocol…
Reading Time: 2 minutes Alternative treatments can be tempting if you have a disease like MND, for which conventional medicine can only offer one moderately effective drug. Unfortunately this temptation is easily preyed upon by clinics around the world that claim to be able to provide effective treatments or even a cure (at great expense of course), despite having no supporting evidence. We often take enquiries…
Reading Time: 2 minutes With the internet providing an expanse of ‘quackery’ jumbled up with facts, it’s becoming increasingly difficult for anybody to know what source of information can be trusted. This issue is especially apparent to us when we add unproven treatments into the mix. An unproven treatment is, quite literally, a treatment that has no reliable proof for…
