Gut Microbiome Appeal

[Julian50]

When I read the Association's advertisement for funding for Professor Chris McDermott’s study I was enthused because I believe that treatment of the gut microbiome could well slow the rate of progression of the disease. This was ever since I read a study of the effects of Elysium EH301 in Valencia and Israel which I appreciate were limited but which I replicated and found that it brought some benefit to me! I have raised the issue with consultants over the last 6 months and on every occasion I have been met with a brick wall. Whilst I appreciate that no consultant can recommend a drug that has not been authorised in the UK, Elysium is only a supplement and its constituents are readily available over the counter here in the UK. And even if there is any uncertainty around Elysium in particular, I don’t understand why the Association or the consultants have little interest in monitoring people who do take it or otherwise recommending dietary suggestions to encourage gut microbiome such as those in this article which members might find interesting:

https://www.sciencefocus.com/the-hum...ur-microbiome/

Notwithstanding my belief in the link between gut microbiome and the rate of progression of MND, I also feel that when the Association issues a special funding appeal, it should include a link to Professor McDermott’s study proposal including its scope and duration, projected cost, any trials etc and the results of previous studies that he will be building upon. For example, UCLH received a £1.2m grant in 2017 for this very purpose but I cannot find a report on its outcome anywhere. They are also undertaking further research under Dr Sharma and so it would be nice to know how Professor McDermott’s study fits in with that. Additionally, further Elysium trials are taking place in Europe, especially Scandinavia. I would suggest that part of the role of the Association should be to ensure that there is minimal duplication of limited resources so that unused resources can focus upon other treatments and possible cures such as Stem Cell which is being pioneered in the States and the Far East!

Finally, when Professor McDermott does carry out his study and issues reports, I do wonder whether those who fund it will ever be able to read the outcome, When I read the list of other studies that the Association has funded that are now complete, there is no link to the papers written or even the outcome. As a donor to a study, I feel that that is the least that I am entitled to expect!

I believe that the members of the Association as funders of research should be entitled to this information in any event but certainly, until it addresses these issues, I question whether it is appropriate for the membership to be asked to dig even deeper in the way of special donations such as this appeal.

[billy106]

Funding is better directed to finding a cure mate , not supplements and their supposed benefits.

[Julian50]

I quite agree with you Billie except that in the case of the gut, if there is a supplement that encourages the microbiome in the right way, it would be good to know about it. I feel that this is all part of finding a cure and where the Association has a number of members trying different things, it would be good to consult them and build a data base that can be shared amongst both the researchers and the membership without it going through the formality of a full trial!
Whilst clearly insufficient funds have been allocated into finding a cure and the understanding of MND has been improved, I feel that we need to take stock of all initiatives out there and where the resources should be concentrated. A sharing of that information and reasoning with the membership who are themselves funders would be welcome!