Still No Treatment or Future Cures

[billy106]

It gets a bit annoying but understandable that MND sufferers or others post information on studies or whatever about Motor Neurone Disease. The bottom line is , There is Zilch out there. Just Grants getting thrown around like confetti , for career furthering , Producing Hopeless and outdated data, Back slapping events for scientists and others. There should be one Centre of Excellence for MND , everything studied and tests under the one roof. Not Groups and individuals up and down the country producing the same repetitive studies and theories for 40yrs now. Stop posting Crap about studies..

[Lynne K]

Billy, it’s your choice whether or not to read anything about studies and your right to gripe if you feel like. But if you think that they are ‘crap’ then please just ignore the posts. I enjoy reading every bit of information out there on trials and research so I don’t want people to stop posting about them. Lynne

[Ellie]

Ditto Lynne x

[Barry52]

Hello Billy,

I refute your idea that MND trials are pointless. The trial results are shared worldwide and you could not achieve the range of results in one centre. Please bare in mind that trials often lead to better quality of life i.e. gastronomy and none invasive breathing assistance. Yes we all want a cure but in the meantime many trials have improved prognosis. You are entitled to your opinion but we need to promote fundraising to fund these trials.

We all get frustrated at the apparent lack of progress but I can assure you as someone connected to a major research centre as a lay member with MND there has been huge progress in the last few years. I understand your frustration but I ask you to consider the effects of apathy on the great people who raise awareness and funds for research into an improvement in the quality of life and possible drugs to slow progression or ultimately to lead to a cure.

Barry

[Banned]

Hi Barry,

Do you know when we can expect something?

[Barry52]

Hi Graham,

Sorry but I’m not at liberty to discuss ongoing trials or applications for funding of new research until it is in the public domain.

Barry

[Banned]

Hi Barry,

Are you involved in steering new clinical research?

[matthew55]

I'm involved in my own personal research in which I try different strains of Cannabis to see which helps me the most. It's the only thing that my cousins over the pond have got right. 😄

[Barry52]

Hi Graham,

My role is a member of the research advisory group (RAG) based at SITRAN in Sheffield. The group encourages patient and public involvement (PPI). For clarification we have to sign a confidentiality agreement so I will not be discussing anything that has not been published. My reason for my initial reply to Billy’s post was to dispel the belief by some that the investment made by MNDA for research is pointless.

Barry

[billy106]

Barry I have nothing against real Drug trials for Mnd , What gets me is that everybody and their Granny is producing Scientific data and studies that basically will never have any end product. That data has been getting Churned out for over the last 40 years. and still the only licensed drug for Mnd is Riluzole, which is a secondary drug for types of cancer now being used for Mnd . 99% of Scientists have never met someone with MND.

[Doug Carpenter]

99% of Scientists have never met someone with MND.

So...?
99% of scientists don't work on MND

Doug

[Banned]

Hi Barry,

Understood and thank you for sitting panel.

Quite understandably Billy, others and I will be frantic for a cure and we move out of the trials phase, if available, after a matter of months. After 11 years of being on this forum, with well over £100M raised and spent, people do have a right to ask some probing questions.


Matt, I too try various blends from Lebanon when Frank Gallagher next door lights up. As recently as 2009, MS sufferers have been put on trial. DLDNM.

[Onein300]

The reality is that we are very close to treatments for at least part of our community, probably less than 18 months. The research landscape is rocking and we in the U.K. are world leaders. There are about 10 phase 3 trials in progress as we speak and more and more are being added.

Once we treat part of our community (specific forms of the disease) we would have shown it’s a treatable disease. That will mean an flood of new investment.

It may never seem fast enough, but scientific progress needs to made with caution.

Early approval of apparently effective treatments could be dangerous to our cause, perhaps even setting back progress.History in other diseases has shown this.

We, the current generation, have a responsibility to those who will be diagnosed in the future. We must take part in trials or else nothing will be achieved.

[matthew55]

In the meantime we have gold and red. 😉

[Banned]

Hi 1in300,

Quite agree. Soonish the trials will end and some treatments will become available for some. 2024?