“Do you think we are doing enough to address the needs of MS’ers with progressive disease?”
If you follow this blog via email alerts only, or you use the mobile version of blogger, please click onto the main site via a web browser to complete the new survey?
Thanks
If you follow this blog via email alerts only, or you use the mobile version of blogger, please click onto the main site via a web browser to complete the new survey?
Thanks
I think you need to do much more Prof G. Progressive MS is the real evil. Thee RRMS version is a walk in the park compared to what the progressive condition is like.
I have answered 'no' to the survey, but in reality I don't know how much more the research community can do to help. Do YOU think there is more that can be done in terms of research? If you can get the lumbar puncture technique integrated into trials, then this would speed things up (hopefully!). BTW what's happened to your Twitter feed, which I sometimes used to look at?Thanks for what you're doing…BTW have you posted about the LP survey on FB?
PPMS is the poor relation, it falls into the pot where "if you pretend it isn't there it is invisible, so it disappears" unfortunately it doesn't. Because the only treatment is really one of painkillers, where as RRMS has lots of treatments so it gets the focus. Is this right….. understandable yes, right???allyq
Re: "Do YOU think there is more that can be done in terms of research?"Yes, we have a long list of compounds that need to be tried in MS. All we need is the desire and funding to start the trials.
Re: "BTW what's happened to your Twitter feed, which I sometimes used to look at?"Some of staff complained that my Twitter feed was too personal and unprofessional and that MS'ers are not interested in the musings of a nutty Professor. If you think otherwise I may be tempted to start it up again.
Re: "PPMS is the poor relation…"Possibly! The reason why it is the poor relation is that it is relatively uncommon occurring in only 10-15% of the MS population. The other reason is that it is very difficult to test therapies in PPMS. There have been several negative trials and "big pharma" are a bit wary. However, the good news is that Novartis are running a trial of Fingolimod in PPMS and the trial is fully recruited and Roche are currently recruiting for a trial of Ocrelizumab in PPMS. I give both of these drugs more than a 50% chance of being effective in PPMS. So it is not all bad news.
Re: "I think you need to do much more Prof G…."Believe me we are trying; I literally spend most of my time working on MS and thinking about the disease. We have lots of ideas and are trying to translate some them. What we need is the wider community to adopt them and give us the funding to test them in clinical trials. If you are in a position to help lobby for research funding or have access to funding, we will do more.
Re: "BTW have you posted about the LP survey on FB?"I don't have time to be active on FB. It would help me if you could post the link on FB. Thanks.
Re – "I give both of these drugs more than a 50% chance of being effective in PPMS. So it is not all bad news."50/50! If PPMS was a casino then I think it will be a pretty popular game. Unfortunately, right now, I think that no one will put their money on effectively treating PPMS