I endorse your observations about shared language, or rather the lack of it. You have just had the good fortune of an accelerated intro to the topic. Our RIG has been in the trenches of the struggle for plain english for 5 years with this ouevre to show for our efforts, https://youtube.com/@penprig .
It would be interesting to hear what M & S has to say. It is a challenge for us as well; it takes 2 to tango.
Through my involvement in a Parkinson’s research hub, I have had opportunities to actively contribute to making research more relevant to people with Parkinson’s. Measures of “success” in terms of treatments should be what will make a meaningful difference to our lives, not just some arbitrary rating scale or what the economists judge to add QALYs. It is so important that patient voices are included in designing research and making the results accessible.
This is good news and at the same time we hear from the M&S team and all the others I meet the gulf between the medical people - consultants, PD nurses etc seems painfully vast. You can't get to see them more than once or twice a year and when you do they don't seem to listen or have any interest in exploring our concerns or suggest anything other than taking more or less of whatever it is they prescribed you initially. There was mention early on in the podcasts of getting in a senior medic and getting them to listen to your frustrations and challenge them to come up with some new responses. Is that something you are going to do? And are you going to look at some of the non-mainstream treatments that seem to help some people - Vitamin B1 for example. And the Ambroxol thing - an over the counter drug that has been shown in Phase 1 trials to work.
Hi Nick, if you can let me know where you are we can chevk if there is an active RIG near you as it sounds as though you would find it interesting to be part of one?
I endorse your observations about shared language, or rather the lack of it. You have just had the good fortune of an accelerated intro to the topic. Our RIG has been in the trenches of the struggle for plain english for 5 years with this ouevre to show for our efforts, https://youtube.com/@penprig .
It would be interesting to hear what M & S has to say. It is a challenge for us as well; it takes 2 to tango.
Through my involvement in a Parkinson’s research hub, I have had opportunities to actively contribute to making research more relevant to people with Parkinson’s. Measures of “success” in terms of treatments should be what will make a meaningful difference to our lives, not just some arbitrary rating scale or what the economists judge to add QALYs. It is so important that patient voices are included in designing research and making the results accessible.
Thanks - yes I would. Camden Town/ London
This is good news and at the same time we hear from the M&S team and all the others I meet the gulf between the medical people - consultants, PD nurses etc seems painfully vast. You can't get to see them more than once or twice a year and when you do they don't seem to listen or have any interest in exploring our concerns or suggest anything other than taking more or less of whatever it is they prescribed you initially. There was mention early on in the podcasts of getting in a senior medic and getting them to listen to your frustrations and challenge them to come up with some new responses. Is that something you are going to do? And are you going to look at some of the non-mainstream treatments that seem to help some people - Vitamin B1 for example. And the Ambroxol thing - an over the counter drug that has been shown in Phase 1 trials to work.
Hi Nick, if you can let me know where you are we can chevk if there is an active RIG near you as it sounds as though you would find it interesting to be part of one?