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:rofl: Won’t somebody please think of the… experts

Thinking about how we can measure if treatments work. A lot of the questionnaires and scales seem to try to compare across subjects, which is really difficult for many of us, they don’t fit our experiences or severity. So people try to capture a range of experiences and we end up with huge long...

Just to add, one reason often given for these measurements is to measure outcomes of treatments. And we hopefully will need measures of those. But this level of detail would only seem useful for interventions which have minimal impact (so ones which basically don’t work). And seem completely...

I hear you and empathise @CorAnd Hoping for autumn to come sooner rather than later. Then again I have problems when I get too cold too. It’s just either less bad or more likely a lot easier to avoid/control than heat. Understanding why his happens to so many of us, and our bodies react so...

This reminds me of the Red Dwarf episode/book Better Than Life

I was writing this with something else in mind but it seems apt here.. The best I’ve been is when doing less than the limits this disease imposes on me allow. Not pushing or being pushed. I don’t need advice on how to do this. I don’t need an app to track things. I am the expert here and I...

Creating environments that allow people to be wrong or make mistakes is really hard. And something I was really interested in during my career. Because it’s essential for creativity, making new things and getting the best out of people.

I like that way of putting it @Utsikt and being open to being wrong, changing your mind is really important. But it is hard. And the more we wrap ideas or beliefs up into our identity the more personal they become and harder to let go of. I think that is sometimes what the core of BPS true...

I mean similar messages from the government. Saying they will not increase specific funding for Parkinson’s, referring back to the NICE guidelines, saying it is up to ICBs, talking about how research is funded through the NIHR and funding applications are welcome.

I really agree with what @jnmaciuch has said, and put very eloquently. Bottom line is there is no immunity to this. Every one of us is susceptible and every one of us will and do fall into these traps. Sure, some go off the deep end, but recognising we’re all fallible and that you cannot beat...

Yes, I think it’s worth remembering that many of the lines and challenges are seen with other conditions too. I’ve been watching similar messages about funding and other areas in response to the Parky Charter, which has people with media experience and profiles behind it and a sizeable petition.

I’m not sure how much I can help or give advice and can see the challenge but maybe some more questions will help? What are you looking for? A sense of achievement? Structure? Interaction with others? Money? Opportunity to learn? Are you comfortable trying new things out? How about if they...

Difficult to say for sure but my gut reaction would be no. I get it during what for me are milder periods. If I’m generally at the better end of the scale and have a ‘little’ blip I may get this. If I’m bad the problems are different, or maybe I just don’t notice because of all the other issues...

I suppose in those borderline cases it’s probably best to cast the net wider and have more in there than less? It can always be narrowed down later, when someone digs more into a paper/when experts are using it and provide feedback that a gene isn’t relevant/appropriate for inclusion.

That makes sense. Thanks for sharing and for outlining your process. Cooperative efforts and certainly supporting them can be a lot of work. And I understand the difficulty over criteria, ultimately the quality of the data in the database is the valuable part. Maybe there’s scope for a well...

Impressive, nice work @forestglip I wonder if it would be possible for others to help out? Spread the workload and crowd source the effort.

This must be the King’s department mentioned? https://www.kcl.ac.uk/slcps/our-departments/department-of-twin-research-genetic-epidemiology Edit: Oh I think @Jaybee00 got there via a different route

Presumably because not all twins are genetically identical and for those that are it can help understand the non-genetic factors?

Thanks for the links @wigglethemouse really interesting

Really interesting background, thanks for sharing @Nightsong