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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

To partially answer my own post, the data analysis plan says they can perform analysis on co-occurring conditions with “stratum of at least 1000 samples”. So the mild/moderate vs severe comparison may be possible. It would be really interesting to know if any genetic signal is strengthened or...

Or perhaps those who had poor childhood experiences were also living in poor condition which impacts their health? As far as the pandemic went all those who were able to get their wages paid, work from home while hanging out in their gardens no doubt had very different experiences from those...

I have been thinking about the data analysis plan again in light of recent discussion of studies focussing on more severely affected people. There are plans for all sorts of analysis, including stratified analysis for things like sex, co-occurring conditions, onset, etc. but there’s no mention...

Definitely. And that alone could be really useful. I know this forum has helped me be more confident and sure of myself. Having published literature back it up is useful. It’s so easy to be isolated and think you must be the only one thinking or wanting xyz, especially with such an isolating...

Yes, looking over the paper there seems to be a lot of similarities outside of these very specific differences too. For instance: I like the questions @wigglethemouse has been been raising. Hopefully things will make more sense with greater context and information, maybe even after...