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So, to use a comparison which may not help too many others, but a gene association may be like a function in a callstack of a crash dump? It may tell you something about a running process at a time of a crash but not necessarily the location or root cause, you need more information and analysis...

And can we get forum (or real) badges with “Bears of little biological brain” on them?

This sounds right to me. Although there are definitely periods when there is what feels like weakness too. But the way PEM or that weakness both arrive and leave feels different to weakness as most healthy people understand it. I think… Comparing with my healthy activities is a good one. So...

Was there even that much of a mechanistic theory? Or has that been layered on top subsequently? Your whole description is great. And that it applies to different severities too (well at least you and I where you talk of 30-1hr of walking and I may talk of 5-10 minutes cutting my hair or washing...

Press release on Phase 3 Trial results here, which has more details and links to trial pages etc https://apnimed.com/article/ad109toplinephase3results/ And info from an earlier paper https://pubmed.ncbi.nlm.nih.gov/37812772/

Good to hear and very pleased for you @Robert 1973 There’s definitely good ones out there and I think more would be if they understood a bit more and themselves weren’t as pressured. Few want to cause us problems, it’s just often the unfortunate path of least resistance I think

I guess we may not even need the number of times you did them if picking the right activities and having clearly delineated groups as you outlined in your example? It may lose some resolution/detail but could be easier to fill in and still capture any changes.

Great ideas! I can picture how this works, more of a weekly tally?

The gatekeeping done by most NHS services is absolutely ludicrous. And the barrier which stops me before I even reach a medical professional. And yes lack of energy is daft. When I was first ill and up to getting to the surgery it was a huge effort with some impact, maybe thst could have been...

Yes, sorry, I know you understand the nuances, I suppose in the context of this discussion the difference seems important as we cannot see the source code, the training data. The methods are hidden even if the results are ‘open’. Which seems very much like the sort of closed science we are...

Absolutely agree and hope my comment along those lines made that clear. But I also think it’s important to not fall into traps of the grass being greener on the other side or of technical or methodological solutions being a magic solution to human problems. So to challenge this a little and...

That’s an interesting idea Good question and I understand the mental gymnastics and difficulty of capturing this. I’m not sure what the best way is, hence proposing some ideas and seeing if they stand up or can be improved. I think I phrased it better with ‘significant negative impact’ but...

I’ve seen this idea that software development somehow has a better grasp of this mentioned before. What you you describe was my job for a decade or so. The tests, the quality control, etc. And I can assure you that there are plenty of people in software development who do not take this...

It’s not waffle! It’s all really useful. Sorry I didn’t mean to dissuade any discussion. I think I’ve just got really into the idea of trying something ourselves and tweaking it until it works then letting some researchers run with it.

So tell us what you want to record and how. That’s what we’re looking for, how would you approach this? What would you do? You’re the boss @bobbler and you are in control here :) Take my suggestion and modify it to work for you

Exactly! It’s a tricky one. We’re not trying to capture the entirety of our experience of ME/CFS. But equally we do need to have some range in there. I really don’t know where the right balance is.

A good point, although so does developing a website or app. Also one of my aims here is for us as patients to try and find a something which works for us as patients. Get that basic framework right. What can we track ourselves that we feel is meaningful for us and would indicate to us if an...

This is really interesting! Thanks for sharing.

Could do. Despite my love of technology I was thinking a piece of paper and putting a mark in a couple of boxes once a day may be enough. But others may prefer a spreadsheet. I don’t think getting too hung up on technology etc at this point is going to be helpful if we want to see if we can get...

I see what you mean Trish. FUNCAP is probably better for longer term tracking and any significant changes. I like its structure, it’s just a lot to be doing even monthly and certainly more regularly. I can see it being a once or twice a year job or something for some significant longitudinal...