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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...

That wasn’t quite what I was proposing, but rather So for me I may record - Getting to the toilet in the morning (something I struggle with when bad but manage ok when better) - Sitting by the window on a chair for a short time (something I like to do but don’t often because of the impact or...

This is really important Jem and what I am trying to address here. But I understand I may not have got things right yet. Is there a way I can distill or explain what I’m aiming for you so I can get your feedback on what may or may not work better? Please feel free to reply here or send a...

@Jonathan Edwards I realised my comment about the differences people with ME/CFS have, in the context of you describing you and your wife's experiences was insensitive and I apologise. I don’t mean to diminish the challenges you or many others face with the services. I see them too.

Yes, I’ve watched the work @Suffolkres has been doing has been doing with part admiration, part shared frustration. Definitely an inspiration though. While the charities have been somewhat disappointing on this front. I’ve had contact with mine in the past too. And am trying with my MP and GP...

I’m sure none of them are trying to protect their reputations or maintain interest and cashflow for their ‘expert services’. The hand waiving and woo woo is strong, it’s probably the ley lines.

I’m planning on making a template and giving this a go for a few weeks to see what works and what doesn’t. This probably won’t be for a month or so, but I’ll share any templates I have then so others who want to can try themselves and also give feedback on what works or doesn’t for them. If...

We have this thread for critiquing the delivery plan which is important. There”s a lot wrong with it. I’m going to start a thread asking if there’s steps we can take. It doesn’t stop us saying what we don’t want or that other things are rubbish or that we need to be under a specialism when the...

I understand and share the cynicism. But to be blunt, it’s not a luxury I can always afford. I have to do whatever I can to get some basic care. Will I be successful? Maybe not. But it seems worth a try. And I’d like to work with others to use whatever resources we have to do so. And no...

Which is great for the top end, for research and so on. But some of us need people to take bloods, give us vaccines and deal with day to day problems *now*. This has fallen apart and I don’t see hospitals doing it anytime soon. No matter what may have happened in the past (many decades ago)...

Yes, specialists are great when there is a specialism and they have something to do. I suppose my point is, we don’t yet have that. So need something in the interim. I’m just trying to make things better given what’s in front of me.

Sorry, understood. That makes sense. I’d add that for some of us having a consultant turn up at our houses being like consultants so often are and thinking they know it all is the last thing we need. One issue here is so many of us need different things that here isn’t one simple answer or...