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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...

Fair enough. I think this is getting way more ideological than I thi k is helpful. I agree with all the points about resources. I could argue your big vs small building points in reverse. Or we could go off into if centralisation or decentralisation has worked.. but I think it’s probably all a...

I disagree. Hospitals deliver for hospitals not for patients. They become big, unwieldy and a nightmare. A lot of what people need shouldn’t be done in hospitals. It should and could be done elsewhere. Being able to go to a community clinic to get a scan has been so much easier for so many...

Why do we need consultants? What would they do?

Indeed. I don’t think we will have a useful ‘ME/CFS service’ until we know what ME/CFS is. But I would like consistent care and the chance for people to learn what I need rather than continually passing me on to someone else or referring me to a pointless ME/CFS specialist service and thinking...

Useful, thanks. Just reporting my experiences and from the few occasions it seemed that was what was happening. I obviously have not performed a wide ranging or exhaustive study. And certainly can’t explain why it was happening. I got the same ‘smell’ at times when getting loads of sea water up...

I really think we need to change how we look at this. I understand why but think we waste too much time and energy focussing on those whose minds we cannot change. They’ve caused harm, but they will become irrelevant and we should let that happen. Focus our efforts on those who don’t have...

This is where I agree with you but also perhaps have a different view on if we can make the ‘local level’ stuff work. Decommission the ‘specialist services’ they’re a waste of, well everything. Have local/community services deliver what people like me need, which is to have a couple of people...

That charities keep pushing for ‘more services’ is my one big gripe. We need to let the old services wither and die, or even better just shut them down, not waste more time, money and patients precious resources propping them up.

Maybe a little tangential but recently I was wondering about the usefulness of saline as a placebo in trials. Or maybe my usefulness. Because I can tell if I’m being given saline, I can ‘smell’ it. Before (or around the start of) my ME/CFS I was in hospital a couple of times and this cropped...