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Annoyingly, I test totally normal all the time even though my OI is hugely and constantly disabling.

Thanks, that's very good to see, and Chris Armstrong. Pity Dr Fluge isn't on the list or we could all have gone and asked him to give us a big placebo effect. :cool:

I agree with @Chris, OI seems to be my #1 disabling symptom.

@Jonathan Edwards - Do you still go to these conferences? Do they include the people we'd want to see there, such as the Edinburgh group?

Didn't IiME go through a phase of not wanting anyone to attend who had been in Stephen Holgate's UK CFS/ME Research Collaborative because it included BPS people? I seem to recall that they excluded the Edinburgh group for this reason, and it would be madness if they're still doing that. Have I...

No, I can stand up or sit normally and feel OK and then I gradually start to feel worse until the need to lie flat becomes pressing. I don't find it stressful (unless I'm in a situation where it's embarrassing to lie down in public, and that's not the OI causing the stress, it's the...

My OI doesn't involve feeling lightheaded, dizzy or faint, despite being so disabling that I have to lie down or have my raised all day bar an hour or so.

I haven't followed these conferences for years - I remember being really excited about them in the rituximab days and ordering the DVD every year. Are they still being worthwhile?

I've never 'liked' a post while liking it less. This is a horrific case.

Are there any reliable survey sources on this? @Trish is starting one here, which will be very interesting, but I wonder if there are good surveys separately for people with and without ME/CFS. The comparison could reveal some clues to mechanism if the presentations are different. Are there any...

Thank you, that's a massive relief. I'd been wondering if I'd been gradually becoming more and more stupid without noticing. (Genuinely, it's hard to tell through brainfog and the lack of focus that comes through being stuck at home with the distraction-machine that is the Internet.)

This idea of reduction in cerebral blood-flow has been worrying me a bit lately, because wouldn't it lead to brain damage?

Would there be any value in doing a survey of clinics to find out what they're doing? With a view to publishing it?

I've just been reading an article in the December 7 2024 issue of New Scientist, called 'Dripping With Promise' (yuck), which says that 'more than 30,000 biomolecules have been detected in sweat, ranging from metabolites such as glucose and lactic acid to peptides, proteins, vitamins...

Is it significant that a PwME can have quite severe OI without feeling lightheaded? I've had OI for nearly 20 years that has forced me to spend all but an hour a day lying flat or sitting with my feet raised, but I never felt light-headed. But recently, I got what seemed to be a viral infection...

What actually is a care plan? Should we all have one? No one has ever mentioned one to me. Who does them? GPs? Practioners in the clinics? Would we want one if there is no care?

You're right. It's just appalling.

Any thoughts about how we can get some? We seem to be deeply unpopular as a set of patients. Or is it the case that if we ever get physician-led clinics being set up, that's when we'll get the physicians?

I just had a look and was surprised to see that it did, but it includes, 'Do not offer people with ME/CFS ... physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS'. That doesn't seem to be happening in at least some...

It's notable that AFAIK, we don't know the specifics of what the ME/CFS clinics are actually offering PwME and PwLC.