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$18,053 raised, 26% of target, 21 days left

Great to see that Alem Matthees has donated $500!

I have a feeling that caffeine doesn't affect my sleep either. I have cocoa in the early evening instead of coffee, but that also contains caffeine. It's other things that affect my sleep, notably PEM.

! Could someone let them know of their error?

I've been victim to this at least twice - the first time after a muscle transplant from my leg, when I just knew that my leg hadn't yet healed sufficiently, and as a result of getting up it split open and became infected - probably the reason why I now have a huge scar on my leg. The second...

Good grief - I wonder why I thought she was?

Yes - that was Caroline Lucas. As a Green I was very concerned about her involvement with them, especially as she is/was a GP! I emailed her a few times, and I think I posted about it on this site.

responding to a deleted post I suffered serious addiction to amphetamine in my 20s, so I suspect that any kind of amphetamine would have a similar effect. I certainly wouldn't risk it, although I did try it after I kicked the habit, and I suffered the usual after-effects ('comedown'). I...

I don't think I get any ill effects from coffee/caffeine. I also didn't get any effects, other than slight irritability, from the three times I tried cocaine, although my friends did. I suspect that I have a kind of immunity to coffee and cocaine, but I love the taste of coffee.

I thought that this was common in ME. I have had it for (almost) as long as I have had ME. I showed it to a GP early on in the illness, and he didn't really have anything to say about it. Even when my weight has been normal, the backs of my knees appear swollen. I have to kneel when washing...

I wasn't sure what OCHOS was (brain fog as usual?) so looked it up on here - it's orthostatic cerebral hypoperfusion syndrome.

Yes, I had serious hyponatraemia (low blood sodium) for years, and took desmopressin for it, but had a hell of a job getting it and a hell of a job convincing medical staff to test my blood sodium. It was as low as 115 on one hospital admission, i.e. close to losing consciousness. Then last...

Is that the Chew-Graham who has previously participated in ME research? Wasn't it rather rubbish? This looks OK from a quick glance.

Sorry that I haven't (yet) been able to answer the questions at the beginning of the thread. I wonder whether we need another term for delayed (i.e. the usual type with ME) PEM, maybe DPEM?

"in the worst cases has left some people feeling that their illness is not recognised by the health and care system" Feeling? I think that is rather an underestimate.

This may perhaps include things that weren't done for Maeve Boothby O'Neill. Views are being sought for the development of NHS services in Devon. NHS Devon said local and national public engagement would help shape the national 10-year health plan, which would include a shift from analogue to...

I get this too - I'm often in a quandary as to whether to sit down temporarily to rest or to keep standing, because of the effort needed to stand up again. I often have to pull myself up using furniture when I have had to crouch on the ground, e.g. to pick something up. I really should...

I hadn't previously thought of myself as suffering OI, but maybe I do. I can't usually think properly when standing for a while, which is why it's so much easier to shop online. Also, I do suffer in queues similarly to someone else/most people with ME, so that I have to keep moving my legs. I...

Me too - I often consult PR when trying to remember the older days, although I was never severe. Luckily I copied out my old diaries there. I am often surprised at what I read!!

Most of the possible side-effects are already symptoms of ME!