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Slightly off-topic (which seems to be what my brain does nowadays...), I have a chook who is over 6 years old. It’s been interesting watching her ageing. She sleeps for most of the time, and if I don’t get her up in the morning, she will stay in the coop and then of course doesn’t eat. When I...

Is there no way to actually have some objective measures in a fatigue questionnaire?

I seem to be ok with most things. Some medications are not ok - I had horrible side-effects from what my GP called ‘homeopathic doses’ of carbimazole, and adrenaline in dental injections and gels is awful. I’ve just had some fillings replaced and my new dentist actually listened to me and gave...

@Peter Trewhitt i find my spelling deteriorates significantly when I am feeling bad. I transpose letters/leave letters out etc. Normally spelling is not a problem at all. I am also now unable to read any book requiring significant concentration. I can manage lightweight fiction when I’m feeling...

For me, I think working memory tests would pick up poor performance, and also any tests with competing demands for attention or where there are distractions during a task. Speed of processing is also definitely less... trying to decipher what someone has said when there is music or someone else...

I’ve often thought it would be good to have a study looking at cognitive function in people with ME, head injury and normal controls.... I recognize some of the issues that I saw in TBI patients in myself when I’ve been overdoing things. Memory, executive functioning, emotional control etc...

I would find it most surprising if she hadn’t been harassed, but to me there are two issues to be drawn from her reaction - firstly, the fact that she doesn’t ever seem to engage in any critical self-reflection as to why this is the case, when other researchers aren’t....(and she can’t claim...

I hope that this leads to improvement for you.

Still - methinks you may have started out with better software than me!

For me, the exhaustion post-exertion is both peripheral -in the muscles used, and central. It’s the central part that is the telling bit I think. So just now, I’ve been overdoing it unavoidably and I feel shattered - in my core/chest. It feels as though it would be dangerous to push through - I...

Sadly, I find that sleeping alone is essential to actually getting a decent amount of shut-eye.

@Woolie - out of interest, are the doctors now thinking you don’t have/have never had ME, now that you have an alternative diagnosis?

Do you mean that you wake up feeling good? Like you are ready to bounce out of bed? I don’t know if I am right but that’s my interpretation of the sleep thing... not that you might not sleep well/not wake up, but that you don’t feel/function any better for having slept...

My gut slows down when I’m in a crash, so yes bloating and constipation. Also muscle cramps everywhere. I take extra magnesium which helps those symptoms....

@Graham - do you think it would be helpful for there to be more names on the letter or not? There is no way my foggy brain would be able to write a letter like this, but I’d be delighted to add my name! However, the most important thing is to maximize the impact of your efforts.

My other half got two minutes in as well, and then said ‘I don’t need to watch any more. That woman is mad.’ He reckoned that she comes across as delusional even if you know nothing about the subject matter. Anyone who feels the need to start off at a talk like that with her grandfather in...

Bliksrud just sounds annoyed that he is receiving blood samples for metabolic testing. Those pesky patients - why won’t they just accept that they have a psychological illness and keep out of my way.... I wonder if he has actually done the metabolic testing on any of the samples??

So no likes for my Facebook post, and no comments, and no donations. I am invisible....

I’ve just shared the link on Facebook, which I never normally would do. Probably around half of my Facebook friends don’t know I’m ill- but I’m hoping one or two might donate. I’m going to donate for Xmas. I’m not ashamed of being ill and I am sick of pretending I’m well just to fit in with what...

Well done for making it safely half way round the world! Maybe, if you can now de-stress a bit, your body might repair your lungs.... fingers crossed!