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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!

Wish I had something useful to suggest.... Do you think there is anything to be gained from seeing a respiratory specialist? Would your GP refer?

Hello @Mike Harley - great to see you here! In case I haven’t told you - I think what you have done and are doing for ME awareness is totally amazing. :trophy@:trophy@:trophy@

Edited to add - can you see the halo?

The article also says that taking biotin might affect your TSH test results - something to be aware of for those of us having regular blood tests for thyroid function....

I really hope that the study does uncover some clues, despite the negative overall finding. I was certainly pinning my hopes on rituximab so I’m really disappointed. Having said that, in NZ I am not sure if/when it might have been available even if the study had been positive. I’m positive for a...