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I think of my energy as being in a balloon..... I can stretch it so far but if it gets too taut, I have to let some air out quickly by resting. I need to keep the balloon below a certain size - with some flexibility still in it, and the balloon lasts longest if I keep it quite unstretched. If...

Swimming is much too aerobic for me to be able to handle. I can do floating and very slow short swims, but otherwise it’s a no-go. Like cycling or jogging.... I used to do triathlons before I got sick. Now I get cramps in my abdomen just with keeping upright in a car.

I just had a ME moment where I looked at this thread and was surprised to see that I had started it!! The funny thing is - I’m not getting this at all at the moment. I don’t know when it stopped - but for now, it seems to have gone. Of course, it will probably return now I’ve noticed it’s gone!

Maybe the way to think about the incidence in women is to consider that there’s a dip in incidence in your 20s, rather than two peaks, one in your teens and one in your thirties.... So perhaps there is something protective going on in your 20s, when you are ‘in your prime’? And if you are...

Ron Davis is talking about Whitney

This is live now

I hope my GP won’t be there - but I guess it’s possible because it’s not far to travel....

Just what we’ve all wanted - MS helping us out with our ‘illness-without-disease’ paradox. He’s so entrenched in his beliefs, we haven’t any hope of changing him. Luckily I don’t think many people will fall for this guff.

‘I hand this out like candy’ says Chris Kenedi. Well - you eat it then.....:banghead:

How can the huge variation in gut issues between different people with ME be explained? Some people seem to have very significant intolerances, whilst others have none.... Does this indicate a different disease to him? It seems that the incidence of severe food intolerances is increasing. Why...

I’m just getting to grips with a database system called Infoodle. It seems to be used mostly by schools and churches but I think it’s probably quite good for smallish organisations... not too expensive in terms of ongoing costs. Is it something that there will be funding for?

That’s a bit like the saying about hospitals - that they would run perfectly if there weren’t any patients....

I wonder if it’s unusual to have such a range of scores. It certainly seems to indicate there is a significant problem with at least some of the panel having preconceived notions about ME.

Yes - I definitely have low stamina now - both physically and cognitively.

My impression is that the people delivering the programme are LP zealots..... so the expectation bias from them is probably very great. I was ‘encouraged’ to speak to a LP practitioner on the phone by a friend who had done the programme and been ‘cured’ - certainly the person I spoke to was...

Has anyone suggested a modified barium swallow for investigating your dysphagia? I would do that, given that the FEES and eosophageal screen haven’t shown up the problem. In my opinion, best done with SLP and radiologist working together.....

I get occasional brief but intense-feeling episodes of tachycardia - my heart rate doubles and stays like that for a few minutes. I have captured the heart rate on my bp machine at home, but no doctor has ever found anything wrong with my heart. Could it be that? It feels horrible.

Would be interesting to ask WINZ how much if any of the action promised actually occurred.....

I remember distinctly having stomach cramps and discomfort when I started it. I’ve been on LDN for many years now. Various doses - initially 4.5mg once a day, then twice a day, then 2 capsules in the morning and one at night. Then back down to 4.5mg twice a day and now I only take one capsule in...

Sorry - haven’t ever attempted to get any kind of benefit! I always assumed I would be turned down....