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Hi Ana, sorry for the delay in my reply. I'm not able to be here much lately. My situation is complicated because of multiple health conditions. ME is my worst illness but I find the ulcertative colitis impacts the ME in addition. The UC added an extra layer of inflammation on top of what I...

I have acid problems, mainly due to intollerances. PPIs made my problems worse but maybe can work for you. The idea my gastro said was to take them for 2/3 months until the inflammation is down and tissue healed then come off them slowly. But I never got far with them. I still get some...

I’m sure he would much prefer it all to be confidential rather than out there on social media.

Progress? what did i win?

Thanks Andy, that’s great.

This guideline is a great victory. Well done everyone who has made it happen. We’ve won the battle but not the war yet, it seems to me. The clinics will try to carry on, just rebrand away from GET and toward non-fixed “paced” activity. Probably they will even drop the word activity. Nothing...

That's good, I hope, but they might work around that by blaming something else perhaps. sorry I was being lazy, should have stayed in bed today.

Beds is one of the clinics which fully embraced PACE and the underlying dogma it was based on. I hope we don't see clinics diagnosing ME patients with some other label to enable them to carry on treating patients the way they want to as before.

I agree, given we are stuck with (non curative) CBT in the new guideline, what we need is to influence how that is now implemented so that it is only for psychological suppport in coping with having got this awful disease and not warped into something brainwashy focused on the disease itself...

I totally understand. I haven’t tried one of those but I suspect they must be pretty comfortable. Hope it works well for you.

The latex topper I have came with a substantial cover which protects it and that unzips and is washable. As you point out there’s no way you could wash the actual topper yourself.

They are super crazy heavy, I will tell you that. Much much heavier than memory foam. I think the delivery guy carried it all up the stairs for me. Even so the thinner topper may be a good choice given the weight. If you compare the weight on website to a site selling memory foam it may give you...

Getting a better mattress did improve my quality of sleep. I was really struggling before, including with overheating from the memory foam mattress I had originally. Don’t think it has helped my ME but it’s one less thing on top of the ME. A topper really helped and I figure it is cheaper to...

I have a latex mattress and topper, from latexsense. It is good but it does degrade over time. It looses some of its support. I’d recommend getting one that is too firm at first as it will soften. I wish it would stay fully supportive as i need both good support but softness. it does not make...

I had AZ vaccine a couple days ago. I had disturbed sleep but otherwise no side effects. I feel more ill today but i think it is PEM rather then side effects of the vaccine itself. Arm didn't really hurt either. My wife had it the same day as me, healthy, and was floored by it, felt like she...

I’m sure you’re right, but as they have become popular more people like me who really can’t breath easily as it is let alone when smoke starts entering the house uninvited, it’s a big negative that I wish was less of a problem. The problem is when the air is cool in the evening, night, early...

I have a small one which works really well at cleaning the air. You can tell the air is cleaner just by breathing in that room after a few hours of it running. It won’t eliminate the problem of dust still being kicked up into the air by using the room but if there are particles in the air then...

It look like this might be a victory (at long last, something to be happy for) but we also need to think how they will read the new guidelines and how they plan to adapt to essentially circumvent the rules to continue what they want to do. No “fixed” increments of exercise allowed? No problem...

They are comparing a group of 12 with the alleles with a group of 28 without. The numbers are just much too small to be reliable and meaningful. My bet is it is just random, it means nothing.

I’m a little underwhelmed by this. Fatigue measure of 69.5 is not normal still and neither is just 5,589 steps. Can this be called remission? Improvement, yes, it seems so and perhaps that improvement is worth the risks with the drug but it doesn’t look like its fixed people to me, they are...