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I had someone ask me- Is that you really can't work, or just that you're not able to find a job you can do that isn't beneath you? Slight paraphrasing but more or less that. The thing is they actually meant well and were genuinely trying to understand. I pointed out that, although I had a...

I had a proper set to with the DWP during one of my assessments. They were really messing me about and doing their utmost to refuse a home assessment. It went on for months, for every step forward a new obstacle was thrown up. Finally, a quite nice human on the phone went to ask the doctor...

I suffered migraines with aura pre ME and though I would agree that headaches are a symptom of ME, I am not convinced my migraines are necessarily strongly linked to my ME. In my personal situation I think hormone levels have a much stronger effect on frequency, severity and duration. Hmmm...

Mixed. I didn't even get to apply for it for well over a year. They kept insisting I wasn't entitled to it. So when I finally got it it certainly felt like a battle won. Miserable. My parents would have been absolutely horrified to discover I was on benefits. It's a bit of a cultural thing...

Yeah. Much as I loved driving an early, cold miserable early morning trip to work on Monday morning isn't something I miss. The snag with not having the Monday morning feeling is that it also means I miss out on that Friday afternoon, weekend feeling. Often commonly referred to as Poet's Day...

I found this one of the hardest lessons to learn. I thought if I couldn't work harder or for longer hours then I just needed to "work smarter" and adjust my approach. Looking back I think there was some unconscious arrogance that I was in control.

I really don't think so. Some people like a bit of stress and pressure. I think we all have different levels that we're comfortable with. ME aside, I perform much better under a certain amount of stress. Too little and I tend to get a bit bored and don't manage quite the same level as...

Something that really annoys me - People with physical problems that aren't always easily understood, managed or cured such as pain or fatigue are effectively being told to simply live with it. Adjust your attitude and accept it, there's no reason for it to affect your life significantly...

This is definitely true. Even when much more mildly affected a yoga teacher, thinking she was helping me by getting me to move into and out of asanas far too many times, struggled to understand when I told her, 3 reps tops- 2 of which are warming up to the pose and one remaining in it & I'm...

Don't forget Prof Carson a psych also based in Edinburgh.

When I was practising yoga and learning about different breathing exercises some of them wiped me out very fast. I knew some other people with mild ME who also practised yoga & had tried Qigong and most found too much. Yep. I can't understand why they can't understand that. It's like two...

It also might depend how and where you placed it. It might bring need to be in very close contact with your skin for the whole time you wear it rather than just brush against it. As others have mentioned, where you place it might be important - maybe taping it to your skin under the waistband...

There was an EU - might have been long enough ago to be EEC- regulation introduced addressing nickel content in jewellery. I couldn't wear costume jewellery at all, 9 carat gold or silver earrings. I found I could wear jewellery made after the new regs were introduced and now happily wear...

I should imagine if there's frustration and worry about homework, it's more the worry that she won't have the physical energy resources to complete it thanks to ME than about the actual homework itself. To some people that might seem to be splitting hairs but there's a world of difference.

I'm not entirely sure I still have. :( I know I couldn't pursue a career with the same level of energy and that was so demanding but there's still a little part of me that yearns to do something. Even if it was an unpaid something.

I really struggled to work out what was going on - blooming brain fog didn't help. Pre ME my typical exercise included a little horse riding - I was just getting back into that, swimming 2-3 times a week depending & strong muscle toning workout 2-3 times a week depending. Generally, I...

When I was diagnosed I was still working and continued to work for a good 6 months or so. The consultant used the label moderate and then severe. I don't know if this is typical for all ME patients in the UK or if the severity label was applied to indicate a level if severity and functioning...

This is yet another aspect. I was only able to cut back enough because I was fortunate enough to have a partner to help me. I now feel my attempts to exercise and improve my fitness added to his burden unnecessarily. This cr@p advice and articles like this don't just affect patients but also...

I think there are also very different types of exercise. Occasionally, if I'm up to it and can pace around it, I'll go for a gentle walk. Not for the exercise but for the sheer pleasure of being out doors. There's no plan to "exercise" or improve muscle tone, fitness levels or any of that...

My rule of thumb -the longer the list of things something is supposedly good for the less effective the treatment is likely to any for any of them. Why not just say it's the secret to eternal life (or earnings for the therapist) and be done?