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Minor quibbles- [Bolding mine] 1 Really disliking the use of the word mental there. My preferred word is cognitive but maybe that's a personal hang up? 2 do most people find their limits slowly widen? Or is it just when people initially learn to pace themselves? Does anyone else find that...

I understand some want to track this and comment and some find it distressing. I wonder if ignoring the thread might be helpful for some? At the top of the thread but below the S4ME banner & on the same line that shows the number of pages in the thread there are a couple of tools: Watch...

??? o_O That's gotta be taking the p.......! Creative approaches indeed. As if they didn't just make it up as they go along anyway. :mad:

I think @MeSci tried writing to her once before and got a brush off. Edit - which isn't to say it isn't worth writing another.

Absolutely. I have been honest in stating that I am speaking from my own experience. I am not in any way trying to stop anyone from looking into anything any further. I rather resent the implication that I have. It's the nature of the forum to discuss and share our experiences not simply...

I don't believe I said it wasn't. I'm certainly not saying I'm the only who is allowed to share their experience. As part of those decades of experience I have found it very useful to hear both sides of a discussion. For example in the early days I was part of an informal nationwide group. I...

It's obviously something you feel passionate about & there's nothing wrong with that! It's just as a patient who has been down that road & it was actually the person treating me who eventually pulled the plug after we tried various rounds of medication and treatment. My body simply did not...

As you say @Midnattsol we have different experiences. I understand this is a passion of yours and it's something I went through as part of initially trying to find a cure and then just hoping for management techniques. Apart from generally eating well & being as healthy as possible it is not a...

It took me a while to realize - I am more likely to react to an all natural product than one concocted in a lab. o_O Very annoying...and weird. Cosmetic, cleansers and what have you specially formulated for sensitive skin are nearly guaranteed to set me off. Some of the eco products set me...

:rofl: Compost it and start again from scratch.

Arguably they haven't the appropriate skill set to assess these patients effectively anyway.

Yep. We really need to start on a glossary or something so new patients or those who can't keep up with the slippery terminology can look these things up. I think they would argue it's not GET because the activity isn't necessarily something that could be considered exercise. However it's...

First a warning - because you're not messing about with different products it's easy to get carried away and do a bit too much. So you'll be tackling one task and then think ooh, while I'm here I'll just.... Also, steamers use triggers and if you do too much in one go I find it can trigger...

Using a steam cleaner gets rid of the need for many (but not all in my experience) household chemicals. It is cheaper in the long run and also greener. One of the ways you can use a steam cleaner (for those with dust allergies) is to close the doors and windows in a room and simply spray the...

I saw this: https://migraine.com/migraine-symptoms/sensitivity-to-smells/ Increased sensitivity to smell is an early warning migraine sign for me. I also experience the olfactory hallucinations they describe. Certain smells are triggers for me too.

I wonder if part of the issue with AfME et al is they just see/get input from the much milder & possibly more likely to be misdiagnosed "fatigue" end of the spectrum and the more recently diagnosed. The much milder or misdiagnosed won't experience the level of disability and symptom burden as...