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Your work on our behalf is brilliant @PhysiosforME :thumbup: As well as revising the NICE guidelines re: GET, they should also be recommending using heart rate monitors to help with pacing. It's the only thing that's been proven, (scientifically, and not just pulled out of thin air by someone...

@leokitten Thanks for filling in the blanks on Martin's story re:crashes. I'm moderate/severe and can't keep up with every post. It's easy to talk about pacing, but it's a nightmare to do even when you're in my state, and it was so much harder when I was mild and felt fairly OK until I...

I lurk about on Instagram, and I've been following a sweet German chap, a young lawyer called Martin. He's an OMF Community Ambassador. You can find him under the name paused_me. It's a cautionary Abilify tale. He had severe ME. 95% bedbound for nearly 3 years, with a J tube, very light...

I've slowly read through the Workwell info, in between sleeps and darkness sessions, and their links to research. Then into other research about lactate accumulating from anaerobic energy production. Too brain dead to have saved and to link any of it. Heck. The simplest thing I read, and...

Lactic acid everywhere no doubt. Brain cramps? Thank you so much for this :thumbup: I used to know this info, but it fell out of my inflamed brain. Which currently feels shrink wrapped. Because Ooops I Did it Again :banghead: My shins. Jesus. Like I've been forced to play hockey in PE with...

Thanks @ringding :hug: It's truly mystifying and strange! I think PEM symptoms generally don't relate to the actual exertion, so I'm very surprised there isn't more attention paid to what the mechanism is. It's wholly unlike say, arthritis in the knees, where excessive walking gives rise to...

I'm getting PEM at the drop of a hat right now - possibly because of a month in which I had a possible virus for a week, a week long orthostatic headache, then food poisoning. And a couple of migraines. My energy envelope is tiny. So I'm in bed round the clock, lots of naps and darkness, with...

@Mithriel did you take any hormone replacement? @Mij I've had to take Progesterone since I was 38 because I stopped making it, possibly because of taking the contraceptive pill. Only by using bio identical progesterone cream could my insane periods be controlled. I've wondered if I'll avoid...

"This review will present an overview of the menopausal transition as an inflammatory event, with associated systemic and central nervous system inflammation..." "Wearily I sit here, pain and misery my only companions. Why stop now just when I’m hating it?” –Marvin FML. Me, Female, aged 45.

Conversion disorders. Psychosomatic illness. It's just what doctors label patients with when they're too insecure in their medical knowledge and abilities to just say, "You're clearly ill, but I don't know what it is and don't know how to help you." So they make it the patient's problem...

Crashed. Response later. Or tomorrow.

Yep. I get you. And I'm trying to handle this in a foreign language too. The follow through is so far beyond me it's truly scary. My only hope is to find a doctor who has some idea about ME and have them assess my state of health and capabilities correctly. And submit their assessment...

Thanks everyone. Your responses are very interesting. @Kitty Wow, you are one of the very few success stories I've heard recently from home of people living happily on benefits. All I read of is horror stories of people having them taken away, or waiting years for reapproval. It's great to...

@Mij I thought Canada was kinda socialist - or is that just in comparison with the US? I guess nowhere believes sick people deserve real looking after. Wouldn't it be terrible if we had some quality of life.

Does any government give disability benefits to their sick and/or disabled citizens that they can actually live on? Maybe a lone disabled person living in a studio flat. Barely scraping by. Miserably. But I'm a mother with 2 dependent kids. They don't stop needing to live with you at 18...

@rvallee Well you come across as fiercely intelligent in reacting mode. I have the same difficulties. I can fire off a letter or a text in response to something, particularly a rebuttal, but actively thinking, independently, as I used to, actually hurts. It must use up too much energy. It's a...

Oh, thank you! I'm 45. Definitely could be an issue! I don't have any of my usual symptoms of low thyroid - husky voice, hair loss - but as you know there are a crazy number of symptoms that I could have, and might be concealed by my other health problems :laugh: It would be a great idea, and...

I do too! But usually it's accompanied by feeling dizzy, ravenous for sugar, and a desperate need to sit down. I've been experimenting with eating every 2 and a half hours - a few nuts, bit of banana, yogurt etc - but I still get them. Like I said, they're weaker if I've eaten, stronger if I've...

@rvallee How aggravating. I'm so relieved for you that you got your faculties back, despite your GP's lack of care. What an unprofessional jerk. I haven't watched TV news for a couple of weeks, so I've missed seeing tremors described by Covid patients. It's interesting. Costochondritis is...

Terrific, thank you @lunarainbows I'm having one of those days where I'm gaslighting myself about my health - couldn't have read this at a better moment. :hug: