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Until the last couple of years I have always done some sort of exercise in addition to the usual house and garden activity. Years ago it was hiking and aerobics classes then it became uphill walking, then no hills. Now I save my energy for the basic essentials. Apart from less overall stiffness...

Alcohol makes no difference to my ME symptoms. I can't drink as much as I used to for the same effect but I put that down to aging.

My sensation exactly. I feel separated from the actual world that I know is just 'over there'. It's so near and yet so far., like trying to grab a slippery fish that keeps getting away. Added. As @JohnTheJack said in an interview way back in 2019, "I just want to clear my head ... I just want...

After the very bad cold or perhaps flu which precipitated me into worse ME, I haven't had anything more than a vague sniffle. After that bad one, I was still able to teach from 15 to 20 children in my house each week. They coughed and sneezed and I touched their violins and their hands...

Neither works for me but I've discovered that paracetamol has a synergistic effect with codeine, making it more effective. I know this because I have taken codeine extracted, out of curiosity, from some 10mg codeine/paracetamol tablets, and the codeine alone didn't do much. On the numerous...

It never ceases to amaze me how easy it is to be tricked into conflating physical and emotional states. When you feel happy, physical problems are easier to tolerate but they are still there. Pain is still there but happiness and many other things can distract for a while. They are like...

I definitely agree with this.

Every time I come across Ed Yong he impresses me more. What I particularly like about this talk is that he describes, without ever milking the audience for sympathy, how he deals with the psychological fallout of his previous job in a practical way, without sentimentality. There is no...

I've been vaguely aware of this effect in many physical and cognitive ways for a long time and I've told myself it's due to getting old but about two weeks ago I got the shock of my life. Occasionally I play piano accompaniments for my one remaining violin student and I've found that it frees...

I can't pinpoint an infection or starting point because it was so long ago (about 55 years) but maybe 20 years after I started feeling 'not quite right', I got a very bad cold, maybe the flu. The ME/CFS (if that's what I had) immediately became a lot worse. I never regained the same level of...

This article is spot on imo. Claiming that they won't wear masks now in an indoor space full of people, despite risking long covid, because it would somehow mean reliving being ""traumatized" and "because it was so painful", beggars belief.

Definitely PEM and hunger are related for me and rubbish food is what I crave. Once in a while, maybe once a month at the most, I give in to it and just eat biscuits and chocolate from mid afternoon. I don't feel great the same day but, without fail, every time I do this I wake up feeling...

Maybe once a week I am completely overcome by the need to lie flat, completely flat on a solid floor, not a soft bed. And definitely not with my legs up because it feels as though it takes a bit of energy to keep them balanced and in place and at this point I have no energy whatsoever left to...

Yes. It is absolutely crucial to play your cards very close to your chest in this stupid game.

I have a similar issue with longstanding hoarseness, periods of throat clearing, and a 'tired' voice which is worse when I actually am tired. I had a throat investigation many years ago which found a muscle spasm. The ENT surgeon stretched it and the relief was wonderful. It lasted a day then...

It's very unfortunate that there seems to be a general misconception that striving for excellence (the man who was a personal trainer for example) is the same as neurotic perfectionism. I imagine the comments have fed into this confusion among patients and listeners alike. Apart from that, I...

Thank you for your terrific blogs @ME/CFS Skeptic and especially for this one. When I read this paragraph I almost burst into tears. I've been doing all sorts of contortions trying to fit my experiences into the boom and bust pigeon-hole. I've diligently traced back my PEM periods ('crashes'...

(Just to prove it's not a joke here's The Long Read for the BPSM*: https://www.researchgate.net/publication/249996725_Distal_and_Proximal_Factors_of_Health_Behaviors_and_Their_Associations_with_Health_in_Children_and_Adolescents#pf3 *M for masochist)

Thank you @Hutan. I really appreciate all your analyses.

Michelle's comment describes me to a tee. The frustration I feel when I'm not able to do things is utterly overwhelming. I find it quite impossible to not be active until I come to a complete halt with PEM. Rinse and repeat. But while I can still recover to do it all over again, I don't intend...