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That is a very good description. I don't know whether it's caused by exceeding AT, (is that proven?) but its a good description nevertheless xxx

this me too!! and because of this I see many more patients using it too nowadays - I guess they more recently diagnosed. And even my family have started asking me 'how is me fatigue?'. 10 yrs ago they never said that, that asked me how ill I was feeling. It drives me bananas. precisely

good point @Hutan I also have all over body aches & burning. I should have said without the pain only at the infection site. Also interesting what you said about the altitude, ive not experienced altitude. (my bolding) Agreed. But yes no mucous, I do get very nauseated though & have horrible...

My bolding. Absolutely James. What you describe is what I do refer to as 'flu-like' though. What does 'flu-like' mean to you? In my experience 'fatigue' is not intensely uncomfortable in the same way. Although someone who's never felt both things would i think say that being exhausted is...

I'd say yes, certainly in my experience, when i'm not good I can read & understand a short paragraph or a question that i've read/been asked before, but show me something new & i'm useless.

I'm astonished by this. Thank you for sharing. I'm disgusted that you were treated in this way, & yet I find it strangely reassuring - that if they can mistake even you for a hypochondriac, then perhaps it wasn't personal all the times they did it to me, & was perhaps less about my failure to...

In my youth I was a regular cannabis user. And I got orthostatic intolerance, dizziness/ightheadedness, brain fog, visual disturbance, very poor balance/coordination etc, pretty much every time I took it - they're pretty standard side effects. Personally I wouldn't have thought that they...

where is 'imperial'?

Indeed. Land previously grabbed by 'evil spirits' etc

Yes, I couldn't agree more. I feel quite desperate about it sometimes. I keep saying it but I feel like i'm 'shouting into the wind' sometimes. But lots of people with ME/CFS dx will then say they do feel overwhelmingly tired, & seem quite happy to use the term 'fatigue', so the point seems to...

yes me too. For me it usually takes 4 days. For me it's the lack of any fluctuation whatsoever with flu/virus... & it's on day 4 of thinking 'wow I really ddidnt think i'd overdone it but here we are in PEM anyway'…. day 4 of continually rather than intermittently alternating between sweating&...

innit… yeah innit :D

Improving sleep.... They really do think we are all as thick as 2 short planks. I mean would it ever have occurred to you that if your bed was uncomfortable you might need to change it so you could sleep better? That's not obvious is it?! For goodness sake, i'd have worked that out aged 4! I...

my bold It feels exactly the same. To the extent that I have mistaken flu/infections for PEM a few times. I only realise that it's actually flu/infection when it doesn't fluctuate at all for a few days & I decide thats weird & therefore take my temperature.... or if I get a bad cough That...

this. I have had people suggest that I cannot possibly be as ill as I & my carer report me to be, because if I *were literally unable to stand up, for long periods of the time, & having to crawl, then I wouldn't be 'allowed' to live alone… because what if there was a fire.... But I feel...

Wow talk about starting the gaslighting early, it's on the first page! So if the person ends up worse instead, because of your misguided interventions, it's because they don't have patience, determination or courage. "other symptoms include" 'Post Exertion Exhaustion'. For goodness sake It's...

How are you doing @debored13 ? I hope you're managing to stay warm

ahh, yes, so that then puts the onus on them to prove objective benefit? crikey, I can see how our arguments have been so easy to dismantle & ignore. If worsening of symptoms is not considered 'harm' in & of itself, & there are examples of conditions in which worsening of symptoms is in the...

Thanks @Jonathan Edwards I think I'm beginning to see the complexity. So patients saying ''X' makes me feel worse", actually can be seen as not counting for very much - because it's assumed that it's in the context of benefit? So how on earth can one counter that then?