There are some professional careers that would be well suited to some pwME if they had the right skills. The trick is in picking a type of work where you can still maintain reasonable cognitive function even with brain fog, because you have a natural aptitude for it.
My friend's sister is...
I'm guessing you only need to be a member of a special academy if you have particular sorts of ideas, since everybody else makes do with buses, pubs, and WhatsApp?
I do too, but forget to mention it as a symptom. It's been there every day of my adult life, so I can't even remember not having it.
I think the 'poisoned' feeling may be different in me. Some people seem to experience it with every PEM episode, others get it whenever they have a more severe...
I agree. During activity started from a well rested state, my fatiguability symptoms are similar to those of 'flu, but aren't as severe at the outset.
Activity attempted during a PEM state produces symptoms just like 'flu. The pattern includes that odd stage during recovery, where an activity...
Great work, everyone. I've struggled to follow the thread because there are so many figures and graphs in it and I don't really understand them.
I agree that the throwing out of one participant's results because he was smarter than they expected looks shonky, but I wonder if it's a distraction...
I agree.
I have friends whose lives were more stressful than mine in some areas—bringing up children, or navigating difficult relationships—but they didn't have to survive a 40-year working life with ME.
We're all very different.
I haven't, but it's because I see a lot of issues with the approach but am not knowledgeable enough to suggest otherwise. I suspect their working methods are so inflexible that it'd be a waste of my time anyway.
My worries include:
That they're not starting from ME, they're starting from a...
It sounds unfortunate, but I think this is a recognised term for a collection of responses to acute illness, some of which are the result of unpleasant symptoms rather than behavioural choices.
I imagine so, but their business is to rake in lots of money for publishing stuff on their website. As long as institutions are prepared to pay it, they'll keep charging it.
And NICE knows perfectly well that someone will post it on Twitter anyway, for people who can't access it via institutions.
I did myself a lot of harm by trying to work full time. Self employment was much better, and meant I could work on a project for three to four months, then take time off to recover before I bid for another.
I had to give it up after a while, though. I live alone and couldn't support myself on...
From @MSEsperanza:
Earlier in this thread I think someone asked about the possibility to leave rapid responses both on the White et al Anomalies paper and on the response by NICE authors Barry et al.
Also I think someone asked about reactions on social media or media coverage etc.
Apologies...
My understanding is that, if you're unmasked and you meet people indoors, it's mostly down to luck. There are too many variables you can't control to make it possible to manage (or even calculate) the odds.
Seeing people outdoors, and/or wearing a good mask, is different. It's not impossible to...
From @MSEsperanza:
Just would like to add my huge appreciation for Tom for what he is and does. Not able to write much, but others, both in the comments collected by Rob and members here on the thread expressed it so well.
Thank you Tom.
Thank you Rob for the marvelous initiative.
And thank...
I doubt it. If you go into shops full of people when you don't really need to, you're probably just exposing yourself to infection unnecessarily.
If you do pick up a virus that you've been inoculated against or already have immunity to, you might have no symptoms or only mild ones, but it's...
ME patients and everybody who knows them and treats them can immediately see the error in this framing. Why is it so hard for doctors to explain that the signal can't be overridden, and "want" doesn't come into it?
I didn't "want" to have a thumping headache all day yesterday. I'm glad NIH...
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