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What AfME quotes? Do you mean the ones from Miller? My bolding.

This i must have missed that, do you recall where can i find it? sorry if it's obvious i not well today struggling to keep up. In general i feel still very problematic & in danger of being re-written - see on the other thread @Tom Kindlon share of Bart's comment on the draft for the previous...

My sentiments entirely Mij, I'm not anti-vax by any stretch of the imagination, but anyone who just takes their word for it is a bit naive iyam. It will need to be seriously scrutinised. I hope that need for scrutiny & interrogation of the rsearch will not be lost in the relief and urgent...

Yes. I have a very pessimistic view I'm afraid, & will just be relieved if despite everyone's hard work it's not essentially the same as before (only worse because once it's reviewed & re-endorsed it will be harder to argue against). Cant tell you how thrilled i'll be to be wrong :) However i...

totally, totally with you on that.

It doing my head in, there is a very wide ranging symptoms PwME are experiencing & its misinformation & ignorance and that _ _ _ _ _ _ _ stupid CFS name that makes any of them even dream that ME =fatigue, so if you dont have fatigue you cant have ME...

Very common in UK. At least i have seen many many many accounts of such things. So common as to border on being normal, standard treatment, where if you escape abuse it's something to report not the other way around. My own experience is similar to @Invisible Woman but not as bad, & i consider...

I actually felt quite scared when i read about it this morning, scared of losing people i love. Do you think it will be possible to contain it? or are we basically buggered? BBC story for anyone interested https://www.bbc.co.uk/news/world-europe-54833459

wow :emoji_angry:

I do wish he would proof read his blogs there are several missing/added words Is this supposed to have the word 'effective' in it? it doesnt make sense.

my mother did. Hated taking tablets thought they were all poison and only EVER took 1 of anything.... asprin, paracetamol, ibuprofen. Acted as though taking 2 was basically overdosing & 'if you take too many you'll become immune and they will stop working'. She said it always worked 'oh no one...

and you'd know that how, exactly?

yeah :rolleyes:my carer does it... but she's so stressed by the whole situation I cant really point it out without getting my head bitten off lol. I cant give her a wide birth, but she only wears cloth ones outside... She wears an FFP2 indoors which are shaped & i wear one all the time i in...

Gosh that awful checked fabric with movement in front of it.... ugh it's impossible to look at but the finished mask looks a good fit, it it a good fit over the nose. I see so many masks perched on the end of people's noses with huge gaps either side of the nose - almost a waste of time wearing...

Couldnt agree more. I realise this wont be the case for those at the milder end perhaps, but for me the notion of watching tv as something to include in a recovery period, rather than an exertion that has to be recovered from in itself, is a wild fantasy. From some recent activity diaries i...

The thread has moved on but i just wanted to post this link to Ean Proctor's story (the boy put into the swimming pool) in his & his parents own words Doesnt mention Wessley i dont think but it's clear that the pool incident was a traumatic one (unsurprisingly). As i understood it (sorry i...

They are exactly what i was thinking of @mango thanks so much yes the spatial & proprioceptive stuff is so weird - its one of my most pronounced & noticable 'only significant while in PEM' type symptoms. Also one of the symptoms that imho makes an utter nonsense of the 'it's deconditioning'...

when/where did he say that?

Hi yes am keeping a journal - thats all in hand - have looked at a few & am modifying for my own use. I just recall seeing people post detailed lists of ME symptoms recently, on social media, really long ones - in discussions/comparisons between long covid & ME. So i was hoping someone here...

I'm trying to track my activity & symptoms to see if i can pace a bit better after a recent unexpected deterioration. I know it will sound daft to non sufferersm but i cant remember them all - which is a symptom in itself. I know i have seen many lists of symptoms in the poosibility of ME after...