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I know that they are fundamentally the same for me because i cannot do physical and cognitive activity at the same time... if i'm going to read/think/write/have a conversation, i have to be laid down/reclining with legs up & head/neck supported, otherwise there just isnt the juice to fuel both...

A very good description and one which i dont think anyone can fully comprehend until they experience it.

Indeed. What i can say for sure is that when well rested i can lift a 4 pint bottle of milk - it feels like hard work but it's entirely doable. In a bad bout of PEM not only can i literally not lift the 4 pint bottle - it's as if it now weighs 20kg - but i even struggle to lift a 2 pint bottle...

Just as an aside, PEM being different after cognitive & physical exertion is not the case across the board.... For me PEM after too much cognitive effort is identical to that experienced after too much physical activity. The crash is identical after laying in bed reading for too long as it is...

That made me cry, my lovely life vanished in 2002, it really was so very lovely. I do hope that for you Paul, and all the thousands of other long haulers, that it turns out to be the former

@Trish its brilliant that it got published there, well done, i hope it makes it into the print edition :hug::thumbup::emoji_clap:

Well taking that broad view is all very nice, but those changes are completely invisible & frankly non existent to the patient experience in everyday life, dealing with health professionals & benefits agencies. I'm afraid i havent been able to read all the details of the relevant posts but i do...

yeah :confused::rolleyes::D

yep. all the essentials/basics, just a little extra on my order every week. I tend to always have a stock anyway, in case i'm too ill to manage & carer off sick or something, but whereas i had a couple of wks worth of food, now i aiming for roughly a month's worth in the cupboard, not there yet...

What also gets me about all of these 'treatments' is that ok, lets say they do actually retrain the brain not to alert you to certain stimuli (i dont think they do but lets just for a moment assume that it works - well nobody has proven that the signals it's currently sending, are faulty. If...

good idea. I think it's a really good scale, but for me the distances able to walk seem much further than expected in line with the other abilities at that stage - for example 20 mtrs is a looong way for someone who can only sit up in bed for an hour at a time? Certainly i couldnt walk that far...

good idea but the read an email message should say read and understand - i can often read each word accurately but have no clue what the message of the sentence is. Yes i think including the PIP phrasing and spelling out what 'normally' means, would be key. @Graham as Simbindi keeps referring...

This paper is one of the most staggering examples of projection i think i have ever seen. It is almost spectacular in it's illustration of the dearth of self awareness & humility among many therapists. Indeed. edited - to make it clear it the paper i was talking about - not Arnie Pye's quote!

Oh my God, she does not!!??? :eek::eek::eek: Thanks Jen, thanks very much :banghead:

Good grief dont refer the patients to a cardiologist - they will think they are actually ill! And certainly no cardiac MRIs.... the mere ordering of the test will indulge & reinforce the 'aberrant illness beliefs' in PwME

Very interested in replies as i also have to option for contact with someone fitting 2b

:eek::(

Thank you so much for all the hard work over many years that you have put in Suzy @Dx Revision Watch it scares me to think where we would have been without it, you have made a difference to the lives of millions, and it scares me where we will be when you take your very well earned retirement...

thank you both

I told somebody yesterday (when they had classic covid symptoms but test came back negative, that the swab testing for active covid 19 in the uk isnt 100% reliable so they could still have it, and that the test they use has a significant false negative rate. They responded as if i were from the...