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Is there a thread about the media reports about the guideline quite a few quoting White and now letter in Daily Telegraph from always controversial retired doc Michael FitzPatrick saying he agrees with White saying 'This has been welcomed by ME activists who are delighted that graded exercise...

Is the word Graded Activity management mentioned in the new guideline? Bedford fatigue clinic website just changed GET to GAM. https://www.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service

NB the Andrex quilted pack I used has a gold reinforced top. I opened another today, also Andrex quilted and the top is not gold or reinforced so doesnt work as well though the old one is still going strong so dont need a new one. I wonder if they are using less plastic to save the planet

Btw I already had a bag that fits over the arm of stairlift to carry up eg hotties, ipad etc, but was looking in vain for another one to put bits of washing in that fits over the rather fat arm and doesnt keep bumping or catching on every step. Then found the solution recycling a 9 roll toilet...

Thinking it over, a bit worried of talk of legal proceedings if dont follow guidelines as we dont want legal proceedings if docs dont follow the current ones so important for them to use clinical judgment. too crashed to follow through so just an observation

LocalME continues on https://groups.io/g/LocalME And ME-letterforce too.

Whoops sorry meant @Louie41

thanks, Linda. I think it helps to raise awareness as well as funds Many longer term than I am, sadly, especially those who got it young.

Thanks so much for asking. Sorry I dont know as first time I have done it but just looked and cant see anything about paypal on the justgiving help. Dont know if anyone else knows a way.

To er … celebrate the 25th anniversary of the fluey virus that soon became severe ME on 27th June and my birthday on 22nd, I am fundraising for ME research UK. I posted early so friends who might otherwise have got me a present could donate but was blown away when it reached target in a day...

both David Tuller and Brian Hughes demolish the HRA claim as it didnt vindicate the study but I am trying to work out what he means by refuted by MRC. Is there a reference?

They are usually asked about life history, history of their career, key moments in between choosing discs, and why they chose it.

Moved from the Psychologising Long Covid thread Just for info, Simon Wessely is on BBC Desert Island discs this week tomorrow 11 am, repeated Fri at 9 I think unless time different for Good Friday. Don't know if can bear to listen but wd love to know what he says -sounds like part of concerted...

I found it hard to use a laptop lying down as have to reach forward to use the keys. Got a separate keyboard and mouse but hard to negotiate all three. But am at home in bed not trying to work.

My doc told me yrs ago I needed passive physio and physio came - had to educate her about ME and PEM - but she explained it needs to be done daily and that if I had somone who coukd do it she could show them what to do, but I live alone so not on.

She took over after Alistair Millar,s appointment in 2010 and the Pace trial had been done and results out in 2011, and after she took over her son got ME so think she has understanding.

I show it to carers etc and say this girl is not severely affected and can do far more than I can but look how it has effected her.

Frances Ryan has said this before too that you need 'COMPLETE REST' without making it clear it is not complete bedrest without moving a muscle unless that is all you can do, but pacing self, listening to body, not pushing self.

there are the very severe patients totally bedbound, and severe unable to use wheelchair but can eg manage to get to loo. So many shades of disability.

the Moderna vaccine needs -20 - wonder if it will be ok for housebound