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What stops me pacing well Unexpected energy demand later in day, plus needing to do more because carers so shorthanded, nearing retirement and many going off sick trying to fit in all the calls to make up Also need to listen to talking book to rest as mind too busy to rest What helps me pace...

Reaching up and lifting heavy things above head is worst thing you can do if you have orthostatic intolerance ie standing especially standing still gives you PEM. Hope it resolves soon.

I have same problem with BT in rural area. Cant trust the checker.

I havent needed one as had to get a new one at start of pandemic when old one packed up for lack of electronic parts but may do this year so will find out!

No never as couldn't go up without it. Now I roll up washing and hold it in my arm while bag containing ipad etc hooked over the arm - if cant do that, have to revert to bumpy big plastic bag as the Andrex one split and new ones have no strong gold top, or else ask carer to go and get it If...

But cfs clinics were mainly run by psychs and ran same risks

Hooray found the link https://www.independent.co.uk/news/health/nhs-therapists-patients-manipulate-data-b1908629.html

i think worth it if you go to an indoor crowded place

I cant access the link I had to an article some time ago in possibly the independent but unsure saying that cfs clinics in the uk were urged to manipulate success figures to keep their funding for the following year. so no wonder dropouts went unrecorded. has anyone got it please?

Some time ago there was a survey sent to CFS clinics in the UK asking if they followed up dropout patients to see if they dropped out because harmed, and over 50% of those replying said no, so no wonder no harm recorded. Has anyone a link to this please? I had one but cant access it on old PC.

Project ends on April 30, at 11:55 PM PDT gets confusing for different countries who dont have 4 days left because of time difference.

The main psych proponents have based their whole careers on it so that is why they are so resistant, they are in high places and also teach at med schools their biased views. Maybe for others it could be embarrassing to say ,whoops I have been giving my patients the wrong advice, maybe putting...

@Trish said 'What you describe sounds like it would be better described as a personal assistant rather than a carer.' I heartily agree. My carers are very rushed, in very short supply, and leaving because of low pay, and fuel costs as agency dont cover the fuel they spend so out if pocket, and...

i thought it helped but has anyone got a good source. Am in UK. cant remember where I got the first lot, possibly drMyhill online but when it wasnt there I got some from I think it was Bulk but it arrived very damp and hard to get out of the bag so some wasted. Only plus was it had a green...

I thought I read somewhere a problem could be the angle at which the tube was inserted in severe case of ME if they have bad orthostatic intolerance. I don't know if there are minimum safety standards in uk or if up to individual doctor

Thank you. I keep seeing where it could have been better and we had to finish quickly as her battery was low. It certainly wasnt my idea to put the NHS reference in - high time they included PEM, pacing and faulty energy system.

I have a deeper fitted sheet on the bottom and a flat sheet on top to save changing duvet cover as often. Re returning sheets after lying on them to try them out - did you have to fold and return them in original packaging @JemPD

thank you @Noir It took me to a webpage so not sure if needed to click anything on it. still cant get google translate to be online. Eg E-mailunderretning er nu slået fra Anuller

I think I signed but when there was an error, I ticked the hear anout updates box. Then got this long email but google translate not working as says no online connection so could anyone help please and tell me if there is a link to unsubscribe. TIA! Forfatteren til underskriftindsamlingen...

I saw this on twitter yesterday about a visit from his dad. If you are reading this, very much love to you all, Gary.