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I don’t think that’s frivolous @ Trish - the complexity of activities in real life varies and that’s the sort of thing that people wonder about when filling in questionaires. Wrestling with that sort of thing that could potentially use up my cognitive capacity very quickly to that point where I...

A very worthwhile exercise @Graham. From my guineapig perspective I went through your list and had a total of 7 things I can do, but afterwards realised that it was unlikely that I would be able to do all those things on one day without payback. Each activity independently is different from...

Short article, two excerpts to give an idea of content:

Welcome to the forum @FicaR94! I’m sorry you’re not able to enjoy audiobooks and films/ tv. For me it’s the other way round these days as I can’t listen to much music. I miss it. Perhaps sometime you would like to share a video or two of music you enjoy in this thread...

Just what I need, thanks Ruth, bookmarked. your other suggestion sounds like a promising one for me too.

Further to my previous post about the seeming increase in cases due to change to the inclusion of pillar two testing, from the Gov.uk website here https://coronavirus.data.gov.uk/#category=ltlas&map=case If you click on the LTLA tab on the table further down you can find figures for the...

Reporting of cases has been changed in the last week. I haven’t checked and my memory is hazy, but basically previous public reporting in the U.K. did not include pillar 2 testing from the community, just pillar 1 ie hospitals, care homes etc. This is because pillar 2 tests are carried out by...

Perhaps notwhat you were thinking of, @Keela Too, but I remember these (one a thesis) by Nadia Ahmed from Leicester University on visual problems in ME so there might well be potential to objectively measure PEM effects on vision in patients. Sorry, Don’t have the function to reread for...

Thank you Jonathan.

I need help. Can anyone help answer this question? What is a sensible self isolation period for someone with what may be a mild case of covid19 to avoid onward transmission? UK 111 service and US CDC are saying 7 days from symptom onset. This seems short? (111 Doctors seem to be sticking to...

Just a little real life illustration: My daughter has caught ‘something’, and is in day 3 social isolation in her student flat. 7 other people live there. Of course she hasn’t been tested. So far it seems like a mild cold with predominately nasal symptoms and what may have been a low...

I have bought some bottled water sufficient for a couple of days. Our mains water supply has been failing without warning as much as 2 or three times a year for about 5 years. Under normal conditions it has taken anything from a few hours to all day and overnight to be restored. If this...

I often feel like I’ve spent the night inside a rotating drum in the mornings, but I don’t think that’s what they mean.

it’s actually not a bad thing to formally identify subjective outcome measures that are meaningful to patients lives. Edit bad joke deleted because it was bad

I agree that the GP readings may be more accurate but I think there may be value in home machines for some people and I use one at home. At the surgery my blood pressure always reads higher because I'm being scrutinised. My GP and I have taken readings using both his manual method and my...

Useful suggestions to think about already. Bubble wrap may be useful. My husband suggested that and a large tarpaulin over your tent. I don’t know what your tent is like but that would seem a low energy expenditure thing you and your sister could do quickly. That and insulating under the tent/...

Disappointed that they didn’t have a flower arranging cohort for comparison.

In the 21st century, in the middle of the 7th(?) largest economy in the world, where there has been a comprehensive electricity and water supply for longer than most people have lived, I still lose both utilities a few times a year. They can stuff 5G because I’d just like reliable basics, thanks.

I’ll need to watch again, but thank you Dr Van Elzakker for both your research and being so willing to engage with us patients. Thanks to you too @Andy for all your work on this. eta sorry, I should have written ‘engage with the forum’ as we’re not all pwme

My thought too