Search results

I donate to ME Research UK, and it's them that I have easyfundraising set up for. They communicate really well about who they fund.

@AliceLily :hug:

I'd forgotten about that thread! Would it be OK to point the researcher to it?

I raised concerns around HADS and Chalder with the researcher, after having submitted my responses. They acknowledged the limitations and said they're working on a new set of questions as it's something they realise there's a need for ME/CFS.

I started the process of applying last night, before setting this thread. Will probably continue today, if I can overcome the home IT hurdle I'd stumbled into. It might be naive but I was taking their intent at face value.

This is very interesting. I'm able to work part time but find pacing the cognitive exertion really difficult. Will follow with interest.

Will have a read of some of the links at some point. It interests me as I consistently test low for testosterone, either just in or just outside the lower NHS threshold. I have no idea whether it was low before falling ill with M.E. I did convince gp to let me boost testosterone with a gel for...

Like wise. However, I do think we should be careful trying to reading his tweets. English is his 3rd language and whilst he speaks it very well the subtleties of interpretation that we hang on might not be obvious to him. To me he comes across as a person who genuinely emphasises with pwME. I...

I've finally managed to convince my GP that I should be able to get the booster here (UK). It's taken some persuasion, I wrote a letter to them at Christmas outlining that the 3 Covid infections in 2022 had left my health worse and taken me to the brink of not being able to work (PT WFH). So...

ETA. This was supposed to be in reply to @Trish don't think my phone is playing well with the forum software. I contacted "my" one, North Bristol, and they already had a link on their webpage. But I think I convinced them to mention it as part of their Foundation course. When I did mine they...

I completely missed this at the time. Thanks for linking to the thread @Trish .

I think it's something you've posted on before and have commented on the difficulties of classifying people's severity. My issue with the above is that by all the metrics other than working I'm moderate. I can only work as I'm at home and can spread the hours out. I don't say this because I...

I think that's a great idea, it's a marvelous opportunity to gather data. I'm one of the 'lucky' ones able to work but these days it's only because my employer lets me work from home, part time to spread the hours through the day. Previously I'd been well enough to still go into the office, and...

Nicely worded. I hope that will answer the questions of most.

I've replied to a few trying to put that across, in what is a hopefully sympathetic fashion, but am finding twitter in general a fairly miserable place at the moment, so I've not lingered too long!

I've filled the questionnaire out (confused for for a little while by the trying to get a password reset from registering previously but on the advice of one of the team re-registered), and got an email saying I can spit in a tube. TBH, I've been really taken aback by some of the comments on...

When I attended the Bristol clinic in 2019 they were recruiting for an MRI study at Uni of Bristol. I participated off the back of the talk they gave. So Bristol, at least, has done that type of publicising before, and for something that was looking at physical issues (which might come as a...

@JellyBabyKid

No from me. I've a bit of a family crisis going on which is taking all the effort I have I'm afraid, and is likely to for the next week or two. I can put you in touch with someone else from the MEActionUK volunteer pool who is interested? They're already involved with an MP on me funding so are...

Bit brain scrambled today, but from what I've read and understood, I think it's a good idea. Perhaps best to not muddy the waters with what Alex is doing (with guidance from @It's M.E. Linda et al) and go for a separate MP with some separation. It's a couple of years since I worked on the...