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I've shared the survey details on the local ME Groups. There's been a reasonable amount of interest so far. One question, is there anything that can be done by people to improve the likelihood of funding being granted?

The ME Association, Invest in ME and ME Research UK are all listed as options. Thank you for posting the link. I had seen the logo on the ME Association webpage but hadn't investigated further.

Thanks @Trish . I'm lucky that I get full pay for a year, but I've only a few months left. When I was first ill (2016) my improvement was fairly rapid and I got back to work relatively quickly (3mths ish) so this has been a bit of a shock. I'm 45 so can't see me getting ill health retirement. I...

I missed this thread first time around so it's been interesting to read. Not sure I've been ill long enough to decide, but based on current condition I've gone for option 2. The cycle time is loooong though. From 1st being I'll it was almost three years of improvement to get to 80%. Then a...

The MEAction survey had a few respondents (8) but not all answered all the questions on the service so the data is not particularly useful for drawing one conclusion of another. However, it is here if you want to have a look. Select the Pymouth service from the dropdown on the top left. Best...

The size of your screen shouldn't really affect it. I don't know what to suggest, sorry it doesn't work for you. Hope you feel less caboodled later!

I'll be honest, I don't know what was done to publicise it as I wasn't involved then. I'll take that back as a comment to inform any future surveys.

I'm also using Windows 10 and Chrome and it's presenting fine (also in MS Explorer/Edge). There's some other factor involved then. You'd think that basing it on a Google product would be a good way of ensuring visibility across multiple platforms wouldn't you? :rolleyes:

That'd be quite a lot of work to produce unfortunately. The idea is that it allows the regional groups to look at the specific issues in their areas and draw comparisons if needed. You're correct, it's another way to view the data, to allow people to understand what goes on in their local...

Unfortunately Google Sheets only seems to present the graphs in certain browsers. We did try various options but ended up having to leave it. If you don't have access to a laptop then it seems like pot luck as to whether it'll work on a phone. Can't really give a summary as it's configurable...

There's a lot of engagement going on by the charities for the NICE review. I'm hopeful that we'll end up with a better set of guidelines. It's a shame we've got a year to wait to find out though.

MEAction performed a survey earlier this year, gathering data to submit to NICE for their review of the ME guideline. I think there’s already a link to the full report on the forum but just in case, it can be found here...

My pain is in the muscle, and worse when in PEM. On 'good' days it's not present at all. At the moment I just take ibuprofen when it's bad, and that takes the edge off. I did, however, take Amitriptyline for a while, primarily to help with sleep (semi-successful) and found it really knocked...

Done, although I'm not sure it's particularly informative I'm afraid!

When I was mild, and within the first 12mths of falling ill, I would get a reoccurence of the terrible sore throat that I had with the virus which I think triggered it all. Sore throat doesn't really do it justice, it was like tissue between my right ear and that side of my throat was bruised...

@Simon M thanks for highlighting you've a Facebook page. Now following. :)

@Simon M using RHR is exactly what I had been doing before this relapse. Not as the only guide but as one of the main ones. For some reason I crashed badly so am interested in if (with the limited other data I have) I can find any other signs. I hope to recover enough to get back to work part...

@Mithriel thanks, I wasn't aware of that one. I've used something similar on github for intraday HR. What I'm trying to do at the moment is look at daily measurements, RHR, time in different HR zones, steps etc. as I have data from early on in my recovery from when I was first ill, to being...

I'm very interested in this, and am trying to process my downloaded FitBit data to look for signs of this current relapse. Struggling a bit with processing the JSON datafile format that they use and getting it into Python though. I've not done any programming for years, and my experience was...

I agree, it's something I've been trying to find information on. After first being ill I slowly improved until the start of this year when I went from being able to work fulltime and being 80% of normal to housebound. In the last few weeks I've had the first slight improvements but realise I'm...