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Just to chip in regarding the wording, this is what I was asked to fill in earlier in the year for the Bristol CFS clinic. Highlighted at the start to compare against when you were well, if you've been ill for a while. Still refers to 'usual'.

I saw Dr Weir earlier this month. He's a very friendly/supportive man who listened intently. I believe that he has suggested treatments for some people where it may be of some help, but for me he didn't suggest anything new (which implies to me he is genuinely assessing each individual). He...

@Wonko hope they do the trick for you!

Bit of a zombie thread resurrection, but it seemed the best place to say... I bought a laptop tray to use, after seeing it in the ME Association magazine. It's been great! Today I'm having to stay in bed but am using the laptop tray and it's very configurable. Similar to the one further up...

Yeah, I understand that view. The counter is, I suppose, that if there are lots of no responses and the comments are ignored then do we end up with funding being pulled from the service? Is nothing better or worse than what is currently available. Of course I agree that the best outcome is a...

Thanks @Snowflake .

https://m.facebook.com/TMEPFUK/?refid=7&__tn__=C-R Can't work or how to embed it but the above is a link to The ME Patient Foundation thoughts in the matter, which seems to be not to respond.

I'm not really in a position to contribute to the survey but am interested in the info you posted @Sly Saint as I have my first 'foundation' course with the Bristol clinic next week. I discussed it with my GP this morning, saying that I'm prepared to go with an open mind but my concern is that...

There's a review of headphones in the Guardian today, might be of use to those looking to make a purchase: https://www.theguardian.com/technology/2019/jul/21/six-of-the-best-wireless-headphones-under-one-hundred-pounds-sennheiser-marshall-anker-lindy-anke

https://www.theguardian.com/science/2019/jul/20/lyme-disease-is-solution-on-way Interesting to read that they believe they are reaching a tipping point in the number of sufferers, that will enable effective solutions to be pursued. There must be many more people with ME, I wonder what 'our'...

@It's M.E. Linda , likewise for me. I most definitely had PEM with what was diagnosed as PVFS. In fact it remained a predictable outcome of over reaching myself through to my most well point last year. Since my relapse I'm not altogether sure I've had more than 2-3 days without PEM symptoms!

I didn't know you could do that, thanks. I've tried to avoid using them for years, as a bit of a protest at the low tax they get away with. However, my wife uses them and since I've been stuck indoors this year I've started to as well. This will at least alleviate some of my guilt! :)

The register button is under the menu button, top right. I agree, it's not very friendly to navigate!

@Eagles That was an interesting read, thanks.

Not sure if it's the right one, but there is a CFS factsheet accessible on the HealthShare portal here: https://www.healthshare.com.au/factsheets/ Just type 'cfs' into the search bar. The factsheet has an Emerge banner at the top and mentions the Gourlay Charitable Trust.

The registration email just came through. When you're logged in there is a "Support this Petition" button down the bottom right of the page.

@Peter Trewhitt it's not obvious. I assume you have to be logged in, like you say. I've registered and will try in the morning.

The only time I've ever used any was on a flight to the USA for work, >10yrs ago. We flew business class and they provided Bose noise cancelling cans. I didn't listen to music, just put them on and turned them on. The difference was phenomenal. Being rather naïve I was hoping we'd get to...

@Unable sounds like an excellent purchase! What sort did you get, there are so many to choose from these days (styles as well as different makes)?

I'd not happened across the HADS until filling out a pre-appointment questionnaire for the local CFS clinic. Some of the questions are ambiguously worded, in my opinion, if you put them alongside other questions regarding to fatigue, particularly "I feel as if I am slowed down..." and "I still...