So it turns out the lamp that I recently got which I wrote about above, isn’t actually good. I thought it was dim; it turns out it was only dim...
@Sarah94 there’s also this blackout blind that we have: easynight blackout blind (without suction cups) (XXL 3m x 1.45m) [MEDIA] it’s the...
I have to admit I am worried because I know Dr Shepherd is part of the NICE guidelines committee, and it worries me if even our own charities and...
Sorry for bringing this thread up again but I bookmarked this to reply later as I feel this topic is important. I am worried that Dr Charles...
Hi, Over the past couple of years I’ve found some things that help my sound and light sensitivity significantly (at home especially). I just...
I filled this in a few days ago. I did not realise you can fill it in multiple times; I am happy though because I will fill it again in May, that...
This doctor has a response to that (these are public posts so other people who don’t have Twitter either should also be able to read - edit, I...
I told them I was dropping out at that point, but yeah their first response before was to persuade me that I could be ok to continue after resting...
@Medfeb the other problem is that by the nature of how the trials are done, it’s going to exclude a lot of patients esp who are severe, and many...
It does have something to do with ME because a subset of patients have dysautonomia, and a subset of those will have autonomic issues related to...
They (pregablin, duloxetine, gabapentin and amitryptyline) are in the neuropathic pain guidelines. They’re not only for fibromyalgia and central...
Yes I re-read it and edited my post! They provoked NMH at the trial.
@Michiel Tack just on two of those studies, in the study using fludrocortisone, all that was needed for the study was a diagnosis of CFS, they...
@Jonathan Edwards it’s not controversial because those are the meds that are prescribed for any type of pain, and chronic pain, in any...
@Jonathan Edwards a lot of these are symptomatic treatment. Many of the medications listed for pain are used in Fibromyalgia (edit, and chronic...
Came across this and it made me laugh! :p [MEDIA]
@Barry there are similar statements in the manual I have too. I agree I think it is medical negligence as well. I remember there were times even...
@Barry from my experience, as I just went back through my emails at the time - I had said that I was very unwell and described my symptoms when I...
Yes the trial I was on was after 2015.
There must be a way of getting this recorded - why is it so hard though? I’m genuinely asking because if we can record adverse effects for...
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