Search results

@Sarah94 there’s also this blackout blind that we have: easynight blackout blind (without suction cups) (XXL 3m x 1.45m) it’s the biggest one we’ve found or if people have multiple windows, you can cut them to size. My lamp has similar settings, warm / white light too, although I’m 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 spokespeople are not getting this aspect right. I know the guidelines are a huge improvement already but there are gaps for CBT & GET lite to come in...

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 Shepherd said this. I’m worried about 3 things. He is still saying, that he is not against exercise per se, but that inflexible, graded exercise is...

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 thought I’d post them, and wondering if anyone else has other things that helped them a lot. I haven’t seen a thread for aids that help with light...

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 time focusing on other things including studies on experiences of harm through exercise treatment, forced exertion of any kind, and more specific data...

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 found this thread on the biology of covid 19 thread on S4ME):

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 and my symptoms reducing. But when they didn’t get better, they don’t have anything else to say. I did get an email from another person, a year...

@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 who are moderate as well. A tilt table test is extremely taxing, it would have been impossible for me even at my best, at the end of moderate/severe...

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 high blood pressure eg postural hypertension; and a subset will have lower blood pressure related to exertion / posture. This is different to standard...

They (pregablin, duloxetine, gabapentin and amitryptyline) are in the neuropathic pain guidelines. They’re not only for fibromyalgia and central sensitisation. These are tried once the usual ones like paracetamol and ibuprofen don’t work. And many are the pain medications available to those with...

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 didn’t need a diagnosis of postural hypotension to be enrolled in the study, as far as I can see? That medication is used to raise blood pressure, so...

@Jonathan Edwards it’s not controversial because those are the meds that are prescribed for any type of pain, and chronic pain, in any compassionate chronic pain or pain clinic in the U.K or GP clinic. You are arguing for us to not give medications to patients who have ME and who have chronic...

@Jonathan Edwards a lot of these are symptomatic treatment. Many of the medications listed for pain are used in Fibromyalgia (edit, and chronic pain in general) - various GP’s have prescribed most of those to me at one time or another to try for fibromyalgia / ME / chronic pain. Duloxetine is...

Came across this and it made me laugh! :p

@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 before I had to drop out where I said to the person that I wasn’t feeling well after increasing exercise / increasing activity, she just said to rest...

@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 had to drop out of the trial I was on. They said that it’s important I keep practising the techniques, take a rest period and then come back when I’m...

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 vaccines and medications, why not for this? I remember for the trial I was on, when I told them I felt much worse etc, they just wrote back saying to...

Posts have been moved from Guardian: George Monbiot 'Apparently just by talking about it, I’m super-spreading long Covid', April 2021 - Discusses ME/CFS and PACE It appears that in the U.K., they’ve forgotten their duty of candour when it comes to M.E patients. They never told me before I went...