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50+ age group only alongside those classified clinically vulnerable by the JVCI, ME/CFS patients weren't included in that before so I doubt they are now.

That is not enough people to approve for a population release. I know full well they didn't try it on severe long haulers or ME/CFS sufferers or anyone that is already ill. A vaccine for a disease that no longer circulates that has been gone for 7 months and we are now 3 variants down the line...

I roll over in bed I raise my heart rate by 15 beats. That is an impossible target to meet for anyone with any amount of orthostatic intolerance and it doesn't even come close to where my PEM limit really is. I guess its only one part but I personally found a HR watch extremely helpful in the...

I went through a few different masks before I found something I could make easy to fit. I needed a stronger metal strip in the in nose area and some foam under it to make it really seal well so I ended up using FFP3 masks. The difference between 2 and 3 is pretty marginal in terms of protection...

And yet The disconnect on understanding how little people can do on normal household living and yet they are throwing in increasing exercise as if its important for their recovery. Sure doesn't sound like they get it at all.

Indeed it took a lot of patient protesting to undo the damage that the PACE study did and expose its flaws, to get people such as yourself on a committee and then all that work to publish updated guidance. There is a lot more to do to, the bulk of hospitals are still using GET/CBT by the looks...

At least the 25% who are severe. I suspect most moderates have given up as well if they are a few years in, which likely means the majority of pwME aren't attending doctors.

I am now 151 appointments in and I don't have a diagnosis for anything. If you are paying for healthcare directly or any amount of copay you are not going to waste 151 appointments getting no answers especially if a doctor isn't right around the corner. I laugh when specialists talk about 9...

The thing that annoys me more than anything else is that we keep testing it, over and over and over. At what point will they accept the findings, because its been over 2 years now and we are still testing if long covid patients get worse with exercise and find they do. Do researchers not care if...

https://www.virology.ws/2022/08/09/trial-by-error-kings-college-london-still-promoting-discredited-cbt-get-deconditioning-paradigm/ Glad they got around to King's and Chalder. Will be interesting to see how this plays out since Chalder has been in open revolt on the new guidelines since she...

I was referred to Dr Chalder in Autumn 2020 and throughout the entire 1 hour interview she never asked about my symptoms, the entire thing was attempting to find some childhood trauma that was responsible for my illness. I had wised up by this point and already knew what ME/CFS was after my GP...

and Seem pretty incompatible in the UK populace of ME/CFS sufferers. Given that the vast majority of ME/CFS sufferers can't get any recognition from their GPs at all and the rest will be almost certainly diagnosed under the NICE 2007 criteria this seems to look like a set containing zero...