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Had a quick look at the emerge leaflet linked a couple of posts up. This is very much a straightforward common sense product along the lines i had in mind. The only difference is I was going to add in some people’s personal experiences. I think it is probably a waste of everyone’s effort to...

Thanks. I had forgotten about the thread although some of the points had registered notably the one about the definition and pacing yourself. I need to take a look at the WAMEs leaflet.

Good point. I think I did look at what ME Association have on pacing but I can’t remember how useful it is. I do think there’s a lot more of a personal aspect to it than the mechanistic planning your day out hour by hour on paper or an app gives the impression of. I will take you up on...

I’m thinking of giving this a go. Not rewrite. A different product. If people want the NHS clinic manual they can get that from them. a short piece a lot less dense. Short sections. Maybe some actual people with MEs summary of what a day or a week looks like for them.

Nice one

@Natalie i don’t know if they would be able to help but ME Association now have a collection of pictures of people with ME they use maybe worth contacting @Russell Fleming

The previous version was written by someone not sure if the same person from NHS clinic. It seems rather than do something based on patient experience they’ve dabbled with the existing material and had it reviewed by some patients. I think they’ve missed an opportunity to meet the need for a...

Bonne journee a toi aussi

I think I’d slightly disagree about the cognitive stuff not being able to go under the radar especially in mild ME people. I had/have insomnia (better managed with melatonin) and I attributed all my concentration issues to poor sleep.

Yes I’m better writing and editing my own text than trying to dictate. Interestingly I had a job years ago where I went from typing my own stuff to a team where they used dictation and a typist. I had to write it out then read it as I couldn’t do it in my head without seeing the words written...

There must be some complaints procedure and if not maybe if you think your member of Parliament might listen write to them??

https://www.bbc.co.uk/news/uk-51221915 Various people have been are being tested in UK including Scotland and Belfast

Mmm there are some changes in emphasis but it very much refrains from any explicit criticism of the NHS approach. I don’t have the energy or inclination to highlight detailed criticism at this point. I feel it is weak on heart rate monitoring basically leaving it to the NHS guy to say it...

I wasn’t a child but I went undiagnosed for 10 years due to a combination of having a depression diagnosis and my regular episodes of viral illness not being severe enough to be picked up as post viral fatigue. If you’re not acute onset it is very easy to go undiagnosed. I’m sure this could be...

It’s great to get help with design and sorry to throw in criticism but just pointing out that the background on this one is rather busy and using that for the text makes the characters a bit fuzzy to me. Given there are known visual difficulties with ME perhaps the text can be reconsidered...

Hopefully this is the start of a trend ETA sorry to jump in with sarcasm couldn’t resist :whistle:

I hope some BACME people will be attending they would benefit from having their eyes opened to the big picture.

Interesting post. I’m mild/moderate ME and I find whether to bother with supplements quite difficult to judge. I used to take quite a few including carnitine and I’ve cut down to ones I’m most certain are useful. Carnitine is on ive stopped and will try again.

Thanks I’m pretty sure I’ve not got POTS. My orthostatic intolerance kicks in after ive been standing still for a few minutes rather than immediately on standing. And if I’m moving rather than queuing I don’t get that overwhelming feeling of needing to sit down

Ok thanks @Marky definitely not something I’ve heard of being checked out in the U.K. I’m already on hypertension meds including an ACE so not sure anything could be done. I’m going to check out my own lying sitting and standing BP before going for my annual hypertension review and consider...