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Ah ok. Unlucky for them it actually was you then.

This is either a very naive attempt at conspiracy by Bristol - vastly overestimating their ability to pull the wool over your eyes - or an hilariously slapdash cock up.

I was actually told straight out by a locum GP “we don’t like to give that diagnosis, it’s better just to treat the symptoms”. I assume this is relatively common, most Drs don’t actually come out with that it’s only because I was asking specifically if I had CFS so people are not getting...

Ha ha Jo “shopping bags” Daniels her BPS mafia name.

Anybody who bangs on about “true” causes is just resorting to a faith based approach.

Hold on a minute I thought focussing on symptoms, catastrophising, health anxiety is supposed to be what keeps us feeling ill. But if the researchers decide it’s a good idea to measure heart rate that’s ok after all.

IBS is clearly seen as a moneyspinner. They are now trialling that old ‘favourite’ amitryptiline https://www.bbc.co.uk/news/uk-england-51265389. Not a fan personally. Seems too much of a scattergun approach for tricyclics just as with CBT. If you don’t know what to do for someone give em...

im having various jobs done since moving in November. Today it was another workmen’s hours getting up time. I got up at 7.30 having had 5 hours sleep. Even with Melatonin I can’t usually go to sleep until 1/2 am. my normal 24 hours is sleep around 2 wake up 9 take paracetamol then wait...

this

Creative as in creative accounting perhaps a pseudonym for dodgy

Those congratulations are the type of stuff we used to get at my work for the staff website when I worked in HR. we used to ask senior management in our organisation to give us quotes we could use in support of our projects. I don’t think they are all unsolicited.

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.