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My own view is that CFS doesn’t exist in its own right. There is CF which is a symptom and ME the disabling disease (where the inability to function is not generally fatigue related, but PEM related). Then there is “CFS”, which is really CF, with “syndrome” added at the end to make it...

It would perhaps be good if PACE authors looked at their data again, and noticed that ME patients were dropping out more frequently (or something else indicating ME folk responded less well to their therapies than the fatigue cohorts) and so perhaps then they might get themselves out of this...

I’m not yet blocked, and got an interesting reply this morning. Screen shots as I’m not sure how to link via my phone. (Edit, sorry images seem huge, not sure how to sort that ) Edit to add link

I just checked. Apparently not. I guess I should have properly tagged him in the Tweet.

:wtf: He he! I think it was good to post it quickly. I’ve used a screen shot to point out the ME/not ME inconsistentency over on Twitter.

Very interesting. I haven’t had as many tests as you, but PEM is less horrid now (& with shorter duration consequences) and I get less out of breath doing stuff! Not a cure, I still need to pace carefully, but it is so worth the effort of eating weird! :laugh:

I have found that I don’t do well with sugar in my diet. I have largely cut out sugar and recently also most carb foods from my diet (I still eat veg - except root veg - so I still get fibre which is also technically a carb but human guts don’t digest it, so it’s fine for me). It took a bit of...

I haven’t managed to keep up with screenshots of Tweets and am now without my laptop til next week. I will try and do more then (just on phone now). Maybe someone could grab important ones in the meantime- like that “block you - kind regards” one.

That was SWessely this is MSharpe

Oh. So I thought he was claiming that PACE didn’t change anything much regarding guidelines.

Pity no mention of PACE flaws, but still I think enough to help those new to MEbe cautious about GET

Curiouser and curiouser!

I think these work if you have 2 or 3 people who know each other. But for a big group, with difficult issues to discuss, I think it would not be satisfactory. Nothing beats face to face

I would love to get involved. But I can’t really see how. I definitely can’t fly on the same day as do a meeting. But for the Jan meeting NICE would only fund one overnight. (The other overnight I needed was funded by Hope4ME&FibroNI.) Then last time my husband travelled with me. NICE...

I don’t understand why they use the venue they do. Surely a hotel beside an airport would be easier travelling for all. If I were to go I must fly. If folk needed an overnight they could get a good deal by bulk booking. Train access would also be good if right airport used. Central London is...

This!

I saw that on Twitter, and thought it was not the angle I was expecting to get picked up, but you know it might get people to look..

All told I think this went very well. I've just sent an email to Jim Shannon to thank him for his contribution and to express optimism for the future. I think the Minister's response at the end was as much as we can expect at this stage. He did seem sympathetic, and hopefully he will now go...

All these different speakers, each with a different style, each with a message supporting the patient perspective, is VERY powerful.

Is MS back-pedalling? Look what he's tweeting now (okay 2 hours ago, so before this debate)