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I also felt cautious optimism .

I think timing is right and if Dr Myhill is gutsy enough to do it then it looks like she is the right person to ask these questions.

About to travel. Computer packed. I’ll back online tonight.. I hope

In case I am unable to say all that I wish to say at the meeting, I have prepared a 2 sided A4 sheet of points. I will use this during the meeting to check whether all the points I consider important are covered by someone. Then I intend to leave my sheet with the NICE rep at the discussion...

I'm not sure it is possible to say that BPS is all about insurance payments - although I do agree there seems to be some evidence pointing in that direction. What about labelling? Once psychiatricly treated will there always be doubt about future illness. A doubt that can be pulled up to...

I can remember not being able to process walking past some one coming the other direction. Academically I knew the 12 foot wide path was plenty of space for us to pass, but as the other person got closer my head froze. I couldn’t walk and judge the distance between us as the same time. I...

Yes. @Sbag I have used the WHO / neurological disease point myself, It’s just that everything around this disease feels so slippery. What ever we do is misrepresented, reframed and used to the psyche advantage. They are experts at meaning manipulations. :(

@Sbag I wonder if a neurological label is really useful. It’s not psyche, but is it really the right place? Agree it would be interesting to know how the discussions went.

I think there is material from (Welcome Trust) - edit no not them. Who do I mean? VanNess and co. Would need to search.... Edit again Workwell Foundation!! Sorry haven’t had coffee yet Yes!!

IMO counselling is fine. CBT to alter perceptions is just plain manipulative.

Do we know how a patient rep gets chosen for the guideline development group?

Agree.

@Jonathan Edwards - I think there also needs to be some mention of the most severe. At the moment the guidelines don’t seem to give the very severe enough protection from well-meaning but misguided interventions. Also hospital attendances for the very severe need to be managed differently due...

Sorry that is the way it is for you now.... but I do understand. A couple of years ago I could not have contemplated this. As it is my husband is taking a couple of days off work to accompany me to London. I’ll do my best to give a strong patient perspective.

Are you not going @Andy?

I have now heard back and this is to be the format for the day: “The format of the meeting will follow some short presentations from NICE staff at the start of the workshop, followed by the bulk of the meeting being a time for everyone to openly discuss what is of most importance with this...

I have now asked (yesterday). No reply yet.

I wonder how they will structure the meeting. Will I get a minute or two to say anything or is it a free for all?

Here's a thought. To acknowledge a problem of this magnitude will mean the repercussions are far far reaching. Some individuals, it seems, are too big to be challenged, because challenging them challenges the whole thing. It is perhaps easier for those in authority to try and ignore/downplay...

Oh that's fortunate. They aren't looking at ME then, just chronic fatigue. Nothing to do with us then. :)