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LOL Esther! Certainly it is what we are doing!

Wonder who "Northern Ireland campaign for ME/CFS" is.... not an organisation I have heard of over here!

That list looks out dated. Hope 4 ME & Fibro NI is not on it. We are definitely stakeholders as we have been invited to send a rep to the stakeholder meeting in January, and we also submitted a response in July. As for the unusual list, we also registered for some other guidelines... because...

:) This! Exactly this! :)

Staying fit is not an option when unwell @PandaEyes However once some improvement comes it is easy to regain some fitness - well up to the new ceiling imposed by whatever improved level you find yourself at. I have written a few blogs on pacing... check out the link in my signature line to my...

I asked about how they would limit numbers (as that was suggested somewhere) and they said they might have to limit the number from each organisation to one representative... two can apply. However I was told they were hoping to accommodate all who applied.

That was my view too. In fact I didn't read to the end, but others told me it got better. I worry that most folk won't get past the first part.

I'm not entirely sure on what defines a group @Adrian Hope 4 ME & Fibro NI are a charity, and we became stake holders in 2016 I think. We submitted a response to NICE in July.

Individuals can represent groups... each group can have two representatives I think.

Illness behaviour / sickness behaviour - I certainly never realised that the two terms were intended to be different! Does anyone really differentiate?

Thank you - yes. That confusion has now been clarified. As you were.... :)

Somewhere it was suggested that the current NICE guidelines have been withdrawn rather than standing until the review comes out in 2020. Is it in these minutes? (I haven't read them yet) Does any one know?

YES! Looks like you got there before me (I didn't read the whole thread before responding. :P )

I often wonder if concealing illness (placebo effect?) is perhaps a way of ensuring that the carers in a tribe situation still will think it worthwhile to continue caring for you. Show some progress or "improvement" (no matter how small or imaginary) and there is still hope you will continue...

I was told by a medical professional that I needed to recover quickly so that my developing "sickness behaviours" didn't be come established patterns! I thought that was a bit rich, but as the individual concerned was other wise helpful (a chiropractor tending to my back) I let it go, and...

Ah okay.. that's good Jenny if it's already out there being tweeted. :)

I've seen this before - it is excellent, and I think should we should probably share it on Twitter and places where some of EC's sympathisers hang out. It would show very clearly how the different groups are operating (for those who take the time to consider it ;) )... However I'd like to know...

I "think" it should be possible to find that out on the FOI site?

I do need to do a blog post really. I took ARVs I have a post somewhere on PR about it all. Okay here it is. http://forums.phoenixrising.me/index.php?threads/tenofovir-viread-raltegravir-isentress-cures-me-cfs-patient-sick-for-20-yrs-tenofovir-poll.54912/page-2#post-920200 I'll put my story in...