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Thank you for flagging this up @Amw66, and sorry I didn't see it sooner. Current capacity within my team dictates that I am not able to check this forum as often as I would like; I hope this improves soon.

Thank for you for highlighting this @Amw66, I will share with the team here.

Hi Sarah - I'm happy to address the questions that you've posted but I'm afraid I have run out of time before I go on annual leave. While my team doesn't have capacity to regularly monitor and post in S4ME in my absence, they would be happy to respond to questions by email or phone. I will be...

Apologies for my delay in responding to this. Yes, we have been part of the Expert Advisory Group (EAG) for the joint Work and Health Unit. Our input was focused on sharing learning from our SEE M.E. project, which involved setting up a pilot service that offered specialist employment support...

Sincere apologies, my mistake. The figures should read (and they are slightly different now, as we've had more responses overnight): 40% of respondents said yes 21% said no, there are key issues missing that ought to be included 21% said they don't have a strong opinion on this section 13% said...

If anyone is unable to complete the survey, but still wants to share their view for our response, please email us directly at policy@actionforme.org.uk

Thanks @adambeyoncelowe - this is really useful feedback and something we could consider when we survey people affected by the M.E. on the full guideline. My concern with this approach is that we might be putting words in people's mouths, and potentially look like we are leading respondents to...

Hello, Clare from Action for M.E. here. Thank you @Cinders66 for sharing the link to our survey. When we respond to the NICE consultation on the scope for the guideline, we will quote quantitative and qualitative data directly from the survey (ensuring that they are anonymous - we don't ask for...

While we don't know for sure if, without the support of the SEE M.E. project, those that took part would have still raised aspirations and achieved their goals in relation to employment, we don't have any evidence that it wouldn't either! Instead, we are making a reasonable assumption, based...

The cost involves paying a day delegate rate (in excess of £50) which is set by the hotel. I will certainly ask our contact there if a half-day rate would be possible, though it's too late to do this for this year's event.

A single full day pass is the minimum available (the cost of which is substantially subsidised to make it affordable for people living with M.E. and their carers). For those too ill to attend for the whole day, we film it so it can be watched live and/or later. Last year, there were more than...

Hi Clare at Action for M.E. here. I just wanted to offer a bit more information here, and to reiterate that everyone is welcome to come along (you don’t need to be a CMRC member). I’ll be there so would be happy to meet an for a coffee/chat over lunch on either day – just let me know (you can...

Thanks for your questions @Esther12. The outcomes of this project were self-reported, by the people who took part, many of whom were also self-referred. We don’t know if, without the support of the SEE M.E. project, those that took part would have still achieved their goals of achieving their...

Yes, that would be helpful - thank you. If you'd prefer to email me I'm on clare@actionforme.org.uk

Hi, Clare here from Action for M.E. I'm sorry about the time it's taking me to respond to questions/posts - I have had to focus on other things here in the office, but I am dedicating some time today and next week to addressing issues raised here. It seems like NICE moved the link to this (we...

Hi, Clare here from Action for M.E. I'm sorry about the time it's taking me to respond to questions on the forum - I have had to focus on other things here in the office, but I am dedicating some time this week and next week to addressing issues raised here. I have posted about SEE M.E. and...

Thank you @Graham, I will share this with the team. I'm sorry about the time it's taking me to respond to questions/posts - I have had to focus on other things in the office, but I hope to dedicate some time today and next week to addressing issues raised here. Clare Ogden Head of...

Thanks @Trish. Our rationale for recommending Paul was that, given the event was confirmed and going ahead, it would benefit those attending to hear from someone who can offer appropriate and useful advice re supporting people with M.E. who have needs around employment, eg. understand M.E. and...

Hi, Clare here from Action for M.E. I'm sorry about the time it's taking me to respond to questions on the forum - I have had to focus on other things here in the office, but I hope to dedicate some time today and next week to addressing issues raised. We declined an invitation to be involved...

A couple from the International Alliance for M.E. protest in Geneva