NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

Finally received email confirmation of this:

Dear Colleague,

NICE guideline: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020)
https://www.nice.org.uk/guidance/indevelopment/gid-ng10091



Guideline scoping workshop

on Friday 25 May 2018 at 10:00 – 13:00 with refreshments available from 09.30

To be held at Avonmouth House, 6 Avonmouth Street, London, SE1 6NX


I am inviting you to a workshop that will help us develop the scope of this guideline. We are contacting you because your organisation is registered as a stakeholder. The scope defines what the guideline will and will not cover, and we would like to hear your views on this.

After the workshop, a formal consultation on the draft scope will begin on Thursday 21 June 2018 and end on Thursday 19 July 2018. Your organisation will be invited to comment again at this stage.

We want to hear as wide a range of views from as many organisations as possible, so we only have space for 2 persons from each organisation.

If your organisation represents people using services, carers, or a community affected by the guideline topic, the person attending should have a good understanding of the topic from a patient, carer or community point of view.

If someone from your organisation would like to attend, please register by Friday 13 April 2018 by emailing the attached form to CFSME@nice.org.uk. If you have any special requirements (for example, if you need a hearing loop or wheelchair access) please use the form to notify us in advance. We unfortunately are not able to provide access to anyone who wishes to attend this workshop remotely or via teleconference.

At least 3 weeks before the workshop, we will confirm whether we have been able to allocate a place to you. We will also send an agenda, the draft scope, venue map and further information on how to use the expenses system. Information about the Committee recruitment process will be given at the workshop.

IMPORTANT: to ensure that your expenses claim is directed to the correct team at NICE, please submit the claim for this meeting using the reason code ‘CCP Stakeholder Scoping Workshop’. Please note that because workshops are optional meetings that always start after 10.00 a.m., we will only cover accommodation costs in exceptional circumstances. These must be agreed with us before the meeting and should be in line with our travel and subsistence policy (attached). Flights must be agreed with NICE before booking. We will not cover locum costs or loss of earnings.

NOTE: If necessary, please disclose any past or current, direct or indirect links to, or funding from, the tobacco industry on the attached form. Please be advised that should you have anything to declare, this will be included as part of the workshop papers on the day.

We hope that someone from your organisation will be able to attend the workshop.​

 

Are you going to add it to the calendar, @Andy?

 

Yes boss

 

There doesn't appear to be a boss-like emoticon with which to respond to that!

Except possibly this one.

 

The draft scope will be interesting. A good opportunity for some succinct comments- though probably not from me.

 

1 person per Stakeholder group this time only?

 

Doesn't look like it as it says

 

This one should be interesting.

Note to self: one of the patients on the last guideline development group said that the scope only searched for 'GET', which meant studies that merely mentioned 'exercise' were excluded (intentionally or not). Maybe we need one of those word clouds to determine which terms are most important to include?

 

Each stakeholder organisation is able to put forward two representatives again, currently S4ME only has Jo Edwards to represent us, so is there anybody who wants to go as our second rep? We would expect our rep to support the position that anything to be included in the guidelines should be supported with adequate evidence, which obviously attacks the foundations for CBT and GET but unfortunately doesn't allow us to support any treatments at the moment. Those still interested either post here or PM me.

 

What about a new thread to draw attention to that request, @Andy?

 

Not sure where to ask this, but I'm going to the NICE workshop next Friday and have heard there's a thread where this is being discussed. Is there anyone that can add me please? Happy to screenprint my email, if needed. Thanks.

 

Sorted. @chicaguapa I'll PM you.

 

Isn't @MEMarge our second representative, proposed by @Graham, and duly seconded?

 

https://www.nice.org.uk/guidance/cg...ic-fatigue-syndromemyalgic-encephalomyelitis2

Nice scoping document.

EDIT: perhaps there is another thread since this one hasn't been active since end of March and doesn't include discussion that took place about a second Rep.

EDIT2: it is of course the NICE DRAFT scoping document

 

ME Marge (who is our second rep) and I met up this afternoon, but it was a social get-together of the local support group. We're planning on having a chat about the scoping document soon, just to get our brains around it. So unless anyone beats us to it and has some thoughts, we'll start a new thread then.

 

I'm attending too. Can I join in the discussion? I sorta went into the last one blind, and I would rather everyone was singing from the same hymnsheet.

 

Hi @Binkie4, we managed to get Chicaguapa in as a second MEAction rep alongside Nathalie Wright. there are also another couple of Mums coming from a parents' group.
Interestingly, the Surrey FB support group has been granted stakeholder status, though not soon enough to send reps. However a couple of other regional groups were told at the last meeting that they could not attend or be stakeholders any more as they were regional, not national! At least one other regional group was rejected.
Also a South wales group has managed to register and we believe they are sending two reps.

 

@MEMarge
Seems strange that different rules are being applied to different groups.

I think this is going to be a highly important period; also it will be important who is Chair. Any news on that?

 

The Salford group is registered too.

 

Yes, Dr Peter Barry, a paediatrician from Leicester.

His main specialisms seem to be intensive care, and inhalation meds (asthma I presume, mainly)

https://www.le.ac.uk/childhealth/staff/pwb1.html

I had a quick look and he has been on at least a couple of NICE GDL committees. One was on obesity, another on end of life care for infants.

Younger than most of the BPS mob I think.