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And this appears to be the direction of travel as highlighted by Keith et al The Importance of Accurate Diagnosis of ME/CFS in Children and Adolescents: A Commentary Keith James Geraghty* and Charles Adeniji

https://spoonseeker.com/2019/01/21/coming-down-the-line/ ....."So how does this affect our present concern with NICE? I am starting to wonder if the late decision to revise the guidelines was really a strategic ploy in a much larger game: a ploy to keep us all focused on a detail which would...

Link to Sandy saying it as it is! https://parliamentlive.tv/event/index/4f090137-2b52-4604-9fff-c6e4c2a19336?in=10:54:36 The Norfolk and Suffolk Service does not offer GET or CBT.

Oh how true.

I have a result from Ipswich MP Sandy Martin, I am happy to confirm that Sandy will try to attend the debate if he gets back to Westminster on time (he has a shadow ministerial visit scheduled). You might be pleased to hear he attended and intervened during the Fibromyalgia debate in...

A related example; Only 14 pages so short. https://healthwatchderbyshire.co.uk/wp-content/uploads/2017/10/V1-Fibromyalgia-Report-02032017-SM.pdf Experiences of health and social care services for people with fibromyalgia. Collected January & February2017

Have heard back from Charles on this Have replied, Thanks for that feedback Charles, There is the issue of the current NICE chair request, but also the fact that existing and recent patient experience feedback/surveys is/appears not to be formally feed into the NICE process? It appears that...

Perhaps Forward ME and MEA can approach Healthwatch England to gain access to their capacity and funding to assist the survey in the longer term, as this should not be done and dusted by March surely? https://healthwatchtrafford.co.uk/get-involved/surveys/mecfs-survey/ The aim of this survey...

You are right Tilly. It seems we are being expected to keep 'reinventing the wheel.' Again, again and again.... That could be because they are so far behind the curve of the available information, or they don't know their own processes or anyone ones else's...... Or they don't want to know...

Agreed, but the survey is still "open", can be revisited, accredited and achieve some status.

if you read the full report, GET and CBT are commented on.

I believe that part of the problem was the "hijacking" of the report and the "embargo" place on publishing by another organisation effectively claiming the work to be of their making.........and it to be under their control...... patients who have worked hard to initiate a project do not wish...

Engaging with Healthwatch Thu, 1 November 2018 Jess Brayne Membership and Events Manager @JessicaBrayne Tips on how voluntary sector organisations can work with Healthwatch: Have a local campaign you’d like to work with them on? Approach the regional managers to see if they can help get the...

A useful phone call and a result.... https://www.nationalvoices.org.uk/blogs/engaging-healthwatch National Voices’ local influencing and campaigning network brings together professionals in member organisations who run campaigns that try to effect change at a local, as well as national...

Moderator note: This post and subsequent discussion have been moved from this thread: Forward ME Group CBT/GET Survey - Tell NICE your experiences I have just telephoned Healthwatch who may be interested to help generally...... More on this later; Policy and Public Affairs Jacob Lant - Head...

Don't forget that Healthwatch are an organisation which should be tasked with doing this, and I believe they recently were awarded more Government money for that purpose. So why did Peter Barry not appraoch Healthwatch England?(https://www.healthwatch.co.uk/our-staff) " Imelda is passionate...

Moderator note: post moved from Open - Forward ME Group CBT/GET Survey - Tell NICE your experiences In my latest missive to NICE about LocalME Complaint, I was told that you can't make a complaint against NICE's processes! Perhaps I should copy in the chair PB......and vice chair. I wrote in...

Whilst I agree and acknowledge what you say, this also came out around the time of the "Expert Patient" initiative in the NHS. Anyone new to ME will need to understand it's complexity quite soon and patients "wise up" re markedly fast once they start! That is often because they are confronted...

Thanks and all feedback very welcome. The Appendix one is straight from the Canadian Consensus Criteria. It is their verbatim copy ( copyrighted) -The Canadian Consensus Criteria (CCC) are a proposed clinical criteria for ME/CFS, published in 2003, of which I have an original copy (this also...