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An excellent letter and summary of where things currently stand. Do we have permission to use this with our local Community Engagement Partnership meeting which has forward programmed ME CFS onto their agenda? We have the ear of the 2 CCGs- via chief nurse and Chief Operating Officer.

"......different pile from people with my specific presentation of symptoms>" Sheep or goats...?

I wonder if @JonesyJ49 is friend or foe?......... is it the very same who was caught defaming Dr Sarah Myhill for Queen's Essex? She did mange to turn the tables on him and refer him to GMC and Fitness to Practice .... need to check this out.....

I was a"registered Stakeholder in 2017 and responded to Public Consultation . I was registered again in January to attend the engagement meeting. I was deregistered in January Meeting by NICE as they said, THEY had made a mistake, don't register"local" groups, only national (though I am a...

A local "rabblerouser" (but very gently, diplomatic and subtle) and an advocate for all things complex and intermingled (ME/CFS/EDS?POTS), has taken a place on an important local NHS CCG forum and the following, IAPT, ME Services and Specialist Funding (IF) Independent Funding Requests, came up...

That's because it "downloads" as a docx file- that's .docx for you- lack of compatibility in my experience.

I think we should seen the draft notes recorded by the 6 table note takers (Royal College lady in my case) BEFORE it is submitted for consideration by Chair and NICE to redraft guideline ahead of the consultation. Just in case anything was incorrectly recorded or misconstrued...

Email sent, "Good morning Joshua, In order to provide feedback for my organisation LocalME, it would be helpful to have the powerpoint and slides electronically. Could they be sent please? Because the time allocated to debate was cut, we did not address all points on your agenda, so I wish...

It is puzzling, especially as the DWP "contribution" and involvement is not stated. So could the DWP bit be part of this or in addition.....?

Nothing wrong in being a pedant! I hope, ill informed I am not....... I think actually "Chandler" was a Freudian slip? Chandler, a peddler of wares, especially suited to KCL, ( SW) who, in particular loves a nautical bent in analogies! I can always blame the predictive text on my phone........

Thought the grant information was interesting....... https://impact.ref.ac.uk/CaseStudies/CaseStudy.aspx?Id=41185 22: Improved evaluation and treatment outcome for chronic fatigue syndrome Submitting Institution King's College London Unit of Assessment Psychology, Psychiatry and Neuroscience...

FYI https://academic.oup.com/occmed/article/65/1/86/1433061 The Chalder Fatigue Scale (CFQ 11) Craig Jackson Occupational Medicine, Volume 65, Issue 1, 1 January 2015, Pages 86, https://doi.org/10.1093/occmed/kqu168 Published: 29 December 2014

There is a rider on top of a very badly trained and viscous horse. It's kicked and bitten before. My sentiment completely and, if we ask who this Guideline is aimed at.....essentially Primary care , 'cos that is effectively all there is atm. AND in our local regional experience, after a 13...

Objective outcome measures and "fatigue scales"- In our group I suggested that BACME acolytes and our local service, used the "Chandler Fatigue Scale"- which is long, demanding and patient unfriendly, local patients think it is a waste of time and energy_ plus it is "licensed" and has to be paid...

Page two of the slide presentations issued to us on Friday; What does the scope do? Ensures the guideline addresses the key areas of variation in delivery of care and quality How on earth can this be achieved? There appears no formal mechanism for feedback to NICE about "variation", care or...

Point taken, It's just that we have been asked who was there (mainly which professionals).

We had Dr Kelly Morris who I think said she works with GM and is involved with BACME? I think GB Cliunic has been axed anyway? Ist job is to extracate a delegates list from NICE and Rupert Thomas? I have a list of my table which I will post soon. I have also been going over recollections and...

LOve the analogy. .....massing for an attack? I have had ducks, unlike chickens, ducks sh*t all over the place, thereby making the pond and surrounding environment very slippery. Another feature of ducks (drakes in particular) is that they exist in packs (or is it gaggles?) please help out...

Being ....dumped is actually the better option. Yes indeed and less FII "risk" or "mum blame"...... Been there and have the tee-shirt- 2000 I was being driven down this route. In 2005 the Mental Capacity Act also triggered further threats with Deprivation of Liberty. ( adults at risk too).