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Please don't make it light and fluffy Gary! (I'm not not saying that you would it's just a request...) We need something for the informed and well read ME patient. People new to ME can learn a lot from this and get up to speed on important issues rather than spending years trying to work out...

Congratulations!

I had to save what I could do and hope to come back to it later. Cognitively it was a challenge and that is going to cause difficulties for some people

Hope you have been resting up Tal and feel a little more able to answer questions if you are up to it. I don't know if what you have been told by the clinic is entirely the truth and that concerns me as a patient. Let me explain why I am saying this. I'm been sick for over 30 years. I've seen...

I think it could be the other way around. Lloyd was well known to PWME and CFS in Australia and New Zealand and to an extend abroad as well. He's in Osler's Web as an example. It was the Dubbo study that possibly gave the results he didn't expect. Before Dubbo his views were well known with...

White said this in an email from Co-Cure (will try and find the date but circa May 2004) " 3. It is wrong that the psychiatrists carrying out this research are themselves employed to provide the therapies being studied at the newly operational ME/CFS centres. It is unethical for people with...

I've been searching through my emails from 2004 (this one 5th June) and was sent one from a member of the MEA. Still trying to find the statement which it refers to ""Our attention has been drawn to a public statement by the ME Association regarding the PACE trial, of which we are the principle...

Here they are (reMember) Really just a "two man band" run by a couple (the Kents). I've met them at conferences. Not a recommendation. http://www.remembercfs.org.uk/principals.htm

Was it this letter to Invest in ME maybe? " Dear Ms McCall Thank you for your letter. As you are, I’m sure, aware the NICE guideline on ME/CFS was published before the PACE trial was seriously under way. Our recommendations were based on a body of research which preceded the PACE study. In...

1 person per Stakeholder group this time only?

That's part of the points I am hoping to make in this thread 1. How did the old SCOPE lead to the old Guideline 2. What we need to remove from the new SCOPE or add There's a meeting 25/5/18 for Stakeholders on the new SCOPE.

Interestingly there was a section on what was not covered c) The guideline will not address: – the management of co-morbidities – highly specialised procedures and procedures that are pilot/exploratory studies service provision or models of care

You are so right! d) Specific interventions covered by the guideline will include: physical therapies (including graded exercise therapy) life-style management (including pacing, graded activity) psychological therapies (including cognitive behaviour therapy) (And there were others as well)

and this was the SCOPE for the NICE Guideline for MS

Here's a link to one on CP in children https://www.nice.org.uk/guidance/ng62/documents/cerebral-palsy-final-scope2 Interestingly the references to school and education are more about participation. Just had a quick look though

Box 2.1 Members of the scoping group NCC Director or senior staff member (Chair of scoping group) Project manager Information specialist Systematic reviewer Health economist GDG Chair Clinical Adviser or topic specialist (if there is one) NICE Guidelines Commissioning Manager...

a) The guideline will cover the clinical management of patients given a diagnosis of myalgic encephalomyelitis (or encephalopathy) and/or chronic fatigue syndrome.

Groups that the Guideline will cover Groups that will be covered a) The guideline will address the diagnosis, treatment and management of CFS/ME in children aged 5 years and upwards (including young people in transition to adulthood) who are mildly, moderately or severely affected by the...

Description of CFS/ME from the original SCOPE "CFS/ME is a relatively common illness that places a substantial burden on patients, carers and families, and hence on society. It comprises a range of pervasive symptoms including fatigue, malaise, headaches, sleep disturbances, difficulties with...

Here is a copy of the SCOPE used for the existing NICE CFS/ME Guideline I think that the next NICE stakeholders meeting 25/5 will be on a new scope. Any suggestions for how we can improve the SCOPE this time? I'm going to try and go through this old Scope and find parts that contributed to the...