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Interesting Natalie-as someone with out ME- but a stressed"Eric" carer " of 2 with it, I have/had extremely thick hair all my life but also noticed a significant loss in my daily brush about 2-3 moths ago. It has never happened before and I am 68 now. I asked and was given both an iron test...

1. My Localme one; https://drive.google.com/open?id=1cj3Xyd1Yao2Bq2F6lRRX3VJg-BH2X3hR 2. VIRAS who are also on S4ME: http://p11.hostingprod.com/@.../VIRAS/VIRAS_NICE_ME_Draft_Scope_comments.html FINALLY.................... I had forgotten about the 2015 CQC initiative! Wondering what they...

Just read VIRAS submission. Fantastic! Good to see you went straight for the jugular.

We have accepted this to be an awareness and raising the profile exercise. It certainly departs from the New Service Spec which was signed off after years of intensive work in 2012!!. Dr Nacul's new service is nothing like the new spec, and even his consultant role PLUS the inadequate local ME...

I was at both January "Engagement" and May "Scoping" NICE events and I can assure you that I raised this very point! BUT, there was only the opportunity within our "groups". NICE did their intros (about 20-30 mins) , talking at us with only a couple of questions allowed (I asked one!) Dr...

Actually, we have pushed for the Canadian Criteria/Consensus for years and that's referenced on the Service. https://www.ecch.org/our-services/services/adults-mecfs-team/e provider website. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

Dr Terry Mitchell used to prescribe Melatonin when he had a drugs budget! He recommended it when he lost his prescribing rights due to PCT mismanagement, squit and nonsense ! The clinical staff used to pass on info and recommendations. I don't know if they still do or are allowed to....I buy...

Maybe this has something to do with it.... Read it and weep. https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ This NHS Choices OVERVIEW MUST be challenged. NHS CHOICES is suggestible by SMC and others. I think content can be altered - by authorised agencies like PALS ? - bit like...

Please look him up- I am surprised that you know so little -about what has been going on recently with Dr Nacul and the LSHTM...........

It's about power and that ECCH are a Private limited company who answer to Company House NOT US!= NHS privitisation (Dpt of Communities & Local Government suggested Community Interest Companies- CIC.....)

It's all about costs unfortunately.........

This is because the arrangement is essentially "a fudge"...... Suffolk Clinical Executive have clipped the wings of the commissioners and us and we are not happy bunnies......WE Fight on!

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...