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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    November 2: CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

    Thank you appreciate this , as many who wanted to listen in could not . Do you know if anyone was able to record it ? As it was open to anyone
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    November 2: CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

    Anyone able to listen in and possibility to record this ?
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Yes I gave the patient expert this write up as they were asking for input and I was told about this by some other people that alos submitted info to the patient expert . I asked to be kept anon . My name appears there as it’s the contents of the conversation I have with Rosa to ask her if I...
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Hey can you all join this thunderclap and share it in the forum where people will see it .i don’t know how to use this forum properly . It’s for the tedxbrisrol talk dare to disrupt to share info with them . Please join and share it ...
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    I don't use this forum much as you can see from my profile , and won't be keeping up with all the notifications on this thread . I've tried to be clearer .
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Individuals can submit input through stakeholders , and so I guess that is why they were asking if anyone wanted to provide an input , which I was informed about , and which other individuals did too . From seeing Tullers post in here , I saw that what I had provided was submitted , and that my...
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    I am not the patient expert . I submitted the document attachment that the patient expert provided .
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    I am not the patient expert . I submitted the attachment that was provided by the patient expert as they were asking for info from patients
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Just to be clear . I am not the patient expert . I submitted what I wrote to them as they were asking for patients input . And what I wrote is the larger document which they submitted . I also asked Rosa if I could pass on her blog and she said yes . That is why my first name is mentioned in the...
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    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Iam Amanda Rankin who wrote the document submitted by the patient expert . Seeing as they didn't remove my first name , thought I'd just go public .
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    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    I need to get in touch with S Campbell please , who wrote this as I need her help with Millions Missing protests on the 27th . I am suggesting this be used in the open conference call , for the central protest demand . Can someone help me get in contact with her please . This is my first time in...