1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

England: Neurological Alliance Survey on Neuro Patient Care from the NHS

Discussion in 'General ME/CFS News' started by Firestormm, Jul 9, 2014.

  1. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    This is a good opportunity I think anyway, to express your thoughts about care for ME by the NHS. I have done the survey and it didn't take that long - though I did have a lot to say - and aside from your experiences it also asks about time taken to diagnose, how many professionals you saw, if you saw any, etc. all that sort of thing.

    Yes. Myalgic Encephaloymyelitis is listed as a Neurological Condition and advocated for as such by the Neurological Alliance. I should know I worked with them in the past on a local project. And you'll find the right 'tick-box' in the survey for ME.

    Anyway, here it is:

    N.B. A reminder came up on Twitter today and I happened to notice it, hence why I am posting it now.
     
    Sasha, Esther12 and Valentijn like this.
  2. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    If you have had no experience of neurological services in England - and you live in England - then your experience is still valid and shouldn't prevent you completing the survey. ME is neurological and as such you should be referred etc.

    Similarly, if your experience of e.g. a neurological consultant was 'bad', or a GP, or a specialist service was felt to be 'not fit for purpose', say so, etc.

    These views are what they want to hear - alongside 'good' ones too...
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,252
    UK
    Firestormm likes this.

See more popular forum discussions.

Share This Page