1. Guest, the 'News in Brief' for the week beginning 19th September 2022 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

NICE Evidence Search containing ME/CFS Symptom Management information will be removed shortly

Discussion in '2020 UK NICE ME/CFS Guideline' started by livinglighter, Feb 7, 2022.

Tags:
  1. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    349
    In my attempts to help my GP help me, I came across a NICE Evidence page outrightly calling ME a physical illness with information on identifying and managing the symptoms.

    https://www.evidence.nhs.uk/document?id=2193067&returnUrl=search?q=myalgic+encephalomyelitis

    https://actt.albertadoctors.org/CPGs/Lists/CPGDocumentList/MECFS-CPG.pdf#search=myalgic encephalomyelitis

    The information was published in 2016 which predates the new guidelines but follows the 2007 guidelines considerably.

    Does anyone know if health professionals can use this resource to help inform patient care?

    The evidence search function where it is located will end soon on 31/03/22, and there doesn't appear to be anything else giving instructions.
     
    Last edited: Feb 7, 2022
  2. Andy

    Andy Committee Member

    Messages:
    17,466
    Location:
    Hampshire, UK
    Why not just point him towards the new guidelines? https://www.nice.org.uk/guidance/ng206

    There is nothing stopping him using that NICE Evidence page but the information at the link I have posted above is the most up-to-date version.
     
  3. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    349
    Good point!

    I think the online document may be helpful as it has some pathology headings for managing symptoms, unlike the new guidelines, unless I've missed where it is allocated.

    My doctor doesn't seem to currently know what referrals to make. Eg. if I report weight gain do I need to see an endocrinologist to check for hormone imbalance or just a dietician.


    *Edited for clarity.
     
    Last edited: Feb 7, 2022
    alktipping and Peter Trewhitt like this.
  4. Andy

    Andy Committee Member

    Messages:
    17,466
    Location:
    Hampshire, UK
    "1.12.22 Refer people with ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are:

    • losing weight and at risk of malnutrition

    • gaining weight

    • following a restrictive diet."
    https://www.nice.org.uk/guidance/ng...ions#symptom-management-for-people-with-mecfs
     
  5. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    349
    I am not sure if dieticians can test for possible underlying neuroendocrine hormonal imbalances causing weight gain, which I would want if it were the case. I'll discuss the matter with the GP, but going straight to a dietician may miss out on relevant testing.
     
  6. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,465
    Location:
    UK
    Totally agree with you re: not just referring straight to a dietician for weight gain .

    GP should be able to test your thyroid hormones themselves - weight gain can be a symptom of hypothyroidism.

    I'm not sure if there are other hormones affecting weight?
     
  7. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    349
    There is something called Hypopituitarism.
     
    Sarah94 likes this.
  8. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    349
    Quick update!

    After years of my family being perplexed by my ailing health and taking a backseat supporting approach, they are now proactive about getting me better medical. They are currently corresponding with doctors on my behalf.

    For once, different doctors at my surgery are starting to sound like they are listening!

    My relative also pulled up more information showing the seriousness of ME/CFS from the NICE evidence search website by just typing 'MYALGIC'

    https://www.evidence.nhs.uk/search?pa=1&q=MYALGIC

    We've already sent what I found earlier to my GP and will send some new things found.

    I've yet to look through the information properly myself, but I wanted to share it in case you find it helpful to show your doctor before the webpage closes on the 31st of this month.

    I was also sent the following article discussing links between ME/CFS and Long Covid from the Patient Info website.

    https://patient.info/news-and-features/why-is-mecfs-research-key-to-understanding-long-covid#:~:text=Long COVID and ME/CFS shared symptoms&text=According to research, the most,-exertional malaise (PEM)
     

Share This Page