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Sources of online information for medical professionals

Discussion in 'General Advocacy Discussions' started by Hutan, Jan 28, 2019.

  1. Hutan

    Hutan Moderator Staff Member

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    I'm helping with updating the ME/CFS webpage of an online guide for medical professionals.

    It currently links to a few sources of more detailed (but still concise) information.

    One is the recently revised CDC information for healthcare providers which is now pretty good. This improved information on such an authoritative website is so tremendously helpful in improving care around the world. The health authority that owns the resource I am working on has recognised the mismatch between what is currently recommended (the usual CBT and GET approach) and what the CDC recommends. Big thanks to the advocates who helped to improve the CDC material. @Medfeb

    What other online sources of information for busy medical professionals would be useful to link to?
     
    Last edited: Jan 28, 2019
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  2. Hutan

    Hutan Moderator Staff Member

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    Currently the two other links the online guide has are to the NICE Guidelines (so that's not appropriate at this point) and this one:

    https://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro

    This information on the UK site 'Patient' is not terrible, in fact I'd go so far as to say that a lot of it is good. But it could be better. Does anyone know the background of this document or the authors (Dr Colin Tidy; Dr Sarah Jarvis) involved? It was last edited on 21 Dec 2018.


    I'm interested in your thoughts on this one. What would you like to see changed? Do you think it's helpful to link to?
     
    Last edited: Jan 28, 2019
  3. Hutan

    Hutan Moderator Staff Member

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    Further on that 'Patient' website information:

    The reference to a 'gradual increase within any individual's limitations and symptom fluctuations' is vague enough to be dangerous.

    But it's the recommendation of Reverse Therapy that is really concerning and would make me recommend that the site not be linked to:
    From MEPedia, it's fruit loop stuff:
     
    Last edited: Jan 28, 2019
  4. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  5. Daisybell

    Daisybell Moderator Staff Member

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    The management section is not good. It’s almost like it’s been done in two halves by different people. The first half on diagnosis and symptoms is ok, but the sections on management and prognosis are not....
     
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  6. Ravn

    Ravn Senior Member (Voting Rights)

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    I agree.
    Did you see this thread? A quick scan of the posts indicates many people here are not happy with that website, and certainly not with the Reverse Therapy stuff.
    https://www.s4me.info/threads/patie...on-chronic-fatigue-syndrome.7322/#post-130865
     
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  7. Hutan

    Hutan Moderator Staff Member

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    Thanks @Ravn, I hadn't seen that thread. So it looks as if a person with CFS in the UK has provided a piece titled 'The Latest Thinking on CFS' on the 'Patient' website and material from that, including a completely unevidenced endorsement of Reverse Therapy, has been incorporated into the reference material produced for doctors.

    And that material is recommended by district health boards in New Zealand to doctors ... :eek:
     
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  8. Hutan

    Hutan Moderator Staff Member

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    Another link in this guide for doctors that I'm reviewing is to UptoDate.

    This source is discussed here:
    https://www.s4me.info/threads/uptodate-me-cfs-information.5755/

    It seems that, at present and despite @Webdog's persistent and awesome efforts, UptoDate is not an information source we can endorse, given its continued recommendation of GET.
     
    Last edited: Jan 28, 2019
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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Add to that local "Mickel Therapy" which is equally expensive I am told. A local private provider had the temerity to put our local NHS logo on their site (as endorsement) without permission, until it was discovered by us and a complaint made by local NHS and us to Trading Standards.
     
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  11. Adrian

    Adrian Administrator Staff Member

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  12. Hutan

    Hutan Moderator Staff Member

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    Thanks @Snowdrop and @Adrian, interesting links.

    It will be interesting to watch out for the outputs from future clinicians' summits.
     
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  13. Hutan

    Hutan Moderator Staff Member

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    There's this:

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer, 2017, Rowe et al
    https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full#h7

    I haven't read it recently but I remember it being pretty good.

    Is there any way that clinicians outside the UK could access an online copy of the ME Purple Book? It has the advantage of being reliably updated.
     
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  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    Its available on kindle

    https://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/

    Edit - added link
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  16. NelliePledge

    NelliePledge Moderator Staff Member

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  17. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    In skim-only mode, but just saw that on the BMJ Best Practice website presenting Baraniuk's summary both the IOM Report (2015) and the CDC‘s recommendations on "Symptoms and Diagnosis" are linked as "guidelines" on the right side. In the category "resources" the guideline section is only accessible with subscription, though.

    Also, the "patients‘ leaflets" linked on the right side, one on "Chronic Fatigue Syndrome" and one on "Depression in Adults", are only accessible with subscription.

    Could anyone who has access to "BMJ Best Practice" give us some information about the guidelines, patient leaflets and "evidence" presented as "resources" for "Best Practice" for "CFS/ME"? (documents' titles, authors?)
     
    Last edited: Jan 30, 2019
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  18. Hutan

    Hutan Moderator Staff Member

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    There's the BACME guidelines for severe ME. Thread here:
    https://www.s4me.info/threads/new-bacme-guidelines-for-severe-me.7900/

    I haven't read it, but it sounds as if, while there is some good content, the underlying belief that gradually increasing activity or exposure to stimulation such as light will lead to improvement makes it impossible to recommend it.
     
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  19. daftasabrush

    daftasabrush Senior Member (Voting Rights)

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    Stay away from the BACME and it's "maintaining" and "rehabilitation" talk. What happens when you try to "maintain" your level and it turns out you have the progressive form of the illness? That's how many got severe in the first place.
    BACME are pure BPS and their current Chair Gabrielle Murphy is a PACE trial author.
     
  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    That's pretty much the tone of the thread quoted above.
     
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