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!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

IACFS/ME Clinical Primer Available

Discussion in 'General Treatment' started by alex3619, May 16, 2012.

  1. alex3619

    alex3619 Senior Member

    Messages:
    7,703
    Likes:
    12,562
    Logan, Queensland, Australia
    The much anticipated clinical primer for treating us has been released by the IACFS/ME. Here it is:

    http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

    Credit goes to http://mecfsblogroll.blogspot.com.au/ for making me aware of this.

    Here is the description from the preface:

    "PREFACE

    This primer has been written for the clinical practitioner. Our goal is to provide the information necessary to understand, diagnose, and manage the symptoms of chronic fatigue syndrome -- also known as myalgic en-cephalomyelitis (ME/CFS). The text was developed by consensus of the primer committee. The authors have made considerable efforts to ensure that the information provided is accurate and up to date. Where pub-lished studies are lacking, our recommendations are based on the clinical expertise of our experienced practi-tioners. Our hope is that you find the primer to be a useful adjunct to your practice and a worthy companion to your reference library.

    Periodic updates will be available on our website: www.iacfsme.org "

    PS Notice the artwork: it looks suspiciously like a phoenix rising in the background.
     
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,703
    Likes:
    12,562
    Logan, Queensland, Australia
  3. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,128
    Likes:
    3,398
    N. California
    I actually happen to be a friend of the artist. She is a CFS patient, who occasionally reads postings here on PR. She asked me to post her original artwork, along with the message below... so here it is.

    Dear PR Community,
    I'm horrified to find the ME/CFS primer printers totally ruined my artwork (see below what it's supposed to look like.) I am ashamed to have my name on it as it looks now. My ego is hurting! They didn't include the title either, "Beyond the Shadow of Hope" which I think speaks to one of the main meanings in the image, of how we patients recall our lives when we could soar, and still hold onto the hope that we will again. The other main message was that the patients hold the key, and doctors must start listening to their patients carefully if they want to really understand this disease.

    Alex finds that it "looks suspiciously like a phoenix rising" which was not at all my intention, though I see now how it looks that way. Because I can barely do anything useful or creative any more, I just wanted to contribute something beautiful and meaningful to the community. I hadn't read the primer when I submitted my art, but from the lineup of authors I felt certain they would produce something that was in its majority more accurate and informative than what has been available to date. I haven't read it all yet, but so far it seems to me that's the case.

    Whatever anyone thinks of the primer, I just wanted to speak up to the community that I am a patient and an artist whose ego has been bruised by the bizarre mangling of my hard-won creation, which was intended to engender sympathetic insight in doctors on behalf of the patient community as a whole.

    Thank you, Renee

    Beyond_the_Shadow_of-Hope.jpg
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,403
    Likes:
    4,797
    australia (brisbane)
    Hi renee,,

    I have just woken up at 5am after 4hrs sleep and this is the first post i have opened up, Its a strange feeling i had when i woke up that i am just about over this illness??, maybe it was a dream prior to waking up, either way it was an intense feeling. I open this post and i see your pic, to me it resembles being free from this cage called me/cfs, it just struck an immediate cord with me. Gee i hope im not dreaming. Maybe just a very strange co-incidene. Its a great painting i thinking gives people hope of recovering from me/cfs. I suppose everyone can take a different meaning from what they see in your art.

    good work,
    best wishes,
    cheers!!!
     
  5. Sing

    Sing Senior Member

    Messages:
    1,362
    Likes:
    581
    New England
    Dear Renee,

    Have you spoken to them about your feelings about how it looks, and the absence of your title? They may not have any idea how you'd look at this, or any ill intention, but I do think they should have checked with you first!

    My view is that both images are beautiful and meaningful. To me, their's without the title expresses longing, unfulfilled longing. A bird doesn't have a concept of the future but knows how it feels now. Being in a cage makes no sense to a bird, is a nightmare for it. That is what I feel is true, even for birds who have been caged all their lives. That doesn't make it ok. Everything about their brains, bodies and instinct is geared for flight, exploration, a social life among its kind, etc. Once I worked in a bird shop with many kinds of birds, and once I was given a brief glimpse into the soul experience of a little bird caged all its life. It was a dark state of nightmare--so painful to me to feel that I decided never to have a caged bird.

    Anyway, I apologize for getting away from your subject. Your artwork in both its versions spoke to me. I hope you will continue making art to whatever degree you are able to...
     
    CJB and froufox like this.
  6. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,850
    What a strange mutilation of stunning artwork! Thank you for sharing with us the original and its title.
     
  7. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    That looks marvellous alex - thanks for posting. Do you know I wonder if it will get wide distribution (so needed).
     
  8. Andrew

    Andrew Senior Member

    Messages:
    1,978
    Likes:
    1,267
    Los Angeles, USA
    I'm glad you posted the original, and I can see why your friend was upset with the PDF version. They did a horrible job reproducing it. But please tell your friend that the meaning was not lost on everyone. I saw a bird, locked in a cage, with a faded image of what it's like to soar free. And I imagined the bird was wishing it could be free, instead of locked in the cage.

    It summed up my life pretty well. And I thought it was a perfect choice to represent us.
     
    SickOfSickness, Dolphin and CJB like this.
  9. alex3619

    alex3619 Senior Member

    Messages:
    7,703
    Likes:
    12,562
    Logan, Queensland, Australia
    Hi Renee, the meaning comes through with either image. I appreciate your taking the time to explain the issues. Perhaps we as the community can promote the original image.

    To Enid, post 7, on promoting the primer, that is up to all the stakeholders. The authors will promote it, advocacy organizations will promote, but we must also promote it - as patients.

    This primer is just that - an introduction. That is however what most physicians really need, a place to start, a document to update them on the basics and create awareness that there has been major advances in the biomedical science. It is not a complete thesis on the state of knowledge, but such a document would probably not be read by most doctors - the conservative and basic pitch is probably right for the target audience.

    Bye, Alex
     
  10. Andrew

    Andrew Senior Member

    Messages:
    1,978
    Likes:
    1,267
    Los Angeles, USA
    Anyone want to offer an opinion on whether it is better than the Canadian Consensus Overview.
     
  11. WillowJ

    WillowJ Senior Member

    Messages:
    3,139
    Likes:
    2,830
    WA, USA
    Renee, your picture is very moving. Thank you for making that.
     

See more popular forum discussions.

Share This Page