Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Has anyone read this article? and would the contents be helpful to present a Physician?

Discussion in 'General ME/CFS Discussion' started by Vineyard1, Jan 21, 2018.

  1. Vineyard1

    Vineyard1

    Messages:
    99
    Likes:
    111
    I am trying to find one article that bring the point home that ME/CFS is biologically based to a Physician who has no or minimal knowledge of ME/CFS...one that incorporates the many elements of neuroinflammation, cytokine activity etc.
    Has anyone read this one and have an opinion?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5314655/
     
  2. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,656
    Likes:
    4,590
    Pacific Northwest
    It looks like its by an "independent medical researcher" which would carry no wait.

    I like the attached simple diagram for new doctors, backed up by a couple of slides printed from this presentation:



    As well as an announcement of the NIH grants and 4 Centers of Excellence, and then copies of recent research like Montota's cytokine study, metabolomics studies by Naviaux, Armstrong, and McGregor, and papers by Mady Hornig and Maureen Hanson.

    You don't need to hand them all over, but you'll be prepared with wherever the conversation goes, and they can't deny it exists.;)
     

    Attached Files:

    ebethc likes this.
  3. Vineyard1

    Vineyard1

    Messages:
    99
    Likes:
    111
    Thank you!
     
    Learner1 likes this.
  4. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    1,578
    Likes:
    561
    Wasting your time. Been there done that.
     
  5. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,656
    Likes:
    4,590
    Pacific Northwest
    Every doctor is an individual and worth a try.
     
  6. Sita505

    Sita505

    Messages:
    38
    Likes:
    18
    Learner
    Do you know of any recent journal studies about B12 deficiencies leading to cortical atrophic findings? Also do you know of any showing that supplementing B12 decreases the atrophy?
    Thanks, Sita
     
  7. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,656
    Likes:
    4,590
    Pacific Northwest
    Mel9 likes this.
  8. Sita505

    Sita505

    Messages:
    38
    Likes:
    18
    Thanks Learner. I am starting my second week tomorrow of self-injecting Cyanocobalamin 1 mg. daily. I have already talked my doctor into doing every other day for next week. I still have visual blurring, tingling in my right foot, some Nausea and gagging, fatigue, bowel and bladder lack of sensation, etc. Any suggestions for what next? I am hoping that the remaining symptoms are completely gone when I am coming to the end of my every other day regime.
    I feel like a chemistry experiment, but have been feeling so, so much better.
    I welcome any other suggestions.
    I am also doing all the pre and probiotics..
    Thanks, Sita
     
  9. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,656
    Likes:
    4,590
    Pacific Northwest
    You might look into methylcobalamin instead of cyanocobalamin. And you may need co factors, like B6, B2, magnesium, folate, amino acids, B1 and molybdenum.

    The best way to tell what you need in what ratios would be a Genova Diagnostics NutrEval test. You can see a sample test by clicking on the link in this page:

    https://www.gdx.net/product/nutreval-fmv-nutritional-test-blood-urine
     
  10. Sita505

    Sita505

    Messages:
    38
    Likes:
    18
    Hi Lerner
    My doctor would not even open up the articles you sent me because she didn’t want more passwords! I took hard copies of other studies. She would not sign up for this type test, I don’t think, I will ask. Do these tests work if you are supplementing? Do you know if insurance covers them?
    Thanks very much, Learner
     
  11. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,656
    Likes:
    4,590
    Pacific Northwest
    I print out research articles, and, having read them myself, hand them to my doctor with a quick sentence about why I feel it is pertinent to me.

    I do the Genova Diagnostics NutrEval while on supplements, as that is my normal state, and I want to know if what I'm taking is working well or if I need to adjust. (The instructions say to skip the supplements, but I've been doing the test every 9-12 months for 8 years, and it works just fine this way.)

    They have an Easy Pay program which you will want to do - it will always save you a good deal of money on this ~$2,000 test. The Easy Pay runs about $189. My insurance covers it and my moms Medicate has paid for it.

    If you need help finding a doctor or have questions about insurance or billing, their customer service is easy to talk to.
     
  12. Sita505

    Sita505

    Messages:
    38
    Likes:
    18
    Learner is it your Mom’s Medicaid or Medicare? There is a huge difference..
    I need to call the company. Thanks very much for your always great responses!
     
  13. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,656
    Likes:
    4,590
    Pacific Northwest
    Medicare. But definitely talk to the company, as they should have up to date information.
     
  14. Sita505

    Sita505

    Messages:
    38
    Likes:
    18
    Thanks Learner!
     
  15. Murph

    Murph :)

    Messages:
    845
    Likes:
    4,160
    This could be a useful guide to hand to your doctor. (Download the physician's guide (15 pages))

    http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx


    It is a major report by a large independent US organisation called the Institute of Medicine. It was commissioned to look into all the evidence about ME/CFS in 2015. While it doesn't necessarily touch on cytokines and neuroinflammation it does bring home the point that ME/CFS is a real biological illness.

    "The Department of Health and Human Services (HHS), the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Social Security Administration asked the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS. In Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, the committee proposes new diagnostic criteria that will facilitate timely diagnosis and care and enhance understanding among health care providers and the public."

    Some doctors can't be convinced by evidence but this is probably the highest level summary there is.
     
    Learner1 likes this.

See more popular forum discussions.

Share This Page