Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Shared Decision Making between doctors and patients

Discussion in 'Other Health News and Research' started by MeSci, Jan 31, 2016.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    This interesting NEJM article is by a doctor, and discusses various aspects of this issue, including several significant (potential) problems.
    More at the above link. There is also a Comments section.
  2. barbc56

    barbc56 Senior Member

    Very good article! Often an "if only" situation.:(

    Warning, this post turned out to be very long.

    I've often commented about the excellent health care I get. Obviously, with a few exceptions as there aren't any systems that are perfect. The medical center I go to received federal money to be trained for this delivery system involving patients.

    I'm not bragging about my health care. I believe it's important to see some positive protocals in place especially for advocacy purposes.

    From the time you see the nurse for vitals, the computer is turned towards you. Your information is also available online but it's not as detailed. When I had my kidney stones, I got to see the first and subsequent C scans and in a way it was fascinating as he went through the layers (?) of the kidney showing me the stones. This has also been done for other x rays I've had such as the dexa scan, and when I broke my finger. The xrays are immediately available on the computer. I would think/hope other medical centers have some of these services. I'm sure there are more protocals but these are the ones I immediately thought of. I see my PCP this week and it will be interesting to see if my mammogram is available to see. I would think it would if you ask but since mine was normal, it may not be necessary.

    Though I'd rather see the money go to research about me/cfs, I think this form of medical service is money well spent. It benefits all patients, and especially, along with patients with other health conditions that get the same lousy health care as we do.


    A few more:

    The staff such as the receptionists have also receive training.

    The information you get online is also available with charts showing past results.

    I'm not sure if this is connected, but if you have a history of kidney stones and go to the ER, the protocal now is that you get an immediate pain killer. The one time I went to the ER before this protocal, I had to wait 45 minutes. I was literally screaming for someone to just hit me and knock me out!

    The doctors talk in person to the other doctors and with the instant availability of the information coordination is more efficient and they see the bigger picture.. I was shocked when I went to the hematologist for low ferritin and he said he learned a lot about sleep issues but more importantly how sleep apnea contributes to low feritin. Something about lowered oxygen.

    And appointments are longer depending on why you are seeing the doctor. They hired more doctors. Egads, be still my beating heart.

    I just wish this was available for everyone and certainly don't take it for granted.

    One other thing and I'll stop. If you have psychiatric/counseling records, these are not available for other doctors and medical staff, unless you give permission to have this done. They do see a diagnosis but nothing else.
    Last edited: Jan 31, 2016
    MeSci, Simon and daisybell like this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    I would LOVE to see my scans.

    The NHS are saying:
    on this page.

    Having slightly misremembered, I recently told my GP (PCP) that this referred to some records rather than full records, and even then he thought it over-ambitious.

    I am currently waiting for my latest test results to be posted to me by snail-mail. I have been a little shocked to learn that the standard U&E (urea and electrolytes) tests no longer include bicarbonate, and my GP could find no way to order this to be tested. I believe that this test may provide clues to the reason for our electrolyte deficiencies (excess acidity).

    I think it will be a long time before we get away from having to endure a lot of 'professionals' talking about us behind our backs and then returning to us with their 'expert', incontrovertible decisions!
    barbc56 and Snowdrop like this.

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