Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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What I've Learned from E-Patients

Discussion in 'Other Health News and Research' started by starryeyes, Dec 11, 2009.

  1. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Hello Fellow E-Patients. ;) I'm filing my Bookmarks and I came across this webpage and wanted to share it with all of you. It's interesting to hear what a doctor has to say about Online Medical Support Groups. Some quotes and then the link:

    Just like snowflakes! :)
    If this intrigues you read on here:

    And if you are unlucky enough to have a doctor who insists that you should not be in a Support Group or be looking your illness up online, hand him/her a copy of this article. ;)
  2. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    more quotes from E-Patients article

    Thanks teejkay. This is a very interesting article.

    Sounds a lot like this wonderful forum. Aren't we a fortunate bunch!!!
  3. George

    George Guest

    Thanks TeeJ

    That was a heart rending read. It's interesting to note, the dozen or so doctors that do treat CFS are experts precisely because they have been having dialogues with patients for years thus, they have the benefit of vast experience gleaned through the patients.

    It is a sad commentary on the American Medical Association that has advocated for years the training of doctors to distrust all patients, to maintain a superiority with the people they treat and to engage in generalizations about all populations. It makes for a body of untrustworthy, judgmental and static individuals so brittle in their thinking they can break but rarely bend.

    It's wonderful that human nature can and does win out against propaganda and provide some wonderful doctors out there who believe in the patient and genuinely practice "first do no harm".

    Someday I hope to meet one of them.
  4. Marylib

    Marylib Senior Member

    New Zealand
    Thanks again Teej

    Yes both fascinating and chilling...I guess we all knew that most doctors are trained not to trust us...It is pretty obvious!

    But there are indeed a few who have stepped out of the mold. It must take guts. The peer pressure must be strong.
  5. Robin

    Robin Guest

    That's interesting! But I'm kind of surprised by this.

    When my dad was diagnosed with diabetes ten years ago, his doctor advised him to go to a support group. The one he went to was sponsored by an insurance company. They would go to the supermarket with their leader to learn how to read food labels and choose diabetic friendly food. Mental illness and addiction treatment is commonly supplemented with group therapy.

    Maybe that's really old thinking from the epilepsy specialist's medical school!

    I was listening to NPR about doctors dealing with patients bringing in articles they read from the internet (Google University). Some of them didn't like it, but most welcomed an informed patient who is interested in his/her own health. They were more frustrated by people who didn't follow medical advice.

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