Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

A win with advocacy

Discussion in 'Action Alerts and Advocacy' started by taniaaust1, Mar 6, 2014.

  1. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    There is now one more understanding doctor towards ME/CFS people out there.

    Here's some successful advocacy I just had. I urge all to put extreme anger aside to how we've been treated and try to reach out in comments to articles (they do not have to be ME/CFS articles.. people often have no interest on reading about ME/CFS so it can be helpful to use articles on other things to reach out), reach out in ways in which get attention of people be it drs or whatever. Share the abuse which is going on to ME/CFS people.

    The health depts may ignore severe ME as if they dont want it to exist but that cant stop us educating general public and doctors where we can.

    A doctors comment to a comment I made on the Justina Pelletier case (the girl locked away cause she has a mitochrondrial disorder) . I made a comment in which I mentioned this happening to ME/CFS people eg Karina Hansen and what is going on there which got a doctors interest.. here is his reply.

    Tanya, I just wanted to take a moment to say thank you for your post.

    I took the time to read about Karina and then followed a few links to stories about other people with severe ME/CFS, including a dozen who have died while suffering ME/CFS. I was not aware of deaths from this disease, and I'm a very well-read MD. My compassion level for people with ME/CFS has just gone through the roof, and I feel I've come away with a much better appreciation for the degree of suffering involved with this condition. So, I wanted to thank you for contributing to my knowledge and really boosting my ability to empathize with ME/CFS patients.

    Again, thanks and wishing you a full recovery."

    Advocacy is slow hard work but each dr educated a bit more in this horrific illness can help us and WILL help anyone with this illness who goes to see them (Another thing.. doctors often go on to educate other doctors. A doctor who more understands this illnesses severity is one who is likely to say something when another doctor who doesnt, says something wrong).

    Thou I hate having to get others interested in our illness throu a different illness, I do think we should be using the Justina Pelletier case more to bring attention to the fact this is being done to ME/CFS people too (Karina Hansen and others) and use that to help advocate for ME. We need to use whatever we can to get the ME/CFS situation better known.

    Anyway. I wanted to share what I see as an advocacy win (things like this can make a big difference). We need to educate drs on the seriousness of ME.
  2. Sasha

    Sasha Fine, thank you

    Well done, Tania! :balloons:
  3. Nielk


    Thank you, @taniaaust1 -

    It is a great reminder that we can slowly change the world one person at a time. I'm glad you shared it with us and we do need to take every step we can in educating the ignorant. In addition, as you stated, there is an exponential benefit as I'm sure that this doctor will start discussing this with his colleagues who might have known very little about the situation.
    rosie26, MeSci, Cheshire and 5 others like this.
  4. Kati

    Kati Patient in training

    Thank you Tania, it's great to hear that.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    Seconded! That doctor's patients will now be in a much better position. Shame it doesn't help you directly, which is what I'd hoped when I saw the thread title.
    Little Bluestem likes this.

See more popular forum discussions.

Share This Page