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!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

60 minutes- hard cases- investigating rare & tough diseases

Discussion in 'Other Health News and Research' started by SaraM, May 20, 2012.

  1. SaraM

    SaraM Senior Member

    Messages:
    502
    Likes:
    18
  2. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,376
    Likes:
    1,954
    Australia
    This is a great research programme, though they can't necessarily 'cure' many of these patients, the fact that they are throwing everything they have at it is great.
     
  3. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,850
    Likes:
    931
    US
    Wow, quick summary for anyone who needs it. This doc at the NIH takes only extremely rare cases and treats each patient as an inpatient for a week, on taxpayer dollars. They only solve 10% of the cases. They only take 160 cases a year and thousands want to see him. 40% of the cases are children. However he discovers genetic diseases so many others can get diagnosed and treated.

    I liked this quote from the doc "It's an incredible window into the human spirit to see people at this juncture. In other words, with a desperate disease. Again, I liken it to war. There are certain epic things in life when you see another person die or another person give up a life for someone else. And we see that in the way that people conduct themselves under these very difficult circumstances."
     
  4. merylg

    merylg Senior Member

    Messages:
    764
    Likes:
    494
    Sydney, NSW, Australia
    Thank you Sara. An interesting insight into the work of Dr William Gahl and his team.
     
  5. Calathea

    Calathea Darkness therapy

    Messages:
    1,096
    Likes:
    564
    Scotland
    Interesting article. A friend of mine has an eye condition that rare, I think there are less than ten people alive today in the world who have it, and most of them are related to each other. She has a nightmare time of it getting doctors to believe her, even though she's had a diagnosis since childhood, and when they do understand that she really knows the name of her own eye condition, they tend to say things like, "Ooh, how interesting, I've never heard of this before. Could I use you for a case study?" And of course, what she wants is treatment!

    I presume this guy specialises in some way - I'd be astonished if he can cover all areas of medicine. Neurological and endocrinological stuff, it seems.

    While this mainly sounds excellent, can I just mention that it is really unpleasant to read articles which spend the first page making it very clear that Americans are the only people on the planet who are of any importance whatsoever?
     
  6. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    He has an interdisciplinary team of medical doctors at his disposal. This, in my opinion, is how all healthcare should be delivered. Human biology is too complex (in a messy kind of way) to be fully grasped by just one person, especially when dealing with pathological states requiring extensive troubleshooting.
     
    SickOfSickness likes this.
  7. Calathea

    Calathea Darkness therapy

    Messages:
    1,096
    Likes:
    564
    Scotland
    Well, that is how healthcare tends to be delivered, really. An interdisciplinary team of doctors from various specialties is what makes up a hospital. His is evidently a much smaller team than your average hospital, and it sounds far better connected together. In a hospital, once you've been sent to one specialist, you often find that they have no knowledge of other areas, and worse, are not interested in working with doctors from other areas. So that would be an advantage. But since it's a much smaller team, it's still likely that it needs to stick to a more limited area in one way or another. I wonder if my friend with the eye condition would be eligible, for instance.

    I bet you could do a nice job for ME patients if we had a similar approach: a set of doctors from various fields covering the many areas which ME gets into, but all working closely together, so that we wouldn't be constantly hearing, "This is getting outside my area of specialty now, so I'm afraid I have no idea how to proceed." I've a feeling there's the odd clinic like this worldwide, but it's a long way from being the norm. I wonder how you could integrate it into a normal hospital system, rather than just very selective private healthcare which most patients would be unable to access? After all, you get things like Family Planning Clinics which cover quite a range of areas (contraception, abortion, gynaecology, obstetrics, PMS, menopause, STIs, LGBT sexual health, relationship counselling).
     
  8. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    A few months ago I had to go to the emergency room. I had exactly one doctor look at my symptoms. No team was anywhere to be found. The fact that a hospital has a bunch of doctors doesn't mean they work collaboratively to solve problems. Working collaboratively as a team is what I was referring to.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,106
    Likes:
    6,090
    Albuquerque
    A friend of mine was accepted into this program--she has ME with an emphasis on dysautonomia. Her report of her time there is frightening. None of the doctors were really interested in her real symptoms and testing for them--they were interested in testing for things they were interested in. Also, the members of the "team" did not talk with each other, they did not do any of the tests that an ME specialist would do except the TTT, and to top it, they nearly killed her by giving her something that was highlighted in her chart as something she had a serious allergy to.

    She saved herself by asking about each thing they were giving her or using in tests (they usually didn't want to tell her!). In the end she came out with nothing she didn't know already except a new level of anger at physicians. So while this program must be great for some, the one patient I know from our community had the usual horrible experience there.

    Sushi
     
    garcia likes this.

See more popular forum discussions.

Share This Page