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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Llewellyn King interviews Dr. De Meirleir (Part 2): ME/CFS Alert, Episode 43

Discussion in 'General ME/CFS News' started by Ember, May 10, 2013.

  1. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,781


    “I think within five years we will be able to help 70% of the patients.”
    Shell, Jarod, alex3619 and 6 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,914
    Likes:
    5,770
    Albuquerque
    Thanks Ember

    Very interesting and encouraging.

    Sushi
    snowathlete and Ember like this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,158
    Likes:
    7,044
    UK
    Sounds like he's got some interesting stuff there that he can't really talk about yet.
    snowathlete likes this.
  4. Kina

    Kina Moderation Team Lead

    Messages:
    5,536
    Likes:
    4,077
    Ontario, Canada
    Great interview, especially this:


    snowathlete, Sasha and Valentijn like this.
  5. Artstu

    Artstu Senior Member

    Messages:
    184
    Likes:
    73
    UK
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,158
    Likes:
    7,044
    UK
    Those who have been sick for thirty to forty years and have a lot of abnormalities at the molecular level they're going to be very difficult to treat.


    That bit was a bit of a bummer, though - 27 years ill, here. o_O

    I wonder what sort of abnormalities at the molecular level we could have that shorter-term people don't though?

    In general, very upbeat.
    snowathlete likes this.
  7. snowathlete

    snowathlete

    Messages:
    2,152
    Likes:
    2,503
    UK
    It really sounds like he has found something big. Cant wait for the paper to be published inn 2013/14.
    Kati, LisaGoddard and merylg like this.
  8. LisaGoddard

    LisaGoddard Senior Member

    Messages:
    115
    Likes:
    107
    I agree it is really tantalising.
    One of the worst symptoms of ME is 'waiting'.
    ukxmrv and snowathlete like this.
  9. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,456
    Likes:
    1,967
    London
    I wonder as well, Sasha.

    Don't really understand why the 30, 50 years should be impossible to treat. I'm around 30 now.
  10. Daffodil

    Daffodil Senior Member

    Messages:
    2,828
    Likes:
    813
    he could be referring to the misfolded proteis (prion related??) that could be difficult to bring under control.....just guessing. he does a prion test of some sort
  11. alex3619

    alex3619 Senior Member

    Messages:
    7,222
    Likes:
    11,340
    Logan, Queensland, Australia
    I don't regard misfolded proteins as prions. He does find misfolded proteins, and there was concern that they might be prions at one point (all prions are misfolded proteins, but not all misfolded proteins are prions). Prions are misfolded proteins that cause further misfolding of proteins, typically unfolded proteins of the same type. There are so many reasons why we might have misfolded proteins, and top of the list is glutathione inadequacy.

    If I were going to speculate on what might cause more issues in long term patients, it would be more mitochondrial damage and more vascular remodelling. More brain degeneration may also be an issue.
  12. PNR2008

    PNR2008 Senior Member

    Messages:
    435
    Likes:
    673
    OH USA
    I'm at 25yrs now. Any improvement in my symptoms would be a welcomed relief but it still hurt, I thought from the beginning that I'd beat this thing. I know I'm being a baby but it depressed me all week-end.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,914
    Likes:
    5,770
    Albuquerque
    PNR2008

    I'd also guess that in his comment he would be taking into consideration not only how long you have been sick, but what degree of disability you have had for how long. Many of us have been mildly ill for much longer than we have been seriously debilitated. Since I am one of this group, I am just choosing to think of it this way!

    Sushi
    LisaGoddard and Sasha like this.
  14. snowathlete

    snowathlete

    Messages:
    2,152
    Likes:
    2,503
    UK
    I doubt he is writing off these longterm patients, I think he is just saying they are harder to resolve. I think that has to be true, but anything which gets us to an understand of the underlying cause will help increase all patients chances so try not to read it as a negative too much. I do think it will improve all our chances of improvement with those less severe, less complex cases being easier, but even those other cases should be treatable, even if more time to get less improvement. Either way, it signals a much improved situation than current!
    Kati, Sushi and Sasha like this.
  15. PNR2008

    PNR2008 Senior Member

    Messages:
    435
    Likes:
    673
    OH USA
    I agree with Sushi and Snowathlete. My reaction was purely emotional plus a migraine messed up my brain chemistry these last few days. Calling drs for botox shots before a herd of them come through the gate and I loose the brain cells I already have. Thanks.
  16. Gijs

    Gijs Senior Member

    Messages:
    122
    Likes:
    121
    I am very curious because de Meirleir have said many things in the past. I am a little sceptical. I think that there will be no change or breakthrough for ME/CFS in the next 10-20 years. I hope the Meirleir will be right this time.
    Blue and merylg like this.

See more popular forum discussions.

Share This Page