The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

" I Thought It Was a Typo…" Dr. Zaher Nahle on funding for ME

Discussion in 'General ME/CFS News' started by Kyla, Aug 21, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,221
    Canada

    http://solvecfs.org/i-thought-it-was-a-typo


     
    Joh, OneWaySurvival, ahimsa and 50 others like this.
  2. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,454
    I think I'm falling in love. :love:
    ;)
     
    ahimsa, mango, rosie26 and 7 others like this.
  3. ahmo

    ahmo Senior Member

    Messages:
    4,318
    Likes:
    6,425
    Northcoast NSW, Australia
    :angel::star::star::star::heart::heart::heart::heart::woot::)

    and i've just signed up to their mailing list. :)
     
  4. A.B.

    A.B. Senior Member

    Messages:
    3,562
    Likes:
    21,592
    Kafkaesque: used to describe a situation that is confusing and frightening, especially one involving complicated official rules and systems that do not seem to make any sense.
     
    mango, Valentijn, JaimeS and 5 others like this.
  5. Nielk

    Nielk

    Messages:
    6,682
    Likes:
    9,882
    Sometimes a newcomer's view of what we have been dealing with for decades is the most accurate. He has no preconceived or biased views. He is just looking at the stark raw reality.

    Thank you, Zaher Nahle.
     
  6. perrier

    perrier Senior Member

    Messages:
    435
    Likes:
    747
    Perhaps, and this may be the optimist view, the name of this illness is at fault too. Say multiple sclerosis and concern and sympathy result; say CFS and folks ask: are you always tired? Gee, I am tired too! In the meantime young lives are totally destroyed.
     
    JaimeS, sarah darwins and Effi like this.
  7. shannah

    shannah Senior Member

    Messages:
    1,337
    Likes:
    1,548
    WOW! I feel compelled to donate!
     
    catly, rosie26, sarah darwins and 3 others like this.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK


    We should get this on a t-shirt, surely...
     
    ahimsa, PennyIA, leokitten and 13 others like this.
  9. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    It's possible to post a comment on the Solve page where that piece appears - he's getting some nice comments (not surprisingly, for such a good article).

    He's on the PR forums, by the way, from time to time.
     
    catly, SpecialK82, JaimeS and 2 others like this.
  10. JAH

    JAH Senior Member

    Messages:
    454
    Likes:
    495
    San Jose
    I support them whenever I use Amazon, by using smile.amazon. It's the same as Amazon, a portion of your purchase goes to a charity of your choice - you can choose Phoenix Rising, OMI, Simmaron (Dr. Peterson). A lot of great ones. You can sign up at smile.amazon.com,, then bookmark it and use it to order your stuff. Simple.

    IGive is the other one folks have talked about around here, and I use them as well when I order on line to donate to CFS charities, including this one.

    JAH
     
    leokitten, catly, SOC and 4 others like this.
  11. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    866
    JaimeS likes this.
  12. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    Malevolence. Not even Uncle Sam can be so consistently incompetent for thirty years. Even a broken clock is right twice a day. Yet NIH and CDC are wrong, every day, every year, for decades.
     
    John Mac, ukxmrv, Aurator and 4 others like this.
  13. Nielk

    Nielk

    Messages:
    6,682
    Likes:
    9,882
    If the incompetence would be widespread all across the health agencies and evenly distributed regardless which disease one is looking at, then it could be called incompetence.

    But, when the incompetence is targeted consistently toward a specific disease year after year....for three decades, it cannot be solely attributed to incompetence.
     
    John Mac, catly, GalaxiiGrl and 8 others like this.
  14. WillowTree

    WillowTree ME/CFS is NOT fatigue!

    Messages:
    48
    Likes:
    111
    Illinois
    Agreed 100 percent! One has to wonder what is being protected that for 30 years patients with ME had to be disbelieved and discredited, with an attempt made to define ME out of existence. WHY? What are they afraid will be discovered if ME were properly researched? I just wonder.
     
  15. alex3619

    alex3619 Senior Member

    Messages:
    12,256
    Likes:
    33,633
    Logan, Queensland, Australia
    See: http://thekafkapandemic.blogspot.com.au/
     
    Hutan and ahmo like this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    12,256
    Likes:
    33,633
    Logan, Queensland, Australia
    Let me point out that malevolence can thrive is a broadly incompetent system. It doesn't take a lot of malevolence to create havoc when the systems are not in place to prevent it, and even amplify it.
     
    catly, Gingergrrl, jimells and 3 others like this.
  17. JaimeS

    JaimeS Senior Member

    Messages:
    3,112
    Likes:
    11,234
    Mid-Ohio Valley, United States
    This guy is amazing. Thanks for sharing @alex3619

    [Edit: Seriously, everyone should read THIS ONE, right this very moment.]

    -J
     
    Last edited: Aug 21, 2015
    catly, Scarecrow, Valentijn and 4 others like this.
  18. Hutan

    Hutan Senior Member

    Messages:
    1,008
    Likes:
    5,585
    New Zealand
    Yes! Read it. The claw.. :thumbsup::rofl:
     
    catly and JaimeS like this.
  19. Aurator

    Aurator Senior Member

    Messages:
    623
    Likes:
    3,058
    Leaving aside the possibility of conspiracies, probably the prevailing view in the decision makers' inner sanctum (or sancta) is that it has been properly researched already in a sense: the absence of consistent findings from test results of PWME over the years persuades them it is almost certainly psychosomatic. So why would they want to throw money away researching the hypochondria of a load of whingeing so-and-so's?
     
  20. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    By "conspiracies", I assume you mean a deliberate policy of classifying the illness as "psychosomatic". There is little reason to doubt the existence of this policy when one can read about it in the UK Parliament's 2006 Gibson Inquiry

    The UK psychobabblers have long pedaled their rubbish in the US as well. Simon Wessely's involvement goes back at least to a 1991 NIAID & NIMH conference. Wessely and Sharpe were both part of the Fukuda 1994 criteria group. The "State of Science Consultation" by NIAID (Feb 2000) originally featured just Straus, Wesseley, Sharpe, and a pharma industry shrink until advocates made such a stink that Straus was forced to include a few real experts.

    The disability insurers benefit from "CFS is mental illness". Insurer hatchet men advised DWP, NIH, and CDC that we have a mental illness. Those agencies adopted that policy. That policy is still in effect. These are facts, not theory or speculation.
     
    Chrisb, mango, Raines and 1 other person like this.

See more popular forum discussions.

Share This Page