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.

CFSAC Spring 2013 (May 22-23): How to Participate

Discussion in 'Phoenix Rising Articles' started by Mark, May 8, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,012
    View the Post on the Blog

    View the Post on the Blog
  2. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,188
    Queens, NY
    Thank you, Jennie. I have been waiting for this article because I have asked to testify (via phone) and wanted a blueprint as to what to include. This article has been helpful for me. I will review this list of recommendations carefully.
    jspotila likes this.
  3. snowathlete

    snowathlete

    Messages:
    2,155
    Likes:
    2,510
    UK
    Thanks Jennie!
    jspotila likes this.
  4. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    FANTASTIC Nielk!! Great news! I'm thrilled to hear this was helpful
    Valentijn and Nielk like this.
  5. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,188
    Queens, NY
    Actually, I would love to hear from others what they think the three most critical recommendations are?
    snowathlete likes this.
  6. snowathlete

    snowathlete

    Messages:
    2,155
    Likes:
    2,510
    UK
    for me, its these three in this order:

    NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.

    NIH should issue a $7-10 million RFA for outcomes measures, and biomarker discovery and validation.

    Pool resources to create Centers of Excellence, using physical or virtual locations.
    jimells and Nielk like this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    8,159
    Likes:
    7,052
    UK
    That one:

    NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.

    would certainly be my top one too.
    jspotila and Nielk like this.
  8. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,188
    Queens, NY
    As far as removing the CDC toolkit. What exactly is wrong with the toolkit besides that they recommend CBT and GET?

    I just did a quick reading of it and was actually impressed by this:

    • Treat clinical depression only. People with CFS may show signs of depression, but not have depression. Prescribing drugs for depression when a person is not depressed may make symptoms worse.
    • Use caution in prescribing/taking antidepressants. Some antidepressants may make individual CFS symptoms worse or cause side effects.
    They must have changed this because when I first fell ill, ten years ago, they recommended antidepressants as a treatment.
  9. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    Multiple problems have been identified in the Toolkit, including the promotion of CBT/GET and the recommendation not to do many lab tests. CDC has admitted that the Toolkit no longer matches the website (after it was revised) but have insisted on continuing to use the Toolkit until there is money to write a new one. The discussion at the June 2012 meeting about the Toolkit covers a lot of this, and can be found in the meeting minutes.
    snowathlete, Valentijn and Nielk like this.
  10. Sasha

    Sasha Fine, thank you

    Messages:
    8,159
    Likes:
    7,052
    UK
    Excellent post today on Jennie's blog about why people should contribute their opinions to this meeting:

    http://www.occupycfs.com/2013/05/09/why-and-how-to-cfsac/
    snowathlete and jspotila like this.
  11. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    Several people requested suggestions on what to use as the highest priorities, so I created a template you can use for submitting comment. I recommend customizing it, but if you are short on energy you can use it as is. The deadline is Wednesday!

    http://www.occupycfs.com/2013/05/10/cfsac-input-template/
    snowathlete likes this.
  12. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,188
    Queens, NY
    Thank you, Jennie. As far as the CDC toolkit, do we want them to remove it totally or just make changes to it?

    The reason that I ask is because sometimes when one asks for too much change, nothing gets done. Sometimes the approach of not saying either/or but, let's work on it, might get better results.

    I guess it's hard to talk about specifics but, if they just removed GET and CBT, it would be a step in the right direction.
    jspotila likes this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Jennie- Nice post. Thanks for organizing and rallying patient comments. So important of course.

    Gabby- In commenting on the priority of existing recommendations, I would suggest you just give your priority to the recommendations as they exist.

    If you feel that changing a portion of the toolkit is a better request than dumping the whole thing, I would bring that up either now or in future comments as a seperate suggestion for making a NEW recommendation.
    Nielk likes this.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Fwiw, I feel the toolkit is a real piece and should just be thrown out rather than revised.
    snowathlete likes this.
  15. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    CDC has said they do not have the budget to revise the Toolkit right now. That is one of the reasons the CFSAC recommended that it be removed from the website until it can be revised. Beth Unger said at the October 2012 meeting that CDC discussed whether to remove the Toolkit and decided against it. It was a point blank refusal to follow the CFSAC's recommendation. Most advocates I've spoken with feel that this recommendation should still be made a high priority because the GET/CBT advice is misapplied by doctors and harms patients.
    snowathlete, Nielk and Sasha like this.
  16. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,188
    Queens, NY
    I think I will concentrate on these three recommendations:

    1-NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.

    2-Hold a stakeholders’ workshop to reach a consensus on case definition.


    3-Remove the CDC Toolkit for healthcare providers from the CDC website.

    Does anyone have the figures of how much funding we had from the CDC in 2012? How does it compare to other similr illnesses like MS, Lupus, Lyme?
  17. snowathlete

    snowathlete

    Messages:
    2,155
    Likes:
    2,510
    UK
    This is definately true. The way to make worthwhile change happen is to focus on one (or maybe two) things and really push them. If you try to get too many things changed, then what happens is there is no focus so either nothing happens, or people just go after the "low hanging fruit". This may result in some change, but in the bigger picture it may not actually change much of significance. It gives them the chance to focus on the areas that they are most comfortable changing and these usually are not the ones that will be the most beneficial. My job used to be to make change happen.
    Nielk likes this.
  18. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    BINGO! We've seen this happen. Dr. Lee made a big deal out of the posting of the Primer on clinicalguidelines.gov. That was an easy piece of low-hanging fruit. The harder stuff, like case definition meeting, is back burner for sure. I highly recommend people select around 3 recommendations to focus on - certainly no more than 5.
    Nielk likes this.
  19. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,188
    Queens, NY
    Anyone here plan to give testimony next week?
  20. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,188
    Queens, NY
    I just sent in my written testimony.
    snowathlete likes this.

See more popular forum discussions.

Share This Page