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.

CDC ME/CFS Grand Rounds webcast live Feb 16 - NIH nervous system infections "big wheel" speaking"?

Discussion in 'Upcoming ME/CFS Events' started by mango, Dec 26, 2015.

  1. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,975
    http://drlapp.com/news/me-letter-december-2015/
     
    L'engle, ahimsa, waiting and 10 others like this.
  2. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    It's only taken them a year after the report release to organize this. Shows just how unimportant this illness remains to the CDC.
     
    Research 1st and geraldt52 like this.
  3. shannah

    shannah Senior Member

    Messages:
    1,356
    Likes:
    1,615
    One could certainly interpret it that way. In February, it will have been an entire year since the report has been out; however, it's been my experience to observe that most government agencies do not usually work at the same pace that private enterprise does. They usually operate very s-l-o-w-l-y. They like to have their meetings and they even to like to have their meetings about meetings.
     
    Hayes, ahmo, worldbackwards and 4 others like this.
  4. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    Except when it is in their interest, like when it was time to disprove the XMRV findings. They even managed to find as much money as needed, with zero whining about limited budgets, empty bank accounts, needing approvals from umpteen managers, or how hard they are working.

    And when there's an opportunity to kick someone off benefits, they are "faster than a speeding locomotive".
     
  5. Kati

    Kati Patient in training

    Messages:
    5,462
    Likes:
    19,549
    It has to do with threats to public health. A new retrovirus? Ebola Virus? MERS spreading? It gets the health authorities very concerned quickly. Canada did not have a single patient with Ebola coming through their borders and yet all hospitals received training on how to appropriately deal with potential threats. (Of course they gave tens of millions of $ in the internatinal fight in Africa and in supporting the mobile hospitals). Canada is also very proud to have a vaccine for Ebola, they are still trialling it. And yet, not one penny for ME.

    The other thing that speeds up release of funding is if a celebrity or perhaps a member of parliament gets sick with a certain disease. Take erectile dysfunction for instance :)rolleyes: :rofl: kidding) -

    I am watching closely as one member of the newly elected Canadian Parliament has just been diagnosed with ALS. He was supposed to run for speaker, but following his diagnosis, removed his bid for it.
     
    Last edited: Dec 27, 2015
  6. Mary

    Mary Senior Member

    Messages:
    2,723
    Likes:
    6,097
    Southern California
    @mango - thanks for the post! Okay, it's late, very very very late to finally start paying attention to CFS/ME, but at least they are finally starting to wake up - I am really glad to see this. This would have been unthinkable a few years ago.

    And @jimells is right of course - Congress whined and moaned about funding healthcare for 9/11 first responders who are dying left and right from cancer, but have no qualms spending millions and billions at the drop of a hat for new military expenditures or foreign "excursions", without first finding out how they are going to fund it.
     
    ahmo and jimells like this.
  7. Old Bones

    Old Bones Senior Member

    Messages:
    808
    Likes:
    4,906
    How very sad. When contemplating other illnesses that are worse than ME, ALS is always at the top of my list.
     
    MeSci, Jennifer J, SOC and 1 other person like this.
  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    956
    Likes:
    3,949
    This came in my email today.

    [​IMG]

    Save the Date

    CDC’s Public Health Grand Rounds Presents:

    “Chronic Fatigue Syndrome: Advancing Research and Clinical Education”

    Tuesday, February 16, 2016

    1:00 p.m. – 2:00 p.m. ET

    Global Communications Center (Building 19)

    Alexander D. Langmuir Auditorium

    Roybal Campus



    Presented By:


    Charles W. Lapp, MD

    Medical Director

    Hunter-Hopkins Center, P.A.

    “Clinical Presentation of Chronic Fatigue Syndrome”


    Elizabeth R. Unger, PhD, MD

    Chief, Chronic Viral Diseases Branch

    Division of High-Consequence Pathogens and Pathology

    National Center for Emerging and Zoonotic Diseases, CDC

    “Public Health Approach to Chronic Fatigue Syndrome”


    Anthony L. Komaroff, MD

    Simcox-Clifford-Higby Professor of Medicine

    Harvard Medical School

    Senior Physician

    Brigham and Women’s Hospital

    “Lessons from the Institute of Medicine and NIH Pathways to Prevention Reports”


    Avindra Nath, MD

    Chief, Section of Infections of the Nervous System

    National Institute of Neurological Diseases and Stroke

    “Post-Infectious Chronic Fatigue Syndrome: Intramural Research at the National Institutes of Health”



    Facilitated By:


    John Iskander, MD, MPH, Scientific Director, Public Health Grand Rounds

    Phoebe Thorpe, MD, MPH, Deputy Scientific Director, Public Health Grand Rounds

    Susan Laird, MSN, RN, Communications Director, Public Health Grand Rounds


    For CDC staff unable to attend the event:

    The session will be available on IPTV and Envision. To join by Envision, reserve a conference room and make the Envision request or use your local room scheduling process to schedule Envision.


    For non-CDC staff interested in viewing the session:

    A live external webcast will be available. For individuals who are unable to view the session during the scheduled time, the archived presentation will be posted 48 hours after each session.


    For non-CDC staff who wish to attend in person:

    Due to security measures at CDC’s Roybal campus, non-CDC staff who wish to attend these sessions in person must have prior clearance and a U.S. state-issued photo ID (e.g., driver’s license, US passport).


    Names of non-CDC staff (both domestic and international) should be submitted to the Grand Rounds Team. Please note that all information for international visitors must be submitted at least 10 days in advance.


    For individuals requiring reasonable accommodations:

    It is the policy of CDC to provide reasonable accommodations (RA) for qualified individuals with disabilities to ensure their full inclusion in CDC-sponsored events. Employees are asked to submit RA requests at least 5 business days prior to the event. Please e-mail the request tograndrounds@cdc.gov.


    For questions about this Grand Rounds topic: Feel free to e-mail your questions before or during the session.


    ________________________________________________________

    The CFSAC Support Team

    Email: cfsac@hhs.gov

    Website: http://www.hhs.gov/advcomcfs/index.html


    Sign up for the CFSAC listserv to receive the latest updates about CFSAC:

    http://www.hhs.gov/advcomcfs/cfsac_email_list.html
     
    ahimsa, Jennifer J, Sidereal and 4 others like this.
  9. shannah

    shannah Senior Member

    Messages:
    1,356
    Likes:
    1,615
  10. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    Very interesting what Cort says about him:

    @mango, this will be webcast live. Would you mind editing your thread title to something like "CDC ME/CFS Grand Rounds webcast live Feb 16 - NIH nervous system infections "big wheel" speaking"?

    Here are details of the webcast:

     
    L'engle, Never Give Up, rebar and 3 others like this.
  11. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,975
    sure, i'd be happy to. however, i can't seem to figure out how? there's no edit button or thread tools button for my post, like there usually is? am i having a brain fog moment, or isn't one allowed to edit a post after a certain amount of time has passed?
     
    Last edited: Jan 27, 2016
    Sasha likes this.
  12. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    That's odd - I'll report my own post to the mods and ask them to do it.

    :thumbsup:
     
    mango likes this.
  13. Kina

    Kina

    Messages:
    10,131
    Likes:
    17,218
    Sofa, UK
    Permissions to edit only last for seven days after something is posted unless you have extended editing permissions.

    I have edited the title for you.
     
    Jennifer J, Sasha and mango like this.
  14. shannah

    shannah Senior Member

    Messages:
    1,356
    Likes:
    1,615
    It all sounds so good doesn't it?

    We've heard announcements of positive things to come for months now. By February 16th, we will have waited for over a year for anything concrete to come out. Is it possible that we will hear any major news of significance in this short session?

    Each speaker has only 15 minutes, hardly enough time to relay much information. They usually like to tell us their credentials, review their involvement and talk in vague terms of positive things to come in the future that reinvigorates 'hope' in our community. Forgive my scepticism and I would love to be wrong but it seems more like a PR campaign for the CDC where everyone can tell us how hard they've been working for us with little actual evidence of that.

    I would think they would choose a different venue to announce any major development forward. Will they actually have details of this proposed study we've been hearing about? I would think it would be more likely that the most we'll get is perhaps a little information about the committee they're forming to study how to set up the study we've been hearing about.

    The IOM report came out on February 10th, 2015. What a patient 'patient population' we are!:trophy:
     
  15. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    I still remember how Bob Dole (US politician) miraculously transformed "impotence" into "erectile dysfunction", with just a little help from the "makers of Viagra" and an expensive television campaign. We just have to convince the drug companies that we can be profitably exploited. :ill:
     
    Jennifer J and Kati like this.
  16. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    Yes, this is about public relations - they will not be talking about timelines or budgets. Meetings, reports, and ignoring patients are what these agencies do best. NIH's Nath is an administrator - does anyone besides Cort really believe he will be at the lab bench? ("Nath might be the guy to find evidence of it")
     
    Sing, Research 1st and GalaxiiGrl like this.
  17. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Messages:
    4,665
    Likes:
    5,478
    Right after we teach them how to get blood from a turnip.
     
    Research 1st likes this.
  18. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    695
    Likes:
    2,291
    So I read Cort's Forum page about this 'new' guy. I see Cort is a great motivator for talking to the uninitiated, thankfully I'm a veteran in detecting tired, state organized research programed. Aren't we all.

    CDC NIH drip feeding new people every 5 years or so, into 'fatigue' research is predictable and normal, especially those with zero experience on ME research. Clearly, these are the best people for CDC NIH to keep the status quo, definitely when 'fatigue' is the main topic of conversation for non fatigue based disorder (ME).

    Should we also be excited about (CDC’s Public Health Grand Rounds Presents: “Chronic Fatigue Syndrome: Advancing Research and Clinical Education”)?

    Tuesday, February 16, 2016


    Well....

    Speakers Include:

    Unger
    (Is the CDC, and claims the mind-body experience in CFS are inseparable, it's a ''circle'').
    Lapp (Backs CDC CBT/GET/Pacing/Sleep Hygeine/Antidepressants - a replica of the failed British approach.
    Komaroff (Backs CDC and claims CBT works for his patients he sees in clinic). Quite odd, as OUR patients on this forum find CBT doesn't work and didn't work for the PACE trial psych patients either.


    So sadly, the same old guard still there.

    I notice the people who could have made a real difference to Americans lives, who devoted their life to seeing ME patients in clinic were unable to influence the IOM programme to claim ME is SEID. Odd that...

    I'm sure this new guy, Dr. Avindra Nath will find by working for the government fatigue based research, they will get little to zero funding available (when attempting to branching away from fatigue based criteria, and fatigue patients), just like non ME experts did for the IOM contract, also now based on fatigue! (''Exertion Intolerance'', ?!).

    Elsewhere outside the twilight zone of CFS mismanagement, MS experts research MS, not 'fatigue' specialists. Somehow this slips the mind of the NIH and CDC.

    Perhaps, to save money and get more funding we can propose Landscape Gardner's work as Orthopedic surgeon's next, might be cost effective and they're also good with their hands?
     
    taniaaust1 likes this.
  19. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    I recall reading posts from at least one patient who went to Komaroff's clinic. They were not favorably impressed.
     
  20. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,607
    Watch and listen carefully. (CFSAC October 2012 meeting) posted by patient advocate Khalyal

     
    Last edited: Jan 31, 2016
    Gemini, Scarecrow, taniaaust1 and 2 others like this.

See more popular forum discussions.

Share This Page