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

mango

Senior Member
Messages
905
CDC Grand Rounds on February 16 at 1-2 PM.
Every month the Centers for Disease Control and Prevention hosts an hour long seminar from the CDC Auditorium in Atlanta. These seminars focus on current key topics, and for February the topic will emphasize CFS/ME/SEID and the recommendations made in two special reports: recent recommendations from the Institute of Medicine (Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness)* and the Pathway to Prevention (P2P) report.

The seminar will include presentations by Dr. Beth Unger (Chief of CDC’s Chronic Viral Diseases Branch), Dr. Lapp, Dr. Tony Komaroff (Harvard School of Medicine) and Dr. Avi Nath (NIH’s NINDR). This session of Public Health Grand Rounds will describe the illness and impact on patients, present CDC’s work addressing CFS/ME as a public health problem, present IOM recommendations, and discuss next steps to addressing this problem.

While the presentation will originate from the CDC auditorium in Atlanta, it will be webcasted to thousands of providers, researchers, and the public. Details and previous programs can be viewed at http://www.cdc.gov/cdcgrandrounds/ To review the Institute of Medicine report, go to http://iom.nationalacademies.org/reports/2015/me-cfs.aspx#sthash.h1qfxM13.dpuf . Hint: the complete report is over 300 pages, but the executive summary is pared down to about 25 pages.

http://drlapp.com/news/me-letter-december-2015/
 

shannah

Senior Member
Messages
1,429
It's only taken them a year after the report release to organize this. Shows just how unimportant this illness remains to the CDC.

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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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.

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".
 

Kati

Patient in training
Messages
5,497
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".
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.
 
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Mary

Moderator Resource
Messages
17,291
Location
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.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
This came in my email today.

cid:image002.jpg@01D1579D.727BC110


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
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Cort has written an article about the last speaker Avindra Nath.

http://www.cortjohnson.org/forums/t...ecialist-to-speak-at-cdc-me-cfs-meeting.3582/

Very interesting what Cort says about him:

Cort said:
NIH Sends Top Central Nervous Infection Specialist To Speak at CDC ME/CFS Meeting

[...] We may have heard much of what the first three presenters will say but then comes a new face: Dr. Avindra Nath. Nath is the Chief of the section on Infections of the Nervous System at the National Institute of Neurological Diseases and Stroke (NINDS) and the intramural clinical director of the NIH's huge Clinical Center.

He's also been tasked with developing a center dedicated to translating new therapies for neurological disorders to clinical use. Nath has co-authored hundreds of research papers. A recent one - published in renowned Lancet journal - focused on central nervous system infections and neuro-immune damage. A short February 2015 paper that called neuroinfectious diseases "a crisis in neurology" called for more action to understand them.

[...] Nath is not a little or medium wheel at the NIH - he's a big wheel. The fact that he's presenting to the CDC on the NIH's ME/CFS research study suggests the NIH may indeed enlisting some of its best and brightest in an attempt to understand it. Nath's presence is also another sign of the NINDS Institute stepping up to the plate. If a central nervous system infection is present in ME/CFS, Nath might be the guy to find evidence of it.

His talk will probably be a quick one; with four presenters in an hour none of the speakers has time to do much more than provide a short overview of their subject. In that time, though, Nath should be able to tell us much about the NIH's new study to comprehensively analyze a cohort of people with ME/CFS.

It's hard to know what's going on at the NIH. Their response to CFSAC recommendations was disappointing and yet here they are sending one of their top researchers to present on ME/CFS to the medical world. That's certainly good news.

@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:

Cort said:
The presentation will be webcast "to thousands of providers, researchers, and the public." Details and previous programs can be viewed at http://www.cdc.gov/cdcgrandrounds/.

The presentation will be archived and viewable after 48 hours. The CDC gave this link for those wanting to watch the presentation live.
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
 

mango

Senior Member
Messages
905
@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"?

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?
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
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?

That's odd - I'll report my own post to the mods and ask them to do it.

:thumbsup:
 
Messages
10,157
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?

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.
 

shannah

Senior Member
Messages
1,429
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:
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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 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:
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Forgive my scepticism and I would love to 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.

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")
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
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?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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.

I recall reading posts from at least one patient who went to Komaroff's clinic. They were not favorably impressed.