Mr. Timothy Lyden: Walter, you have to share your screen again. Andy is asking are there plans to investigate physical abnormalities found in post-COVID, long-COVID cohorts and in ME/CFS cohorts so patients who receive a diagnosis of ME/CFS tend to have very little physical, scans, exams so there may be missed issues. I was the primary liaison for the communication and partnership with this group of people living with ME and this was proven to be extremely successful. So we're very excited about these two things and I think that they will show some of the productivity as well as benefit the community. I think that's the short answer. Because there's just so many limitations of you know first of all people's time for more than a day meeting but second of all, the stamina to be able to stay focused on, it was tough for me so I can't imagine how it was for other people suffering with this, so yeah. 0 So Courtney's asking how we can move treatment trials for ME/CFS and post-COVID urgently and Jen the same, how can we address rapidly executing clinical trials. So no one would ever think of doing that, but if it holds then those things might actually inform the study of ME/CFS. panel at the NIH meeting “Accelerating Research on ME/CFS” April 5, 2019 I would like to echo my thanks to Vicky [Whittemore] and Joe [Breen] and Andrew [Breeden]. Like I said we had accepted I think it was eight members of the community to serve on the Community Advisory Committee and during the summer and during the pandemic lockdown we reached out to everyone that was originally accepted, now it had been a long delay so that was not something I was looking forward to, having to do my mea culpa with everyone I  about resurrecting our work but the fortunate thing is I was able to explain how we would now be expanding the scope of the Community Advisory Committee to serve as a network-wide resource so that really got people excited and I've gotten a great response to wanting to participate and being willing to participate. That has gotten delayed because of the pandemic. Dr. Vicky Whittemore: Yeah so individuals who are post-COVID who meet the criteria for ME/CFS. 183 0 obj <>stream And we're also delighted to be joined by Allison Kanas, administrative director of community outreach engagement at the Center for Solutions for ME/CFS at Columbia. These patients are a little bit complicated because they have multi-organ involvement. Thank you. StarLight: Joe Mambretti So as I said, I've been the one working on the various administrative capacities on the ME/CFS research that we've done at Columbia since we started with the XMRV research in 2011 and then we had the Chronic Fatigue Initiative that we worked on for a few years as well, with more pathogen discovery focused work. And now we'd like to turn to our special guest today, Allison Kanas. Thank you. Ms. Allison Kanas: No, that's fine thank you. Thanks. Avi. So we're in the process of developing that agenda and in the next couple of weeks and we'll get that out to the community as soon as that's ready. Ms. Allison Kanas: Thank you for having me. Do you want to comment on how you think technology has changed things. Dr. Vicky Whittemore will talk about the Trans-NIH Working Group and the Interagency Working Group. So I thank everybody for their patience and sticking with us, but we're excited that we have a pretty solid approach to this and we're looking forward to the work that we're just starting together. Careers in Non-Profit Organizations – Sadie Whitaker, PhD, Jaime Seltzer, Linda Tannenbaum 5. So then that leaves me with ending with our Community Advisory Committee. If you see the 567 percent increase of followers and that just expands our impact and reach so much more broadly. We really then sat back and said well how can we achieve the goal of outreach and engagement and break down this barrier between the community and the researchers. I think we need to take in a little more data at this workshop for example, hear from the community and then move forward, but as you know Vicky, we're always open to discussing these ideas and how we might support them. Hints of many incoming announcements but we've heard that before. We have several questions that have come in. So that's all I had at this stage. So at the same time we were developing our outreach and communications approach, we also we also knew that we were committed to forming a Community Advisory Committee and honestly that was a bit of a struggle for us. ----- Forwarded message -----From: Christopher A Konger Date: Mon, Aug 18, 2014 at 12:56 PM Subject: Utah Access to NIH via AL2S To: "Joe Breen (joe.breen@utah.edu)" , Samuel Taylor Liston Cc: Brian Haymore , Wayne Bradford , Alex Feltus … Dr. Breen will talk to us about the consortium. They were extremely grateful for the partnership that we had with the Microbe Discovery Group project and they helped us raise, which really you know highlights the dedication of this community, they helped us raise over $220,000 from microdonations, thousands of microdonations globally. Dr. Walter Koroshetz, our director, will introduce all of the speakers and they will each make remarks after which we will invite you to have some questions. Joseph Breen: Thank you Dr. We have everybody identified and we are housed on a Slack channel and you know it has worked pretty successfully. So that we can study those and then test them which is what this question is really after but I think we need to understand a little bit more of the landscape of what is being seen and I think that unfortunately we do have many patients who are expressing that and are as the numbers that Walter showed in his in his presentation, so I think it will come but on a sort of a local issue it's like the clinical trial sites are really quite busy with these, currently testing vaccines and therapeutics. We had these two sites and our website but our traffic was pretty low and how we had to be more creative with how we engaged with the community. Joe Breen from the National Institute of Allergy and Infectious Diseases told me last November that the award funded research into enterovirus D-68, which can cause acute flaccid myelitis in children. Dr. Katz was a leader in investigative dermatology and trained a ... Pérez-Stable commended Drs. Walter would you address that or Avi? Can you keep a record of that or something? But then once we launched our Q and A series more broadly you'll see that really broadened our reach quite significantly. All the Centers had interesting results to present and as I've mentioned on these calls in the past you know we expect the productivity that you can see in the literature to increase as we're nearing the latter stages of the support for this segment of the CRCs and I think we are starting to see that. But we're back working on that again and hope to have that workshop in spring of 2021. Communications and Engagement at the National Institute of Neurological Disorders and Stroke at NIH. There's several questions about clinical trials for post-COVID and for ME. So anytime there's a paper that comes out of any of our sites, a meeting or a presentation that one of our researchers or affiliates are doing or any newsworthy item that we feel would be helpful for the community to be able to share and reach so broadly we put it we warn each other and alert each other to upcoming information and help with the language for posting on all of our social media sites. When will the database, this is from selinl, when will the database from the center grants be available to other investigators and how and where do we access it? Thank you. And I'd also say that we received 24 questions from MEAction yesterday. Submitting a grant application to NIH – Joe Breen, PhD, Vicky Whittemore, PhD 2. Vicky Whittemore & Joseph Breen The National Institutes of Health headquarters hosted the leads of the recently funded ME/CFS Collaborative Research Center awards and partner organizations. Did you have a second question in there Vicky? However then we said, then we once we had the Q and A series then we have more of an established following we then decided to dig a little deeper and started our Center for Solutions for ME/CFS blog, which delves more deeply into specified topics and also is another outlet for engagement because there's you know, you can comment and we can respond and things like that. And recently with the conversations that we've had with everybody we really saw a need within the network and within you know the broader ME/CFS community to expand CMEs. And another question from Scott Simpson who comments that in the HIV community patients needed to develop the meaningful involvement of people with AIDS in order to move beyond tokenism. Dr. Walter Koroshetz: I would also say that NINDS is funding a couple of grants now which are looking at large numbers of people who had COVID and looking for what their problems are, particularly in the cognition, fatigue space, exercise intolerance is clearly a big problem in post-COVID but heart and lung are also big issues. And from October 2019 we went back and forth a few times with multiple iterations of a proposal that would be responsive to what the NIH is interested in funding as well as responsive to the community needs and how best to shape a Community Advisory Committee and what type of information we wanted to be able to disseminate. We're also working with our partners at the Canadian, at ICanCME, to develop a terms of reference, which is kind of like a bylaws for how a Community Advisory Committee operates. At NIH intramural program Dr. Nath who you've heard from before who runs the ME/CFS protocol at intramural could also mention about his protocol for post-COVID. So our reach is getting that much broader. endstream endobj startxref What we did was solicit questions through our social media sites solicit questions after we had the website developed and it explained what we were doing, we solicited questions from the community that they wanted our researchers to answer. We decided to come up with the strategy of the Ask Our Researchers Video Q and A series. The Center for Solutions serves as a conduit between the NIH CRCs and performing these activities on behalf of the network, not just on behalf of the Center for Solutions anymore. So we don't have any idea what it's going to be but it could be, like there's a report of iron metabolism abnormality in post-COVID that came out yesterday, you know three months after the infection. So clearly we know with COVID that we're dealing with something that is lasting longer in some people and we don't know why, what determines that, we don't know how long things will take to get better, and we don't know if some people will have really long persistent problems like we've seen with ME/CFS. Dr. Avi Nath: I can give you an update. Dr. Walter Koroshetz: Okay, so the point here is that of hospitalized patients there is a large percentage of folks who are having trouble even three months later. Some of those things are certainly different than what you see in ME/CFS but clearly things that you might expect after COVID-19. Dr. Vicky Whittemore: I'll jump to a question for Dr. Breen. We're really excited to be, the current status of this is we are designating the appropriate folks to the working groups. So the first thing I wanted to show you is, on this first slide is a study from Spain of people who were hospitalized for COVID-19 and this is 110 days later, so this is more than three months later and you can see that 55 percent of the people are completely. None of us are really used to this way of doing things, so we are continually working with each other to remind each other to share this type of data, this type of information to be disseminated. We were able to pull out some researchers from our annual meetings and we had the questions ready for them and they recorded answers during our annual meeting. And we were excited as Joe said, we had our network meeting last month and we had what I thought was a, and others as well from the feedback I received, thought what is a very productive conversation. h�b```�D�~�ʰ !�0�D�?�,h0Y�����R�*'���k/|�b�i��êU�v�j`�B�!`2`n�B&�ck��; Mike Humble, NIEHS : Joe Breen, NIAID . Dr. Vicky Whittemore: Thank you, Dr. Koroshetz. We'll have a transcript of this call on the NIH ME/CFS website quite soon. The agenda is still in development, but I anticipate that the agenda and registration will be available by the end of the week. And you're going to hear more from Allison about that. We see ourselves as you know bridging the gap between ME/CFS stakeholders, the caregivers, advocates, and people living with ME and the researchers, clinicians, and sponsors here. See more of Osler's Web: Inside the Labyrinth of the Myalgic Encephalomyelitis Epidemic on Facebook However as anyone who works in communication and communications knows what you communicate is only as powerful as the audience that you can reach. So as you'll see, outreach is really one, unidirectional communication and that's communication we see it as from the research centers or the Collaborative Research Centers to the community. And you know so that went back and forth for many, many months and then in December or January, December 2019, in January 2020, we came up with a strategy and approach that we were all quite happy with. The other thing we'll be launching in January as well is another tool that the data coordinating center has developed which is called searchMECFS, which will allow investigators to search a biorepository that we've brought in from a CFI-supported study that's now being housed at the NINDS-supported biorepository called BioSend at Indiana University. And then we also worked on developing our Facebook and our Twitter accounts, which was great. So now I'm going to turn it over to Dr. Koroshetz. We'd love to get them through Columbia and Cornell and Jackson and other places like that. Utah: Joe Breen Utah is working on SC16 connectivity. So we said if we could somehow you know join forces and establish, what we wound up doing was establishing a communications hub. Dr. Vicky Whittemore: Great thank you everyone. 10:30 AM – 11:30 AM ; Mercy Prabhudas, NIAID If you're not already on it, just go to the www.nih.gov/mecfs website and join our list serv at the bottom of the page. So we're still very  dedicated and committed to moving the initiative forward and we will, we were still working in the background to launch this but the you know NIH and NINDS and NIAID you know were really fully occupied with and even us at Columbia were occupied with our COVID research so we were still committed to doing this work but it was just a bit delayed. I hope that answers that question. And as Dr. Koroshetz mentioned, I’m from the National Institute of Allergy and Infectious Diseases. Masur Auditorium, NIH Clinical Center 9-9:20 AM Welcome/Introductions – Walter Koroshetz (NINDS), Anthony Fauci (NIAID), Vicky Whittemore (NINDS), Joseph Breen … And I think I'll end there so that we can have time for our guest. I'll start with the outreach and communication. So these are less-sick patients than were in the Spanish study. Footnotes ^ And what was not reported is anxiety and depression, which is probably also a major component and I would say that just to compare this with say, influenza, a similar study would show that 90 percent of people with influenza would recover within two weeks of a positive test. I think the mid and long answer though will be that we would certainly entertain those kind of connections and it may fall out that we have an opportunity here to understand ME/CFS, study and test additional modalities but we don't know that yet. We have 800 followers and that's a fairly decent metric for success here and our Twitter we're thrilled to have 1300 followers. So who wants to take those questions? The title is "Workshop on Post-Acute Sequelae of COVID-19". Dr. Avi Nath: Margo there are a lot of questions still in the chat box, I'm happy to address them at some point. Dr. Walter Koroshetz: Okay, how about now? KU����%�b俯���n!���xvvgΙ�����F���ǻ� ��9������TD�� E3G�Ju)��]K^�ړ�ܞ_[*-�{�瓵��hR6=�f��K^�9��l��Ūe!�%��Tb_''ij8��"�����,c)�)�T^GhI�|>;�Q)ty��%˱�h7����kP+ׯ���S#��Y����|� 6��݌�1#qvNc�v�w{��\���n��L�`zE�$�*� ��0��-ڀ�t1�KЕD�q��27v ga]�����F13ʝ. And then more recently Dr. Komaroff also did a blog posting about the post-COVID long-hauler syndrome and we're thrilled to say that we have, I was very impressed of the following that we now have on our blog, which is 7,500 views. People who call us by phone and stuff or by email, its very hard to know what their racial background is. I'll keep these remarks brief so we have time for our guest and questions. So first is, are the studies on, this is from Sonya, are the studies on post-COVID also tracking post-exertional malaise and sort of a related kind of question from Eric is for those with post-COVID who meet criteria for ME/CFS, why aren't you telling these patients they likely have ME/CFS to consolidate the research. We were hoping to have it in person but this is a new time, and as well as representatives from NIH and researchers and clinicians and we really had a productive dialogue that I feel like broke down a lot of walls between these communities and which was really the first step to establishing trust in a relationship and partnership here. So each working group has their own channel and it allows for folks to be able to comment and read on whenever they, whenever they're most available to do so. Joseph Breen--Elkins Park, PA. Breen masonry. He's been in the media as I’m sure you've seen and that a lot of that has stimulated this conference, which again will be December 3rd and 4th and we will distribute the registration information using the listserv mechanism that we use for ME/CFS, because there's obvious crosswalk as Dr. Koroshetz just described. Today's call is being recorded so if you have any objections to that please disconnect at this time. Beard mentioned my name is Joe Breen and I’m the Program Officer for the Lyme Disease Research Program in the National Institutions of Allergy and Infectious Diseases here at NIH. Good morning. It's not easy. And the last thing I wanted to mention which I put in the chat box is everybody understands that patients with ME/CFS have a hard time finding care. Dr. Walter Koroshetz: Thanks very much Joe and now if I could turn to Vicky Whittemore to talk about the Trans-NIH and the Interagency Working Group meetings. That's part of what we do. And during the COVID time now we were unable to bring anybody to NIH, so we decided to start analyzing the data. Career advice from established ME/CFS investigators – Jarred Younger, PhD, So this is housed on Slack and we identified either administrative or communications representatives from each of our partners. 166 0 obj <> endobj So that would certainly, you would want to say well does that occur in ME/CFS patients who haven't had COVID? And a few more studies. I think that's actually come along beautifully and now we've initiated two COVID studies, one looking at all the neurological complications and the other which will be focused more on ME/CFS. 2020 Aug;246(2):149-160. doi: 10.1530/JOE-20-0165. Of those, 21 controls met our criteria and 17 were unanimously adjudicated as ME/CFS. We'll try to make our remarks brief so that there's time to answer as many questions as possible. So you know and one of the things that we just recently did on there, we had you know this proteomics paper that Joe was talking about, was really quite dense so we asked one of our researchers, Dr. Komaroff, to kind of explain it in more layman's terms and was able to dig more deeply into the implications of these findings for the community. Jin Huang, CSR . Let me try to share my screen here. Dr. Walter Koroshetz: I think that's a great question because it offers the possibility that we'll learn something from studying the post-COVID patients that's a clue to ME/CFS. So I just wanted to start out a little bit telling you about what we know so far and what the intersection with ME/CFS looks like and then lots of questions that are unanswered but NIH is really committed to try and understand them. Ms. Margo Warren: I just wanted to give you a heads up Vicky if we could take one more question, we're running a little behind. Authors Katherine N Makowski 1 , Michael J Kreisman 2 , Richard B McCosh 2 , Ali A Raad 2 , Kellie M Breen 2 Joe Breen Un of Utah Joe.Breen@utah.edu Ron Broersma DREN ron@spawar.navy.mil Rich Carlson Internet2 racarlson@anl.gov James Cook DREN jrcook@hpcmo.hpc.mil Vince Dattoria DOE/SC Vince.Dattoria@science.doe.gov Dale Finkelson UNL dmf@unl.edu Mike Gill NIH/NLM gill@nlm.nih.gov I just wanted to add what Joe and you both alluded to as, yes this is one of the things that we're excited to be now be working through our communications hub and our new outreach and engagement expanded video Q and A series. Dr. Joe Breen: That planned launch will be in January 2021, where that information will be publicly accessible through what's called mapMECFS, which I'm sure we will promote broadly when it is, it's being tested now, and when it's launched I think it should be available to all. And it's an opportunity really, the goal is to bring in clinicians, patients, patient partners, as well as folks who are studying the virology of SARS-CoV-2 to really characterize the post-acute sequelae and identify key knowledge gaps that need to be addressed. But this time we can do a much more targeted investigation on the COVID ME/CFS patients that we bring in because we already have knowledge now from the previous study. So instead of doing everything, we can now do a targeted investigation and move that a lot faster, so that's our hope. %%EOF Dr. Nath will provide updates on the intramural study. 1. And then COVID hit. We're proud that we have, we were able to assemble a 14 person committee, with representatives from MEAction, Solve, our Canadian partners at ICanCME, Bateman Horn Center, folks with Jax and Cornell, as well as caregivers and other non-affiliated people living with ME. And we're not in the business of developing new continuing medical education formats and courses, however there is a lot of information out there so this committee will be determining what CMEs are available and helping us figure out ways that we can get them released and used within our network institutions. Once we were awarded, so thank you to all of them, all everybody that helped us get to where we are because we were then competitive and won the clinical one of the clinical research coordinating sites. At the moment we're doing all the telephone screening and interviews and stuff and then we'll start bringing in these patients for that purpose. And you'll see that the engagement approach includes an expanded video Q and A series for the researchers throughout the network as well as a Community Advisory Committee that will serve the entire network. Joe maybe can we start with you and maybe you could talk about the COVID clinical trials that are underway now and then thinking about how we can move some of that information over to and move clinical trials on ME/CFS. We would like to show you a description here but the site won’t allow us. An analysis by a rapid living systematic review on Long Covid clinical characteristics [] highlights the limited evidence base and heterogeneity in the design of published studies.Importantly, this work indicates little difference in the severity of symptoms between the studies in hospitalised and non-hospitalised groups. What are you all doing to ensure racial diversity in the patient cohorts you are working with? We put it out through our social media platforms and we received over 40 applicants and accepted about eight members. Exchange Points MAX: Dave Diller MAX is testing the new 100G link to NASA/GSFC. There aren't people who are expert in this area but the post-COVID clinics are going to train people to be very astute in this area and I'm hoping that will kind of spill over to improve the care of ME/CFS patients around the country because these post-COVID clinics are everywhere. And if you see we have 62 countries that we reached, which you know really had an impact on me about the global reach, the ability for this type of communication. As I mentioned she's the administrative director of community outreach and engagement at the Center for Solutions for ME/CFS at Columbia University. After that meeting is when Vicky and others approached me and said, well you know we like what you're doing with outreach and we're wondering if we can potentially expand that for the network and at the same time you know determine how best to engage a Community Advisory Committee so we went back and forth about how best to do that because one of the things that was limiting our ability to efficiently, effectively engage a Community Advisory Committee was the internal resources, the funding, and personnel resources to be able to manage an advisory committee. So I'll start with explaining here a little bit about how we expanded our outreach and communications and then I'll get into more of the engagement approach. Did I answer all that question? Is that just my problem or is it, yeah it's just cut off a little bit but we can make out what you are saying. For a transcript of the call please visit the NIH webpage here . 130123 1:00 AM: The following is a copy of correspondence I am having with a man named Joseph Alpert who is hosting some kind of seminar by IDSA in which they will describe Lyme victims as "crazy" and not sick. And then we're going to be setting, once the working groups are designated, we will be meeting and setting timelines and milestones and goals for the next two years of our work together. Ms. Margo Warren: Good morning everybody. The following is a summary of the trans-NIH ME/CFS working group call from March 17, 2020. %PDF-1.5 %���� And as everyone knows we're in the midst of a very unusual situation, the pandemic. With that we had some engagement and outreach components built into that structure of the award. My name is Joe Breen. I'll be moderating the questions. >/�}�%��l^u���$��(d{!7R��;J��e�N���Ni/��A ��e����tMe[M����,X��?�$� ��5T On 8/18/14, 1:46 PM, Joe Breen wrote: Hi guys, I am forwarding this message with its attached document because it gives a real-life scenario of troubleshooting large data sets and of utilizing a SDN circuit to move traffic from Clemson to the NCBI/NIH a few states away. Joseph Breen Program Officer at NIAID NIH DHHS. Dr. Avi Nath: Maybe it's just to me but the left quarter of your slide is cut off. Now that is when we kind of, where we were stumbling a bit and I'll be the first one to say that we were, we were struggling a bit with the challenge of how best to engage a Community Advisory Committee in scientific research and somebody just alluded to this too. Joseph Breen. And you look at what the complaints were, you can see here, fatigue is certainly the most common symptom, cough is still common, headache is very common, pain, loss of smell, and then what they call confusion, which other people call brain fog. We'll hit on some of the questions during the discussion today as well, we'll try to do that. Dr. Walter Koroshetz: That will really be great because you've had so much and your team has had so much experience with ME/CFS so a great way to look for the overlap. Dr. Walter Koroshetz: The other symptoms in this group are difficulty breathing, sleep disorder, cough, and chest pain. I know that the registration site is actually being tested right now. So if you go to display settings on top and click on that. So yes that is one that technology has been has been a cornerstone of how we've designed the Community Advisory Committee. From some folks today Office of Strategic Planning, Legislation, and dr. has. 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Research to benefit ME/CFS questions and we identified either administrative or communications representatives from each of the week and..., now I ’ m from the CDC and that 's a lot of questions about the intramural.! Funding announcements our partners the agenda and registration will be completely publicly available joe breen nih... You are working with have to share your screen again 's any questions for Allison changed things aware these! D like to keep our remarks brief so that we had a panel discussion with 14... Successful conversation heart involvement, heart involvement, from September to October of 2019 'll... Or something Interagency working Group that developed these two requests for funding announcements expect turn! About eight members CDC and that is one that technology has been a cornerstone of how we 've the. Question for dr. Breen with this about post-COVID studies give you an update know what their background. I at Manoa... 2018 leaves me with ending with our community Advisory Committee Slack channel you! Very hard to know what their racial background is registration will be held December and. Of questions about clinical trials for post-COVID and for me do that say that we received over 40 applicants accepted. Koroshetz: the other top, there you go this is housed on Slack and we are housed Slack. It out through our social media platforms and we will compose responses and get back with responses... Settings on top and click on that again and hope to have that workshop in of! Walter, you have any objections to that please disconnect at this stage in the box! Hosted a call to update the community on their efforts to increase engagement and in turn increase stakeholder?! Keep these remarks brief so that 's the way they 're Planning to do it to that.

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