The Fibromyalgia Summit
Finally a fibromyalgia summit! It’s a big one – the biggest I’ve seen yet. It includes thirty speakers covering everything from gut issues to nutrition to detoxification to sex (there is sex after fibromyalgia – perhaps more than we think) to hypothyroidism, to stress, to emerging treatments (by me – gulp), and for the guys – FM and men .
Some names you might recognize include Drs. Murphree, Teitelbaum and Ginerva Liptan, Toni Bernhard and Sue Ingebretson.
As with all these summits the summit is free with registration. Each talk can be accessed on one day or you can download the whole series along with a massive amount of secondary materials (there’s much more in my secondary materials than in my talk) by purchasing the summit.
The summit starts May 12th and lasts for about a week. You can register for it here.
If you already know you want to purchase the thirty talk summit you can do so for a pre-summit price of $69.
The Big Study
Kudo’s to The Solve ME/CFS Initiative for getting Dr. Avindra Nath to give a webinar on the big NIH Clinical Center study on ME/CFS.
Dr. Nath has been getting around. This will mark, in the short time he’s been involved with ME/CFS, Dr. Nath’s third time communicating with the ME/CFS community. He talked at the CDC Grand Rounds on ME/CFS, he spent an hour from the US Embassy in Liberia with ME/CFS advocates, and now he’s giving a Solve ME/CFS webinar.
He’s a bit unusual in how hard he’s had to work to address the community (a call from Liberia (lol)) but in truth the NIH team has been very communicative and is setting up more opportunities to do so in the future. This is yet another indication that this is not the NIH we’ve come to know; this is an NIH that is turning over a new leaf.
Register for the Nath seminar on April 21st at 1pm EST here
Koroshetz to Talk on ME/CFS at Neurology Conference – Speaking of communicating, Dr. Koroshetz recently reported that one of the things he’ll be talking about at the huge American Academy of Neurology Conference this next week is NINDS and the NIH’s new commitment to chronic fatigue syndrome. He’ll probably get quite a bit of attention – his institute, after all, spends over $1 billion dollars on neurology research every year. He’ll surely be using the conference to tell neurologists to start applying for ME/CFS grants.
NIH Opens Spigot (A Bit) For Past ME/CFS Grants – if you missed it check out what the NIH did to get more money in ME/CFS researchers hands and more ME/CFS cohorts in other researchers hands in NIH Ups Funding For Chronic Fatigue Syndrome Researchers.
Get on the Map!
Have ME/CFS or FM? Be Proud! Put yourself on “The Disease Map” and demonstrate that these “invisible” and poorly supported diseases are everywhere. Thus far 1740 FM patients and 1030 ME/CFS patients have put themselves on the World Disease Map.
That’s more than rheumatoid arthritis (640) and way more than migraine (0!). That the MS and diabetes maps have only a bit more (1760, 1921) people suggests that we could, without too much trouble, have one of the most populated maps of all.
If any diseases need visibility ME/CFS and FM do, so please consider putting yourself on the map – and see who’s living around you, with ME/CFS/FM. Thus far I see three other people with ME/CFS in my area – Las Vegas – and two others with fibromyalgia.
- Put yourself on the chronic fatigue syndrome/ME map here
- Put yourself on the fibromyalgia map here
” Dr. Koroshetz recently reported that one of the things he’ll be talking about at the huge American Academy of Neurology Conference this next week is NINDS and the NIH’s new commitment to chronic fatigue syndrome”
Who did he report this to and in what context?
An ME/CFS patient from British Columbia (where the conference is being held) asked him about spreading the word on ME/CFS to combat misperceptions and he said he was going to talk about NINDS and NIH plans to invigorate research there.
I wonder when he is going to do so – it would seem it would be unofficially because in the program (https://www.aan.com/uploadedFiles/Website_Library_Assets/Documents/7.Conferences/1.CONFERENCES/1.Annual_Meeting/16AMAbstracListing.pdf) I only find him co-presenter on an abstract.
Will the seminar with Dr. Nath be recorded to view later for those who are not available during it?
Nice that you will represent us Cort. I’m sure you will do great! We will all be pulling for you. Breathe!
I’ll be listening.
I also found him here http://tools.aan.com/annualmeeting/search/index.cfm?fuseaction=home.detail&id=4857&keyword=&topic=&type=all , perhaps trying to bring new blood to our task.
C4 – Research Career Development Symposium: How to Be Successful in Academic Neuroscience
Event Time: Friday April 15, 2016 8:00 am to 5:00 pm
Topic(s): Research Methodology, Education, and History
Director(s): Conrad Weihl MD, PhD, Jaishri Blakeley MD
Description: This program will provide information to early stage neurologists who are embarking on an academic career in neurological research with a focus on acquiring a career development award. Didactic lectures and small group sessions will focus on preparing for competitive grant submissions to the NIH, major foundations, and the American Brain Foundation, as well as core principles of publishing impactful reports, academic career development, and productive mentor-mentee relationships. Attendees will receive information critical to their transition from residency, fellowship, and early faculty to investigative independence in academic neurology. In order to facilitate the mentoring sessions, attendees are asked to identify their interest in basic or clinical research and their specific area of interests for research.
Completion Message: Participants should gain essential information about the core components of a successful K award application and other mentored career development grants; developing and maintaining productive mentor-mentee relationships; guidelines for development of a successful research career (finding the right question); strategies for successful scientific writing and suggestions for addressing the competing demands that are common at the start of an academic career.
CME Credits: 8
Program Speakers – Tentative
Start/End Time Title Faculty
10:05 AM – 10:35 AM NINDS Career Development Programs. How and why? Walter Koroshetz MD, FAAN
I tried to put me on the map (have ME/CFS but it does not work or better said my brain does not work. I live in Belgium.
can someone help me and tell me wich steps I must take?
You do need to first sign-in with a login and be sure you record that so in case you need to change or add info. I suggest using name only if you wish this public, but consider first name last initial or similar or pseudonym. Suggest you not put your exact home but in public park or library or similar nearby, to be sure you are never harassed by anyone selling magic ME potion #9.
You can join the map in this link:
Regarding the Big Map. I joined, put in “ME/CFS” as the condition, but don’t see anyone else who listed that. I’d prefer just “ME”, but don’t see a listing for Myalgic Encephalomyelitis. I do so one for CFS/ME, but that puts CFS too prominently for my perspective. Cort, I think you need to guide us about the name of this if we’re all going to try to show something to the world, on the world. Also–I’ll be happy to change my listing if we have a name to gather on.
Look up “Chronic Fatigue…” at Diseasemaps.org and you will find “Chronic Fatigue Syndrome / ME category. Please use this vs accidentally starts new disease name #24 for Myalgic Encephalomyelitis (aka CFS). Recommend using initials unless not an issue to you & recommend placing in public location like school, park, library that is not taken already, so you get unique marker, but do not give away your home address, esp since some w ME can be less able to fend off people trying to sell bogus meds for example
I live in Vancouver, British Columbia. Could I attend in person? Details?
Yes, but it would cost over $1,000! These conferences are expensive!
Please everybody go to Disease Maps and put yourself on the map. We need to stand up where we can, and be counted.
This is great. So happy you are presenting! Now, when people ask your kids what you, they can say what mine always did, “She talks”. ROFLMAO,never got invited to career day but 6 year olds don’t need statistics on how to prevent teens from becoming pregnancy the second time.
Anyways, dumb question time, if I can’t stay devoted to hear all the speakers at allotted time, will they be recorded so we can listen at a later time? I am sure this is covered in descriptive. But since I am a Sanguine personality by nature,I skim and too ADHD to do retain details.
Again, so proud of you! This site has been instrumental, entering my life in a time, I felt lost, boxed in and out of ideas. You present strings of knowledge, that have set me on trial and error tangents that have really improved my life.
Thank you, I am no longer a 10% person slipping fast to zero. That’s not me. I am 70% on good days, even had one 99% day this month on a Girls Day, I haven’t been that good in 5 years. PH levels, my new experiment.
Glad to hear it Deborah and thanks and thanks for your participation on the Forums. (I am looking a pH as well :)).
The talks are recorded. To get them for free you have to watch them on the day they are presented. If you pay for the package ($69 in a pre-summit sale) you can download them and keep them.
Hope that helps…good luck with the pH try!
Thanks for the great work!
This is not a journey I wanted to take but I know I’m not alone.
Was a recording of the phone call ever posted online?
Yes, it was – somewhere..
I found it.
NIH ME/CFS Advocacy Call
March 8, 2016
Is a schedule of the days and times of the talks available yet?
Diseasemaps.org stats show that there are much more females than males with CFS/EM. Is this percentage real?
Yes, its true or ME/CFS and FM – and many autoimmune diseases – and chronic pain conditions in general.
I’m on both maps! I also answered the three things I think have helped me most. I do plan on adding more information to my profile soon, such as telling my story. Finally we’re really “on the map!” Thanks, Cort!