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Big Summit, Big Study and the Big Map!

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By Cort Johnson • • April 29, 2016

Big Summit, Big Study and the Big Map!
Reprinted with the kind permission of Cort Johnson and Health Rising.

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 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, 1,740 FM patients and 1,030 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 (1,760, 1,921) 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

About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.

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