The 2019 AAEM Conference will focus on fatigue and ME/CFS.
A four-day ME/CFS and fatigue conference “Fatigue: A Complex Diagnosis and Treatment Dilemma” is about to begin in Lexington, Kentucky – and – in what was apparently something of a last minute decision – the producers of the conference decided to live stream it.
The sponsor, the American Academy of Environmental Medicine (AAEM), has been representing physicians who specialize in Environmental Medicine for over 40 years. Someone – probably Dr. Irma Rey of Dr. Klimas’s Institute of Neuroimmune Medicine (INIM), who is leading the conference, convinced the AAEM to focus the 4-day conference on fatigue this year. (Dr. Klimas and her staff have been incorporating environmental health practices into their protocols over the past couple of years.)
The conference looks to be another instance of chronic fatigue syndrome (ME/CFS), in particular, and the topic of fatigue, in general, gaining more prominence.
The presenters are mostly MD’s and include presentations on a variety of topics including:
Presentations
Dr. Kelly McCann’s talk on “Considering joint hypermobility syndromes and mast cell activation as causes of chronic fatigue” will focus on how to diagnose and treat EDS and MCAS in the context of chronic fatigue.
Dr. Dikomo Shungu PhD, an ME/CFS researcher, will speak on the role oxidative stress in the brain plays in ME/CFS and using NAC (glutathione) to battle it.
Dr. Klimas will use her systems biology approach to speak on how the autonomic nervous and immune systems interact in ME/CFS (and GWI) and on treatment strategies targeting inflammatory cytokines and the autonomic nervous system.
Dr. Irma Rey of INIM will talk on the use of ultra low-dose naltrexone to avoid side effects and how to titrate LDN up to levels that can help with pain, inflammation, etc. She will also discuss dextro-LDN, a different form of LDN which may be more effective.
Diana Driscoll, the Clinical Director for POTS Care, will talk of various way to enhance autonomic nervous system functioning including vagus nerve stimulation, pyridostigmine bromide (Mestinon), her formulation Parasym Plus® and how to determine if patients are dealing with vagus nerve dysfunction or acetylcholine disorders.
Annie Hopper of the Dynamic Neural Retraining System (DNRS) will speak on reversing fatigue, limbic kindling and central sensitization using neuroplasticity.
Kim Sullivan PhD – will be using her experience with Gulf War Illness to talk about how toxins can impact brain-immune pathways and treatment interventions for chronic multi-symptom disorders affecting fatigue, pain and cognitive functioning.
Other talks will focus on mold and fatigue, low cortisol and fatigue, environmental pollutants, neuronendocrineimmune dysfunction and fatigue, etc.
Registration/Dates
The AAEM conference in Lexington, Kentucky runs from Oct. 10th -13th. $50 gives you access to one day of the livestream version of the conference until Nov 25th. (All four days would cost $200.) Register for the livestream here.
Health Rising is not an affiliate and does not derive any proceeds from this conference.
$200 for access to the Live Stream of this event – might as well be $10,000 or a million. We’d like to be able to watch if we are sufficiently functional on parts of or all four days and have places (homes) or internet access that allow us to see it.
It’s great that the AAEM conference producers were convinced to open it to LiveStreaming – but their comprehension of the patient community affected is clearly limited. If it’s about us, results should include us.
We were, no doubt, participants in some or all of the studies and research. There shouldn’t be pay-walls between us and any new information they’ve found. We are desperate for any and all findings and too many of us are barely surviving. Any new information (good and bad) gives us hope – and that’s all that keeps us going.
I so agree with you. If you happen to be financially blessed and have the disease of ME, I truly envy you. This steaming would be very exciting and interesting to see. Who can afford 200 when most of is are on disability and can barely pay our bills and have enough money to eat.
I agree! Most of this info has been covered here, at least in part, before from what I remember. Hopefully Cort will keep us appraised of anything new.
I agree 100%. Our primary care physicians can’t give us this kind of info so we really need to be able to have access to the latest information so we can at least ask our doctors to look into it. We all desperately need that information but it often seems like better health is only afforded to those who have a talent for making money or who was lucky enough to be born into it. This disease has cost me everything.
I think they’re making a mistake and hopefully they will realize that they probably could have done better by charging much less.
I agree Cort. Or they could just charge the streaming to conference costs along with the luncheons and coffee and donuts and bottled water, and provide access to patients at no cost. How much can the expense be?
The pricing is offensive, like offering a beautifully wrapped gift and then asking for a steep payment for it. Very disappointing
Cort, where you able to watch the conference and if so will you be writing about it?
I’m extremely interested in what Nancy Klimas had to say.
Yes, I will 🙂
Yes, indeed. Out of the price range of most of us I dare say, and many of us are on disability, or even poorer not being able to be approved for it. (By the way, that’s a photograph of Louisville, not Lexington: I spent years living in the latter city).
Yup! I thought it was free like most live streaming. Oh well, I guess they don’t want the people who really need it to get this information?
And that emphases once again how much value for the dollar Cort offers to us patients. Not only can so much information be accessed for all of us on a pay-as-you-can basis, Cort also does a great job at looking for new relevant information, simplify it and write it down in a well structured manner so that as much as possible patients can benefit from it. On top of it he adds commenting options and an extensive forum free to read and to post.
All of this he and Stavya do with a very limited budget. He pays himself little and lives in a van. I’ve seen pictures of it and would call it compact rather then luxurious. I personally would not be happy to live and work in such small space. Cudos to Cort for all he does. He’s worth every penny of our donations!
Agreed, dejurgen, and it’s not Cort that sets those prices. I appreciate all he does.
Dejurgen,
You hit the nail on the head! Cort has been a godsend. I’m definitely going to start contributing to Health Rising starting December 2019. Health Rising has changed my life for the better. The data that Cort provides to patients could easily be packaged to make so much revenue that it would make one’s head spin. However, Cort provides it for free, unlike this cohort which is charging $200. Cort is one of the good ones!!! A real hero in my eyes and worthy of fundraising needed to keep his blog “rising.” One thing I learned early in my life is to always consider the source and the motivation behind the source. Cort’s motivation is helping. This group’s motivation is $. I’m just being candor and frank. TTYL!
Thanks De Jurgen and thanks Christopher. I’m so glad – thanks to the communities support – that I’m able to follow my passion and dig into these diseases which have made such a difference in my life.
I agree. I am a patient of Dr. Rey who works with Dr. Klimas. I’m sure my medical bills have supported the research they will present. Paying once is enough. It’s an insult to bill us to live stream the event.
Thank you Cort. I’m hoping you’ll be able to see most of this and do your always excellent job of distilling out the essentials for those of us who can’t do it for ourselves.
I wish we could send you more monthly financial support than we do. You are greatly appreciated.
Thanks! I will be watching at least the day with the Shungu/Klimas/Hopper/Driscoll presentations.
Cort thank you, looking forward to your assessment.
Hopefully the AAEM will post the presentations on their website so they will be accessible for us to view at a later date.
I would like to watch the 4 days, hoping on some miraccle and hope. but I am so severrelly ill, that I even can not watch the stanfort congres in pieces. 5 minutes are often to hard and I forget immediately.
have a feeling they do not get it, who if having the money, could watch 4 days? how many off us? and how many not? I am not going to describe for 1 day because I simply can not.
Hi Konijn,
I have been wondering about how you were getting on?
I just hope the presentations are posted somewhere, or even better send to my e-mail. This way they will be accessible for us (patients) to read/view at dates where the brain fog isn’t so intense, so we can understand.
This is interesting! I read the comments about the $200.00. Don’t we wish our doctor’s would watch, and find some help in our treatments!
What if four good people each pay the $50.00 and pick one of the days and write a report for the rest.
Collaboration.
Eileen
Agree re the price being too costly. Excited to read the conference topics and hoping can view (at no cost) later.
Nice to see the AAEM taking on this topic. ISEAI also just announced that videos of their presentations from the inaugural May 2019 Conference are now available for sale for ISEAI members only at $50 each. I would love to own them, despite having attended most of the conference, and especially Dr. Robert Naviaux’s talk! Environment is a crucial piece of epigenetics, which may contain the answer to Naviaux’s challenge to attendees, which was (paraphrasing here) let’s stop looking for pathogen;s and start looking for what is blocking the innate healing process. i hope more of our specialists and researchers will start to incorporate environmental medicine in their practices. We might see more recovery stories when they do.
Cheryl,
I think it would be a huge mistake to stop looking for pathogens. My entire history of CFS and FMS is rooted in the suspected etiology of an initial infection (reactivation) of a ?. That being said, I agree with you that research emphasis should also be focused on things like oxidative stress, metabolic function, and the Krebs cycle. What I have come to learn in the last 28 years is that no two cases of ME, CFS, or FMS are alike. They are all called syndromes for a reason. My specialist I am seeing reiterated that there are probably 500 different variables to take into consideration when dealing with the care, research, and treatment for these chronic illnesses. That being said, my specialist is going after the suspected etiology in my case, a ?, and also additional ?s that are a result of successive infections acquired via a dysfunctional immune system and altered neurotransmitters due to the length of time during which I have experienced my chronic illnesses.
Thanks for the info on ISEA. I tried to get a discount to their conference and failed to get much of one – I’m glad they’re offering good deal to their members. I will check that out.
That’s another conference opportunity that’s showing up!
Thanks, Cort! I echo everyone to as well as money and our conditions but I am so happy u will be able to get to watch and summary it for us! As much as our GP’s make off of us we should tell them to watch..just my thoughts and wishful thinking..??
Oh, and speaking about GP’s..info. Sharing is caring..I just viewed this hoping it will go viral…https://youtu.be/qTrLqkFX9A4
Dr. Bateman speaking..??
Health Rising is mention????
It’s great – watched a bit and then it was getting too late and had to go to sleep but will definitely watch it later, thanks for the link Lots.
Thanks for the link Lora! autocorrect!
I hope you all realize how expensive it is to put on a conference. If you attend in person it’s $750 and that is break even – it includes the cost of bringing in the speakers the food and site costs . Streaming by itself is expensive, and it’s not always possible to find a donor to cover these costs.
This is a rare opportunity to bring these speakers together and ask these very talented environmental medicine docs to consider becoming specialty clinics for so many ME/CFS patients who have not found a place to call home base
I am so happy that Dr Rey and the board put this conference together, exposing ME CFS docs to environmental medicine approaches and vice versa!
Our NSU conferences can often be free when we find a donor to help defray the costs or convince the university to help us out. We hope to do something early next so if you miss this one keep an eye out for something in a February or March.
Thanks Dr. Klimas for giving us the inside scoop on funding. It comes to mind that perhaps we’ve been a bit spoiled by the free OMF livestream conferences from Stanford!
Thanks for mentioning the possibility of getting more access for patients to doctors – this conference is certainly loaded with doctors and thanks, in particular, to Dr. Rey for being so pro-active on behalf of ME/CFS and getting an entire conference focused on ME/CFS and fatigue. That’s the kind of out of the box thinking and acting that moves us forward.
Looking forward to an NSU conference next year 🙂
I feel it’s so encouraging that a conference like this, is raising the profile of a very complex disorder that affects so many of us, in so many different ways.
I for one, live in Ireland and have recently joined the Irish ME Trust, who are well informed. However I don’t get the impression that the medical profession on the whole ‘do’ ME/CFS at all, apart from the PACE directives. Maybe I’m wrong…
So, I haven’t ‘found a home base’, as Dr Klimas says in her comment above. I have changed doctor’s a few times over the years. However, as I said to my doctor as I left his office last month, I know that you have to stay within current protocols. He is a GP and sees all manner of people – it’s a very stressful profession to be in. Here in Ireland the whole system is creaking, being underfunded etc etc
So, if the PACE findings are still in current use, then how is he to know to prescribe something else?
So, I do what I can myself. It’s only relatively recently that I’ve stumbled across ME/CFS, largely due to random trawls around the internet. The person who made the biggest impression on me was Dr Nancy Klimas and for that I’m truly grateful.
So, I know I don’t have enough money to watch the live stream but I can note down the speakers and hopefully catch up with them sometime soon in a different place.
What I need is the more up-to-date information being more widely available within the medical profession and then it will spread across the water to us in Ireland.
There are very smart people here, they just need more understanding and better treatments available.
Thanks to Dr Rey, Dr Klimas and everyone else involved.
I agree about having to pay for the conference, it is very unfortunate as so many will miss it.
A couple of comments…
NAC, n-acetyl-cysteine, is NOT glutathione. It is a precursor of glutathione, along with glulycibe and glutamine. You can have all the NAC in the world but if you’re short of these other aminos, NAC won’t be effective.
And looking up Parasym Plus for vagal nerve support, looks like it’s about 1/10 of the B1 I take, plus a choline variant, acetyl-l-carnitine, and Huperzine A. I can’t take Mestinon due to allergens and it being unavailable for compounding these days, and have found Huperzine A to be equally effective (I was on the compound until it wasn’t available.) ALCAR and phosphatidyl choline are effective parts of the treatment plan my doctors have prescribed.
Hopefully more nuggets from this conference will emerge.
My disability check does not go far at all. Is there any way the live streaming could be lowered in price. Another alternative could be that the conference presentation is re-shown at a later date at a cheaper cost. Thanks
Everyone speaks so highly of Cort. I do not know who he is and I was wondering if he has talks/conferences on your website that I can connect to? If so, how is it done?
I cannot afford the $200.00 as I am low income so would love an alternative source for information.
Thanks.
Hi Jody,
This is Cort Johnson’s website. He writes most of the pieces here.
I’m fairly new here myself. It can be a bit overwhelming at first but I find this website invaluable for information and a sense of community as I otherwise feel like an exile in ‘normal’ life!
Hi Jody,
Welcome! I am fairly new as well and it was little overwhelming at first but Cort is very good at writing in layman’s terms so we can understand and stays updated and current with the happenings! If you sign up for email newsletters that is the easy way to not miss a thing!
Ridiculous price! Look forward to the write up