“Cellular Energy and its Impact on Health”
Dr. Klimas’s annual patient conference on Saturday, Feb 7th is approaching fast. Titled “Cellular Energy and its Impact on Health” this half-day conference features some fascinating talks. Two from the Klimas team will sum up eight years of effort focused on attempting to understand and fix what’s happening during exercise. Others will focus on methylation, the recently concluded Synergy trial, and nutrition.
Gordon Broderick: “Modelling Exercise Dynamics to Restore Immune Signaling in ME/CFS.”
Travis Craddock, Ph.D. “Virtual You: Modelling the Role of Homeostatic Drive in the Perpetuation of Chronic Illness.”
Could Broderick be our Einstein? OK – so Einstein is a bit much to lay on anyone. Broderick, like Einstein, though, can quickly leave your head spinning – even his own team doesn’t always understand what he’s saying, and he wants to fundamentally change the way we approach illness. If he has his way, researchers will be dealing with chronic illnesses in a very different manner in the future.
The first two talks are from the two bioengineering/data mining/modelling experts at the Institute of Neuroimmune Studies at Nova Southeastern University, Gordon Broderick and Travis Craddock. They’ll be presenting the culmination of eight years of work analyzing hundreds of thousands of data points gathered before, during and after, the big “E”– exercise. They have data on what’s going on with your genes, hormones, cytokines, immune cells, the neuropeptides while your body is breaking down during exercise. It’s clearly the biggest dataset ever produced on what’s happening during exercise in these disorders.
They used those millions of data points to build explanatory models of disease. We may have gotten a taste of what’s coming year or so ago when Doctor Klimas said, if I remember correctly, that the autonomic nervous system tanks first during exercise – and then drags the immune system down with it.
That would be more than enough, but it’s not all. They’ve also built virtual models to identify which medications might work best and in what order to get ME/CFS patients out of the “homeostatic lockdown” they’re in. (If you remember, the NSU team believes ME/CFS and GWS patients have their systems set at a “new normal” – a suboptimal set point – that resists movement. That “new normal” brings to mind Dr. Cheney’s statement years ago that after he pushes ME/CFS patients towards health something pushes them back. )
If you can figure out what’s keeping the system stuck in “illness mode”, you have a chance at getting it unstuck. The next step for this very creative group is to initiate clinical trials, and it sounds like they may be in the process of doing that.
We’ll see how far they’ve gotten in the two talks – that by themselves are obviously worth the price of admission.
Freedom from Fibro Summit Encore Weekend – Watch Any Presentation
Watch any of the 40-plus presentations from Dr. Murphree’s Freedom from Fibro Summit for free this encore weekend. If exploring alternative health options is something for you – or if you just want to explore what’s out there – Dr. Murphree’s Summits provide a great overview of the possibilities this large field of medicine presents.
The Summit provides simple techniques to reduce pain and anxiety, provides updates on the latest research, diet options (one of which has helped me greatly), ways to boost energy, the latest on fibromyalgia research (my presentation), etc.
Click here to check out the encore weekend and here to see a prior blog on it.
- Models Suggesting Chronic Fatigue Syndrome Is “Amenable to Intervention” Provide Hope: Dr. Broderick Talks
Richard Deth, Ph.D. “Importance of Antioxidant and Methylation Status in Fatiguing Illnesses.”
Richard Deth brings considerable expertise in mitochondrial and brain functioning and energy pathways to ME/FS and similar disorders. A recent Nova Southeastern hire, Deth is primarily interested in the roles oxidative stress and methylation play in neurological disorders.
That’s good expertise to have as high. High levels of oxidative stress have consistently been found in ME/CFS and fibromyalgia, and methylation – a process that affects how our genes express themselves – is looking more and more like a big deal. Patrick McGowan of the Solve ME/CFS Initiative recently got a nice grant to further his work in this area.
Jon Kaiser, M.D. “Mitochondrial Medicine and ME/CFS”
I’m hoping big time that Jon Kaiser’s Synergy trial combining low-dose methylphenidate and mitochondrial and immune enhancing supplements in ME/CFS works out. Kaiser’s present study had its genesis several decades ago when he began working on ways to protect the mitochondria of HIV patients from the damaging effect of HIV drugs. He applied the insights he learned from the HIV patients to his ME/CFS patients and then boosted the formula (adding methylphenidate and other factors) to meet their special needs.
Personally, I’m not asking for the moon; a twenty percent increase in energy from a cheap drug and supplements would be fantastic. Kaiser’s big multicenter study was due to wrap in December of last year. It looks like we’re about to get some preliminary results. I’m crossing my fingers that they’re positive.
- Stimulating Energy: Enhancing the Mitochondria in the Synergy Clinical Trial for Chronic Fatigue Syndrome
Lisa Dorfman, M.S., R.D., CSSD, LMHC, FAND “Practical Nutrition Strategies for Achieving Optimal Health.”
Lisa Dorfman recently published “Performance Nutrition For Tackling Stress”. I like her focus on “practical” (presumably inexpensive) strategies for achieving optimal health. It’ll interesting to see if she will tailor her talk to the needs of ME/CFS and FM patients.
Finally, a panel consisting of Irma Rey M.D., Maria Vera MD., and Connie Sol, exercise physiologist will join the speakers for a panel discussion on strategies to increase cellular energy. They will also be responding to questions from members on-site and watching the webcast.
For more on the conference go here or you can register for it using the links below.
- $50 for attending the pre-conference Meet and Greet and Conference at the Rose and Alfred Miniaci Performing Arts Center
- $20 for attending via live webcast
I like dr. Klimas her statement: ”the autonomic nervous system tanks first during exercise – and then drags the immune system down with it”. I think there is to much focus on the immune system. I don’t think the problem is primarily in the immune system.
I like it too. It stuck in my mind…We’ll see in the conference if it still holds. 🙂
I am becoming more and more convinced that the “post exercise malaise” concept that you introduced me to, is massively important, Cort.
I continue to get better and better after learning to pace myself in my exercise; my capacity for exercise below the threshold of malaise avoidance continues to rise. I just know I cannot make an extra effort without harming myself. No competitive urges can be tolerated.
And pains that had plagued me for years are diminishing and even disappearing in some spots now. (I have fibro, not CFS)
But is this pacing alone, the cure? I am doing a lot: very low carb diet; Qi Gong massage; myofascial release and cupping massage (from another practitioner); taking Guaifenesin and avoiding Salicylates; spa followed by a cool-down swim, almost daily; stretching routines; exercise program is deliberately varied as much as possible; muscle balance and strengthening program under a trainer.
Extremely important too: a total career change to something enjoyable and low stress, that has worked out well after some years of struggle (self employment)
And I have had a definite boost twice now, from discovering that I needed to take MORE magnesium and drink more water; I always thought I was doing enough, but getting calf muscle cramp caused me to take more and immediately felt better overall. I am now taking up to 600mg daily. And the water and electrolyte intake is an ongoing requirement, not to be skipped for even half a day, at least while committed to an exercise program in the current hot weather where I live. I take potassium as well. (My sodium level is not a problem – HMAT always shows me OTT on this, it is magnesium that is always depleted with me).
Getting diagnosed with sleep apnoea and getting a CPAP machine, is also something I could not have done without. All fibro sufferers should be checked for this.
Lastly, I had a single HBOT treatment 6 weeks ago that could have given me a boost. One of the problems with trying everything is that you don’t really know what is helping most and what you could be leaving out!
I have my first appointment with Dr. Maria Vera, who works in Dr. Nancy Klimas’ clinic, in March. I am very anxious about the appointment as I have very limited resources (energy, brain power, not being able to sit up or stand for more than 20 to 30 minutes, and money). Just to make it to this appointment which includes airline travel, hotel, etc. will deplete almost all of the above mentioned resources. I do have medicare which will help. I struggle with the question “Is it worth it, will I get any significant improvement in my health?” I would love to hear from anyone who has recently made this journey to Dr. Klimas’ clinic to help me answer this question and who can advise me on ways to conserve my limited resources. Also it would be helpful just to know what I can expect at this initial appointment. Thanks for any advice.
I am a patient at the clinic. I have been introduced to both my genetic issues, a protocol of supplements and vitamins, and an RX not available in this country. I have learned much about my condition through this clinic. I do believe that I have gained somewhat, but not quite enough, to justify the expense, both physical and financial. I have found the clinic poorly run, having sat for 7 hours waiting for my scheduled appt., and multiple mistakes in my treatments. I am giving the clinic one last shot, hoping that my issues were just their ‘getting off the ground’, as it is a relatively new clinic. I am still scheduled to be seen, and plan to keep this appt. with fingers crossed.
Organizational issues have dogged that clinic more than any other I know of. It’s the only clinic I’ve gotten emails bemoaning their lack of organization and what it’s cost patients. You can’t run a top-notch clinic without having everything in place. They clearly have the practitioners. Hopefully they’ve gotten the organizational stuff under control.
I appreciate you relating your experience, Myoldmill. I do hope that the knowledge you acquired will help you eventually as new treatments become available. Knowing that they have the issues you mentioned will help me prepare for the experience if I decide to go them. It is difficult to say no to even slightest possibility of improvement. I wish you well with your next appointment.
Hi Tom H,
My husband will be returning for his third visit in three years in March. I would say, go at least once and have them profile your immune system activity (I think it’s one test that is only done in Miami). It could be useful information esp if you are still trying to get disability.
The organizational issues have gotten somewhat better than they were three years ago, but are still significant. Here are things we did to try to compensate:
1) Make sure you both mail all of your relevant medical records to the clinic in advance AND travel with a copy of them.
2) Call the clinic at least a week before your appointment and say you are confirming the appointment’s date and time.
3) Confirm that they have your all of your medical records and paperwork (still show up with copies if they say they do have them — it won’t necessarily mean the doctor has looked at them).
4) Ask what paper work you will need to fill out when you get there, and how long you expect it will take. Ask if they can e-mail you forms to fill out ahead of time, to save your energy on the day of the meeting.
5) Emphasize in your phone call the week before that you are traveling at considerable distance to yourself.
If this is your first time, also, to conserve energy, do this ahead of time:
1) Draft a timeline of your medical history, testing, dates, diagnosis, etc ahead of time. This will save you a *lot* of energy in answering questions.
2) Hang up a piece of paper in an easy-to-reach location and every time you think of a question that you would like the doctor to answer, write it down.
* One *GOOD* part of the clinic is that once we were there, no matter how disorganized the clinic was, the clinician really sat there and answered every damn question we had. And then paused and let us think up some more.
3) Formulate some questions ahead of time about the long view, in terms of treatment.
* Ask — what will determine what treatment you try first?
* If that doesn’t work,what will you try next?
* Can you describe some ways that other patients with my set of symptoms gradually improved? What made a difference?
They won’t promise you a quick cure, and they will say every patient is different, but if you are going to commit working with them over the distance, they should at least be able to give you a sense of possible therapies.
Good luck. The ideal situation would be one where you could record your conversation with the clinician, or you could have a friend along simply to take notes while you listened. I spend the hour after every visit or phone call my husband has with Nova writing up notes of the conversation as I understood them. If I have questions about some point, then I call or e-mail the following day to make sure I understood.
It’s exhausting *FOR ME* and I don’t even have CFS. I am sending you every good wish in the world.
Also, in all honesty, my husband hasn’t improved in his three years of treatment. He had been too ill to work for at least five years before his first visit at Nova, and I understand that CFS is less responsive to treatments the longer it continues.
He persist with Nova for two reasons. One is that he’s in the middle of disability appeals, and doesn’t want to look like he’s doctor shopping. The other is that I think they at least persuaded him that there was something *measurably* wrong with his body, and that his illness wasn’t just the product of a failure of willpower.
Also, I continue to support his decision to keep going because CFS is a terrifying illness. It helps my own mental health a bit to know that we can at least *talk* with a true expert on the illness once every three months or so.
methylphenidate = Ritalin and all of the side effects known for Ritalin and other similar drugs….first do no harm.
That’s what clinical trials are all about. We’ll see…
I was there 2 years ago. Not to discourage you, but I’m not much better than I was then. I spent $3000 on the medical aspects of the appointment; however I have only HMO insurance which didn’t cover much. The fees for the appointment itself are reasonable, but the lab tests are expensive. I think I had a pretty standard set of tests- cytokines and viruses, mainly. They had just moved when I went there and things were quite disorganized. Be sure you or someone with you takes good notes and double check your prescriptions before you leave. A very limited lunch was available within about 10 steps of the office. There is a place to stay within about 2 blocks that’s decent- I don’t recall the name. I got wheeled to their dining room when my husband was there, and ordered delivered food from outside vendors when he wasn’t. The trip there didn’t bother me (I flew out from the west coast) although I was sure it would. I hope this helps. I wish you the best in your journey to better health!
Did they tell you that you have ME/CFS? That in itself, I find, is worth the money and the effort. To have all your complaints validated and to be surrounded by medical people who recognized and understand what you are suffering from and don’t think that it is all in your head is awesome. I have found that every time I go to a specialist and get one more abnormal result, however small it is, and however expensive both financially and physically it was to obtain, it is worth so much. I am building a giant puzzle, that is me and my health, and although I don’t have answers and a cure- or even a treatment- at least I have things set in place for when one comes along.
Knowledge is power. Plus, knowledge is never a waste. Get as much information about this illness and about your own particular version of it and you’ll be one step closer to knowing how to get treatment, when treatments come along 🙂
Good point. Things are slowly evolving. I’m particularly interested in the idea that Broderick et al are learning enough to develop new medication regimes. That will be fascinating to find out. I’m also really interested in the outcome of the Synergy trial. Like I said – a 20% boost in energy would be fantastic…I don’t particularly like using drugs but I’m definitely open to low dose trials.
There are definitely no guarantees. All you can do is try and keep up on the information out there and see what works…Good luck you to your journey as well Marilyn 🙂
Thanks Marilyn for letting me know about your experience. I appreciate your advice. Take care.
Should your local area docs, family and friends be skeptical, be sure to obtain from Dr. Klimas and associates a short and powerful note on letterhead documenting your diagnosis, diagnostic codes if possible, and general recommendations re: supplements needs, med needs, and medical equipment needs. Be sure to ask her what specialists you should see for followup to rule out or in other things like Lyme, MS, and co-infections generally. Make sure that if your case is disabling that this is clearly stated. This kind of documentation from such a renowned expert is worth its weight in gold, especially since your investment is so great per your circumstances. Be firm in your request and followup, because this team is so in demand that items like your documentation letter can be easily lost in the huge stacks of office paper and changes of support staff.
One culprit almost all clients I know have missed is mold biotoxin illness. Only you can bring this up as an issue, and it would be profitable for you to do a little investigation of your present and past housing for any clues (a Home Depot sample dish is totally useless). Although you may not be aware of it, if you have mold biotoxin illness in any form — not just an allergy — it may have been bringing your immune system to crash point for years. People can live in water damaged buildings for decades and not be aware that this has destroyed the immune system. The complex, specialized immune panels at UM cannot test for mold biotoxins; Real Time Labs is one CLIA lab that can (again, out of pocket, but worth it).
WOW! Thanks Becca for the good advice. My illness started 13 years ago with a severe exposure to mold in a house I was renting. I did move out shortly afterwards (but made sure the mold was cleaned up so hopefully no other renters after me would get sick) After mentioning this mold exposure to many doctors since not one has made a comment or followed up on anything mold related: no tests, no advice, nothing. Hopefully Dr. Vera will know more on the subject. I also hope she can determine which expensive tests are unnecessary and which ones are a must do as I definitely have limits after 13 years without a paycheck.
Thanks Cort. I am so excited about this conference. Can’t wait for your coverage of it, in a week or so. I wish I could go to it- not only for the great speakers and all the news but the nice Florida weather would be pleasant as well 🙂
Yes, indeed – there’s no place like Florida in the winter 🙂
Dr. Klimas noted that time sensitive gene expression studies have revealed the fascinating and possibly absolutely pivotal finding that during exercise the autonomic nervous system tanks first in ME/CFS and then it takes down the immune system. She also noted that the ANS ‘tank point’ occurs when the body changes over from aerobic to anerobic metabolism, a switch that occurs all too early for many people with ME/CFS.
http://www.cortjohnson.org/ blog/2013/01/23/chronic- fatigue-syndrome-mecfs- deconditioning-exercise-and- recovery-the-klimas-cdc-talk/
As someone who became ill with ME/CFS while doing strenuous aerobic exercise, I have come to the conclusion that, perhaps, some of us were genetically never meant to be aerobic performers. Even, though we once may have had the ability to perform aerobically, we may have pushed ourselves beyond our own inborn mitochondrial limit and are now running-on-empty. I will never again push myself to do regimented exercise. I get my exercise from things like “quiet walks”, that is, when I feel up to it, and only then.
The organization of muscle fibers in each of us is determined by our genes. The endurance of the long-distance runner (aerobic) and the short-burst of energy experienced by the sprinter (anaerobic) are both genetic in nature. Slow-twitch muscle fibers like those of the long-distance runner (aerobic) have abundant mitochondria and use large amounts of energy slowly so that you can work out for a long time without getting tired. Slow fibers use oxygen-using (aerobic) pathways for activities that require endurance.
Fast-twitch muscle fibers found in sprinters (anaerobic) have less mitochondria and use small amounts of energy quickly. Fast fibers use sugars for fuel (anaerobic) and do not require oxygen. It gives you the ability to run fast, but for short distances. The byproduct of this (anaerobic) energy production is heat and lactic acid. Lactic acid accumulation in the muscle causes fatigue and soreness. The (anaerobic energy) system is a limited system for energy production.
So would it be wrong to conclude folk with ME/cfs lack oxygen in their muscles?
I think there’s definitely evidence pointing in that direction. I don’t know if we can conclude that – but it’s definitely a strong candidate.
Re low oxygen in muscles. I think there must be something to that. On my good days…few now,I can often do things as though I am quite fit although I have been lying around for so long. It’s as if I am in a state of high altitude training so that when things shift and I am a bit better I have some sort of innate fitness. I wonder if anyone else has had this experience?
Matt, very interesting point. I find that despite having been disabled + having to limit physical exercise, that like you, I have never become deconditioned. On my infrequent good days, I can function as though I am someone in good physical shape which I always find surprising.
I’ve had exactly that same experience, Matt. I have FM & ME/CFS along with Hashimoto’s (autoimmune) thyroiditis. Although I seem to be lying low in rest or recovery mode more often than I am truly productive, I still feel strong enough (when I have a good day) to do what I need to do. Granted, I am careful to at least get up & move every hour or so while sedentary. But I don’t exercise (other than my weekly special yoga class) or do anything too strenuous. I only shower about once or twice per week. It is odd, but I would be able to do just about anything on a good day, I suppose, if I were willing to pay for it afterward. I most certainly am not! I save my energy for meal preparation, basic home up-keep (I live alone) & my scheduled activities. It’s all about pacing & priorities. The body seems to work fine when I ask it to, as long as I never tax it in between.
I may be able to relate to your “innate fitness” idea. Whether an activity is physical (walking), mental (reading), or both (playing the piano), my performance is always best immediately after being away from the activity, or activity in general, during a period of increased rest. For example, the first slow 20-minute walk is easiest, but if I attempt to do exactly the same walk every day, it becomes progressively harder until I realize I’d be wise to stop for a while. The same thing happens with cognitive effort — not bad after an extended period of resting my brain, but more difficult and with increased errors as I continue over a period of days/weeks, even if I set a timer and stop to rest, or change activities, after 20 minutes. I’ve read a lot about PEM//PENE in the context of the need for two-day exercise testing, but this seems to relate to exercise much more challenging than the duration/intensity I’m talking about. Of course, it would be impractical for researchers to do their diagnostics on people performing one or two light duties daily for a period of weeks to see what measurable aspects of their physiology change over time. But, I suspect this is more the experience of many ME patients, and the reason the illness is so disabling, and frustrating.
I sometimes wonder if the segment of ME patients with POTS are actually maintaining some degree of innate fitness as a result of their elevated heart rate. I rarely wear my heart-rate monitor anymore, because if I obeyed it, I’d be almost bedridden. During the past month, I’ve put it on twice with the following results: slow vacuuming of two small rooms, 135 – 156 bpm; grating two cups of soft cheese, max. 142 bpm.
Reports often describe the differences between ME patients and “sedentary controls”, so perhaps the researchers also recognize the concept of “innate fitness” that you have described.
Is it not the rapidity of our recovery after exertion the determinant of our “fitness”?
Does this shortness of oxygen delivery not point to the earlier red cell deformation work by Dr. Ramsay?
Cort, I’d love to get your consideration of this idea.
Tom, I agree with both Marilyn and Claire on both of their experiences. Four years ago I was referred by my cardiologist to Dr. Irma Rey, who works with Dr. Klimas,. I live about 4 hours away and come about 4 x a year, depending on how well or sick I am. Yes it is so comforting to have someone understand and validate your illness, when in the past you have not had one doctor get it. The lab work is expensive but gives a better look at how to go about treating because we are all different. For example , I have been taking LDN amongst other meds., and have not crashed since June. Hopefully you do have someone to go with you, for another pair of ears or take notes or even an inexpensive tape recorder. I wish you luck and a positive experience.
Thanks Megan. It will be a relief indeed to talk to a doctor who is knowledgeable. I am happy to hear the LDN has been so helpful, it has definitely taken the edge off the fibro pain for me. take care.
Rachel, everything you say makes total sense to me. I thought I had come up with a ‘cure’ to my ‘fatigue’ in December when I adopted a high fat,moderate protein, no carb diet. Over night I felt energetic and well. So much so I started running and going to the gym after a year’s absence. However, after being accepted to a fatigue research program in New Zealand next week at a university studying chronic fatigue I thought I’d push myself and run at full throttle (~ HR 180bpm) for 1/2 hour on Friday night. This was to prove I didn’t have Chronic Fatigue. Saturday I couldn’t run but cycled as hard as I could for 30 mins. I started winding down on Saturday afternoon and this morning (Sunday) I have all the symptoms I thought I’d ‘cured’ myself of. I’m never going to run ever again. I’ve spent all day nauseous,legs buckling,cold in 30C heat and can’t read because my brain is in total confusion. My muscles are twitching too which makes me worried I’ll have another seizure. Used to have them the day after strenuous exercise. I’ve also been yawning and taking deep breathes so my husband has noticed and I only do that when I’m sick. Weird that all this happens so long after the exercise though… I can’t wait for an answer so I can say to people I have ‘XYZ’ and this makes me behave like ‘ABC’
Julia, I also have changed my diet. Changing my diet has helped me have a lot more energy. I no longer think of sugar, or saturated fat as something that should be avoided. I’ve done quite a bit of research on mitochondria, which are tiny structures within cells that provide the energy the cell needs to perform its functions. Mitochondria convert oxygen, and the sugar, fat and protein from foods to useable energy. The body uses that energy for daily function and growth. For me, changing the way I eat has brought great improvements to the way I feel.
Hope you start feeling better from your relapse soon. I’ve done the same thing as you, so many times, that I’ve lost count. I started feeling better and thought I was back to normal and could exercise. However, even though my diet has made me feel much better, I now know that I will never be the way I was before I developed ME/CFS. I will never again, try to push myself, beyond my own personal boundaries, by participating in structured exercise.
Protein + Sugar + Fat + Oxygen = Fuel for your Mitochondria
Sugar is touchy. I have had to swear off it, because it ruins the homeostasis of my digestive tract. I can eat whole fruit, only. Now that is no punishment to eat fresh ripe fruit.
So, simple formulas in M.E. seem so often messed up by individual situations. I am glad what you do works for you.
I did not figure out the sugar problem on my own — my long ago visits to Dr Cheney — he figured out that problem. And just to be a fool, after ten years I tested it out by eating sugary ice cream day after day, and reproduced my initial problems just like that. Dr Cheney was right, exactly on this point of keeping me getting nutrition at all, at all.
Sugar is an energy source. Natural sugars present in fruits, freshly squeezed orange juice, raw honey and good old white cane sugar can help calm the adrenal glands and reduce stress hormones. Mitochondria act like furnaces when they convert sugar, or glucose and fructose, along with protein and fat into adenosine triphosphate (ATP). I would never recommend eating sugary ice cream day after day like you did, but sugar, when eaten properly can actually provide many benefits.
Will I have to listen to the live conference or will it be posted online so that I can listen to it at a later time? Please let me know.
We encourage you to listen to the webcast live although we are trying to make arrangements to post the conference on our site at a later date, although we cannot make any guarantees at this time.
If you have any questions regarding the conference, please contact me directly at email@example.com
I was wondering if anyone else from Canada has tried to register to listen to the webcast? I could enter my address and province but it won’t take my postal code … and this is required information.
I too wanted to know if it will be available after the broadcast.
Please try and register again for the webcast via the Nova website http://www.nova.edu/nim/2015-patient-conference/index.html. If you are still having difficulties, please contact me directly at firstname.lastname@example.org and I can assist you.
I am so excited to see the Multi-disciplinary, Synergy research and Mitochondrial/Energy research that is going on. In my ME/CFS journey, I had a number of predisposing factors (Hypothyroid, Endometriosis, Allergies/Sinus issues, Hypermobile Joint Syndrome – any one of these could have been/ be responsible for my ME/CFS symptoms) and had recurring occasional “Mono-like” crashes through the years in the “Push, Crash, Recover … Repeat” pattern. I’d always recover and be “fine” in between, UNTIL … something flipped that switch, turned on (or off) that Gene, damaged my mitochondria, locked my homeostasis in “new normal” and pushed me into disabling ME/CFS from I have yet to recover 15 years later. That thing? My rheumatologist and PCP documented the onset of fatigue, joint pain and flu-like symptoms after I received Lupron injections. A couple of years later an Endocrinologist diagnosed me with CFIDS.
For me, it happened after a series of infertility treatments (heavy hormonal and emotional stress trying to conceive) followed by Lupron to quiet endometrial bleeding and pain made worse by the fertility drugs. Dr. Chandler Marrs, UNLV, Lucine has noted the relationship between Lupron and Mitochondrial damage (http://www.hormonesmatter.com/lupron-estradiol-mitochondria-adverse-reactions/). Finally, a connection between my “assumed proximal causation” event and mitochondrial damage that may have led to my resulting ME/CFS symptoms!
Regardless of what triggers our symptoms – and which “axis” of symptoms we each experience more intensely – there seems to be a common core of that “illness mode” we all have in the ME/CFS – FMS experience. I am grateful they are looking at our mitochondria function, and homeostasis lockdown, and oxidative stress. I am so glad that these big-data studies are being done, that data are being synthesized and the inter-connections are being explored.
I was forced to retire on medical disability from my career as a Systems Ecologist with the Federal Government, a career I loved and worked hard for. As a interdisciplinary researcher myself, I am excited to see them looking for connections and synthesizing data. Thank you Cort, for keeping us updated and for synthesizing the research so that we can follow as it happens.
Robyn Myers, PhD
I must say as tough as they are we also have the most interesting stories…
I’m pretty darn sure I’d be working in ecology right now if this disorder hadn’t occurred. Who knows we might have worked together…:)
This sound GREAT. But, I won’t be able to watch the webinar.
Is there going to be a synopsis or highlights about it on this site? (I SOOOOO appreciate all the time and effort and energy!)
I have paid for the webinar. I have no instuctions on the time or where to find it. I have called Nova twice and was given a number of the person handling it. I have left two voice messages. Does anyone know this information, the webinar is day after tomorrow. TIA
Did anyone on here watch the webinar or know if it was posted anywhere afterwards? I would really like to know what was said. Thanks.