Finding one or more such core problems necessitating pro-active hibernation and solving it could in such cases yield near full recovery with very few permanent damage left. It wasnt my answer. Jens doctor told her he didnt know how the surgery would go for her because hed never had a patient like her. 9 Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! Not knowing the problem at hand might be even more complex then anticipated doesnt magically makes the problem easier to solve. I, Jennifer Breas Amazing ME/CFS Recovering Story: the Spinal Series Pt. She was traveling all around the world giving talks & lectures, going out for meals, consecutive days, & always looked vibrant & well, with an incredible upright strong posture, obviously no brain fog or PEM etc etc was puzzling to me? It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. He is located in Brussels, and I have heard of occational home visits. This is yet another area where Jen Brea and ME action have made such a difference: theyve provided a locus for people to rally around. I know how you feel its hard not to feel that way after awhile but check this out Dana we didnt know anything about CCI/AAI a year and now Jen Brea is recovering. But I see no future for me anymore, getting rapidly worse and am alreaddy 99% bedridden. Thanks Nancy. I will not give up. I have videos, and written testimonials, and Glen Miller aged in his Sixties can be interviewed in, Melbourne, Victoria, Australia. This model may also apply to Long COVID. After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. To think that something like an environmental toxin can (amongst other things) invoke an immune responsethat can (amongst other things) affect the strength of connective tissuethat causes (amongst other things) hyper-mobility in key spinal jointscompression of the brainstemand POTSwhich, in itself, leads to so many other far-reaching symptomsand internal compensatory mechanisms (which cause symptoms of their own, and have many other systemic implications). Each time I diaphragm breath or do a bigger movement with my pelvis, the curvature of my back changes. Check it out here: https://www.mechanicalbasis.org/interviews.html. She describes how her online community helped her find the right diagnosis. Best regards movement problems in ME/CFS. She ditched her wheelchair seven weeks ago. long story version coming soon. Could I use it for my chronic fatigue? So weve got a small spinal fluid pump / mixer which may be a good thing. Thanks again for this coverage of an important topic. I have been following Jennifer Brea since her appearance and outstanding presentation given at the TED. https://www.facebook.com/MegsEDS.MedicalJourney/posts/it-is-with-great-sadness-to-share-this-this-hits-way-too-close-to-home-this-is-n/2302315926661395/. I existed within my own bed, within my own mind, playing with ideas in a race against time. Jeff will interview Mattie again in a couple of months. Relative to others I have mild ME/CFS but theres nothing mild to me in something that precludes me from doing just about any exercise at all. I am improving on electrolytes, high-salt diet, ldn, lauricidin, and several other treatments, but its been a long, exhausting, expensive, and excruciating journey which will probably continue for the rest of my life. Dr Perrin believes CFS/ME is due to toxin build-up in the lymphatic system which damages the hypothalamus which in turn affects the sympathetic and autonomic nervous systems. And I do appreciate any new information about anyone recovering or improving a lot and how they got to this point. For me, toxin buildup in the central nervous system certainly makes sense. Director: Unrest. That procedure sounds about as spine-tinglingly scary as anything I can imagine. Jennifer Brea Wiki, Biography, Age as Wikipedia. Im in awe of what both of you have achieved. He doesnt even have ME/CFS and was genuine, heart-felt and went out of his way to help our community raise much needed publicity as well as give so much of his time. (Dr. Chedda reported that she routinely does this.). Its one of those you dont want to miss this diagnosis that is drilled into our specialty training. To know a real recovery story from cfs and ALL illnesses without any medication and surgery, check out Julia On Health, Ive just finished watching Unrest which is how I came to this site. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. So at the end of all this, despite having extremely high IgG and a very low NK count, I need to eliminate the possibility of CCI/AAI. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. try and activate the guts defenses to the optimal extend in order to even have a change for the body to wait out the danger. Jen Brea. I had to relearn doing thins as simple as how to stand up from a chair, opening a door and walk through it without bumping into it and how to do corners like walking around the corner of a table. They say IIH manifesting as Chronic Fatigue Syndrome, rather than going all the way and saying that this might be one of the underlying factors in ME/CFS. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. With EDS, having cranial instability (in addition to instability in many other places in the body) is quite understandable due to the compromised connective tissue. The sensitivities to sound, light, vibration and touch are gone. But Im leery of these fixes. It seems to bring balance back to the sympathetic and parasympathetic nervous systems. Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. While she was pursuing her PhD at Harvard, she fell ill and was . So my personality, hopes and ability to enjoy life has decreased dramatically. Hi Ruth Jeff anyone who have consulted with Dr Bolonesse help confused! With that in mind, Ill continue the protocol to find out of CCI is likely to be my way out of illness. The difference is important. Im sure Ron and Janet have thought a lot about this. She is good on telling how things are connected to each others and hinting to what I should feel when doing something. Management advice for both hEDS and HSD is the same., I agree, misdiagnosis big time. She had conjectured, I believe, that she had a hypermobility spectrum disorder as a result of her CCI. People get defensive because we hear these stories and there is never a cure all, plus these things involve a lot of energy and risk emotionally on so many levels including continued exposure to the medical community. We BOTH had neck symptoms only after dental surgery (for him) and thyroidectomy (for me). Surgery is considered the last option a good thing, as Jeff lists only four neurosurgeons (3 in the U.S. and one in Europe) proficient in this kind of surgery. I absolutely feel she should not feel any guilt. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. It isnt the best technique to do so as its fairly aggressive to the back but I often felt a clear surge, fresh flow of rich oxygenated blood to the head. The common thread between the two is choline, the precursor to the neurotransmitter, acetylcholine, which appears to be low and/or impaired in people with ME CFS. I also wonder how many men with ME had suffered a traumatic injury to the back or neck at some point prior to becoming ill? She can bend her hand flat on her arm. In short: spinal stenosis can potentially (help) disrupt blood and oxygen flow to the brain, cause inflammation of the main spinal nerves leading to a rigid posture and tense muscles wasting energy and more IMO. Oh Brigitte, I am so sorry. / CFS with her award winning film, "Unrest!" https://www.InvisibleDisabilities.org Jennifer Brea. And, again, this would also fit in with the prevalence of ME in the EDS population. Dr. Bolognese told one potential patient on Phoenix Rising to Try cervical traction with your local physical therapist. Good luck Vlynx with the protocol and I hope you will continue to share how it goes. Hi matthias, At one point as I remember she reported that she could do a lot of mental activity but hardly any physical activity. Browse 72 jennifer brea stock photos and images available, or start a new search to explore more stock photos and images. I never fit cfs criteria as my sever fatigue only lasted a few monthsbut i am always fatigued..just not in bed full time like some. I highly encourage folks to find physiatrist in their area if they have them. Also EDS tissue can have a tendency to stretch and droop out of position. The people said the warrior was unlucky. Way to go Jennifer! For the vast majority of their time ill neither Jeff or Jen experienced the kind of head or neck symptoms one would have thought would have accompanied CCI/AAI. But, because of his broken leg, the warriors son was left behind, and so was spared.. I have the same issue actually AFA will only pay for local providers. Basically its do-it-yourself re-validation therapy like someone with brain injury would receive. Thatll kill you within days. I believe Ive had CCI for over 25 years which doctors have refused to image properly. kryptopyroluria Amy, not knowing truly more about your situation, you did not have the correct type of imaging. It was not tolerable and she was in a real bad way before she passed. (X-rays are not sufficient to test for this condition, however.). That is great to hear! Ask me anything! Her symptoms caused by the brain stem compression & tethered spinal cord were just very similar to the symptoms of ME/CFS, she has surgery to correct the spinal & vertebrae/brain stem deformity & all the symptoms have gone!! Decades after falling ill it was corrected. Brigitte: how is your financial situation? Brain scans provide the final determination. The scales are certainly off in ME/CFS. I get taken by ambulance to hospital and the doc says take some tylenol..you will be finethe cop that came into the room with me says to the lady doclady..his head went through the window..he needs an xray..yes the cop says this! Many of us have the syndrome. 'Unrest' Director Jennifer Brea Reveals How Making a Documentary About Her Illness Helped Treat It Brea explained her process at a recent IDA screening. It is time we become just as militant with those inside our community who refuse to accept the validity of recovery. The money issue raises its head no surprise there really. I think that is important and I want folks to understand that I perceived my symptoms as systemic (which obviously they weremy brainstem was compromised!) It was really hard to read. Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. She also helped to found MEAction and has fought for recognition for CFS. @Kim I take one pill in the morning and one in the early evening. But it would mean that every single Jennifer, Jeff and the many others help shed light on a single aspect of this complex disease and help pull all of us bit by bit out of this swamp. The teachers go through a rigorous 3 year training (post BA). Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Its easy to see how a borderline structural problem can become problematic when the muscles cant keep good posture. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. Don't miss another one. During craniocervical fusion the skull is pulled upward and placed into the correct position, and the occipital bone of the skull is fused to the upper cervical vertebrae to hold the head in the correct position; i.e. I have read many stories on my EDS forum about this problem of a missed diagnosis. Brea co-skabte ogs en virtual reality-film, der havde premiere p Tribeca Film Festival. That said, this news has spurred me in a new direction in the chase for the cause of my ME/CFS. I think the reason that I have problems emotionally with recovery stories is the same as the reason I cant watch inspirational stories on the news. Im glad Jen is comparatively well and getting better all the time. Lets not add to the confusion that this high publicity case is going to bring to us. The neck issues or lack of them, at least at times, in this spinal issue are so interesting. Sorry, Issie, not Issue. Thanks for sharing this Cort. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. I have only been bedridden for months at a time, and it was just horrible each time. Re Jen and Jeffs CCI surgery, if in theory their CCI was caused by inflammation triggered by an enterovirus that caused Classic ME in others, why would treating the CCI heal all symptoms, surely some illness would still be remaining? A neurosurgeon saw my MRI in Unrest and emailed me to say."yeah, that 'normal' MRI isn't normal." The path that led me to a diagnosis of craniocervical instability began with the observation that I had intracranial hypertension, a condition some clinicians believe is associated with ME/CFS. Best of luck! Thats despite that I am a mild/moderate patient who can walk 2 miles on a good day as long as I incorporate enough breaks. 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