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? We do not know what exactly causes it nor what sustains it. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? 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. Then, when reading upon Jeffs story I asked my very good physical therapist to teach me some exercises to help stabilize my neck and, as I believed I could better stabilize my neck with a more stable pelvis, to help stabilize my pelvis. According to one site, though, these ligaments get reduced blood flows which is another issue in ME/CFS which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS. the original CFS. in belgium. After graduating from Princeton University with an AB in Politics, she was a freelance journalist in China and East and Southern Africa and a TED Fellow. Birdie, I agree; I do not understand the whole process of doctors reporting things. The NPI number of Jennifer Brea is 1770123416 and was assigned on January 2020. On the one hand, how wonderful to have possibly found a cure after 26 years of illness! Learning about Jens recovery yesterday and how she recovered, blew my socks off and I dont think Im alone in that based on all the responses. My insurance is through the Healthcare Marketplace (ACA), and Im very grateful to have it, as I was uninsurable prior to the ACA, being self-employed with pre-existing conditions. Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. He thought probably various viruses were responsible. The Zebra Network and other websites report three central symptoms of craniocervical instability (CCI): Other symptomscan include neck pain, central or mixed sleep apnea, facial pain or numbness, balance and coordination problems and vertigo, dizziness, fainting, vision issues, difficulty swallowing, choking, tinnitus, nausea, vomiting, paralysis, downward nystagmus (irregular eye movements). The fear I think is due to the lack of support weve had over the years and still do. For those of us still with ME/CFS, look to others who are not flashes in the pan. Ive been working on intentionally breaking that suspected cycle at multiple points within it all at once whatever parts I can most easily get my own two hands on and have had far more success with that approach than my previous, more scattered, attempts.). I just want to put out there that as a physiatrist CCI is a diagnosis that were extensively trained in and we dont miss. CHIARI-1 MALFORMATION 8mm, rounded morphology (08/07/2008); 5mm, peg-like morphology (08/26/2014), Mild CROWDING OF THE FORAMEN MAGNUM (08/07/2008), DIMINISHED CSF PULSATION IN THE DORSAL ASPECT OF THE FORAMEN MAGNUM (08/07/2008), Mild degenerative changes are present throughout the cervical spine with posterior disk bulges from C2-C3 to the C6-C7. 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. Im monitoring my ME symptoms and seeing some changes but feel it is too early to draw any conclusions. He found that 30% required a tethered cord release surgery either before or after their craniocervical fusions. Im glad Jen is comparatively well and getting better all the time. The people said it was unlucky. Tip! 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/. She has a tethered cord but that surgery does not cure CFSME either. That sounds like a lot and it is neither craniocervical instability (CCI) and tethered cord syndrome are easy to diagnose and are even more difficult to get treated but her rapid recovery after 8 years of moderate to severe illness is amazing. I have been trying to find someone who does cranial sacral massage but since I live in Hilo, I cant find anyone who does it (at least correctly). * There is a small but enduring cycle of spinal fluid being moved from the bag to the tail and vice versa. Found 20 colleagues at Drexel University. That does not mean similar examples such as Breas are not real, but are the exception. I have the same issue actually AFA will only pay for local providers. The muscles sometimes arent strong enough to hold the head stable. Not even Mestinon, an old and safe drug which Jen, by the way, found that helped her. But if people are having improvements from cervical spinal stenosis surgery, why would we not count them all together? She speculated and conjectured on Medium that she might fit the mold of EDS, but there is disagreement within that community (join and search hypermobility through the backlog discussion on the Cusack protocol group) over what constitutes an EDS diagnosis and what does a hypermobility spectrum disorder. Its easy to see how a borderline structural problem can become problematic when the muscles cant keep good posture. My daughter is still mentally recovering from the CCI and suboccipital craniectomy. I certainly believe she more then deserves it. Rheumatoid arthritis is a main cause of CCI. Also from SCIG and IVIG when autoimmunity involved. My daughter is in less pain but fluids helped in their way (less flu like mostly). Agreed. In 2011, I became suddenly ill after an acute viral infection. Jeff, Mike Dessin, and the heavy metal poisoning patient were more similar to Whitney Dafoe than your run of the mill (but still incredibly limited) ME/CFS patient and yet they fully recovered. Thus if the body becomes overloaded with toxins, it could act as the last straw on the camels back resulting in toxin overload and CFS/ME. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. Since valacyclovir those symptoms are not near as severe. 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!! It requires a keen eye, and the ability to think outside the box. But I see no future for me anymore, getting rapidly worse and am alreaddy 99% bedridden. As you highlight, this type of surgery is very risky it should only be undertaken where the evidence is clear and the surgeon is competent. What has helped somewhat is daily valacyclovir. my head goes clean through the rear window of the truck and im knocked out. For example, I found out that I have: sickle cell trait Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . Jennifer Brea Health activist, filmmaker Contact Jennifer Brea Blog/ Home/ My Story/ Filmmaking/ Unrest Unrest VR Activism/ #MEAction Speaking/ Contact/ SPEAKING INQUIRIES For inquiries about speaking engagements, please visit the speaker page. Thanks Nancy. I am glad for Jen Brea but hope it lasts. The collars do not always improve symptoms, however. Note that physical discomfort in head/neck area is not required! I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. I imagine there may have been quite a blockage there. CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. Dear Cort and am even sobedridden I could not go to see a specialist or getting at a hospital. amzn_assoc_region = "US"; I thought about this during the movie. Thanks. I will put that in the blog . To add to the problem, we dont always know what information is relevant and what is not. The sick raise their heads to be counted again. My spine prefers as nearly completely horizontal as possible. I believe now that the arthritis in my neck is stopping or slowing down the flow of toxins that get drained from the head..i have constant sinus infections etc. It really helps pull together all the threads! If someone else would like to use the forms or scales he used, please let me know and Ill provide them when I am able. I live in NZ and so my geography currently puts me in the position of having almost no help at all and I am forced to manage my illness with lifestyle measures and supplements alone. One liter of saline x5 week dripped slowly at night took away flu like symptoms. I have read many stories on my EDS forum about this problem of a missed diagnosis. The title is triggering and I am sure it is for people like me who were broken by the process and people who did not find relief and people fearing they cannot manage this physically, emotionally and financially. All of this was noted in August of 2008 two months after my initial event on June 8, 2008. If one can tackle a dominant ongoing driver of the disease one may have sufficient self healing left IMO. Speaking of that I emailed Avindra Nath Jeffs story and today your story and asked him if he was looking at this in the NIH Intramural study and I gathered from his answer that he is. I am one of those rare people that the illness was shutting down physically and crippling me due to brain inflammation. amzn_assoc_search_type = "search_widget"; I can only hope that your energy and health remain and your charisma remains with the cause. 25 records for Jennifer Brea. I have not come across a doctor in that time that either understands or knows about CFS so there has not been a diagnosis; usually just shrugged shoulders. She was playing to be seen to do the right thing but in fact didnt. I think the avoidance aspect helped a bit with inflammation which will make symptoms exacerbate (and I can see this with vascular stenosis as well.. nothing like inflammation to make a brain more unhappy and even angry). This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. For many many years i have had this huge spinal lump of bone where the whiplash/arthritis showed up. Carol. Thanks. Later, the warriors son was thrown from one of the ponies and broke his leg. We will trial SCIG soon. The interview includes a particular good discussion of the doctor and the decision to have the surgery. amzn_assoc_default_search_key = ""; Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. Some of us have multiple family members with mast cell disease and can trace our symptoms back to childhood or infancy. I am reminded of the damage that was caused in 2009 when after huge publicity was given to the retrovirus XMRV as the definitive cause of MEFS, many could not admit their mistake even after the retraction in the journal Science. He is located in Brussels, and I have heard of occational home visits. I dont know about elsewhere in the world. And yet, when Brea was 28 years old, a Ph.D student at Harvard with a future as bright as her smile, she was struck suddenly by a fever of nearly 105 degrees. A big difference, in pertinent to this article, is our training in CCI. Brea's health unraveled three years ago. Ive had neck issues for many years, but cant convince doctors to investigate. so I am desperate, said and angry to. Upright scans are harder to find and are not necessary if good MRI machines are available.. Could I use it for my chronic fatigue? I am trying to get the sympathetic dominance under control a bit here. The surgery is exceptionally unlikely to result in anything more than a temporary improvement, and is highly likely to result in long-term aggravation of pain. In the aftermath, she rediscovered her first love, film. Again happy for someone to elaborate if they know. Hi Cort, my head is LOWER than my feet in my bed. If anything I think this highlights the need to validate a biomedical diagnostic test: nano-needle/intracellular phenylalanine/mitochondrial fragmentation test. Thanks. I am also copper zinc imbalanced. Decades after falling ill it was corrected. Thank you for using these stories to educate and to keep hope afloat. I have only been bedridden for months at a time, and it was just horrible each time. The real hero DownUnder was David Tuller. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. Jennifer Brea is an American documentary filmmaker and activist. https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/. (herpes 4 seems to be the current candidate). Oh Brigitte, I am so sorry. Lets not add to the confusion that this high publicity case is going to bring to us. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. The body !must! I also, at the age of 18ish, was involved in not one but two car accidentsone from behind and one from the side. It was only then that even started to look for anything and I still dont think they took me seriously until the antibodies were found in 2017 and I still feel like I am told your symptom severity does not match what we are looking at for this patient population. Jen never had ME/CFS. My new doctor says he thinks I had the Jo-1 and Ro52 all along. What an unbelievable relief that must be. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. Dr. Jennifer A. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. Not a destiny. To his surprise, he met the criteria. This has happened maybe 8-10 times in 7 years. (Plus, few years I took anticeptive pills for a while, and I got worst, so need to share that too! 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