Trying to move, work, think, speak while your body is in hibernation causes plenty of damage, metabolic waste, inflammation. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. Jen never had ME/CFS. Dr. Jennifer Brey, MD. Everything felt to me to be systemic. The money issue raises its head no surprise there really. I also, at the age of 18ish, was involved in not one but two car accidentsone from behind and one from the side. Our disease is very diverse. It makes me unbalanced as there is so much to relearn and few usable time and energy. Regenex is another procedure mentioned. Check out the difference between the3T and 1.5T machines). It also may demonstrate how each individual change in the body can affect the entire body, just like an individual change in an ecosystem changes the entire ecosystem. Dear Cort This model may also apply to Long COVID. Two things happen mechanically when pulling onto that tail even a little bit. (08/07/2008). It wasnt my answer. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. Dejuergen, if in theory Jen and Jeffs CCI was caused by inflammation triggered by an virus why would treating the CCI heal all symptoms, surely some illness would still be remaining? That kinda bites. HIP on the Phoenix Rising Forums suggested an intriguing pathogen connection. They have a specific focus on the neck. These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. I, Jennifer Breas Amazing ME/CFS Recovering Story: the Spinal Series Pt. Her POTS disappeared in March. Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Exactly Issue. That said, this news has spurred me in a new direction in the chase for the cause of my ME/CFS. This is most likely from tryptase which acts like a meat tenderizer. Neither are required. I could hold my head up again. Are a subset of us members of a lost tribe? 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). One day the stallion ran off. movement problems in ME/CFS. I was misdiagnosed with conversion disorder (a modern name for hysteria) and became bedridden. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. It might be best to look for a reputable pain clinic in the area, call them up and ask them about it. Heavy headaches (feeling like the head is too heavy for the neck) and a bobble-head feeling. 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. When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. On Phoenix Rising, Jeff reported that the dynamic imaging should also check for Chiari Malformation (which can cause similar issues), craniocervical instability, and tethered cord syndrome (which Health Rising will cover later). The addition of EDS in Jens case restricted to the ligaments involved and MCAS adds more layers that folds her into a huge assemblage of ME/CFS/FM/POTS/EDS/MCAS patients. To his surprise, he met the criteria. Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. Thanks Cort, for reporting on this and other stories of recovery. And she had suffered from PEM which most of us CFS patients consider a hallmark symptom. Thanks to one neurosurgeon who watched my TED Talk and film, an amazing internist, and an intrepid patient, I found my way to a second surgeon and a diagnosis of craniocervical instability and tethered cord syndrome. Sounds like a case of misdiagnosis to me! People too often tout X as the recovery method when the recovery may well have been just a coincidence; you never know unless you do controlled trial. I was called crazy by doctors ..neighboursfriends.my parentsit didnt sit with me too well. Jennifer Brea , , , (551) 295-8190 About Verified by Psychology Today As we grieve the loss of mobility, safety, predictability, and perhaps the loss of a family member, therapy may offer. She has been diagnosed with hEDS. Kaiser Permanente Inglewood Medical Offices is a medical group practice located in Inglewood, CA that specializes in Family Medicine and Internal Medicine. Theres so much education that is needed on so many different fronts. Thank you so much for this article, and care you have taken. It was really hard to read. After some reflection, I dont think its as bad as that. Jennifer Brea. Decades after falling ill it was corrected. Many of us have the syndrome. I immediately recognized her CFS the first time I saw her by the way she sits. 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. Articles by Jennifer Brea A Girl Behind Dark Glasses (Special Edition) by Jessica Taylor-Bearman | hashtagpress. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. The orthostatic intolerance disappeared overnight, but surgery came too late and I am at early stage of heart failure. I have a mild chiari that is not obstructing flow but what happens when I have inflammation? Hope Jeff & Jen & other cases do get documented. Its easy to see how a borderline structural problem can become problematic when the muscles cant keep good posture. 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. One day, she spiked a 104-degree fever and, after 10 days of dizziness, sweats, chills, and soreness, she "stopped being able to speak or think," she says. amzn_assoc_marketplace = "amazon"; food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. Ten Ways to Prove ME/CFS is a Serious Illness, Fibromyalgia Central: Basic Introductions to FM, 10 Ways to Prove FM is a Real and Serious Disease, Small Fiber Neuropathy (SFN) Resource Center, The Long COVID Clinical Trials: Big Drugs, Big Studiesand More, The Coronavirus Vaccine Side Effects Poll, Read her story here:Health update #3: My ME is in remission. There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. Found 20 colleagues at Drexel University. I know this is how ME started but its been decades and were no further on the atypical poliomyelitis front. Instead my doctor sent me to PT and it helped.for awhile. Wait times to get the surgery done can obviously be long. She's even a certified medical acupuncturist! We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. It means we get to debate whether she really was an ME patient, whether she purely and only was an ME patient, or whether she was ME + HSD. (My words this is technically called asymptomatic localised or generalised hypermoblity) At the other end of our spectrum is hEDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD) (my words these are symptomatic HSD), HSD are likely to be common. Prolotherapy? Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. I have mild CFS, I work full time, but its tough. His partner, Dr. Chedda, now regularly checks for CCI/AAI. Upright scans are harder to find and are not necessary if good MRI machines are available.. Not sure where to go from here. Sinus surgery proved the cure for Diane. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. Find a doctor Back Find a Doctor. Recovery stories bring up a mix emotions for me, as well. The people said the warrior was unlucky. Already those who were caught up in the publicity of this high profile case are starting to twist their explanations of what happened. This illness is so confusing. I had severe post-viral myalgic encephalomyelitis (ME). @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. Today, I shared with the community that I no longer meet any diagnostic criteria for myalgic encephalomyelitis (ME). 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). low testosterone (possible sign of infection?) Im so happy for Jen and excited to see where she lands. Im very happy for those who benefit from surgery but a new diagnosis may just add another name to my long long list. Its just that I hoped for something making this disease easier to understand and treat rather then even more diverse and complex to comprehend. Jeff will interview Mattie again in a couple of months. I would put anyone whos in a wheelchair as having a severe illness however. Would you share the Hyperzine product thats working for you? Congratulations again and good luck on your continued recovery:) Your story is really helping move this aspect of ME/CFS forward. In the aftermath, she rediscovered her first love, film. Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through. Wesley Fryer via Flickr. I was told by a Woman last night to look into a condition called Systemic Nickel Allergy Syndrome I was very surprised she said this to me, a Doctor a few years back told me I was Allergic to Nickle he never said anything to me about foods, vitamins, minerals, medicines that contain NickleI was reacting very badly to belt buckles, wrist & neck chains, watches I would break out in severe itchy hives & itch until I would bleed. It !must! 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. Its not hard to see how someone elses recovery story could trigger some issues. Omar Wasow, Jennifer Brea and Anna Deavere Smith attend the HBO "Notes from the Field" Sundance Dinner at The St. Regis Deer Valley on January 20,. I wonder if a move is in store? (Plus, few years I took anticeptive pills for a while, and I got worst, so need to share that too! I would dearly love to get my hands on Mestinon and my mind boggles at the testing regimes and treatments that some patients are offered in the US (as they rightly deserve). What has helped somewhat is daily valacyclovir. Hey Cort! For more info call me at 650-868-0603, Hi! Indeed, Jen Breas recovery is wonderful news. In my experience, the moment CFS was put on my case in 2008 I was not taken seriously until a high resolution CT scan showed mild interstitial lung disease in 2014 following the 2-Day CPET. It was major for me discovering I need to fight inflammatory issues, as I have always been thin and didnt understand it is not related with weight. 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