Jeff will interview Mattie again in a couple of months. The larger bugbear for me, however, is the issue of money. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. I am so happy for Jen Brea and I hope that she extracts every ounce of joy out of her newfound health and second chance at life. Jens story beginning with thyroid cancer reminds me of this story told on the TV show Northern Exposure by character Marilyn to Ed. Jennifer Brea, Counselor, Lyndhurst, NJ, 07071, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. wrong country. movement problems in ME/CFS. Parasym Plus is a supplement that I take. The EDS / ME/CFS connection is getting ever more interesting. I recall a time when if i could have gotten out of bed i would have went to the basement and got the gun. 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. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? To add to the problem, we dont always know what information is relevant and what is not. Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? This is another interesting bit of research that . The people said it was very lucky. I was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). 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. 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. Although things arent easy for me, I consider myself quite lucky (so to speak) in CFS terms, knowing how many sufferers are sadly much worse than me. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. Mattie, a web developer in the Netherlands, had a gradual onset of ME/CFS in 2010 and slowly declined over time. If anything their recovery may reinvigorate the medical field by showing how profound the impact of things like physics, gravity, interaction between organs and signalling throughout the body can be. ), Your email address will not be published. We are lucky shes still alive. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. Dr. Nigel Speight, is one . 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. But Im leery of these fixes. I learned about 2 months ago that Dr. Bolognese read my cervical MRI (standard supine is all he needs, unlike some others) as possible CCI, and have since begun the physical therapy routine that he uses as part of diagnosing whether the MRI findings are clinically significant. Required fields are marked *. Recently, after reading an article on the HM website titled, Thiamine, Epigenetics, and the Tale of the Travelling Enzymes, I added Thiamine (a bariatric formulation) to my vitamin and supplement regimen. Jane Colby of UK ME childrens charity, Tymes Trust tweeted just the other day the UK MRC some years ago dismissed her proposal to build on Dr Betty Dowsetts work (Bryon Hydes too) and that the infecting viruses in ME could be identified, given the will There was no will and they didnt want to know. 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. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. via a stunting of the anti-inflammatory response. Maybe they thought cfs was related to these outbreaks: https://www.betterhealthguy.com/episode98, I have found the article below very important and relevant to the topic. There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. My name is Jennifer Brea. I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. For some people it follows a virus, for others it comes on after a car crash or stressful life circumstances; for others its due to mercury poisoning etc. Jen I just really hope it works, and not only longterm, but for the rest of your life. Were complex beings and even a remarkable story like hers can bring up a mix of emotions. I dont know about elsewhere in the world. Going by Jens movie, this make sense for her. Alexander Technique is big in the UK and the US, and probably Canada. She was recruited to the faculty of the Department of Neurosurgery, Institute of Neurological Sciences, in Glasgow, where she remains to this day, and now has British and Canadian citizenship. 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. After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. 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. Im luckily rather immune to that. 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. Previously, she was a freelance journalist in China and East and Southern Africa. The next week, the chief led a war party against another tribe. It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. 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. Havent figured out the solution to that one yet, though Alexander Technique helps somewhat. Such waves travel to the entire jelly brain structure. After reading Jeffs account Mattie thought he didnt have CCI/AAI but got it checked out anyway and found, to his surprise, that he did. When given the chance, the body can come back from an amazingly debilitated state. Happiness that someone who has been so ill may no longer be suffering. However, and I state again, she was not an HEDS patient. Each of these could trigger a different (and less invasive) treatment approach. I remembered Jennifer Brea recovered from CFS/ME after spinal surgery, so maybe the surgery helped toxins to drain away from Jennifers spine, thus leading to recovery from CFS/ME? The scales are certainly off in ME/CFS. Tip! Jan 17, 2019. Im glad Jen is comparatively well and getting better all the time. Thanks for the comment. long story version coming soon. One day the stallion ran off. Or an enteroviral attack which sparked an immune response which attacked those ligaments? Hendes debutindslag, Unrest, havde premiere p Sundance Film Festival 2017 og modtog US Documentary Special Jury Award for Editing. Different neurosurgeons will employ different scans. The fact that only four neurosurgeons in the world can be trusted to do this procedure doesnt help. He said he didnt have time. Do NOT take any other acetylcholinesterase inhibitor, in any form, while taking this supplement since HupA is a VERY potent drug. The body/being truly does want to heal, and its only a matter of knowing how to support that I can speak from very personal experience, having been erroneously diagnosed with another chronic incurable condition interstitial cystitis. Neurosurgeon 1 episode, 2016 Juan Javier Cardenas . Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. 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. I appreciated your your emphasis on the importance of staying curious, given the wide variety of ways out of illness that some people are finding. This type of surgery is absolutely not an appropriate treatment for illnesses such as ME. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. (herpes 4 seems to be the current candidate). Sometimes, hope shows up where you least expect it and we are reminded that all things are possible. Jennifer Brea is an American documentary filmmaker and activist. so I am desperate, said and angry to. I wouldnt be surprised if Jennifers operation helped drain toxins from the spine. We do not know what exactly causes it nor what sustains it. There it can help moving blood in the capillaries (as CBF pressure should mechanically speaking help determine amount of blood flow in the brain) and even better help removing debris in the capillaries as oscillating movements often are better at getting stuck debris unstuck. I have found a lot of things of relevance and some of questionable relevance. https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/. hEDS and hypermobility were often interchangeable until the recent criteria establishment. For more info call me at 650-868-0603, Hi! It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. * I should note I am not sure Ramsey himself described ME as an atypical poliomyelitis (believe Dowsett did and Hyde definitely did), perhaps someone if reading this can confirm, but he did call it was an illness triggered by a virus. I agree- its very important! This renews my confidence in the invisible train that Ive been tracing in my own apparent cascade: Infectionsystemic inflammation and autoimmunity (and likely MCAD)(joint laxity appears to fit in here somewhere/somehow for me too)POTS/Dysautonomiafull body shut down and collapsesympathetic overdrivegastroparesischronic SIBO/dysbiosisleaky gutincreased inflammation and autoimmunity(and around and around again). As a result, I learned that even small regular movements of the pelvis, like every single time I do a cycle of diaphragm breathing, is sufficient to give a single tiny boost of rich oxygenated blood lasting one to two seconds to the brains. This has happened maybe 8-10 times in 7 years. What is it that makes people not want to believe recovery is possible? At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. All of this was noted in August of 2008 two months after my initial event on June 8, 2008. The symptoms matched. 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