She recently did an hour of water aerobics. Its a slow process but it was and still is to some extend an essential step in increasing my capabilities again after each crash. Plus, other less invasive treatment options are available (see below). Like the blog you're reading? (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. Jeff and Jen Brea are leading examples. Get the most in-depth information available on the latest ME/CFS and FM treatment and research findings by registering for Health Rising's free ME/CFS and Fibromyalgia blog here. I directed the Sundance documentary UNREST and co-founded #MEAction. 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. Do we know of any MEEPS beyond Dr. Rowes three who have recovered or had major improvements in their ME after spinal stenosis surgery with or without fusion? Im so happy for Jen and excited to see where she lands. She doesnt appear to have ME/CFS anymore, though, and in six months, she may be completely healthy. Oct. 27, 2020, 8:22 p.m. On Thursday, Oct. 15, Stanford's Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and. Hi Cort, my head is LOWER than my feet in my bed. Mattie, a web developer in the Netherlands, had a gradual onset of ME/CFS in 2010 and slowly declined over time. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. 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. from being able to remember and repeat physical movements after one or two demonstrations and having no trouble recalling them days or weeks later, to flat out forgetting them entirely within a few minutes. It did worsen my instability, which is how I got diagnosed and treated. I absolutely feel she should not feel any guilt. Jen I just really hope it works, and not only longterm, but for the rest of your life. It was really hard to read. Just like a kid has to take plenty of time to learn basic movements, so had I. I speed up the process by systematically decompose the complex movements in its very basic components and I separately trained these slowly. amzn_assoc_ad_type = "responsive_search_widget"; The only thing that stands out in my mind are a series of incidents where I was looking down at my phone, texting with someone, when I almost lost consciousness. 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. Jennifer Brea is a filmmaker and activist. Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. Yet she is 8 of 9 on Beighton and so am I. I guess what concerns me about this is the pursuit of these diagnoses if you get one (I didnt and my daughter has 2.. we have yet to pursue stenosis in veins in brain because we completely crashed from all this). The hypothalamus is unable to function properly which results in toxins back-flowing into the brain and spinal chord (both of which dont have a proper lymphatic drainage system) instead of being eliminated efficiently and quickly by the liver. I am not an anatomist, so have no sense of the details, but it seems likely that women are built somewhat structurally different than men. But if people are having improvements from cervical spinal stenosis surgery, why would we not count them all together? I wouldnt read too much into it till a study shows that CFS patients suffer from CCI more often than by chance and that CCI surgery relieves CFS by more than a chance. amzn_assoc_width = 265; The ceremony is to be led by Henry Louis Gates Jr . When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. and am even sobedridden I could not go to see a specialist or getting at a hospital. I had a neck MRI (not with flexing) and a barium swallow with neck x-rays. Who knows what will happen if the nanoneedle provides a diagnostic test? It is from this experience that drove me on to, in very short, to become a Ayurvedic Naturopath and then medical doctor and work with people with the incurable . Its just that I hoped for something making this disease easier to understand and treat rather then even more diverse and complex to comprehend. I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. Traction is very dangerous in CCI. I saw specialists, met all their clinical criteria, and went through extensive testing to help confirm the diagnosis. Such waves travel to the entire jelly brain structure. It triggers me (pardon another pun) just like the mold topic does. The symptoms matched. We have had to deal with mountains of misinformation over the past 30 years, with a long line of false hopes, quack treatments and cures. Happiness that someone who has been so ill may no longer be suffering. Find a doctor Back Find a Doctor. Sinus surgery proved the cure for Diane. Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. interestingly, i was diagnosed as severe back in 93 but i had slow onset starting at the age of 20, then i complete blow up of my immune system in 93 and had to stop lifei have all the gut problems..all the brain fogall the other symptoms to go along with cfs. Later on its harder to find them as they hide away in tissues eg brain. I broke my C5 vertebrae and impacted my C4 and C6, so much so that there was no light between C4, C5, C6 on the X-Ray. The encouraging news from Jeff and Jen (and now, hints of such from @mattie and @StarChild56) make the prospect of this being the solution all the more real. Plotter of revolution @MEActNet. We will trial SCIG soon. As Dr. Davis has recently pointed out, that is key to gaining acceptance by the Medical Community, as well as much more money and research and hopefully a cure for this dreaded disease. In just three days of evaluating me, based on the new imaging . Finally, I was diagnosed with myalgic encephalomyelitis (ME), (commonly called chronic fatigue syndrome, a condition that is the same or similar to what many people with long COVID face). Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. 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). Wait times to get the surgery done can obviously be long. 1) ME causes all cells in the body to work differently compared to before and that includes brain cells. 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. Im sure Ron and Janet have thought a lot about this. This is one of the problems with ME/CFS is that it is a truly a diagnosis of exclusion. Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? She is good on telling how things are connected to each others and hinting to what I should feel when doing something. Brain scans provide the final determination. 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. Brea's health unraveled three years ago. At the beginning of May, a 26-minute trailer for the movie . I always chalked it up to POTS and Im an expert at dealing with weird shit going on in my body anyway. 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). Pt I The Brainstem Series. I just want to put out there that as a physiatrist CCI is a diagnosis that were extensively trained in and we dont miss. 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!) She now helps lead a neurosurgery practice. A communication breakdown from the brainstem nuclei to other nuclei in the brain suggested brainstem problems could even be contributing to the motor cortex, i.e. I also wonder if the long term bed rest could contribute to ligament laxity (?). 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. Its so unrealistic for the rest of us to think that well get any help in our lifetimes. : Jennifer Brea, from her Medium.com blogs Thyroid Surgery And Aftermath In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. I could hold my head up again. 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. so I am desperate, said and angry to. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. I havent read the comments above, it occurs to me that Jen would have failed the nano-needle (Ron Davis)/intracellular phenylalanine (Karl Morten)/mitochondrial fragmentation (Bupresh Prusty) tests. In fact, the tryptase from the mast cells will likely continue to degrade the collagen, to my understanding, so such a surgery would only be a temporary band-aid for *some* symptoms, not all. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. So sorry to hear that Deb. A huge waste of money. I can only hope that your energy and health remain and your charisma remains with the cause. Retrieved June 3, 2019. Mattie, a web developer in the Netherlands, had a gradual onset, of ME/CFS in 2010 and slowly declined over time. Hi matthias, Jul 14, 2022 | By Jennifer Brea, Waterstones Winner | hashtagpress.co.uk *This book may take a few days to arrive as it's being delivered to the office*Release date: June 2020Young Adult Non-fiction MemoirPaperback ISBN: 978-1 . Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. The Recovery/Recovering Stories section of Health Rising often triggers differing emotions some people love them, others hate them. It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. When doctors tell her "it's all in her head," she turns her camera on herself as she looks for answers and fights for a cure. Whatever kind of CCI/AAI she had, it was different from what hed seen before. I was diagnosed with CFS about a year ago, after several years of struggle. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. Its been used to treat whiplash for years and has been used in EDS but is not well studied. Jennifer Brea's Medium site - , Jennifer Brea, the creator of Unrest and the cofounder of ME Action, details her craniocervical instability (plus) story - plus provides reviews of spinal study findings that could apply to ME/CFS. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. 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? I had the opportunity to work at a fairly renowned clinic for a brief period that works with people with ME/CFS. 1946 - Benjamn Brea, Spanish-Venezuelan saxophonist, clarinet player, and conductor . She also helped to found MEAction and has fought for recognition for CFS. In wich country is it and what is physiatrist? I have the same issue actually AFA will only pay for local providers. In 2014 I went to Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in every category. But I see no future for me anymore, getting rapidly worse and am alreaddy 99% bedridden. amzn_assoc_height = 250; Once the toxins are cleared, the hypothalamus functions normally again and the CFS/ME disappears. They were different from the typical CCI/AAI patients. The fact that 20 people on the Phoenix Rising Forums have been diagnosed with craniocervical instability/atlantoaxial instability (CCI/AAI) over the past 8 months or so is remarkable, and suggests that the condition may not be as uncommon as one might think. Note that physical discomfort in head/neck area is not required! 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. Looking forward to hearing the results of his study and of the herbal study. Thank god i couldnt get out of bed. Doctors are still in the mode of one-cause-one-disease. Three months post-surgery hes nowhere near healthy but he is no longer mostly bedridden, his POTS, dysautonomia, headaches and neck pain have disappeared and he has more energy. 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