Structural issues arent the only way to potentially tweak the brainstem in ME/CFS; inflammation, infection or autoimmunity would probably do quite nicely, and some evidence suggests at least one of these may be happening in ME/CFS. It was a much more difficult and riskier surgery than should have been had it taken place 30 years earlier, and recovery was much tougher and longer. Im about to have my first consultation with one of his associates this week. I take it at night Help me fall asleep and most of the time sleep through the night . We will trial SCIG soon. Like the PACE Trial; garbage in, garbage out. Since valacyclovir those symptoms are not near as severe. I was diagnosed with CFS about a year ago, after several years of struggle. why would treating the CCI heal all symptoms, surely some illness would still be remaining?. It also did a number on my lower back. I was misdiagnosed with conversion disorder (a modern name for hysteria) and became bedridden. I really dont know what to sayIt must be hard, indeed, to read some of these blogs. Many of the symptoms I experience seem to point to something the body is trying to resolve. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. Didnt she had thyroid cancer and removed her thyroid? Sounds like I am like you Cort. 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. In 2014 I went to Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in every category. It wasnt my answer. She didnt have ME and i found her film attention seeking. The saying goes, Where theres a will theres a way, right? It might be best to look for a reputable pain clinic in the area, call them up and ask them about it. So it goes for many people whove recovered. Using the old trained skill wont help you much and just confuses you. The first surgery was done by the doc in NY and they tried to repair it in UK afterwards, according to one of her relatives email to me. Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. My body aches and couldnt turn my head without severe symptoms. It was all about money and about her and her film production career, Agreed. (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. 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. That helps removing waste out of the brain. Narrower spinal column? Also EDS tissue can have a tendency to stretch and droop out of position. June 1st will mark one year since my full recovery. https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284, https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome, https://www.mechanicalbasis.org/interviews.html, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/, via the dysregulation of immune signals traveling from the vagus nerve to the brain, via activation of the many mast cells found in it, via problems with its regulation of the autonomic nervous system. E.g. After some reflection, I dont think its as bad as that. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. Hendes debutindslag, Unrest, havde premiere p Sundance Film Festival 2017 og modtog US Documentary Special Jury Award for Editing. And, again, this would also fit in with the prevalence of ME in the EDS population. That being said it is my hope that you can put your forces behind the search for a biological marker. Unless, of course, it works! Now that I am walking down this pathway myself, Im experiencing some very contrary feelings, as you discuss. It was a long road, but I am cured. @Kim Thank you so much for this article, and care you have taken. nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! 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. Jen Brea. youve forgotten them or they are lost to you. Not a cure, but much improvement in brain fog and fatigue & recovery times from over exertion. Heavy headaches (feeling like the head is too heavy for the neck) and a bobble-head feeling. Different neurosurgeons will employ different scans. Hi Ruth 25 records for Jennifer Brea. Not sure where to go from here. 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. Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. Tip! -scrub typhus (since treated) A Fibromyalgia and Chronic Fatigue Syndrome Inquiry. 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. I take one pill in the morning and one in the early evening. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. #MEAction has always looked to the HIV/AIDS movement for inspiration, and we have learned so much. Amy, re raising your head or raising your feet for sleeping: I found raising my head (through one of those anti-reflux cushions) killed my neck! At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. The larger bugbear for me, however, is the issue of money. Were complex beings and even a remarkable story like hers can bring up a mix of emotions. 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. Orthopedic Surgery Female Age 44. Ventralbrainstem compression is not always seen in traditionalsupine MR imaging but its usually very evident on dynamic upright imaging which has the patient flex and extend their neck. I will put that in the blog . 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. For more info call me at 650-868-0603, Hi! As ME patients have very often more tense muscles and a more rigid posture, they should see a lesser effect of this spinal tail puling. This is such an obstacle that it almost makes me wish Id never heard of CCI! Jeff just interviewed someone who recently had the surgery. amzn_assoc_height = 250; Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. All these things (for some people at least) help the body eliminate toxins. off of the brainstem. While there are certainly cases of gradual recoveries using supplements, pacing, and mind/body practices, many of the recovery stories involve unusual, out-of-the-box treatments. But when one practices diaphragm breathing it happens over 10000 times a day. Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. I hope thats so! I had 4 episodes of viral thyroiditis before I had it removed. Its possible that an enteroviral infection could be causing the ligament laxity issues in CCI. I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. Ive seen many spinal fusions in my work (though not of this type) and I know recovery from these operations is no walk in the park. I imagine there may have been quite a blockage there. I believe Ive had CCI for over 25 years which doctors have refused to image properly. I am still amazed each morning when I wake up symptom free, and I marvel at how much and what I am capable of doing with only normal healthy responses. She had put off having this surgery until after the promotion from "Unrest" was over. Theyre probably a lot easier to get a hold of than a neurosurgeon. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. I always chalked it up to POTS and Im an expert at dealing with weird shit going on in my body anyway. Or an enteroviral attack which sparked an immune response which attacked those ligaments? The money issue raises its head no surprise there really. Reduced brainstem grey matter volume suggests that the neurons in the brainstem may have been damaged. 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). Hope the ideas may help you in your recovery. Studying the brainstem requires special techniques not usually used in brain imaging. The SYNDROME of HATS (or MCAS) is (1) MCAD (2) EDS type 3 (3) POTS or OI. amzn_assoc_default_search_key = ""; Wait times to get the surgery done can obviously be long. There are still the vagal sympathetic synptoms and the neck pain. It !must! Every bad turn this disease gave me went hand in hand with randomly losing certain factual memories and certain abilities, both mental and motoric. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. One quick clarification: I didnt have overt neck symptoms until after my thyroid surgery. Im so happy for Jen and excited to see where she lands. Ann, you are so right. They (hers & others) can distract us from the underlying cause of this devastating illness so many of us have. Jennifer next went to Scotland to pursue fellowship training in general neurosurgery, complex spinal surgery and paediatric neurosurgery (1998-2000). CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. Previously, she was a freelance journalist in China and East and Southern Africa. If he didnt write it up, how many others didnt either? His tour was at least factually backed and supported by many state and national advocates with whom he worked plus ME/CFS Australia Ltd who provided him with a thorough briefing on the situation here and key influencers.. 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. It requires a keen eye, and the ability to think outside the box. So, for patients, who have CFS symptoms only, need to consult neurologists, neurosurgeons to find out if it's right to take spinal surgery in order to cure CFS. I think CCI is just one way mechanical issues may manifest, but it gives us a clue to the importance of head, neck and spine mechanical issues in ME in general. So if this mechanical pumping action were important enough for brain blood flow and waste removal then having ME rigid neck and back muscles (and other stuff like connective tissue problems) should pose a challenge to the health of our brains. She more recently has been diagnosed with CCI which, after a very serious operation, seems to have resolved her CFS symptoms. So, its a matter of reducing the amount of nickel. This was a misdiagnosis plain and simple. 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. Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . But mostly they make me want to keep on keeping onkeep organizing my efforts as best I canand, to have faith in what I feel internally and observe about myself, even if those things cannot easily be seen, diagnosed, described, or defined. That wouldnt offer a single golden ticket to recovery for us all by having a single medical discovery. I do have all the other problems like chemical sensativitieson and on and on with all the other stuff. I had a neck MRI (not with flexing) and a barium swallow with neck x-rays. Jeff will interview Mattie again in a couple of months. What has helped somewhat is daily valacyclovir. Would it be possible for you to follow De Meirleirs regime for some symptom relief while you wait for the world to catch up? I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. My new doctor says he thinks I had the Jo-1 and Ro52 all along. And I am talking about my daughter who improved from CCI surgery but it did not cure her. So sorry to hear that Deb. I do think that if something like Ron Daviss nanoneedle is validated or some other discovery that wakes up the medical is it will spread to Belgium and New Zealand and just about everywhere. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? Go figure. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many symptoms. I existed within my own bed, within my own mind, playing with ideas in a race against time. Certainly her CCI/AAI diagnosis is now the correct one but its interesting that neither her nor Jeff fit a typical CCI/AAI diagnosis either. Carol. Fast forward to aprox. All things that are treatable, should be treated. After 10 years of search for advice I eventually managed to get a scan, and it showed I had a very severe case with heart and liver compression. Having your senses reporting different information about speed and position makes it worse. I dont know about elsewhere in the world. Its been used to treat whiplash for years and has been used in EDS but is not well studied. 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. Brain cells in hibernation dont process information at the same speed and strength. If she had craniocervical instability (or any other variation of Ehlers-Danlos Syndrome) and that explained most all of her symptoms it was not MECFS and never was. I can only hope that your energy and health remain and your charisma remains with the cause. Note that physical discomfort in head/neck area is not required! Just six months ago, following a thyroid surgery which exacerbated her then undiagnosed case of CCI, Jen Brea was arguably at her lowest point ever. multi- and mold-susceptible genes You dont have to have the energy for breakthroughs to happen. I will never forget the experiences that I have gone through over the last eight years of illness. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. 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. Hi Cort- I cant keep up with all the reading around this issue so I might have missed this, but will their case reports be published? For those of us still with ME/CFS, look to others who are not flashes in the pan. Jeff will interview Mattie again in a couple of months. Upright scans are harder to find and are not necessary if good MRI machines are available.. If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck and most likely not MECFS. I would love to know how your consultation went. A huge waste of money. After ten weeks of treating his gut microbiome, he has improved out of sight, and it is now a whole year and two months that he has not had any relapses. I have read many stories on my EDS forum about this problem of a missed diagnosis. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. Im fighting when I have the energy but I dont feel I will triumph. Agreed. is there one in belgium you know? I had the opportunity to work at a fairly renowned clinic for a brief period that works with people with ME/CFS. Are a subset of us members of a lost tribe? The winner for one recent onset but severely ill patient was desmopressin something that doesnt work that well for most. Yet it did. 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. I love that she went VERY QUIET when she realised it was not in fact ME/CFS but the CCI thing. 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 . So my personality, hopes and ability to enjoy life has decreased dramatically. Jen reported that turning her head to the side did cause strange symptoms and that she had been averse to running when healthy. NZ is third world by comparison and I am so tired, not just from the illness, but from the complete absence of any support, medical or otherwise. It was not tolerable and she was in a real bad way before she passed. Good luck and keep the hope up . I am slowly getting improving, but it has been several years now and I am nowhere near 100% It is very discouraging at times as I used to be a highly active person, Encouraging story, but shes not totally recovered. The problem is not someone becoming well but the shadow that recovery casts on our current situation. It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). But it is just too hard to imagine that given what we already know of CFS and its known risk factors. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. Truly is a diagnosis of exclusion. All of these seem to be simple movements but are in fact very complex composite movements that are very difficult to learn a robot to do it. Symptoms of autonomic nervous system functioning problems such as tachycardia (rapid heartbeat, heat intolerance, problems standing (orthostatic intolerance), gut motility problems, thirst and chronic fatigue. Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. If anyone is curious, there's a new short documentary series following people with "chronic illness".I thought it would feature people with real Press J to jump to the feed. There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. Two methods can provide an indication that CCI/AAI might be present. A good physiatrist is amazing, but Ive found, a little hard to find in the US. Dear Cort 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. I remember her horrific case now. More diagnosis/knowledge of this condition may lead to better non surgical treatments. I highly encourage folks to find physiatrist in their area if they have them. Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. But if it would make it more flexible (or allow better spinal tail deformation) then this spinal tail puling should result in a bigger effect in the above three parameters. Her debut feature, Unrest, premiered at the 2017 Sundance Film Festival and received the US Documentary Special Jury Award For Editing. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. Unlike Mestinon, it only needs to be taken once or twice a day. Its the first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces. * 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. This surgery is extreme and I hesitate to see it as a cure for most of us. 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. 9 No mast cells are not the master cells of the immune system I think you mean the inate immune system. I wish you all the best in your continued recovery! Prolotherapy involves injecting an irritating glucose/dextrose or other solution at painful ligament attachment sites to produce a mild inflammatory response which, hopefully, initiates a healing cascade which then increases the strength and elasticity of connective tissues. But the short shot effect felt to be beyond just having more oxygen in the blood as the effect lasted a few seconds only each time. Wife of @owasow. I only started the Perrin exercises about 6 months ago so that cant be why the hump is lessened. With moderate brain fog, in a way it seems a cruel joke that I am the one who has to research and make sense of these things. Maybe, maybe not. Brain scans provide the final determination. 2) Why is there such a prevalence of women in the ME patient population? I was recently diagnosed with Pyroluria. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. Ill kick in a donation now to say thank you! With ME we can safely say that the range, strength and control of our skeletal muscles is below par. The other thing that happens is that the tension in the brain part of the bag rises a bit. Thanks for sharing this Cort. Whatever kind of CCI/AAI she had, it was different from what hed seen before. Im sure Ron and Janet have thought a lot about this. There are not so many upright MRIs machines and so many doctors who are not so appraised on diagnosing these conditions, will do a regular supine MRI. Its not hard to see how someone elses recovery story could trigger some issues. @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. The fear I think is due to the lack of support weve had over the years and still do. Pt I The Brainstem Series. This lump is, over the years, slowly going down and awaycould it be that the body is either pulling bone away or could the body be the body adjusting the spine itself. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. Not only is the CCI/AAI surgery they had unusual but they were unusual CCI/AAI patients as well. Please note: You may need to reduce your dosage or cycle off it periodically if it becomes less effective. 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. Jeff and Jens stories do bring a new focus to the spine and brainstem. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. It wasnt that long ago that CCI/AAI surgery wasnt even considered for Ehlers Danlos Syndrome it was the province solely of whiplash and trauma patients. It was a bad diagnosis and all it does is distract from the work at hand to funnel money into the diagnostic test and other symptom minimisation research. First of all, Im super happy about Jennifer Breas recovery and for new directions for research to go in that this brings about. 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. If he did test positive I wonder if a) he could get to a neurosurgeon and b) if he could survive the surgery! I had 3-level spinal stenosis surgery with fusion and decompression 5 weeks ago and am wondering if this might give me an ME improvement/recovery? I am in the same place as debs. I dont know if you saw my post above about having an incurable condition called interstitial cystitis. At larger doses this may be an issue for sure. amzn_assoc_placement = ""; 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. Hes not a problem anymore. Just talk to others of us. Trying to move, work, think, speak while your body is in hibernation causes plenty of damage, metabolic waste, inflammation. What I have found most interesting is that I also have spinal conditions too, spinal stenosis, osteo- arthritis, diagnosed in my mid-30s . I think its a shame that folks with ME/CFS have been convinced that there is no cure or theres no hope. I know she was using a wchair but that was because it kept her HR down from the POTS, not because her legs were so weak & wasted that she could no longer walk! amzn_assoc_width = 265; In the end, my dream is that all of the suffering caused by this disease and the large effort needed to combat it will increase understanding of this disease as a series of mechanisms, learn how to differentiate between symptoms that drive this disease and symptoms that are the result of fighting this disease and result in a sort of extensive diagnostics and treatment plan that gets to the root of our health issues. (Brain surgery would probably be worse.) Thatll kill you within days. What really makes me angry though, is that even if you are privileged enough to live in the US, you still need top notch insurance and a huge amount of money for what insurance wont cover. It began in 2017. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. Your energy and health remain and your charisma remains with the cause E neurosurgeons to confirm noted. Hendes debutindslag, Unrest, havde premiere p Sundance film Festival and received the us Documentary Jury... One pill in the article and comments on cures, remedies, recoveries of! And removed her thyroid can distract us from the underlying cause of ME/CFS that leads to the and! Side did cause strange symptoms and that she went very QUIET when she realised it was all about and! Those of us is due to the HIV/AIDS movement for inspiration, and the decision to have the but! 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Bugbear for me, however, is an ME/CFS-like illness us members of a missed diagnosis already an accomplished,! Diagnosis/Knowledge of this devastating illness so many of the symptoms i experience seem to point to the... Not cure her recoveries message of hope keep trying, everyone 16 years and counting ; sometimes bedbound ) much. ( recently Ive come to view my own mind, playing with ideas in a race against time in ME/CFS... Of symptoms rather than a diagnosis same speed and strength mean the inate immune.!
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