I use the same process for mental skills. Dean, I couldnt agree with you more. Would it be possible for you to follow De Meirleirs regime for some symptom relief while you wait for the world to catch up? With all of us working together who knows what will happen? Unless, of course, it works! * The brain part of the spinal fluid bag sees each breath a wave of contraction / expansion or more pressure / less pressure. Not to mention the ability to take off of work. Well said, Michele Brown. long story version coming soon. 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. The surgery with a well respected neurosurgeon who does many of these surgeries helped with pain and some symptoms but did not help with CFS-ME. Jen Brea makes two people with severe, apparently classic cases of ME/CFS who have recovered or are recovering after being treated for craniocervical instability (and in Jens case, tethered cord syndrome). Jennifer Brea is a filmmaker who suffered with CFS for a long time, and made an award winning documentary about CFS called Unrest. Maybe, the warrior said. Happiness that someone who has been so ill may no longer be suffering. It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. So many people have had CCI and tethered cord surgeries and are not cured. I had to relearn doing thins as simple as how to stand up from a chair, opening a door and walk through it without bumping into it and how to do corners like walking around the corner of a table. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. Sorry for the delay I changed this: Jeff reported that, for most of his ME/CFS, his vague headaches and neck symptoms provided no clues that his head and neck. Even with good neurosurgeons surgery is often a crude solution for something that may have an elegant molecular solution in the future . I am happy for Jeff and Jan! Its interesting to me to look at the mast cell angle. Jeff and Jens stories do bring a new focus to the spine and brainstem. 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. A word of caution. This is yet another area where Jen Brea and ME action have made such a difference: theyve provided a locus for people to rally around. A neurosurgeon saw my MRI in Unrest and emailed me to say."yeah, that 'normal' MRI isn't normal." The path that led me to a diagnosis of craniocervical instability began with the observation that I had intracranial hypertension, a condition some clinicians believe is associated with ME/CFS. a thyroid nodule If he did test positive I wonder if a) he could get to a neurosurgeon and b) if he could survive the surgery! One of these docs talked to me about people like us having angry or unhappy brains and he can do procedure on someone and they have major improvement and on another and no major improvement. Again, none of this has been a cure but with pacing, infection and stress avoidance, and staying within preset limits (total daily steps and anaerobic heart rate), Im less sick and have an improved, albeit still limited, quality of life. I was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. Carol. amzn_assoc_bg_color = "FFFFFF"; The information found on Health Rising is mostly put together by people with ME/CFS and/or FM. So weve got a small spinal fluid pump / mixer which may be a good thing. This is why Im curious if Jens MCAS or mast cell activation came on as a result of environmental trigger (mold) or has a genetic origin. Terri Wilder, M.S.W. If all it took to cure it was a spinal surgery, wed all be jumping up and down with joy. I really dont know what to sayIt must be hard, indeed, to read some of these blogs. I am glad for Jen Brea but hope it lasts. * There is a small but enduring cycle of spinal fluid being moved from the bag to the tail and vice versa. However, I am grateful to at least been able to pursue these different medical tests in a quest for answers. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. At least now, she is out of her pain. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. However, and I state again, she was not an HEDS patient. 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. Its going to be interesting figuring this all out! 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. Ken Anbender recovered from 26 years of hell using the Pridgen Protocol. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. amzn_assoc_default_search_key = "";
Re Jen and Jeffs CCI surgery, if in theory their CCI was caused by inflammation triggered by an enterovirus that caused Classic ME in others, why would treating the CCI heal all symptoms, surely some illness would still be remaining? Is that possible? [4]" The people said it was unlucky. That will alert other doctors to this issue and provide the basis for grants to study this more. I have bought Dr. Raymond Perrins book and no person in this area can do these exersices so im doing them myselfmy lumps are going awayi still have many many issues. It was not tolerable and she was in a real bad way before she passed. Surgery was the only option for Jeff and Jen, but its not for everyone. Even if treating cranial instability would treat a large percentage of ME patients, itll take plenty of time to train enough professionals to get such numbers of patients treated well. Im very happy for those who benefit from surgery but a new diagnosis may just add another name to my long long list. The symptoms matched. Maybe, the warrior said. 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. I wonder if a move is in store? That is great to hear! Two methods can provide an indication that CCI/AAI might be present. Hence why its one of those you dont want to miss complications of rheumatoid arthritis, or dont want to miss for any reason. He said he didnt have time. 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. (X-rays are not sufficient to test for this condition, however.). I also wonder if the long term bed rest could contribute to ligament laxity which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS.. Lots of bracing and proper alignment with body posture very necessary. Thats why I am good enough again at some tasks and still utterly fail at some others. Its the first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces. Thanks! my head goes clean through the rear window of the truck and im knocked out. #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. So I learned to go back to the basics each time that happened. My name is Jennifer Brea. Hi Ruth Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. It makes sense as those are computational far far less complex to do. Surprisingly, I find I sleep best with my legs higher than my head. PS. My daughters illness started with swollen lymph nodes, mouth and nose ulcers, extreme fatigue, low grade fevers, muscle and joint pain, exercise intolerance, POTS. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? I was called crazy by doctors ..neighboursfriends.my parentsit didnt sit with me too well. The collars do not always improve symptoms, however. 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. EDS type 3 is one presentation of MCAD and my daughter has Hereditary Alpha Tryptasemia (as per NIH) and MCAS as per qualifying for activation by strictest diagnostic criteria. Each of these could trigger a different (and less invasive) treatment approach. Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Can you make a correction to your article? But I want to feel even better, so I am going to pursue more neck/head related options. 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. If you have a diagnosis of ME or CFS, meet the Canadian Consensus (CCC) or International Consensus (ICC) criteria, and have already been assessed for a mechanical/structural craniocervical or spinal problem by a neurosurgeon, was the result positive or negative? Basically the criteria states if theres only x amount of these symptoms its hypermobility. Who is the agent for Jennifer Brea? 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. Some of us have multiple family members with mast cell disease and can trace our symptoms back to childhood or infancy. The people said it was very lucky. 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). With it, the line of my spine and the surrounding tissue gets contracted or expands a little bit. Im still waiting Ill leave Jennifer and others to judge upon how it affects them. And I also wanted to express how much I love how you write, Cort with this example being particularly resonant (and delightful): When (recovery/remission) occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. I have had ME for almost 14 years but am not bed bound. I had 4 episodes of viral thyroiditis before I had it removed. While she was pursuing her PhD at Harvard, she fell ill and was . At the beginning of May, a 26-minute trailer for the movie . I asked him how we could rely on the literature without documentation of case reports. Merck reported that symptom improvement during a procedure called Invasive Cervical Traction (ICT) where ones head is pulled upward by a pulley system can help diagnose CCI/AAI. There are 21 other people named Liz Delany on AllPeople. We know Jen Brea and her husbands story on an intimate level through Unrest. Jen has said she believes that mold exposure in Beijing may have triggered her MCAS which may have caused collagen degradation which may have led to the CCI the CCI can also trigger mast cells and immune dysregulation as well as POTS, hEDS, etc. 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. Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. The story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases. 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. 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). She saw a world renown surgeon and we are very happy with the surgery. I myself had pectus, which was brushed off as a cosmetic issue. He did also say the Royal Free outbreak he documented as he was a physician there when it happened seemed to resemble previous documented atypical polymyelitsis outbreaks. 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). (08/07/2008). Her new health she says she will stay involved is a gift not just to her but to all of us. American neurosurgeon, author, and politician; 1951 - Dee Dee Ramone, American singer-songwriter and bass player . fast forward to 8 months ago my natropathic doc says we need to test your heavy metalsit comes back that my levels of uranium, nickel and antimony are way high. 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. That does not mean similar examples such as Breas are not real, but are the exception. Check out the difference between the3T and 1.5T machines). This surgery is extreme and I hesitate to see it as a cure for most of us. Also EDS tissue can have a tendency to stretch and droop out of position. About 10 years ago I went to my Medical Internist with horrible neck pain, headaches and difficulty swallowing. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. I am surprised by how angry I feel, not at Jen, but at the quirks of fate and geography that dictate whether we will receive help or no help at all. Im in awe of what both of you have achieved. During craniocervical fusion the skull is pulled upward and placed into the correct position, and the occipital bone of the skull is fused to the upper cervical vertebrae to hold the head in the correct position; i.e. I think that cervical spinal stenosis must be much more common than CCI but I dont know for sure. She had put off having this surgery until after the promotion from "Unrest" was over. She can bend her hand flat on her arm. It improves the function of the vagus nerve and also peripheral muscle signaling (muscle fatigability)at least it did in my case. Browse 72 jennifer brea stock photos and images available, or start a new search to explore more stock photos and images. With my improved health, I will continue to fight alongside each of you for equality, dignity and better care; to challenge stigma and advocate for research dollars and medical education. If you were a betting person what odds would you have put at that happening? Almost every body part is affected. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. A Fibromyalgia and Chronic Fatigue Syndrome Inquiry. 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? But it is just too hard to imagine that given what we already know of CFS and its known risk factors. For example, I found out that I have: sickle cell trait Im good on interpreting what she says and linking tiny difference in how it feels with what she says about how things are connected. 9 Neurosurgeon 1 episode, 2016 Juan Javier Cardenas . I think Europe has a stronger tradition of (and gives more value to)physiatry. Even if you dont have CCI/AAI, the search for it may help uncover other problems. Thats how genuine he is. 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. Maybe not probable but at least possible. I have found a lot of things of relevance and some of questionable relevance. Jeff just interviewed someone who recently had the surgery. I am in the same place as debs. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. Why you should listen. I absolutely feel she should not feel any guilt. Dear Cort The scales are certainly off in ME/CFS. Lets go back to Naviauxs research and Ron Davis comments on it. Pyroluria Real Disorder or Figment? After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. 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. Later, the warriors son was thrown from one of the ponies and broke his leg. amzn_assoc_search_type = "search_widget";
On the one hand, how wonderful to have possibly found a cure after 26 years of illness! Not a destiny. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. Amy, if you have the possibility in your area, look into Alexander Technique. My spine prefers as nearly completely horizontal as possible. 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. 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. Simran Hans @heavier_things . If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. 2) Why is there such a prevalence of women in the ME patient population? The Recovery/Recovering Stories section of Health Rising often triggers differing emotions some people love them, others hate them. To add to the problem, we dont always know what information is relevant and what is not.
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