Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. The larger bugbear for me, however, is the issue of money. My bedsheets were brown in a week with toxins..still are. Van Elzakker pointed to four ways the brainstem may be involved in ME/CFS: See The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way. The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. On the one hand, how wonderful to have possibly found a cure after 26 years of illness! I could hold my head up again. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. Even though its a spinal condition you dont need to have either I dont believe. She couldnt even get the facts right here. 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. Contact info: (215) 895-2808, efd22@drexel.edu Find more info on AllPeople about Liz Delany and Drexel University, as well as people who work for similar businesses nearby, colleagues for other branches, and more people with a similar name. 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. 'Unrest' Director Jennifer Brea Reveals How Making a Documentary About Her Illness Helped Treat It Brea explained her process at a recent IDA screening. The muscles sometimes arent strong enough to hold the head stable. 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,. Hi Cort, my head is LOWER than my feet in my bed. Ann, you are so right. 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. 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. I had constant vertigo, extreme light and sound sensitivity, sensory processing disorder problems that were so uncomfortable I would beg god to let me die. Im sure Ron and Janet have thought a lot about this. 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? My name is Jennifer Brea. i now wonder if there is a way to create bone loss. One person diagnosed with CCI reported on the Phoenix Rising forumsthatmanual traction (having someone pull on ones head while lying down) can help, and prescription drugs have resulted in major improvements. and not as referrable to any specific part of my anatomy for the vast majority of my illness. I cried for you when I watched Unwell, and now Im thrilled to cry tears of joy for your recovery. I wanted some sort of cervical traction because my head felt too heavy. What I have found most interesting is that I also have spinal conditions too, spinal stenosis, osteo- arthritis, diagnosed in my mid-30s . The surgery itself is very harsh to the body. 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? amzn_assoc_region = "US"; It has helped a lot with my pain and function, though not a cure. The people said it was unlucky. She had conjectured, I believe, that she had a hypermobility spectrum disorder as a result of her CCI. Basically the criteria states if theres only x amount of these symptoms its hypermobility. Brea, Jennifer (May 20, 2019). So my personality, hopes and ability to enjoy life has decreased dramatically. If theres x amount more symptoms its eds. igG food sensitivities (many, including unexpected ones) But, because of his broken leg, the warriors son was left behind, and so was spared.. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) And NONE of these recovery stories have passed the test yet as far as I know. I directed the Sundance documentary UNREST and co-founded #MEAction. After graduating from Princeton University with an AB in Politics, she was a freelance journalist in China and East and Southern Africa and a TED Fellow. It shows how variable this all is some people get helped with the opposite practice. I have been following Jennifer Brea since her appearance and outstanding presentation given at the TED. Lots of bracing and proper alignment with body posture very necessary. Management advice for both hEDS and HSD is the same., I agree, misdiagnosis big time. 1 2 43 Jennifer Brea @jenbrea Dec 8, 2021 Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. Am going through a difficult bout of neck pain right now, and it seems to be because of the variable barometer. I can understand the objection, but I wouldnt call Jen Brea case a misdiagnosis. 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. Jennifer Brea is impacting the world for people living with the invisible disabilities, M.E. Hi Matthias, this is not something i have experienced. 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. This whole bloody process has shown me how much medicine is just belief. She has a tethered cord but that surgery does not cure CFSME either. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. For more info call me at 650-868-0603, Hi! But mechanics says that the position of skeleton and surrounding muscles will be determined by the quality of the skeleton, the surrounding connective tissue and the quality of the muscles keeping everything in the wright position. We could not avoid the unsafe people during this process that took us at least 3 years and only one surgery accomplished. Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting The common thread with all these things is that any form of stress (good or bad) causes reactions in the body which produce toxins as a by-product. The surgery did nothing for me. 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. I immediately had changed in functioning and energy. 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. https://www.reddit.com/r/ehlersdanlos/comments/7oro4c/rip_nina_parsons/. Your email address will not be published. Often the drooping brain stem will not be apparent unless a patient is upright. Again happy for someone to elaborate if they know. Showing up at doctor appointments with published information is the only way I have persuaded doctors to do testing or try treatments. 1981 - Jennifer Tisdale, American actress and singer; 1981 - Kristaps Valters, Latvian basketball player . This is not an example of remission or a recovery from ME/CFS. Could Jen and Jeff and the 20 people on Phoenix Rising who have tested positive for CCI/AAI be the ME/CFS wing of CCI/AAI? 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.. Check out the difference between the3T and 1.5T machines). What this paper,(and the Jennifer Brea case as well) shows once again is the importance of a proper workup by a good physician to rule out all potential causes of their symptoms. I know. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. Then, in 2018, after surgery for thyroid cancer, I developed central apnea that caused me to stop breathing every time I turned my head or laid on my back, whether I was asleep or awake. extremely elevated cortisol awakening response Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. I think that cervical spinal stenosis must be much more common than CCI but I dont know for sure. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . 1) ME causes all cells in the body to work differently compared to before and that includes brain cells. Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. She describes how her online community helped her find the right diagnosis. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. Decades after falling ill it was corrected. Just think about how you try to get stuck objects unstuck: not by keep pushing onto it but by alternately push fort back forth back. PS. I have only been bedridden for months at a time, and it was just horrible each time. I, Jennifer Breas Amazing ME/CFS Recovering Story: the Spinal Series Pt. So it goes for many people whove recovered. Almost immediately I began feeling with more energy, clarity of mind and happiness. Our disease is very diverse. Jeff just interviewed someone who recently had the surgery. You deserve it so much more than me. 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. I had the opportunity to work at a fairly renowned clinic for a brief period that works with people with ME/CFS. It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. 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. Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. Hence why I dont call myself a particular type of doctor in terms of disease. I just consider myself a facilitator of healing. That said, I dont blame patients objecting to this kind of recovery story. CHIARI-1 MALFORMATION 8mm, rounded morphology (08/07/2008); 5mm, peg-like morphology (08/26/2014), Mild CROWDING OF THE FORAMEN MAGNUM (08/07/2008), DIMINISHED CSF PULSATION IN THE DORSAL ASPECT OF THE FORAMEN MAGNUM (08/07/2008), Mild degenerative changes are present throughout the cervical spine with posterior disk bulges from C2-C3 to the C6-C7. Retrieved June 3, 2019. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. 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? A huge waste of money. 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! In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. So maybe at the core of ME is pro-active hibernation with the body waiting out a problem it cant resolve all by itself but very actively trying to provide, restore, improve and replace vital affected functions just to allow us to survive long term and hopefully even do so with very few permanent damage. Going by Jens movie, this make sense for her. As such, hibernation is a very wasteful process. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. Since my accident Ive had very few issues with my neck. In your daughters case it would make sense that having HATS the surgery wouldnt cure anything. I was recently diagnosed with Pyroluria. Thank you so much for this article, and care you have taken. Its wonderful work you are doing, Cort! Jeffs publication of his story may have saved Jens life. What was cloudy yesterday may become clear today. That will alert other doctors to this issue and provide the basis for grants to study this more. Do NOT take any other acetylcholinesterase inhibitor, in any form, while taking this supplement since HupA is a VERY potent drug. Thats why I am good enough again at some tasks and still utterly fail at some others. beginning to think that this is not a case of recovery from MECFS but rather its a case of misdiagnosis of MECFS in the first place. He is located in Brussels, and I have heard of occational home visits. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. Hi Ruth Being able to write an article that reflects both the happiness for Jen and being pleased for any of us who find a way back whilst recognising there are other complex emotional responses going on is an honest thing to do.
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Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. The larger bugbear for me, however, is the issue of money. My bedsheets were brown in a week with toxins..still are. Van Elzakker pointed to four ways the brainstem may be involved in ME/CFS: See The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way. The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. On the one hand, how wonderful to have possibly found a cure after 26 years of illness! I could hold my head up again. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. Even though its a spinal condition you dont need to have either I dont believe. She couldnt even get the facts right here. 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. Contact info: (215) 895-2808, efd22@drexel.edu Find more info on AllPeople about Liz Delany and Drexel University, as well as people who work for similar businesses nearby, colleagues for other branches, and more people with a similar name. 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. 'Unrest' Director Jennifer Brea Reveals How Making a Documentary About Her Illness Helped Treat It Brea explained her process at a recent IDA screening. The muscles sometimes arent strong enough to hold the head stable. 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,. Hi Cort, my head is LOWER than my feet in my bed. Ann, you are so right. 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. 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. I had constant vertigo, extreme light and sound sensitivity, sensory processing disorder problems that were so uncomfortable I would beg god to let me die. Im sure Ron and Janet have thought a lot about this. 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? My name is Jennifer Brea. i now wonder if there is a way to create bone loss. One person diagnosed with CCI reported on the Phoenix Rising forumsthatmanual traction (having someone pull on ones head while lying down) can help, and prescription drugs have resulted in major improvements. and not as referrable to any specific part of my anatomy for the vast majority of my illness. I cried for you when I watched Unwell, and now Im thrilled to cry tears of joy for your recovery. I wanted some sort of cervical traction because my head felt too heavy. What I have found most interesting is that I also have spinal conditions too, spinal stenosis, osteo- arthritis, diagnosed in my mid-30s . The surgery itself is very harsh to the body. 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? amzn_assoc_region = "US";
It has helped a lot with my pain and function, though not a cure. The people said it was unlucky. She had conjectured, I believe, that she had a hypermobility spectrum disorder as a result of her CCI. Basically the criteria states if theres only x amount of these symptoms its hypermobility. Brea, Jennifer (May 20, 2019). So my personality, hopes and ability to enjoy life has decreased dramatically. If theres x amount more symptoms its eds. igG food sensitivities (many, including unexpected ones) But, because of his broken leg, the warriors son was left behind, and so was spared.. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) And NONE of these recovery stories have passed the test yet as far as I know. I directed the Sundance documentary UNREST and co-founded #MEAction. After graduating from Princeton University with an AB in Politics, she was a freelance journalist in China and East and Southern Africa and a TED Fellow. It shows how variable this all is some people get helped with the opposite practice. I have been following Jennifer Brea since her appearance and outstanding presentation given at the TED. Lots of bracing and proper alignment with body posture very necessary. Management advice for both hEDS and HSD is the same., I agree, misdiagnosis big time. 1 2 43 Jennifer Brea @jenbrea Dec 8, 2021 Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. Am going through a difficult bout of neck pain right now, and it seems to be because of the variable barometer. I can understand the objection, but I wouldnt call Jen Brea case a misdiagnosis. 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. Jennifer Brea is impacting the world for people living with the invisible disabilities, M.E. Hi Matthias, this is not something i have experienced. 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. This whole bloody process has shown me how much medicine is just belief. She has a tethered cord but that surgery does not cure CFSME either. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. For more info call me at 650-868-0603, Hi! But mechanics says that the position of skeleton and surrounding muscles will be determined by the quality of the skeleton, the surrounding connective tissue and the quality of the muscles keeping everything in the wright position. We could not avoid the unsafe people during this process that took us at least 3 years and only one surgery accomplished. Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting The common thread with all these things is that any form of stress (good or bad) causes reactions in the body which produce toxins as a by-product. The surgery did nothing for me. 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. I immediately had changed in functioning and energy. 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. https://www.reddit.com/r/ehlersdanlos/comments/7oro4c/rip_nina_parsons/. Your email address will not be published. Often the drooping brain stem will not be apparent unless a patient is upright. Again happy for someone to elaborate if they know. Showing up at doctor appointments with published information is the only way I have persuaded doctors to do testing or try treatments. 1981 - Jennifer Tisdale, American actress and singer; 1981 - Kristaps Valters, Latvian basketball player . This is not an example of remission or a recovery from ME/CFS. Could Jen and Jeff and the 20 people on Phoenix Rising who have tested positive for CCI/AAI be the ME/CFS wing of CCI/AAI? 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.. Check out the difference between the3T and 1.5T machines). What this paper,(and the Jennifer Brea case as well) shows once again is the importance of a proper workup by a good physician to rule out all potential causes of their symptoms. I know. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. Then, in 2018, after surgery for thyroid cancer, I developed central apnea that caused me to stop breathing every time I turned my head or laid on my back, whether I was asleep or awake. extremely elevated cortisol awakening response Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. I think that cervical spinal stenosis must be much more common than CCI but I dont know for sure. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . 1) ME causes all cells in the body to work differently compared to before and that includes brain cells. Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. She describes how her online community helped her find the right diagnosis. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. Decades after falling ill it was corrected. Just think about how you try to get stuck objects unstuck: not by keep pushing onto it but by alternately push fort back forth back. PS. I have only been bedridden for months at a time, and it was just horrible each time. I, Jennifer Breas Amazing ME/CFS Recovering Story: the Spinal Series Pt. So it goes for many people whove recovered. Almost immediately I began feeling with more energy, clarity of mind and happiness. Our disease is very diverse. Jeff just interviewed someone who recently had the surgery. You deserve it so much more than me. 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. I had the opportunity to work at a fairly renowned clinic for a brief period that works with people with ME/CFS. It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. 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. Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. Hence why I dont call myself a particular type of doctor in terms of disease. I just consider myself a facilitator of healing. That said, I dont blame patients objecting to this kind of recovery story. CHIARI-1 MALFORMATION 8mm, rounded morphology (08/07/2008); 5mm, peg-like morphology (08/26/2014), Mild CROWDING OF THE FORAMEN MAGNUM (08/07/2008), DIMINISHED CSF PULSATION IN THE DORSAL ASPECT OF THE FORAMEN MAGNUM (08/07/2008), Mild degenerative changes are present throughout the cervical spine with posterior disk bulges from C2-C3 to the C6-C7. Retrieved June 3, 2019. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. 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? A huge waste of money. 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! In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. So maybe at the core of ME is pro-active hibernation with the body waiting out a problem it cant resolve all by itself but very actively trying to provide, restore, improve and replace vital affected functions just to allow us to survive long term and hopefully even do so with very few permanent damage. Going by Jens movie, this make sense for her. As such, hibernation is a very wasteful process. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. Since my accident Ive had very few issues with my neck. In your daughters case it would make sense that having HATS the surgery wouldnt cure anything. I was recently diagnosed with Pyroluria. Thank you so much for this article, and care you have taken. Its wonderful work you are doing, Cort! Jeffs publication of his story may have saved Jens life. What was cloudy yesterday may become clear today. That will alert other doctors to this issue and provide the basis for grants to study this more. Do NOT take any other acetylcholinesterase inhibitor, in any form, while taking this supplement since HupA is a VERY potent drug. Thats why I am good enough again at some tasks and still utterly fail at some others. beginning to think that this is not a case of recovery from MECFS but rather its a case of misdiagnosis of MECFS in the first place. He is located in Brussels, and I have heard of occational home visits. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. Hi Ruth Being able to write an article that reflects both the happiness for Jen and being pleased for any of us who find a way back whilst recognising there are other complex emotional responses going on is an honest thing to do.
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Van Mendelson Vs. Attorney General Guyana On Friday the 16th December 2022 the Chief Justice Madame Justice Roxanne George handed down an historic judgment...