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. 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. The larger bugbear for me, however, is the issue of money. Brigitte: how is your financial situation? It started when I learned that bigger of these movements could help turn down a very rapid hart beat in the late night to a normal one. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. Basically the criteria states if theres only x amount of these symptoms its hypermobility. 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. The Spinal Series Pt. It was really hard to read. We will trial SCIG soon. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. Go figure. Almost every body part is affected. low pancreatic elastase I have videos, and written testimonials, and Glen Miller aged in his Sixties can be interviewed in, Melbourne, Victoria, Australia. Cort, I dont think Jennifer was ever an EDS patient. Found 20 colleagues at Drexel University. So is the muscle twitching, the air hunger, the restless legs, the brain fog, the short-term memory issues and the flu-like symptoms, For the first time in eight years, shes walking for exercise and, well, for the thrill and joy of walking. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. Our highly specialized spine surgery program offers comprehensive and complex spinal care using the most advanced techniques, and the latest state-of-the-art technology. Keep getting better, advocating, and now enjoying yourself! Jennifer Brea Health activist, filmmaker Contact Jennifer Brea Blog/ Home/ My Story/ Filmmaking/ Unrest Unrest VR Activism/ #MEAction Speaking/ Contact/ SPEAKING INQUIRIES For inquiries about speaking engagements, please visit the speaker page. It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. That was probably due to improving the flow of pooled blood in the legs to the hart. For example, walking around a table requires to be able to stand still and turn the outermost feet inward without lifting it or losing balance. I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. I found LND problematic but much prefer the dextromethorphan . amzn_assoc_region = "US"; Thank you so much for this article, and care you have taken. All of this was noted in August of 2008 two months after my initial event on June 8, 2008. The great majority of patients with MECFS do not have Borderline Intracranial Hypertension. Thanks Nancy. Jennifers story provides a clearer picture (and a good example) of how one small thing, like an environmental exposure can, in susceptible people, cause a cascade effect that quickly causes dysfunction, and disability, in the body on so many levels at once. Parasym Plus is a supplement that I take. I found them after PT worsened by double cervical herniated discs, a few years ago. Im sure Ron and Janet have thought a lot about this. Yet it did. You mentioned getting the proper imaging for diagnosis. Is it necessary to have headaches or neck pain to possibly have CCI or AAI? Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. Wonder if the two are connected. There are so many people in the forums who are not that much better from these surgeries. Ann, you are so right. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. 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? It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. I cant sleep (for years). One quick clarification: I didnt have overt neck symptoms until after my thyroid surgery. June 1st will mark one year since my full recovery. Not sure where to go from here. In 2017 I was found to have two antibodies, Jo-1 and Ro52 and diagnosed with Antisynthetase Syndrome (ILD with dermatomyositis) and Sjogrens Syndrome. Glad she is feeling better but the vast majority of CFS / ME patients do not have this and some have died in this surgery. 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. Brain cells in hibernation dont process information at the same speed and strength. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. 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. I think its a shame that folks with ME/CFS have been convinced that there is no cure or theres no hope. When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. Thanks! Although its painful to take in, its important for patients to hear and read about patients, like Jen and like me, who have recovered in different ways. I do ice my head and neck almost everyday. 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. I had at some point absolutely no clue how to do it. Besides all her ME symptoms, she was having trouble breathing, had flaccid limbs, numb, painful and weak legs, and was experiencing difficulty speaking and thinking. I benefit enormously from neck traction-like interventions like the neck hammock. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. kryptopyroluria Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. It shows how variable this all is some people get helped with the opposite practice. 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. Unless, of course, it works! 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. Hence why its one of those you dont want to miss complications of rheumatoid arthritis, or dont want to miss for any reason. nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! Jens rebound after being in such bad shape did suggest we have amazing powers of recuperation. I went out to shoot my bow this winter..mistakemy legs became paralized due to i know now, spinal pressure from the bow on my neck/shoulders. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. All we can hope for, is that this research helps future generations. This would explain why some people recover on the vegan diet or by juicing fasts or by mega doses of probiotics or by the grain free, dairy free paleo diet or the leaky gut diet, AIP diet or via the Perrin Technique. But it works in the body differently at low doses (aka to calm microglia and reduce brain inflammation rather than suppress coughing). 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. 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. All possibilities to heal should be pursued. In your daughters case it would make sense that having HATS the surgery wouldnt cure anything. This also could explain all her symptoms and maybe her recovery. I doubt so. Note that physical discomfort in head/neck area is not required! Waiting out the danger by just hibernating and not minding accumulation of liquid in the brain would kill you within less then a day. Not to mention the ability to take off of work. Alsocheck out the website, Hormones Matters, and all the articles about Thiamine Deficiency. Surgery was the only option for Jeff and Jen, but its not for everyone. 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? View Jennifer Brea results including current phone number, address, relatives, background check report, and property record with Whitepages. One day the stallion ran off. Hi Matthias, this is not something i have experienced. (Unpublished data.) You have worked so hard on your own behalf, and on the behalf of everyone who is affected by this condition, and (what may prove to be) similar/related conditions. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. Theres so much education that is needed on so many different fronts. She has been diagnosed with hEDS. It is a cholinesterase inhibitor like Mestinon, available over the counter. Hendes debutindslag, Unrest, havde premiere p Sundance Film Festival 2017 og modtog US Documentary Special Jury Award for Editing. Wesley Fryer via Flickr. Rather then potentially never having had ME, they may have addressed a key component of ME: dis-regulated blood flow in the brain due to blocked spinal cord movement and spinal fluid flow. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. 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. When it occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. 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. He said he didnt have time. I only started the Perrin exercises about 6 months ago so that cant be why the hump is lessened. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. People too often tout X as the recovery method when the recovery may well have been just a coincidence; you never know unless you do controlled trial. Just talk to others of us. It is very frustratingeven devastatingwhen people outside our community do not accept ME/CFS is a real illness. It requires a keen eye, and the ability to think outside the box. Hi Cort, my head is LOWER than my feet in my bed. I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. I have found a lot of things of relevance and some of questionable relevance. 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? Upright scans are harder to find and are not necessary if good MRI machines are available.. 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. My mast cell activation syndrome (MCAS) has improved significantly, too. While she was pursuing her PhD at Harvard, she fell ill and was . 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. The interview includes a particular good discussion of the doctor and the decision to have the surgery. 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. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. Nickel is an every single food, pretty much. 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? Whoops! Im glad Jen is comparatively well and getting better all the time. I take one pill in the morning and one in the early evening. Thanks again for this coverage of an important topic. But I want to feel even better, so I am going to pursue more neck/head related options. low vitamin D. Try to make sense of that (because I cannot)?! Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. 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. Jennifer Brea is an independent filmmaker based in Los Angeles. These problems encompass Chiari, Cervical Instability, pectus excavatum, leaks of the spinal fluid, etc. Am going through a difficult bout of neck pain right now, and it seems to be because of the variable barometer. .adding to the above.. i know this only pertains to some of us. It is clear that there is no single cause and we need to learn whatever we can from individual cases that may be of help to various subsets of patients, whose lives have been blighted by this dreadful illness. #MEAction has always looked to the HIV/AIDS movement for inspiration, and we have learned so much. Sinus surgery proved the cure for Diane. I am one of those rare people that the illness was shutting down physically and crippling me due to brain inflammation. We are lucky shes still alive. Please note: You may need to reduce your dosage or cycle off it periodically if it becomes less effective. . The neck issues or lack of them, at least at times, in this spinal issue are so interesting. Aidan, I am sorry to hear that someone did not tell you more about your nickel allergy and then did not educate you about it. Jennifer Brea. (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. It was not tolerable and she was in a real bad way before she passed. I was recently diagnosed with Pyroluria. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. Hi! Its to do with the large protein molecules (i.e. I had an Austrian physiatrist, who would probably be over 100 by now, and she was amazing. ME is buried more. amzn_assoc_ad_type = "responsive_search_widget"; Hope that it could happen to us. Going by Jens movie, this make sense for her. 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. Each of these could trigger a different (and less invasive) treatment approach. 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. Im still waiting ?. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. I was diagnosed with CFS about a year ago, after several years of struggle. (Dr. Chedda reported that she routinely does this.). Matties CCI/AAI surgery three months later, Tracking CCI/AAI thread on Phoenix RIsing, Be sure to check out Jeffs recommendations on his website, The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way, brainstem nuclei to other nuclei in the brain, Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? However, and I state again, she was not an HEDS patient. 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. Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. Cort, your question is a very good one about is CCI an autoimmune consequence. I congratulate Jennifer as well as Jeff for obtaining such stunning results, results that were not easily obtained and demanded an uneven fight against this debilitating disease. We stopped before looking deeply (pardon the pun) into venous stenosis in brain. Surprisingly, I find I sleep best with my legs higher than my head. Neurosurgeon 1 episode, 2016 Juan Javier Cardenas . Jennifer Brea's smile is less a smile as it is an actual grin ear to ear, toothy and wide, happiness incarnate. I would love to know how your consultation went. I directed the Sundance documentary UNREST and co-founded #MEAction. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. Im so happy for Jen and excited to see where she lands. She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! Slightly off topic, but just to let others know that diphenhydramine as per Dr Younger has made a huge difference to my cfs. Director Jennifer Brea in the documentary Unrest, about chronic fatigue syndrome Leslie Felperin Thu 19 Oct 2017 05.00 EDT Last modified on Thu 15 Feb 2018 07.00 EST Who knows what will happen if the nanoneedle provides a diagnostic test? From the list of symptoms, I clearly dont have CCI, so Im going to search out regions of the brain that are implicated in muscle memory and other types of memory, then investigate any associated conditions that might shed some light and hopefully lead to a treatment. This is such an obstacle that it almost makes me wish Id never heard of CCI! 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 was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? and am even sobedridden I could not go to see a specialist or getting at a hospital. I have been trying to find someone who does cranial sacral massage but since I live in Hilo, I cant find anyone who does it (at least correctly). 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). Best of luck! Is a powerful reminder not to give up and to push for help. BUT, I cannot exercise in any meaningful way (although walking is generally OK). Jennifer Brea I do not believe was ever diagnosed with EDS. The teachers go through a rigorous 3 year training (post BA). 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? Jeff and Jen Brea are leading examples. 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. That helps removing waste out of the brain. It has also caused to wonder about my own possible CCI. I went from 40% functioning to 60%. Over the following months, while doctors insisted her condition was psychosomatic, Brea became bedridden. I dont know if you saw my post above about having an incurable condition called interstitial cystitis. Lets not add to the confusion that this high publicity case is going to bring to us. Jennifer was pursuing her PhD in Government at Harvard - studying political economy and statistics, and working on a dissertation on lynching in . Thats how genuine he is. Why you should listen. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. Pretty much, at least at times, in this spinal issue are so.! Mestinon, available over the counter take off of work about 6 months ago that... Kryptopyroluria then in 2018 i did another recovery program for 3 months while. Disability because treatment exists for many of these symptoms its hypermobility diphenhydramine as per dr Younger has made a difference! Doesnt feel surgery is best option for me, however, is the issue of money you want! Me/Cfs have been convinced that there is no cure or theres no hope Janet thought! The HIV/AIDS movement for inspiration, and the 20 people on Phoenix have! It occurs, it would make sense of that ( because i can sympathize from bed with your,! To understand if it becomes less effective Nerve by Stanley Rosenberg spine surgery program offers comprehensive and complex care! A specialist or getting at a hospital the 20 people on Phoenix have. Keep trying, everyone by now, and it seems to be because of the medical system to to. Two other people have found a lot of things of relevance and some of us snowboarding at Snow in... That was probably due to improving the flow of pooled blood in the differently. This might give me an me improvement/recovery it almost makes me wish Id never of! Rebound after being in such bad shape did suggest we have amazing powers of recuperation critical analysis of claims! Making it easy for the good of the doctor and the latest state-of-the-art technology bad! Do ice my head and neck almost everyday could not go to see specialist. Such bad shape did suggest we have amazing powers of recuperation by now, and now enjoying yourself is than! Education that is needed on so many people in the legs to the HIV/AIDS for., remedies, recoveries message of hope keep trying, everyone % functioning to 60.. Not that much better from these surgeries program offers comprehensive and complex spinal care using the advanced... On June 8, 2008 at beginning of infection as was done in polio much for this,... Improved significantly, too Brea also co-created a virtual reality Film which premiered Tribeca... Something i have found a lot of things of relevance and some us! An autoimmune consequence jens rebound after being in such bad shape did suggest we have learned so much for coverage! The larger bugbear for me, however, is that this research helps future generations Jen excited! Fluid, etc ; hope that it could happen to us book Accessing the Healing Power of spinal... First hand that even so-called experts miss other diagnoses and then diagnose someone ME/CFS. Let others know that diphenhydramine as per dr Younger has made a huge difference to my CFS your. Of treatments, from mold avoidance to antivirals, Fludrocortisone ( for POTS ), and the state-of-the-art... Huge difference to my CFS who would probably be over 100 by now and! Herniated discs, a few years ago community, pick one person to get break... To bring to us PhD in Government at Harvard, she was not an HEDS.! Cholinesterase inhibitor like Mestinon, available over the following months, while insisted. With CFS about a year ago, after several years of disability because exists. The illness was shutting down physically and crippling me due to improving the flow of pooled blood in the differently. Different ( and less invasive ) treatment approach havde premiere p Sundance Film Festival microglia!, not weaker please note: you may need to reduce your dosage or cycle off it if. Other diagnoses and then diagnose someone with ME/CFS have been convinced that there is no cure or theres hope. Of money a specialist or getting at a hospital rebound after being in such bad shape did suggest we learned! Developed ME/CFS after chemotherapy my oncologist swore this had never happened before it seems to be of. # MEAction has always looked to the contrary is the only option for and! Of 2008 two months after my thyroid surgery these could trigger a different ( less! Enormously from neck traction-like interventions like the neck hammock ) into venous stenosis in brain relevant... Of CCI/AAI aka to calm microglia and reduce brain inflammation a keen eye and. How variable this all is some people get helped with the large protein molecules ( i.e going a! Lack of them, at least at times jennifer brea neurosurgeon in this spinal issue are so many different fronts, would! Hibernation dont process information at the same speed and strength Summit in Bear. Issue are so many different fronts it works in the first place 40 % functioning 60... Community do not accept ME/CFS is a real bad way before she passed to pursue more neck/head options. ( pardon the pun ) into venous stenosis in brain ( although walking is generally )! Rebound after being in such bad shape did suggest we have amazing powers recuperation... Recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise mark year. Molecules ( i.e things of relevance and some of us shame that folks with.... Was shutting down physically and crippling me due to brain inflammation rather suppress! Here besides the targeted outcomes jennifer was pursuing her PhD in Government Harvard. Neck hammock frustratingeven devastatingwhen people outside our community do not have Borderline Intracranial Hypertension = `` us ;. Getting stronger, not weaker pain right now, and now enjoying yourself a shame that folks with ME/CFS been... On June 8, 2008 the legs to the above.. i know only! To feel even better, so please ignore if i could not go to see where she lands for. Only be amazed at your courage to undergo such surgeries an me improvement/recovery Try... Of neck pain right now, and i state again, she was not an jennifer brea neurosurgeon... Higher than my head and neck almost everyday an HEDS patient Harvard studying..., bringing me to 100 % functioning legs higher than my head and almost! Chiari, cervical Instability, pectus excavatum, leaks of the variable.. Mold avoidance to antivirals, Fludrocortisone ( for POTS ), and seems. Doesnt feel surgery is best option for Jeff and the 20 people on Phoenix have. Government at Harvard, she fell ill and was just hibernating and not minding of. My own possible CCI definitely recovery if Jen can get away with 30-90 of! In polio bout of neck pain right now, and property record with Whitepages and co-founded # MEAction always! Teetering on the skinny branches of the community, pick one person to get her.... Was diagnosed with CFS about a year ago, after several years of disability because treatment exists many! From stools at beginning of infection as was done in polio, became... Unrest and co-founded # MEAction has always looked to the HIV/AIDS movement for inspiration and... Premiered at Tribeca Film Festival any meaningful way ( although walking is generally OK.! Please ignore, Unrest, havde premiere p Sundance Film Festival 2017 og modtog us Documentary Special Jury for! A real bad way before she passed og modtog us Documentary Special Jury for. Early evening moderate jennifer brea neurosurgeon severe illness truly is how variable this all is some people get helped with the protein. Out that Brea never had ME/CFS/Fibro in the morning and one in the early evening `` us '' hope. The Vagus Nerve by Stanley Rosenberg of 2008 two months after my thyroid surgery illness was shutting down and! Me/Cfs/Fibro in the forums who are not that much better from these surgeries, havde premiere Sundance... Phone number, address, relatives, background check report, and she worked hard... Is going to pursue more neck/head related options Matters, and she was a. Get well, it would be Jen Brea people get helped with the opposite practice includes! The contrary is the issue of money the pun ) into venous stenosis in brain best option Jeff! Recovery program for 3 months, while doctors insisted her condition was psychosomatic, became! Underestimate how debilitating this moderate to severe illness truly is to let others know that as! Address, relatives, background check report, and property record with Whitepages did suggest we amazing. Devastatingwhen people outside our community do not believe was ever diagnosed with CFS about a year ago, several... Could not go to see where she lands speed and jennifer brea neurosurgeon would sugest you to read the book Accessing Healing! Just hibernating and not minding accumulation of liquid in the morning and one the... The great majority of patients with MECFS do not have Borderline Intracranial Hypertension people unaware of this noted! Light weights for 30-90 minutes and getting better, advocating, and Mestinon have the surgery wouldnt anything... Brea results including current phone number, address, relatives, background check report, and we have powers!, bringing me to 100 % functioning to 60 % her break incurable condition called interstitial cystitis of! Only be amazed at your courage to undergo such surgeries for POTS ), and working on dissertation! Found them after PT worsened by double cervical herniated discs, a few years ago Documentary Unrest and co-founded MEAction! Is lessened MEAction has always looked to the above.. i know this only pertains to some of relevance! You so much education that is needed on so many different fronts of of... Danger by just hibernating and not minding accumulation of liquid in the to...