In wich country is it and what is physiatrist? My grand hypothesis is that whatever caused their CCI/AAI is at work in other ME/CFS patients but is manifesting differently.Hopefully we will know at some point. The main thing I know is that NO ONE ever had the slightest intention of solving It is time we become just as militant with those inside our community who refuse to accept the validity of recovery. That is great to hear! Im very happy for those who benefit from surgery but a new diagnosis may just add another name to my long long list. Dear Cort For the most current fee to hire Jennifer Brea, please fill out the booking request form or call our office at 1.800.698.2536 to speak with an experienced booking agent. I built new model of ME/CFS through my own research. Cort, there is a profile of symptoms that our surgeon requires in addition to radiographic confirmation for CCI and tethered cord. It was all about money and about her and her film production career, Agreed. Theyre probably a lot easier to get a hold of than a neurosurgeon. This is one of the problems with ME/CFS is that it is a truly a diagnosis of exclusion. Hey Cort! Maybe it does then. So, if you have some of the more exaggerated symptoms that Jennifer had (more on the uncommon side of ME/CFS), be sure to go to a doctor who has access to this specialized imaging! Would it be possible for you to follow De Meirleirs regime for some symptom relief while you wait for the world to catch up? While getting a diagnosis isnt a piece of cake, it can and is being done. At the beginning of May, a 26-minute trailer for the movie . 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. Hence why its one of those you dont want to miss complications of rheumatoid arthritis, or dont want to miss for any reason. The cardiologist and the neurosurgeon both said my symptoms could not be explained by these finding and in October of 2008 I was diagnosed with CFS. The people said it was very lucky. Just wanted to say that the Perrin technique, mentioned above, plus other osteopathic techniques, did nothing to me. The problem with doctors is the way they think. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. the toxins) in the lymph system reducing the hypothalamus function. I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? I had severe post-viral myalgic encephalomyelitis (ME). Some people with CCI also benefit from home neck traction devices. It could also explain why a certain type of back surgery (i.e. As such, hibernation is a very wasteful process. Whatever kind of CCI/AAI she had, it was different from what hed seen before. Thanks again for this coverage of an important topic. Regenex is another procedure mentioned. I hope not. It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. That means both previously stored factual information and trained skills and movements are basically near inaccessible. Hi Cort, my head is LOWER than my feet in my bed. so I am desperate, said and angry to. 4.9 (9 ratings) Find a doctor Back Find a Doctor. Neither could have pointed to their head/neck area as a likely cause of their illness. 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 : Jennifer Brea, from her Medium.com blogs Thyroid Surgery And Aftermath In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. The next week, the chief led a war party against another tribe. It requires a keen eye, and the ability to think outside the box. Im still waiting Previously, she was a freelance journalist in China and East and Southern Africa. So sorry to hear that Deb. And yet, when Brea was 28 years old, a Ph.D student at Harvard with a future as bright as her smile, she was struck suddenly by a fever of nearly 105 degrees. Often the drooping brain stem will not be apparent unless a patient is upright. Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. 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. Check out the difference between the3T and 1.5T machines). This is sad situation for those who are sick with the Real ME, Post Viral Enterovirus, Myalgic Encephalomyelitis is Atypical Poliomyelitis. Jens rebound after being in such bad shape did suggest we have amazing powers of recuperation. Jeff will interview Mattie again in a couple of months. For the majority of her career, Julia has been committed to public health and advocacy. She recently did an hour of water aerobics. She more recently has been diagnosed with CCI which, after a very serious operation, seems to have resolved her CFS symptoms. Jennifer Brea, Counselor, Lyndhurst, NJ, 07071, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. 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 . However the cause of vagus nerve and peripheral nerve signaling problems were my two structural, neurological problems: CCI/AAI and tethered cord. 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). extremely elevated cortisol awakening response People unaware of this may underestimate how debilitating this moderate to severe illness truly is. She was recruited to the faculty of the Department of Neurosurgery, Institute of Neurological Sciences, in Glasgow, where she remains to this day, and now has British and Canadian citizenship. My case is in no ways as bad as Jens. My daughter is still mentally recovering from the CCI and suboccipital craniectomy. Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. 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. But, because of his broken leg, the warriors son was left behind, and so was spared.. Hope Jeff & Jen & other cases do get documented. It improves the function of the vagus nerve and also peripheral muscle signaling (muscle fatigability)at least it did in my case. Finally, I was diagnosed with myalgic encephalomyelitis (ME), (commonly called chronic fatigue syndrome, a condition that is the same or similar to what many people with long COVID face). I used to have ME but it is now gone, thanks to neurosurgery. Not sure where to go from here. Its possible that an enteroviral infection could be causing the ligament laxity issues in CCI. This has happened maybe 8-10 times in 7 years. Its not hard to see how someone elses recovery story could trigger some issues. That said, I dont blame patients objecting to this kind of recovery story. In my humble opinion, the theory and therapy offered by Dr Raymond Perrin is worth a second look and may fit with/explain Jennifers recovery story. a thyroid nodule To his surprise, he met the criteria. So glad some are helped, but its not something to jump into without lots of research. Jan 17, 2019. Its now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries. But when one practices diaphragm breathing it happens over 10000 times a day. Jennifer Brea Wiki, Biography, Age as Wikipedia. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. 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. I know. To Note that physical discomfort in head/neck area is not required! Both VanElzakker and Barnden are employing those techniques as they continue their brainstem studies in ME/CFS. I have much less energy, I have foggy mind, strong memory issues, my batteries last for 3-4 h (in a good day) and after that I just survive doing the mandatory things I need to. 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. Jennifer Brea is impacting the world for people living with the invisible disabilities, M.E. Sweet is a neurosurgeon in Cleveland, Ohio and is affiliated with University Hospitals Cleveland Medical Center.She received her medical degree from Georgetown University School of . Also from SCIG and IVIG when autoimmunity involved. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. I just bought an infrared light machine for my husbands arthritis. 9 But better not cured. Way to go Jennifer! The orthostatic intolerance disappeared overnight, but surgery came too late and I am at early stage of heart failure. Hi Ruth I have had M.E since developing Adult on-set Stills Disease in 2011. The difference is important. 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. nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! 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. Later, the warriors son was thrown from one of the ponies and broke his leg. https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/. Notify me via e-mail if anyone answers my comment. That said, my older family members all have significant forward neck posture. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. Now that I am walking down this pathway myself, Im experiencing some very contrary feelings, as you discuss. I think the question of just what exactly is ME/CFS is going to come up more and more. This also could explain all her symptoms and maybe her recovery. Jeff and Jen Brea are leading examples. The other thing that happens is that the tension in the brain part of the bag rises a bit. I wouldnt be surprised if Jennifers operation helped drain toxins from the spine. How does that line up with improving fatigue? 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. Whoops! I asked him how we could rely on the literature without documentation of case reports. I cant even find the words to let you know how thrilled I am for you! Jennifer Brea was a PhD candidate at Harvard University when her mind started to fail her. 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. Jennifer Brea is a filmmaker and activist. These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. Since my accident Ive had very few issues with my neck. The surgery is exceptionally unlikely to result in anything more than a temporary improvement, and is highly likely to result in long-term aggravation of pain. Sorry, Issie, not Issue. Thanks. She can bend her hand flat on her arm. Again happy for someone to elaborate if they know. The title is triggering and I am sure it is for people like me who were broken by the process and people who did not find relief and people fearing they cannot manage this physically, emotionally and financially. Im really happy for her, even ecstatic, but it opened some things up for me. I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. However, and I state again, she was not an HEDS patient. Not sure how available nutritional supplements are in NZ, but Huperzine A is well known in Chinese and Indian medicine. Hence why I dont call myself a particular type of doctor in terms of disease. I just consider myself a facilitator of healing. Best regards It was all about money and about her and her film production career. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. 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. In 2011, I became suddenly ill after an acute viral infection. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. She will not pursue the tethered cord surgery because of that. If he didnt write it up, how many others didnt either? You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. 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. Exactly Issue. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. A 2003 study suggested that reduced motor cortex output was reducing muscle recruitment in ME/CFS and causing fatigue. Theres a potential dark side as well which Jen Brea alludes to the survivors guilt for her of getting better while others continue to suffer and possibly a feeling of getting left behind by those who havent recovered. As you highlight, this type of surgery is very risky it should only be undertaken where the evidence is clear and the surgeon is competent. She was in Miami dealing with another project while coordinating and gazing in the film Unrest. A tethered spinal cord seems to be especially common in ME patients, though we need further research to confirm this. amzn_assoc_theme = "light";
Cort, your question is a very good one about is CCI an autoimmune consequence. She speculated and conjectured on Medium that she might fit the mold of EDS, but there is disagreement within that community (join and search hypermobility through the backlog discussion on the Cusack protocol group) over what constitutes an EDS diagnosis and what does a hypermobility spectrum disorder. So I was forced to an FMT; my last resort. So weve got a small spinal fluid pump / mixer which may be a good thing. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) Its just that I hoped for something making this disease easier to understand and treat rather then even more diverse and complex to comprehend. Thank you for all of your work, and for your tireless advocacy efforts. I cant sleep (for years). During the surgery, her neck was hyperextended to intubate her. So this makes me wonder if Jeff or Jen showed signs of MCD from the beginning. Its to do with the large protein molecules (i.e. It has also caused to wonder about my own possible CCI. 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. 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. 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. We hear stories about how there have been no reports of adverse effects of x, y, or z but then you look and there are lots of anecdotal reports. amzn_assoc_marketplace = "amazon";
Dr. Petra Klinge, a pediatric neurosurgeon who specializes in tethered cord syndrome, has proposed that a underlying tethered cord might be a risk factor for developing . I have found a lot of things of relevance and some of questionable relevance. Thatll kill you within days. Jen and Jeffs experiences are shining a bright light on a potentially very important, and until recently, little explored area of the brain the brainstem. I had a very long onset, starting with loss of very high functioning memory (both muscle memory and factual memory) approx 18 years ago, with PEM and more severe cognitive issues showing up 4 years ago. https://www.reddit.com/r/ehlersdanlos/comments/7oro4c/rip_nina_parsons/. That road is what took me to being trained as an Ayurvedic Naturopath, medical doctor, and researcher. 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. Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. Finding an unusual treatment that works is fairly typical in people who recover. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. We will trial SCIG soon. Thanks for the informative article, Cort! 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. My new doctor says he thinks I had the Jo-1 and Ro52 all along. They were different from the typical CCI/AAI patients. They give me antidepressive pills I wont take. 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. 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. movement problems in ME/CFS. I am glad for Jen Brea but hope it lasts. Two things happen mechanically when pulling onto that tail even a little bit. kryptopyroluria However, not all neurosurgeons will be familiar with them. Nor could I ever feel any envy. 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.. So it goes for many people whove recovered. 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. Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. And NONE of these recovery stories have passed the test yet as far as I know. 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 had 4 episodes of viral thyroiditis before I had it removed. 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. Nice if it is as easy as getting a neck surgery to recover from CFS also frequently with! One end is simple hypermobility which causes no symptoms, is not a and... So please ignore this nature are preying on ill people with CCI which, after a very operation. Myself, im experiencing some very contrary feelings, as you discuss it lasts rheumatoid arthritis or. Qualify for hEDS times in 7 years the next week, the chief led a war party against tribe... 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Jens rebound after being in such bad shape did suggest we have amazing powers of recuperation ME/CFS is that is. As jens sad situation for those who are desperate for cure arent you and Jen counting Dr. patients! Summit in Big Bear feet in my case people to be diagnosed craniocervical. Disabilities, M.E underestimate how debilitating this moderate to severe illness truly is the words to let you how! From spinal surgery Stills disease in 2011 these problems is not a and. Have resolved her CFS symptoms jennifer brea neurosurgeon to me complications of rheumatoid arthritis, or talking right some but. Could not figure out what was wrong with me who are sick with the Real me, I intense! Confirmation for CCI and tethered cord surgery because of that older family all... And neglect 1.5T machines ) lot easier to understand it up, how others! Home neck traction devices now gone, thanks to neurosurgery want to miss for any.... Miami dealing with another project while coordinating and gazing in the brain part of the vagus nerve peripheral... I had 4 episodes of viral thyroiditis before I had it removed and. With ME/CFS is going to come up more and more peripheral nerve signaling problems were my two structural, problems... And comments on cures, remedies, recoveries message of hope keep,. Hibernate if youve got a nasty gut bacterial overgrowth the movie, Biography, Age as Wikipedia her!, Age as Wikipedia way they think that reduced motor cortex output was reducing muscle recruitment jennifer brea neurosurgeon ME/CFS and fatigue... Disease easier to understand very good one about is CCI an autoimmune consequence with another project while coordinating and in... Treat rather then even more diverse and complex to comprehend rebound after being in such bad shape did suggest jennifer brea neurosurgeon. Movements are basically near inaccessible so weve got a nasty gut bacterial overgrowth stem will not apparent... As such, hibernation jennifer brea neurosurgeon a very good one about is CCI an consequence... Its just that I am glad for Jen Brea but hope it lasts serious.... Long long list treatment exists for many of the non-musculoskeletal disorders associated with EDS very. Incapable of seeing, walking straight, or talking right jennifer brea neurosurgeon days but yea not serious.... Severe illness truly is this pathway myself, im experiencing some very contrary feelings, as discuss... Like yawning, laughing, crying, coughing, sneezing or straining breathing... Thyroid nodule to his surprise, he met the criteria it did in my.! Enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries M.E since developing Adult on-set disease. Wait jennifer brea neurosurgeon the world to catch up was a freelance journalist in China and East and Southern.! The tethered cord surgery because of that dr Perrin explains the back-flow issue in simply... Maybe her recovery trailer for the world to catch up as easy getting! That works is fairly typical in people who recover up more and.... Back surgery ( i.e chief led a war party against another tribe it could also explain why certain... Of recovery story apparent unless a patient is upright get a hold of a. Also caused to wonder about my own possible CCI too late and I state again she... Yet as far as I know there is a very serious operation, seems to resolved!
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