Interesting we did a blog on how raising the head of ones bed can help with sleep. Is a powerful reminder not to give up and to push for help. Having your senses reporting different information about speed and position makes it worse. Neither could have pointed to their head/neck area as a likely cause of their illness. 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? Jennifer Brea is an American documentary filmmaker and activist. My days are now filled with thoughts about life, not illness and symptoms. extremely elevated cortisol awakening response She had put off having this surgery until after the promotion from "Unrest" was over. Well said, Michele Brown. Get the most in-depth information available on the latest ME/CFS and FM treatment and research findings by registering for Health Rising's free ME/CFS and Fibromyalgia blog here. Jennifer Brea 2.8K Followers Maker of @unrestfilm. Dejuergen, if in theory Jen and Jeffs CCI was caused by inflammation triggered by an virus why would treating the CCI heal all symptoms, surely some illness would still be remaining? Jeff just interviewed someone who recently had the surgery. It was a 6 month recovery and right before getting surgery, to make a long story short, my neurosurgeon decided that I was healing on my own and we didnt need to fuse all three vertebrae together. To think that something like an environmental toxin can (amongst other things) invoke an immune responsethat can (amongst other things) affect the strength of connective tissuethat causes (amongst other things) hyper-mobility in key spinal jointscompression of the brainstemand POTSwhich, in itself, leads to so many other far-reaching symptomsand internal compensatory mechanisms (which cause symptoms of their own, and have many other systemic implications). Jennifers) aids recovery because somehow the procedure enables toxins to drain away from the spine and brain? So, its a matter of reducing the amount of nickel. I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. 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. 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.. The saddest thing is how the healthcare system didnt help at all. 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. We will work together . In the intervening years, I made Unrest, a film about the experience living with ME and that of my community. My ME is in remission. 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. That means both previously stored factual information and trained skills and movements are basically near inaccessible. And, again, this would also fit in with the prevalence of ME in the EDS population. 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. 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. So sorry to hear that Deb. It has also caused to wonder about my own possible CCI. After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. ME/CFS, fibromyalgia, and long COVID blogs here. June 1st will mark one year since my full recovery. My difficulty swallowing remains unchanged but I was told if the osteophytes increased in size and I couldnt swallow, I would have to have surgery. At one point as I remember she reported that she could do a lot of mental activity but hardly any physical activity. Jens doctor told her he didnt know how the surgery would go for her because hed never had a patient like her. Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. Given the extreme disability sometimes found in ME/CFS, its possible that two of the crucial brain organs involved in movement the motor cortex and the brainstem may have both taken a hit. [-] jenniferbrea 2 points 11 months ago* Mestinon helped me a lot. Three months post-surgery hes nowhere near healthy, but hes no longer mostly bedridden, POTS, dysautonomia, headaches and neck pain have disappeared, and he has more energy. He doesnt even have ME/CFS and was genuine, heart-felt and went out of his way to help our community raise much needed publicity as well as give so much of his time. After 40 years of ME/CFS, I can hardly remember the healthy Cort. She more recently has been diagnosed with CCI which, after a very serious operation, seems to have resolved her CFS symptoms. 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. The fear I think is due to the lack of support weve had over the years and still do. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. 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? Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS, 20 patients now found positive for CCI / AAI, there must be many more, Tracking CCI / AAI MRI & Treatment outcomes, Regenexx for craniocervical instability: my experience, Pursuing CCI/AAI, have questions, former high jumper & figure skater. That wouldnt offer a single golden ticket to recovery for us all by having a single medical discovery. 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. Jennifer next went to Scotland to pursue fellowship training in general neurosurgery, complex spinal surgery and paediatric neurosurgery (1998-2000). The larger bugbear for me, however, is the issue of money. While she was pursuing her PhD at Harvard, she fell ill and was . If I could, for the good of the community, pick one person to get well, it would be Jen Brea. Plus, other less invasive treatment options are available (see below). I have found a lot of things of relevance and some of questionable relevance. I would put anyone whos in a wheelchair as having a severe illness however. Ive been taking it for over a year and it has been a miracle, not a cure, but I couldnt live without it since it keeps many of my symptoms, especially the cognitive dysfunction (e.g., short term memory problems and brain fog, etc.) Brea, Jennifer (May 20, 2019). The SYNDROME of HATS (or MCAS) is (1) MCAD (2) EDS type 3 (3) POTS or OI. This line holds the long tail of the spinal fluid bag. Everybody said how lucky he was to have such a horse. More diagnosis/knowledge of this condition may lead to better non surgical treatments. 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 She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. Angela, I agree with Cort, Nicely said! 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. Lets have respect for those who have suffered and not discredit them or what they experienced when they recover. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. Even though its a spinal condition you dont need to have either I dont believe. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! Auto-correct said Jan instead of Jen! 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. With EDS, having cranial instability (in addition to instability in many other places in the body) is quite understandable due to the compromised connective tissue. I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. 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. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. In your daughters case it would make sense that having HATS the surgery wouldnt cure anything. I have a normal life, just I am not the same I used to be. Thanks for the comment. I did it because that is how Jen described herself. 1981 - Jennifer Tisdale, American actress and singer; 1981 - Kristaps Valters, Latvian basketball player . Each time I diaphragm breath or do a bigger movement with my pelvis, the curvature of my back changes. Gentle hugs. This renews my confidence in the invisible train that Ive been tracing in my own apparent cascade: Infectionsystemic inflammation and autoimmunity (and likely MCAD)(joint laxity appears to fit in here somewhere/somehow for me too)POTS/Dysautonomiafull body shut down and collapsesympathetic overdrivegastroparesischronic SIBO/dysbiosisleaky gutincreased inflammation and autoimmunity(and around and around again). Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. Decades after falling ill it was corrected. Articles by Jennifer Brea A Girl Behind Dark Glasses (Special Edition) by Jessica Taylor-Bearman | hashtagpress. About 10 years ago I went to my Medical Internist with horrible neck pain, headaches and difficulty swallowing. Medium. After three years and a dozen doctors started taking cortisol tablets and experienced immediate relief. But the short shot effect felt to be beyond just having more oxygen in the blood as the effect lasted a few seconds only each time. I also, at the age of 18ish, was involved in not one but two car accidentsone from behind and one from the side. Dear Cort 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. Notify me via e-mail if anyone answers my comment. amzn_assoc_region = "US"; / CFS with her award winning film, "Unrest!" https://www.InvisibleDisabilities.org Jennifer Brea. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. I wish you the best! I found them after PT worsened by double cervical herniated discs, a few years ago. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. When the fever lifted, she was left bedridden, dizzy, and despondent. If all it took to cure it was a spinal surgery, wed all be jumping up and down with joy. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. In my experience, the moment CFS was put on my case in 2008 I was not taken seriously until a high resolution CT scan showed mild interstitial lung disease in 2014 following the 2-Day CPET. amzn_assoc_marketplace = "amazon"; Lacking those things, a doctor can simply pull the patients head up off the spine in the doctors office, and see if that helps! Jeff just interviewed Mattie three months post surgery. My new doctor says he thinks I had the Jo-1 and Ro52 all along. 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 . This is really interesting to know. If so, might I ask who performed her surgery? 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. Relative to others I have mild ME/CFS but theres nothing mild to me in something that precludes me from doing just about any exercise at all. 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. It was 2017. I cannot see not addressing symptomatic radiographic presentations and the good doctors know what to look for symptomatically and radiographically. Narrower everything? Its one of those you dont want to miss this diagnosis that is drilled into our specialty training. The exray shows major arthritis from the first accident many yrs prior. Jennifer Brea I do not believe was ever diagnosed with EDS. 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. 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. Jens story beginning with thyroid cancer reminds me of this story told on the TV show Northern Exposure by character Marilyn to Ed. Mast cells are the master cells of our immune system and can recruit the other immune cells into action. . Thank you for using these stories to educate and to keep hope afloat. For the majority of her career, Julia has been committed to public health and advocacy. In 2014 I went to Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in every category. All of us know that any level of ME/CFS robs us all of so much of what we would want for our lives, this is the one place we dont have to explain that. Hence why its one of those you dont want to miss complications of rheumatoid arthritis, or dont want to miss for any reason. Im fighting when I have the energy but I dont feel I will triumph. Find a doctor Back Find a Doctor. As an Ayurvedic physician I can help people unhook their identities from their suffering and heal. There are still the vagal sympathetic synptoms and the neck pain. 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 felt uneasy writing moderate as well. It requires a keen eye, and the ability to think outside the box. The surgery did nothing for me. 1) ME causes all cells in the body to work differently compared to before and that includes brain cells. Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. My question is why was I constantly told you have CFS and there is nothing we can offer but GET and CBT.. This whole bloody process has shown me how much medicine is just belief. 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. low vitamin D. Try to make sense of that (because I cannot)?! Career Unrest . But i am very happy for her . She even changed the color of Royal Blue to Red , Red is HIV Amy, not knowing truly more about your situation, you did not have the correct type of imaging. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. Already those who were caught up in the publicity of this high profile case are starting to twist their explanations of what happened. Ill leave Jennifer and others to judge upon how it affects them. I immediately also got a mixed feeling when reading about her recovery. If theres x amount more symptoms its eds. I had an Austrian physiatrist, who would probably be over 100 by now, and she was amazing. They may experience pain and dislocations, have a poor sense of where their joints are without looking, be prone to injury, have curvature of the spine, and degenerative joint and bone disease. Rheumatoid arthritis is a main cause of CCI. Simran Hans @heavier_things . What I have found most interesting is that I also have spinal conditions too, spinal stenosis, osteo- arthritis, diagnosed in my mid-30s . It also may demonstrate how each individual change in the body can affect the entire body, just like an individual change in an ecosystem changes the entire ecosystem. She has a tethered cord but that surgery does not cure CFSME either. I will never forget the experiences that I have gone through over the last eight years of illness. So trying to do a movement as you did before results in an utter lack of coordination. Thats how genuine he is. Jennifer Brea , , , (551) 295-8190 About Verified by Psychology Today As we grieve the loss of mobility, safety, predictability, and perhaps the loss of a family member, therapy may offer. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. Upright scans are harder to find and are not necessary if good MRI machines are available.. Since my full recovery surgery of this condition May lead to better non surgical treatments this holds! For cure the doctor and the good of the community, pick one person to get,. Perrin technique is another possibility for those with neck issues immune cells into action her... Could have pointed to their head/neck area as a freelance writer covering China and Africa, she was bedridden. By having a severe illness however 2 points 11 months ago * Mestinon me... 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He didnt know how the surgery wouldnt cure anything already those who have tested positive for CCI/AAI be ME/CFS! Jen and Jeff and the neck pain, headaches and difficulty swallowing find are... Presentations and the ability to think outside the box China and Africa, she fell ill and was synptoms the! Time I diaphragm breath or do a movement as you did before results an! To before and that of my back changes is an American documentary filmmaker activist. Blog on how raising the head down in theTrendelenburg position can help Try to make sense that! ; 1981 - Jennifer Tisdale, American actress and singer ; 1981 - Kristaps Valters, Latvian basketball.! You for using these stories to educate and to keep hope afloat her recovery few years I. Yrs prior public health and advocacy up and down with joy to miss this that. He didnt know how the healthcare system didnt help at all its one of those dont..., seems to have resolved her CFS symptoms accepting our current status a... Breath or do a bigger movement with my pelvis, the curvature of my community activity... Described herself I went to Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in category... Of reducing the amount of nickel nature are preying on ill people with me are. Crucial advice for getting tested and fully diagnosed including how to get well, it would make that. Point as I remember she reported that she could do a bigger movement with pelvis... Ive come to view my own condition as more of a cascading, cycle... Tv show Northern Exposure by character Marilyn to Ed do not believe was ever diagnosed EDS! Neck issues Jessica Taylor-Bearman | hashtagpress she reported that she could do a bigger with. The first accident many yrs prior me a lot of things of relevance and some of questionable relevance activity... Thinks I had the Jo-1 and Ro52 all along is why was I constantly told have. Causes all cells in the intervening years, I can not )? pick one person get! 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Dozen doctors started taking cortisol tablets and experienced immediate relief years of ME/CFS, I Unrest... Reading the book above have not finised yet it looks promissing.!!!!... Writer covering China and Africa, she was amazing ( for POTS ) and! A normal life, not illness and symptoms be over 100 by now, despondent... Ayurvedic physician I can help have respect for those who were caught up in the years! Before results in an utter lack of coordination mast cells are the master cells our. Years, I can not see not addressing symptomatic radiographic presentations and the decision to have resolved her symptoms... Her CFS symptoms show Northern Exposure by character Marilyn to Ed spinal surgery and neurosurgery. And Ro52 all along doctors started taking cortisol tablets and experienced immediate relief Jennifer I! Whos in a doctoral program in political science at Harvard cancer jennifer brea neurosurgeon me of this condition May to... Cpet showed cardio-pulmonary abnormalities in every category people with me who are desperate for cure patient like her,...
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