We educate, advocate, research & empower. No one fights fibromyalgia alone! Take action 501(c)(3) organization for the fibromyalgia community.

United States
Joined June 2016
Fibromyalgia National Health Organization retweeted
At the Harvard/MIT Martinos Center, Dr. Mario Murakami and the VanElzakker lab are using ultrahigh-resolution 7T fMRI to understand how changes to cerebrospinal fluid (CSF) flow in people with Craniocervical Instability can produce a phenotype similar to that seen in ME/CFS and other neuroimmune conditions. The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain. Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”
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Botched Altadena evacuations, dysfunction in Pacific Palisades: Long-awaited fire investigation identifies missteps latimes.com/environment/stor… In the Eaton fire, reports of an ember-storm seen by paramedics in west Altadena never reached incident commanders, the assessment found. Meanwhile, the L.A. County Fire Department — the agency at the helm of the incident — failed to formally organize evacuation operations within the command. Once reports of fire in west Altadena finally reached commanders, it took over an hour to order evacuations. ☹️
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Fibromyalgia National Health Organization retweeted
Funny story: This week I saw one publication and one presentation that "tried" to connect POTS with FND: neither sited our very important paper where 9 of us, all POTS experts, said that #POTS is not #FND! 🚫 This could only happen for one reason: the authors are not fair or balanced and only present their personal view while purposefully not citing our paper -- thus, misleading the audience! 📢 So here it is: a very important paper stating that POTS and other common autonomic disorders are NOT functional neurologic disorders!✌️ frontiersin.org/journals/neu…
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Fibromyalgia National Health Organization retweeted
We have a CHONKION! The #FatBearWeek crown goes to: 🐻 Bear 89 Backpack 👑 Heavy is the bear that wears the crown. Like really heavy.
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Fibromyalgia National Health Organization retweeted
Chronic pain patients learn pretty quickly that there’s no correct way to look sick. Cry? Too emotional. Stay calm? Can’t be that bad. Get dressed? You look fine. Stop taking care of yourself? You’ve given up. Laugh for five minutes? Thought you were in pain. Know your own medical history? Drug-seeking. Don’t know every detail? Unreliable historian. The standard isn’t impossible by accident. We’ve built a system where the patient can do everything “right” and still be treated like their credibility is the symptom that needs managing.
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Thank you to everyone who made two days of meetings happen. We always have great takeaways from these meetings, and the best part is that they hear about fibromyalgia! We look forward to the advocacy ahead with Veteran Voices For Fibromyalgia, The Fibromyalgia Pain Chronicles, @FibroHealthOrg and @nursefibro
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Fibromyalgia National Health Organization retweeted
Sharing for those here in the Bay: @ChronicleBioAI is looking for ME/CFS patients to enroll in their biobank study who are able to give a blood sample at their Menlo Park lab. They are currently looking at specific biomarkers and immune cells. connect.chroniclebio.com/sig… – at Menlo Park, CA
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Fibromyalgia National Health Organization retweeted
Great example how existing diagnostic criteria set by a society does not reflect real-world clinical practice. But there are other very important points in this division: 👩‍🔬 Science is a democracy! 🩺 Diagnostic criteria may diverge. 🤝 Achieving consensus among societies, clinicians on the ground and researchers is hard. ➖ There needs to be a fine line between underdiagnosis and overdiagnosis, but patients need to have healthcare access, whether they under- or over-diagnosed. 👍 While disagreements are viewed as a negative, it's actually a positive in science because it brings people with diverse opinions and experiences together and forces them to communicate and negotiate. 💲 If one society/organization sets the rules, it can backfire -- always look at special interests and who pays them. Unfunded means less bias. medscape.com/viewarticle/mas…
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Fibromyalgia National Health Organization retweeted
Meet American artist, Merlin The Happy Heathen. Merlin channels his love of color, nature, and artistry into wire bonsai trees. Learn how he uses art to cope with #fibromyalgia 🔗 myseveralworlds.com/2024/04/… #MySeveralWorlds #TeamFibro #SupportFibro #FibromyalgiaArtists #ArtTherapy
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This week, our org along w/ Veteran Voices For Fibromyalgia team members are meeting with representatives from the Senate Committee on Health, Education, Labor and Pensions. @GOPHELP & @HELPCmteDems For most conditions, advocacy is scattered across Washington. For fibromyalgia, almost every lever that shapes a patient's life converges in one room. This means NIH research priorities, FDA's treatment-approval pipeline, and CDC education. The problem we bring isn't only that fibromyalgia is underfunded, though it is, badly, relative to the disability it causes. It's that the funding that does exist is too often poorly targeted. "Small and misdirected" is a more honest and more actionable argument than "give us more." We're asking for fibromyalgia to be treated as the serious, costly, credible condition it is. Stay tuned for more updates from this week. #Fibromyalgia #FibromyalgiaAdvocacy #FibromyalgiaWarrior #FibromyalgiaAwareness
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Fibromyalgia National Health Organization retweeted
Let’s meet some #Fibromyalgia Community Leaders today at my event recap for @teamfibro's 1st annual #FibromyalgiaConference in Nov 2022. 🔗 buff.ly/3hHcNsy This post covers healthcare rights, community activities; patient perspectives, how to get into advocacy & more!
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Fibromyalgia National Health Organization retweeted
New fibromyalgia treatments have FDA authorization, but that doesn't mean insurance pays. A treatment you can't afford isn't really available. Medical innovation fulfills its purpose when the right treatment reaches the right patient. That’s the gap we finally have a chance to close. fibromyalgianational.org/fib… #Fibromyalgia
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Fibromyalgia National Health Organization retweeted
It would be good to have more data on this. If it’s true for a lot of people it tells you something about what PEM actually is. When you exert past a certain point the body shifts how it’s functioning, metabolic state, immune recruitment, whatever the mechanism is. Say that shift is the PEM trigger, and where it sits is set by your baseline. Then there’s two ways PEM could work. Option 1. Going into state 2 releases something, call it X. X kicks off a cascade with its own shelf life, e.g. 4 days. State 2 itself isn’t sticky, drop your exertion and you’re back in state 1. So what you’re feeling is X doing its thing, not the state you’re in. Your exertional function is back to baseline, you just feel terrible because a process got started. Resting doesn’t shorten it because the thing you’d be resting isn’t what’s driving the symptoms anymore. All rest does is stop you releasing X again. That’s the sunburn version. Option 2. PEM is state 2. You drift out of it rather than switch out, symptoms follow that drift, and how fast depends on how little you do. Your exertional function is actually changed for the whole crash and rest works directly. So basically: does exertion start a separate process, or is your exertional function itself different until PEM calms down.
A week and a half ago, I woke up in PEM, and decided to try my new strategy of doing nothing. For five straight days, 16 hours a day, I lay as still as possible with an eye mask on, briefly using my phone only once every 10 minutes. I managed to avoid the intolerable deep muscular leg pain that has crept into my PEM in recent episodes. However, I would not say that the duration of my PEM was significantly reduced. Also, this episode was more concussed/cognitive/microglial than normal, so perhaps I was not due for muscle pain anyway. My current suspicion is that my post exertional malaise is like a sunburn: the length of time to heal is preprogrammed, and the only thing that matters is not going back out into the sun and making it worse. Doing nothing is a good heuristic for not overexerting, but it is itself a form of torture through ennui. In future episodes, I will try to land somewhere in the middle between boredom and overexertion and see if anything changes.
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Fibromyalgia National Health Organization retweeted
How acute infections trigger chronic illnesses remains unclear, but many researchers think the field is closing in on explanations. “We certainly don’t have the answer,” says infectious-disease clinician Michael Peluso. “But we have a lot of leads.” go.nature.com/4i2g5E5
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Fibromyalgia National Health Organization retweeted
It's Pain Awareness Month and today kicks it off. Please head over to InternationalPain.org and see the tips, tools and resources available from the blog, to treatments, to disease specific to whole genome sequencing that can change your life. #PainAwarenessMonth
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Fibromyalgia National Health Organization retweeted
🚨 I am excited to share the very first Delphi consensus paper on #POTS and #dysautonomia! I am honored to serve as a co-Chair on this clinician-led, Multidisciplinary International POTS and Dysautonomia Expert Panel! We achieved unanimous consensus on 24 of 31 statements and very strong consensus on the remaining 7 statements. The goal of this initiative was to improve clinical care of patients with POTS and dysautonomia and to provide clinician education. ‼️Key points: ✔️POTS represents a subset of patients with dysautonomia. ✔️Patients who do not fulfill the diagnostic criteria for POTS may have dysautonomia that is not POTS (non-POTS dysautonomia). ✔️Both POTS and dysautonomia need to be diagnosed and treated correctly - not with psychotherapy or antidepressants. ✔️Patients with POTS and patients with non-POTS dysautonomia need to have access to care, work and school accommodations and disability benefits if necessary. ✔️Therapeutic trials, multidisciplinary patient care and physician education/training are needed to advance the field and improve the lives of patients with POTS and patients with non-POTS dysautonomia. Read full (pre-proof) paper here: 👇 amjmed.com/article/S0002-934…
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