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.

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

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…

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…

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

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

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!

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

The Metabolic Switch That Turns Your Brain Against Itself: piped.video/2Az4a6CKI_4?si=QnYN…

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.

Fibromyalgia, It Hurts So Bad…

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

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

🚨 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…

Tips for Air Travel with #MECFS #longCOVID #fibro - I don't travel by plane much these days, but sometimes it's unavoidable. A long day (or more!) in airports & on planes is exhausting, but I've learned what helps over the years. My tips: livewithcfs.blogspot.com/201…

All you gotta do is smile that smile ✨

Join us for our MetaECHO Community Call to learn how ECHO partners communicate the impact of their work. ECHO partners will present their unique approaches to storytelling and answer questions from audience. Register to join us: iecho.org/public/program/PRG…

🔴 What if EBV is not simply “reactivating” after COVID? What if, in some people, it is changing the behaviour of the B cells it inhabits? A new 2026 preprint reports something fascinating: EBV+ B cells in people with COVID show an autoimmune-like, metabolically reprogrammed state. And this connects with a much larger story involving: EBV
B cells
HLA
failed immune control
persistent antigen
and autoimmunity. Let’s go through it. (1/64) 🧵

Reverse gaslighting where I assure my doctor that his medical degree is probably all in his head

A pediatrician spent four years being told her pain was fibromyalgia and depression. What ended it was a stethoscope on her abdomen and a bruit nobody had listened for. Her descending aorta, normally about 20 millimeters across, measured 4. Victoria Rundus, a board-certified pediatrician in middle Tennessee, started having symptoms in late 2021. Back pain and neck stiffness first, then malaise, tachycardia, dizziness, a burning sensation on her back on standing that she has never gotten an explanation for, and colicky abdominal pain. Orthopedist, rheumatologist, several emergency departments, several venues, one label. She is precise about what she is and is not saying. In her words, fibromyalgia is a real condition and those patients deserve good medical care. The problem is what happens after the label lands. In her words it "sometimes closes the door to everything else," and the patient shuts it too, because new symptoms start getting attributed to the existing diagnosis and never make it into the room. On the second label she is just as careful. She says she was not clinically depressed, and then: "I don't blame patients who are. When you're dealing with chronic pain and you're miserable and you have limited mobility, how could you not have some depression with it as well?" Two things made her a poor fit for the pattern-match twice over. She learned Takayasu's arteritis in medical school as a disease of Asian women in their 20s and 30s, and she says she did not fit either demographic. And she already carried ankylosing spondylitis, which limited how far she could walk, so the claudication that is a common presenting feature was invisible until after the diagnosis, when she started walking more and felt it. The clinical detail worth saving: Labs are not typically helpful. Her CRP and sed rate were normal at diagnosis. There is no genetic test she is aware of. It is generally found on CT, CT angiogram or PET. Presentations vary widely. She describes a friend whose first symptom was an ocular stroke. She also reports something from the patient support groups she is part of, where she usually does not mention she is a physician: members who were diagnosed with fibromyalgia, then years later ended up in kidney failure or had a stroke, and got the Takayasu's diagnosis only after that. On the physical exam, she is deliberately hedged: "I'm not putting all physicians in this circle." But she wonders how long the bruit was there with nobody listening. The line she keeps coming back to is not an indictment. "It's not that there are bad physicians out there. We are all victims of this diagnostic bias. I know I am as well." Then she turns it on herself, in her own words: "I even think that I personally have a bias toward my diagnostic bias." A parent in her practice who carries three autoimmune illnesses herself once told her that autoimmune illnesses are like Pokémon, you have to catch them all. Having one does not exclude the next one. Listen to the full conversation on The Podcast by KevinMD. Link in the replies. For the clinicians here: what is a finding you have caught on physical exam that the labs and the chart were both missing? #DiagnosticBias #ThePodcastbyKevinMD