u/WandaTheWandie

This phase of obsession lasted about 2.5 years. It was typified by taking most findings at face value and building elaborate theories upon these findings.

But slowly, the cracks started to show.

I interacted with patients more scientifically literate than myself, who told me about all the shortcomings in the papers I was taking at face value. I saw findings fail to replicate. Or they implied a certain treatment would work which we already know it doesn’t because many patients have tried it. Or the findings weren’t specific to ME/CFS at all. Or they haven’t been corrected for multiple testing. And I saw Very Serious Scientists claim they had found a biomarker (e.g. cortisol) even though the existing literature already showed that it was at normal levels in other samples! (Let alone methodological issues like timing of sampling etc.)

1. A randomized crossover trial found that both ivabradine and the beta-blocker propranolol were effective at lowering heart rate in patients with POTS.

There wasn't a clear effect, though, on symptoms or functional capacity.

2. The study was a crossover trial, meaning all participants got the 3 treatments: ivabradine (5 mg), propranolol (4 x 10 mg), or placebo in consecutive order with a 7-day washout period in between.

Each treatment period lasted 28 days.

3. Ivabradine got slightly better results, so let's zoom in on its comparison to the placebo. The graph below shows a very notable effect on heart rate during a 10-minute head-up tilt test.

The mean heart rate was also 15 bpm lower in 24-hour Holter monitor recordings.

4. Ivabradine also increased systolic blood pressure (bit of a surprise), but there was no obvious effect on symptoms.

The authors used questionnaires such as the RAND-36, COMPASS-31, and the Vanderbilt Orthostatic Symptom Score (VOSS), with no clear overall effect on either.

5. Some questionnaires did hint at lower orthostatic symptoms for ivabradine, particularly on the orthostatic grading scale (but it seems that the study didn't correct for multiple comparisons).

A reduction in heart rate but not symptoms was also reported by the RECOVER trial.

6. These results could mean that the high heart rate in POTS isn't strongly connected to most of the symptoms and disability that patients experience. We wrote about this hypothesis here, but acknowledge that more data is needed to clarify this issue:

https://mecfsscience.org/the-problems-with-pots/

7. There are major limitations to this study. The sample size was small (only 28 female POTS patients), and there was a high drop-out rate of around 32% (the trial started with 37 participants).

The authors didn't use an intention-to-treat analysis and ignored the dropouts.

The lack of significant differences for symptoms might have been due to the low sample size.

The paper does mention that patients preferred ivabradine, but it looks like this mostly came from a qualitative interview with a subgroup (n = 11/37) of participants.

9. Link to the study:

Uppal et al. A Randomized Crossover Trial of Ivabradine, Propranolol, and Placebo in Postural Orthostatic Tachycardia Syndrome.

https://www.jacc.org/doi/10.1016/j.jacadv.2026.102795

From https://www.facebook.com/permalink.php?story_fbid=pfbid02B6hTtjoM5MbdTTmqxFnsgpQN9QFHJYfYBZKmKbVKiW2dBPSSfbsn8q5Ffmmg6yRzl&id=100063821632681

A new Federal Register notice suggests the government is moving to formally re-establish the CDC’s vaccine advisory panel after Judge Murphy’s ruling paralysed the committee.

This video features independent researchers Troy Roach and Dr. Thomas Bunker discussing methods to improve clinical trial design for Long COVID and ME/CFS. They emphasize the importance of patient-reported outcomes, suggest using crossover trial designs to maximize data from small cohorts (33:30-34:50), and highlight the need for low-burden symptom assessment tools, such as Dr. Bunker's 'Long COVID 40' survey (37:19-42:25). The conversation also covers the challenges of accounting for environmental 'noise'—such as flare-ups and external stressors—and explores potential future research into biomedical markers linked to autophagy and inflammation (26:23-30:20).

“I said I didn’t want to resign,” Tracy Beth Hoeg told MD Reports in an exclusive interview. “I said I’m not signing a letter of resignation if it’s not my choice.”

Høeg says she first learned about rumours of her departure through media reports before being told by FDA officials to resign or be terminated.

Just days after the resignation of former FDA Commissioner Marty Makary, one of his closest allies says she was summoned to her office and told to resign or be fired.

Dr Tracy Beth Høeg — the physician-scientist who became one of the most visible figures in the FDA’s post-Covid reform movement — says she first learned about her apparent departure through media reports.

At the time, she dismissed the reports as ‘rumours’ because nobody inside the agency had told her anything.

Then, hours later, two FDA officials arrived at her office and told her she could either resign or be terminated.

Høeg refused to resign.

They're looking for injured kids.

We, the undersigned, call on Congress to repeal the National Childhood Vaccine Injury Act of 1986, which grants vaccine manufacturers broad immunity from civil liability, even in cases of negligence or serious injury.

No product that is truly safe should require blanket legal immunity. Shielding manufacturers from accountability removes a fundamental incentive for rigorous safety testing and denies injured individuals their basic right to seek justice through the courts.

Americans deserve the same legal protections for vaccines that apply to other medical products. Restoring civil liability will strengthen public trust, improve safety standards, and reaffirm the principle that no corporation is above the law.

We urge Congress to act now to repeal this immunity and to restore transparency, accountability, and equal justice under the law.

Luis Nacul presented preliminary randomized placebo-controlled trial data on low-dose naltrexone (#LDN) in post-COVID ME/CFS-type illness. Overall fatigue scores changed little vs placebo, but subgroup signals may warrant further study. Objective outcomes remain crucial.

Methods: 

In this study, we conducted a plasma proteomic analysis of digested microclot deposits isolated from platelet-poor plasma samples of 14 individuals with PV/PIS compared to 16 healthy controls, using liquid-chromatography-mass spectrometry.

Results: 

We identified significant alterations in coagulation factors, acute phase proteins, and immune response modulators in the PV/PIS group compared to controls. Notably, elevated levels of serum amyloid A1 and A2, attractin, and coagulation factors X and XI were observed, alongside downregulation of immune-regulatory proteins. These findings suggest that PV/PIS is characterised by persistent immune dysregulation and coagulopathy.

Conclusions: 

This proteomic signature was found to only partially overlap with that previously reported in a proteomics analysis on Long COVID samples, collected prior to vaccination availability. Our results highlight the complex interplay between immune activation, endothelial dysfunction, and coagulation pathologies in PV/PIS, with distinct differences detected between these systems in Long COVID and PV/PIS, paving the way for more targeted protein research in these conditions.

TL; DR:

I’ve recovered from bedbound in the dark at my worst to conservatively 65% function, rounding the corner to 70% shortly. 

The major pieces of my recovery:

• Reducing allostatic load 
• Getting the right diagnoses and starting appropriate treatments 
• An incredibly supportive partner 
• A supportive workplace and remote work
• Financial privilege
• Taking control of my own recovery 
• Getting off of doomer subreddits and forums
• A refusal to stop trying and believing that improvement was possible even if remission wasn’t (I now believe remission is possible and that I’ll get there)
• Recovery stories
• Limbic retraining/nervous system work

——————

The (very) long version:

Diagnoses:

• Long Covid
• Migraine
• ME/CFS (yes, including PEM)
• MCAS
• POTS
• Fibromyalgia*
• Binocular vision dysfunction
• Graves Disease

*I was diagnosed during a horrible MCAS and ME/CFS flare. I don’t think I actually have fibro, but that the pain caused by MCAS and ME/CFS confounded diagnosis 

Timeline 

• 2008
  • Mono followed by several months of post-viral fatigue

   

• 2017/2018
  • The flu, followed by 6+ months of (diagnosed) post-viral fatigue
  • In retrospect, I think this is when I developed ME/CFS that resolved to very mild after about 8 months of stopping all exercise. I would get PEM a few times a year, usually after a big bike ride
• 2020
  • Covid infection
  • A couple months later, diagnosed with Grave’s disease out of the blue; resolved with medication

   

• 2021
  • Migraines increasing in frequency and severity but manageable

   

• 2022
  • Had second booster, this time Moderna after only having Pfizer
  • Sick in bed for a few days 
  • Migraines worsening to about half the days of the month
  • Diagnosed with migraine and started on preventative and acute treatments 
  • Migraine severity and frequency continued to worsen
  • Spend a month on medical leave (I’m not better at the end, I just ran out of sick time)
• 2023
  • Health gets significantly worse
  • Most of the summer is spent bedbound, in a dark room, unable to tolerate sound or screens 
  • Chronic daily migraine
  • Start Ajovy, severity reduces but frequency not touched
• 2024
  • Tentatively diagnosed with POTS and start treatment
  • Switch to Qulipta, migraines reduce by about half 
  • Tentatively diagnosed with MCAS and start treatment 
  • Referred to long covid clinic, where I’m diagnosed with long Covid, POTS, MCAS, ME/CFS, fibromyalgia 
  • Have a horrible flare from about Dec 2024-April 2025
  • Stabilize post-flare at about 35% function
    • Have stopped doing almost all chores, cooking is the easiest possible (reheating, basically)
    • Ordering delivery and ready-made meals 
    • Go multiple months without leaving the house

     

  • Migraines start worsening, going from about 15 days a month back to daily and now with eye pain 
  • Diagnosed with binocular vision dysfunction and get prism glasses; migraines go back to baseline of about 15 per month, eye pain resolves 
  • I start exploring nervous system work and see little progress
• Fall 2025
  • Overnight improvement to about 50%
    • I find the nervous system work that *clicks* for me
    • I use this new exercise (paired with a deep understanding of the neuroscience) to stop a post-shower POTS flare in its tracks, then get an 8/10 migraine to a 0 in minutes, a few days later 
    • Over the next few months my migraines go from 2-3 a week to 1-2 a month (that menstrual migraine just won’t quit), my function and capacity keep improving, I have one mild PEM event that resolved in a day
• 2026
  • After 6 years, I get Covid again (getting a blood test while masked. Ugh!)
  • I double down on my nervous system work while sick, including choosing to believe in the best possible outcome, and come out of Covid with higher function than I went in
  • I stop monitoring myself so much—take off the smart watch, stop logging symptoms 
  • I make consistent, steady progress

   

• Now:
  • I just came back from my first trip in years 
  • On the first day of the trip, we went on two birding outings, I prepared our meals, AND I had my first bath in years
    • At various points over the years, any one of those was unthinkable. As recently as a month ago, all of those together was unthinkable
    • I suffer no ill effects

     

  • I’m able to take on most of my old chores, I cook proper meals most days after work, I’m starting to take (short!) walks outside, and I just baked banana bread (I gave up baking for years)
  • At this point I’d say I’m at about 65% heading to 70% of my old functioning

Things That Didn’t Help

• NAC
• NMN
• Heal Your Headache Diet
• Quercetin supplements (with a caveat—see things that helped)
• Going off caffeine
• H1

Things That Made Me Worse 

• Low-dose Abilify (multiple month flare)
• Amytriptaline (made me a zombie)
• Red light therapy (caused PEM)
• CHOP protocol and physiotherapy for POTS (both PEMed me, but I didn’t know I had ME/CFS yet)

Things That Helped Somewhat

• Propranolol (both migraine and POTS)
• Green light therapy (for migraines)
• Sleeping on an incline 
• H2
• Ice hats
• LDN (I’ve been on this for years, predating long Covid, but I assume it helps to some extent)

Things That Helped A Lot 

• Compression, electrolytes, etc.
• GABA and glutathione supplementation
• Sunlight (carefully titrate)
• Focusing on improving sleep, including circadian rhythm through light therapy
• Lymphatic massage of face and scalp before bed and in the morning
• Ketotifen
• Algonot’s Fibroprotek (a high-quality quercetin and luteolin supplement)
• Qulipta
• Ivabradine
• Lactoferrin (improved sleep significantly and made it no longer physically hurt to wake up in the morning)
• Pacing 
• Migraine glasses (specifically Avulux)

Keys to My Recovery

• Reducing allostatic load 
  • I really firmly believe the majority of people cannot recover from nervous system work alone. If you are in a constant MCAS flare, have uncontrolled POTS, are overwhelmed with stress, and are routinely in PEM, there is such an immense allostatic load that nervous system work can’t overcome it
  • Basically everything that follows, other than the nervous system work itself, was about reducing the allostatic load, which I believe opened up the space for limbic retraining to work once I found the right tools

   

• Getting the right diagnoses and starting appropriate treatments 
  • Reducing allostatic load, as above
  • Understanding the connection between dysautonomia and blood glucose regulation was really helpful—Shout out to the Long Covid Dietician/Lily Sprechler
• An incredibly supportive partner
  • He believed me from the very start and never doubted me 
  • He started to recognize patterns and could tell me when I needed to pace better, when a migraine was coming, etc. often before I could 
  • He took on the lion’s share of the domestic work so I could rest and pace 
  • He radically reoriented his life based on my needs and limits
• A supportive workplace and remote work
  • I’m very lucky to have a very supportive boss and colleagues
  • The ability to work fully remotely with medical accommodations in place, including often from bed lying in the dark, plus generous sick time allowances, are the only things that kept me employed

   

• Financial privilege
  • I am lucky to make a very good salary. Even over a couple years of being the only one working (which did NOT help with stress), I’m able to live in a safe home, pay for supplements and lifestyle things, and not worry about paying the bills. I know this is not the case for so, so many

   

• Taking control of my own recovery 
  • I work in medicine (non-clinically) and have the clinical knowledge and research skills to be able to read, understand, digest and synthesize research and the credentials and language to be taken seriously by doctors
  • Every single diagnosis other than ME/CFS came from me researching, assessing the diagnostic criteria, and bringing it to my doctors 
  • And every successful treatment came from me refusing to take subpar results as “good enough” and researching other treatments to bring to my care team
• Getting off of doomer subreddits and forums
  • The ones that claim only 5% of us will get better (that is not backed up by science, it’s way higher), the ones that tell people to accept they will forever have the quality of life of end-stage cancer patients, the ones who claim those who recovered are either lying or never really had ME/CFS in the first place 
  • They made me depressed and hopeless and stopped me from trying things that have turned out to be life changing 
  • Similarly, the book How to Be Sick caused a two-month flare because I was terrified that this was the rest of my life, which was the message I was getting from very well-meaning but (I think) misinformed and hopeless people
  • (I’m aware this may be contentious and derisively quoted in said forums. I understand)
• A refusal to stop trying, and believing improvement was possible even if remission wasn’t (I now believe remission is possible and that I’ll get there)
  • I just couldn’t accept that this was what life was going to be: constant suffering, incredibly low quality of life, losing more and more things that give life meaning 
  • Whether through scientific advancements or MacGuyvering my own treatment, I had faith that I could improve. Maybe not go into remission, but I could suffer less. I took every tiny win as evidence that I could, in fact, improve
• Recovery stories 
  • Even in the depths of my hopelessness and resignation, I had this little voice that said “okay, but some small number of people DO get better”
  • And then I started thinking, “These are the ONLY people claiming to recover. I can either stay hopeless and do nothing or I can get on the only train going in the direction I want to go.”
  • Even though I didn’t think it would work for ME, ignoring the only people experiencing recovery just seemed like self-sabotage and I knew I’d never forgive myself for not trying EVERYthing, even if it amounted to nothing 
  • And then I started thinking “well, why NOT me? What’s so special about me that this wouldn’t work for me but would for hundreds or thousands of others?”
• Limbic retraining/nervous system work
  • I tried a variety of things, read multiple books, tried Primal Trust, did an online course through my long Covid clinic—none of it was getting me anywhere. The books were often too woo-woo, Primal Trust was overwhelming with the sheer volume of information. Nothing was really working for me. Sure, the exercises felt nice, but I wasn’t getting anywhere 
  • I stumbled upon a blog from someone in recovery from ME/CFS through a post comparing different programs and she mentioned she’d worked with a coach, Tessa Malcarne. I liked how she talked about it and I liked Tessa’s website and the quite substantial excerpt from her book I was able to read 
  • So I bought the book (You Only Need You). It’s expensive. I’ll say that up-front. But she has discount codes on her Instagram (go back to posts from May 2025), which made it more affordable (in retrospect, for work that has been life-changing for me and compared to the literal thousands I’ve spent on supplements, appointments, devices, etc. I’d happily pay full price). Note: I have no connection to Tessa Malcarne other than benefitting from her book immensely. She also has a free podcast that I think would get you every thing you need
  • Her work has four key elements:
    • Understanding the science/mechanism at play
    • Simplicity and self-belief. You don’t have to do a course. You don’t have to do an hour of rounds every day. You don’t have to follow some rigid protocol. You just have to learn to speak the language of your nervous system so you can understand what it’s telling you and respond back in a way it understands 
    • Learning to welcome, accept, embrace, and surrender to your symptoms
    • Learning to actually FEEL, process, and digest your emotions, which includes addressing things like perfectionism

The Exercise That Was The Key For Me

I’ve posted this elsewhere, but will post it again here because it has given me my life back and I hope it might help others. 

I start with some slow breaths and self-holding, and then I walk through the following, ideally out loud but in my head is okay too. I’ll use migraine as an example. 

• Hello migraine. Hello neck pain. Hello sound sensitivity. Welcome. You’re welcome to stay here as long as you need to. 
• I accept whatever you’re here to tell me and whatever you need me to do. 
• I surrender to you. I will not fight you. I surrender. We can coexist as long as we need to. I surrender. I will not fight you.

 

During that last one, I consciously release as much tension as possible from my body. Releasing my shoulders, my abs, any bracing. And then I go about my day. Generally in a matter of minutes, the symptom has resolved. 

Looking Ahead

I haven’t had PEM in several months, despite levels of activity that were unthinkable just a few months ago. I get a few headaches a month that resolve in minutes with the above exercise and usually 1-2 actual migraines needing medication. I am increasing my activity quite quickly at this point, after going much slower. My goals are to increase my walking frequency and length, start eventually adding some strength training, and eventually get back on my beloved bike, as well as continuing to improve my sleep. I’m also hoping to start seeing loved ones (masked!) again, after, in many cases, literal years of not seeing them. My sense (having not been here before), is that the major task before me is increasing my stamina and capacity in ways that feel safe for my nervous system, while continuing to address things that send threat signals like perfectionism, overwork, etc., and continuing to respond well to symptoms if and when they arise. 

If you made it to the end, well done! I didn’t mean to write a dissertation, but that’s the reality of what we’re collectively living with. I’m happy to answer any questions, but will not be debating the efficacy of limbic retraining/nervous system work. 

This case report says that Long covid is in large part driven by the gene rs5522 that causes a "cortisol steal" leaving the tissues functionally starved even with "normal" cortisol levels which creates neuroinflammation. https://zenodo.org/records/20017632

DO. NOT. GO. TO HIM. He asks for $1400 for him to tell you that you need to rest. He is a fraud and I just want to remind people about him again. Let me know your experiences!

The piece says "Last June, Mr. Kennedy’s office asked career C.D.C. staff members to delete from the agency’s website a 17-page summary supporting the safety of thimerosal, an additive largely removed from vaccines 25 years ago. "

So if it's been 'largely removed' 25 years ago, then why is this an issue? But that's not actually the issue. We still have mercury in vaccines. And rfk didn't actually do anything about it despite his children's health defense charity talking about mercury thimersol in vaccines.

Sooo, since i flooded this sub the past month with questions like “will i be ok???” and “are there any people who experienced the same thing?” I thought it would also be nice to post some positive story.

So today exactly a month ago i received my right sided sgb. I was extremely nervous on beforehand. Not for the treatment itself (honestly, easy peasy, i would rather have 1000 sgb’s at the same time then 1 more labour) but for the outcome and how i would feel after it. My main problem on beforehand was, I just cant describe it otherwise, a fucked nervous system. Whether it was due to myself, stress, covid etc etc, I truly believe that that is the root core. Your nervous system not being able to chill anymore die to whatever reason. I know I Will make enemies by saying this (but i am an MD myself so i kinda also see it from both sides) but also things as mcas, pots, dysautonomia? Wracked/deep fried nervous system. In my opinion at least.

That being sad, my complaints on beforehand were hyperaurasal (higher resting heart rate), fatique after doing nothing, brain fog, anxiety. The usual. I also experience palpitaitons after eating. It all started after I got COVID in the first wave (easy when you’re in the front line) and exacerbated after I gave labour to our daughter. Back then I thought it was post partum anxiety and received high dose Zoloft, which actually worked after five weeks. The next five years i would fluctuate betwreen Allright and good. But I quit my job as an md and never fully recovered.
Because I had a flare last year and did not recover fully yet I decided to try the sgb.
My doc had super good results en believed this could help me.

Unfortunately, the sgb did not have the outcome i hoped. I became super anxious, my heart rate went up after wards and i was so stressed that I was nausious all the time (also diarrhea). That lasted maybe for about three weeks and i would describe it as hell. I was bedbound, and could not take care of our daughter. I slept very poorly and woke up 3 times a night with palpitations. My conclusion (again, don’t get mad): the sgb was just too much for my nervous system or I was so anxious on beforehand I triggered myself into a flare. Eitherway, it sucked.

This last saturday however I started to feel some very light changes. My heart rate went a little down (less high in mornings after waking up and I started to eat a little bit), i could go downstairs for a while and actually play (whilst laying on the couch) with my girl and started Walking outside. The past few days I slowly slowly became better and better.
I am totally not there yet. Definately not. But I am out of that never ending loop of constant stress and anxiety. It comes Rather in waves now.

And I thought it was good to let this sub this know, as they maybe also read my panic posts.

I am not saying you should or shouldnt get the block (tbh if you would ask me right now I don’t think I would do it again, but ask me again In a month?), i am just telling my story hoping it will help people make a proper descision or just that they can read this when they experience the same. I contacted some redditors during my lowest of which some of them were super super sweet so I want to give something back as well.
Just know, you Will be ok. It will get better. And I hope I will for the next days. You can always ask me Anything!

————-
Edit 8/5: I did not expect this post to blow up like this, but I am glad it resonated. As i sad I am totally not a baseline yet (and today is actually a little mweh again) but i will keep hoping to improve the next days/weeks! Feel free to send me a message whenever you need it!