Have ME/CFS or Long Covid? How to Navigate the Medical System to Get Answers and Get Your Health Back.
When my sensible computer scientist husband offered to make a Voodoo doll of my infectious disease doctor in order to console me, I suspected I might have a problem.
The confident doctor assured me my ‘post-viral fatigue’ wasn’t anything to worry about when my body slammed on the brakes after a flu-like virus. Except there I was, 10 months later, with the stamina of a 90-year old and a laundry list of alarming symptoms. On this day, while sitting at the bench on my street corner, I burst into tears, one of my few, but notable “big ugly cries.” The incline of the sidewalk to get there had felt like the ascent of Mt. Kilimanjaro.
If only he didn’t write in my medical record notes that my positive acute EBV IgM test result was “inconsequential” because of the presence of chronic IgG antibodies. (In reality, viral reactivations are a warning sign for ME/CFS and Long Covid.)
If only he had written a doctor’s note allowing me to take time off work so I could have initially recovered.
If perhaps he ordered complete tests, this pitiable existence wouldn’t be my fate. I would not receive complete testing for 2 more years.
Today, 6 years later, I no longer think about this doctor (except when writing this article). I eventually found a way to let go, re-strategized my relationship with doctors, got answers, and got out. (It wasn’t a straight path…)
*Note: Long Covid is a big umbrella term. This article is for not intended for those with lung injury or loss of taste or smell after COVID. Rather, this is for people experiencing post-exertional crashes, dysautonomia, extreme fatigue, brain fog, and/or other prolonged neurological and immune symptoms.
My 20/20 hindsight wishes I told my younger self: Let go of a need for a person in a white suit to validate your struggle. Chose instead to see doctors as a tool to inform you about what’s going on in your body.
Doctors are busy and overworked. They survived organic chemistry, the grind of medical school, grueling residency, and a packed patient schedule. They have already long been dealing with burnout before the pandemic happened. Many are zapped both physically and emotionally. They make their decisions based on what they learned in medical school and their takeaways from the previous people who come into their office.
Like all humans, they have confirmation bias. Their cases can blend together, and a person with anxiety and depression might look a lot similar to a person with CFS (both are neurological disorders and there is overlap, not uncommon during the pandemic), and most doctors lack the time and resources to perform a differential diagnosis.
If you’re a doctor, or a person experiencing life-altering neurological and immune symptoms after a virus and a diagnosis is important to you, take a look at at “What’s ME/CFS?” on my website.
I include a detailed diagnostic overview, causes, risk factors, and early warning signs. (This is not medical advice. I’m just a regular person who put this together for informative purposes.)
If you’re being brushed off by a doctor when your body is falling apart, don’t take it personally.
Also, don’t keep going back to them to try to prove how bad things are.
If they didn’t take things seriously at the first or second appointment, find another doctor. (My next recommendation, but I felt it deserves its own section.)
This one seems so obvious looking back now, but was the least obvious to me at the time.
I went to the same primary care doctor 8 times who didn’t do much more than have her staff weigh me.
She had a good degree.
“Come into my office and let me evaluate you,” she said, every time I messaged her through the patient portal that my symptoms still persisted. I would drag my weak body into her office week after week so she could tell me things like “avoid spicy food” and prescribe me grocery store antacid.
She told me to eat toast and bananas for my extreme gut pain and digestion issues.
At another appointment she prescribed me an inhaler for my breathing difficulties.
I first thought I just wasn’t explaining myself well enough (eg. how every organ hurt, every bodily function was falling apart, about my cardiac symptoms, how my mental and physical stamina were at 20%, and how pushing myself caused my body to collapse for 4-10 days.)
So, I kept trying to explain better with what little energy I had, which led no where.
Later I realized that doctors have certain ideas and mental models, which whatever you tell them is filtered by.
- Struggling to breathe (symptom) = here’s an inhaler (symptom masker)!
- Can’t digest food = “Continue eating off the food pyramid, because that’s the diet training I received in our 1 unit in med school.”
Note about getting a doctor’s note:
If you need your primary care doctor to sign off on disability benefits or to get a note off work, and the doctor is stalling, be persistent and keep following up until the letter is signed. I know someone who’s doctor said they’d sign something, then never did, so she missed the window to get benefits.
But (as the title of this section states) your best bet may be leaving the doctor who hasn’t helped you and finding a new one.
My primary care doctor went to the infectious disease doctor in her clinic for advice, as he was the expert.
Without ever meeting me, he told her that my acute EBV IgM antibodies were “inconsequential” since I had chronic antibodies, which typically take at least 3 months to appear (I had a flu-like virus 2 weeks before the blood test).
I then scheduled about five appointments with him directly.
Each time I saw him, I hoped he’d order more tests if I asked nicely enough (this could be it’s own post, but let’s move on). He’d ultimately refuse to give me a test that would hold a major clue (will reveal that later in this post).
The well-regarded infectious disease doctor told me, “Infections have a beginning and an end.”
I went on to see other doctors referred by my primary care doctor, then those doctors referred me to other doctors, looking at me organ system by organ system, but still no solid answers.
My wonderful congenital cardiologist of many years had me do several tests. My d-dimer came back elevated, but he couldn’t find anything of significance related to my heart.
Note: An elevated d-dimer result is linked to post-viral ME/CFS and Long Covid.
He recommended that I see a psychiatrist on his team, suspecting it could be anxiety* about my congenital heart condition. Driving myself to that appointment and back, and the mental toll to explain myself was too much, and I crashed badly. The psychiatrist at the cardiology clinic recommended someone closer. Nevertheless, pushing myself to see the local psychiatrist one rainy day led to a bad crash.
This was all extremely exhausting, physically and cognitively.
I went to a blood doctor who noted I was low in ferritin, recommended Iron, and wrote “try graded exercise” in my notes. At that point, the activity I was doing was more than my body could handle, leaving me in a crash state at least 10 days a month. I wrote a post about graded exercise.
My primary care doctor also referred me to a top gastroenterologist. But that doctor had no availabilities for 6 months. Another doctor in the clinic was free. He recommended an invasive gastrointestinal procedure that triggered severe IBS-C (not sure if it was from the procedure or a bug I picked up at the buffet style deli he told me I should grab lunch at afterwards). It felt like the next dimension of hell had been unlocked. This setback left me too weak to walk to the grocery store on my street corner for several months. (My previous baseline was being able to walk to the corner store and back once per day).
It took me a while to realize this game plan wasn’t very sensible.
When my entire body was falling apart, seeing specialists who focused on individual organ systems didn’t help.
It was important for me to take back my power and step out of this fruitless loop.
But I’d take a few more d-tours first.
Note: Today I have a more nuanced concept of ‘anxiety.’ I now understand it to be physiological response related to sympathetic nervous system over-activation, rather than “all in one’s head.”
As this was going on, I was left to Google to figure out my case, like millions of others.
When I mentioned to the primary care doctor that I thought I had evidence of a leaky gut (which was all the rage in 2016 in functional blogs), she said “there is no such thing as a leaky gut” and looked at me like I had asked her if the Lock Ness Monster was real.
It actually a thing (a leaky gut). It’s called “intestinal permeability,” and it’s well known in the chronic illness research field and gaining even more attention with Long Covid.
Most regular doctors are not up to date on the latest research on how viruses can throw off the microbiome, impact the gut lumen, set the nervous system into sympathetic over-activation, and how people can end up with serious digestion issues.
So like many others, I ended up in the forums and traversing blogs.
In my case, having no answer from doctors, I tried to find all the supplements to “boost” me and the “perfect” anti-viral anti-inflammatory anti-etc. diet to restore my gut and kill whatever bad thing it might be. Though it provided relief (eating once loved foods would cause extreme symptoms), it cost me a lot of money and effort.
The regular doctors scoffed at my diet and supplements. While they weren’t right for doing this, looking back, they weren’t exactly wrong.
I’d much later realize that addressing nervous system is imperative for our health and digestion, and how going too far with diet and losing myself in medical research and blogs about what could be wrong (i.e., about the microbiome, intestinal permeability) was a stress in itself. I went really, really deep down this avenue for quite some time.
I’d later learn that it was essential for me to help my body shift to a parasympathetic rest-and-digest mode, but when we’re given no answers and feel like we’re dying, we are left with the extreme stress of trying to fix ourselves.
And that often involves resorting to strict diets and trying many supplements.
Note on diet for ME/CFS recovery: Talking to many people by now, most people find reducing or eliminating sugar, caffeine, and alcohol helpful. And eating foods that keep their blood sugar levels stable. Blood sugar regulation is so helpful for many people I’ve spoken with on their ME/CFS recovery journey. It’s perhaps one reason why the diabetes drug Metformin has been recently found to significantly reduce Long Covid risk.
I’ll write more specifics on diet in a future post, and share different perspectives.
Regarding supplements: I’d later realize that getting the right tests to find out what supplements (if any) I’d actually need was much smarter than buying thousands of dollars of supplements on Amazon hoping for the best.
But it would be a couple more years.
When I found a doctor who treated me like I was a smart human being and who gave me a reasonable answer, I stopped looking. This is like leaving a terrible partner, and grabbing onto the first guy who tells you you’re pretty.
This was about 6 months in. I had actually just about given up on the medical system, until the psychiatrist I was referred to by my cardiologist’s office told me I wasn’t actually crazy, and recommended I take action to get a real diagnosis for my terrible symptoms.
This led me to a concerned allergist, who recommended a new Primary Care / Internal Medicine doctor.
This Internal Medicine Doctor was known for his investigative skills, though he was located 1.5 hours away at Stanford.
He told me I just had a bad case of mononucleosis (infectious EBV, also known as glandular fever). Unlike the infectious disease doctor, he believed I had an initial infection. Neither believed that it could have reactivated (despite me saying I remembered being told by my pediatrician at age 18 that I had EBV, resting for 1 week, and then going back to work as a waitress).
It was so nice to be given a sensible answer. He didn’t provide sympathy, which I didn’t need, he just simply talked to me like a smart person, which I did need.
Due to the influx of statistics and research from Covid, up-to-date medical professionals now know that it is common for EBV and other viruses to reactivate when the body is under extreme stress (like the stress of a new virus).
Viral reactivations have happened to many people after Covid with ‘Long Covid’ symptoms.
When my EBV early antigen D antibodies came back positive 10 months in, showing renewed proliferation, the Internal Medicine doctor kindly prescribed me antivirals. I had begged for these early on from the infectious disease doctor, but was told “it wasn’t the standard of care.” (The standard of care was “do nothing and wait” it seemed.)
Since this antiviral only prevents replication, it didn’t seem to have that much effect that late in the game. And when I got off them 21 months in (I took 990 Valacyclovir horse pills over 11 months), my EBV would acutely reactivate 2 months later.
The Internal Medicine doctor told me I’d be okay, which was very nice to hear.
He told me he had another patient who had a bad case of EBV who took 2 years to recover. But he did recover! From what I can remember from our conversation, his other patient apparently had been concerned about walking, because it previously led to crashes, but he was now “able to walk around the block easily.”
This to me wasn’t entirely reassuring.
You shouldn’t have extreme fatigue or other debilitating symptoms from any virus for 6 weeks, let alone 6 months, or 2 years, and just be offered vague assurances.
On the other hand, you shouldn’t be told “you’ll have this for life and can just manage the symptoms” which a lot of people with post-viral illness and Chronic Lyme are told.
To me, being given no hope is even worse. So I thank my doctors for not telling me that.
I’d ultimately go see a couple more in-network specialists, though would cancel appointments with three, because at that point I realized doctors weren’t providing any answers.
Looking back, it’s obvious I had a textbook case of post-viral ME/CFS. Yet, like a million other people, I fell through the cracks of the system.
All I have to show for 3 years of severe illness in my local medical network e-chart is “malaise” (this one makes me laugh), “post-viral fatigue,” and my favorite “dyspepsia” (heartburn), which was the label they came up with for my spleen and chest area pain.
After the bad crash I had from pushing myself to seeing the psychiatrist, I found a local meditation teacher for a third of the price to come to my house. If you know my story, this would be a turning point of when I started to realize the answers might lie within.
But this isn’t a linear road, and I wasn’t done with the medical world, after all.
If your health plan dictates your doctor, and your doctor hasn’t helped, your next option is to pay out-of-pocket for a functional doctors or naturopaths.
After 1.5 years in the organ-by-organ loop, I internalized that my health was a “lost cause.” I waited another full year before seeking a CFS specialist.
I thought meditation and the perfect diet and supplement regimen could get me “out” of it. While these helped, I was not “out.”
I was still living in a bubble, a fraction of my former self.
In April 2018, I had another acute EBV relapse after pushing myself way too hard on what was supposed to be a “relaxing” quick trip to Southern California. That crash that took 40 days to return to my former baseline.
That summer I decided to finally see an ME/CFS specialist, which felt like a spontaneous decision. I went to the one a CNN journalist went to, who wrote he was 95% recovered from ME/CFS .
Her phlebotomist took at least 25 vials of my blood.
There were 2 pages of findings of things that were off. I must note that some things she considered too low or too high, were considered still “within range” by the standard system. And that a breath test she had me do related to my thyroid (beyond a thorough blood panel) wasn’t FDA cleared.
The ones that stood out most were: I had some thyroid imbalance, some mineral imbalances, a very extreme result for the C4a inflammation marker, and a highly elevated level of TGF-β (a cytokine called Transforming Growth Factor Beta). Because my C4a inflammation test came back very high (which she said connotes a bacterial or fungal infection), she ordered The Great Plains Lab Mycotoxin panel.
The other doctors told me nothing was wrong. The CFS functional medical doctor found many things were wrong.
One species of neurotoxic mold, found in household dust, came back 107 times the safe limit.
Funny enough, I told her I didn’t need the mold test, because my doctors were so confident it wasn’t mold!
For instance, 10 weeks in, when I asked my infectious disease doctor if it might be mold. He had assured me that mold wasn’t contributing to my symptoms because I “didn’t have watery eyes.” (The main symptom he attributed to mold.)
I also asked the allergist if it was mold (he ran allergy tests, but not mycotoxin or inflammation tests).
I even asked my second primary care doctor for the exact speciality tests from a research article I found about people who have inflammatory responses to mold vs. allergic responses. Someone in a forum suggested it could be mold, when I wrote that I developed increased chemical sensitivities and other odd symptoms after attic cleaners came. I didn’t understand the link to cleaning mold and chemical sensitivities at the time.
I was in such a daze of brain fog and internalized that I was annoying the regular doctors, so I didn’t push further.
Looking back, I should have gone right to a functional expert – or found any doctor willing to order complete tests.
If you’re a doctor reading this — in the case of mold, don’t just evaluate patients for their symptoms, which can vary in their presentation, but actually ask them about their environment. Like the 110 year old water damaged dusty house I was living in.
I wrote a more detailed post about identifying and testing for mold.
- Finding your healing blockers is helpful. (I don’t consider EBV a healing blocker. If it’s reactivating, there is likely a reason.)
- Find a functional expert or any doctor willing to order complete tests.
- Some common healing blockers identifiable by lab tests: Mold, imbalanced vitamins and minerals, neurotoxic chemicals (in household and personal products), pesticides, yeast, parasites, and excess heavy metals can impede healing. Will share tests in section 8.
- There are also other healing blockers, like limbic system impairment from mold, a virus, other infections, chronic stress, or trauma.
The reality is ME/CFS functional medical doctors and naturopaths are very expensive, costing from $350 to $1200 per hour. In 2018 the average cost seemed to be $450/hr, but with inflation and increased demand from Long Covid, the average price seems to now be closer to $700/hr.
For me, it still would have been a cheaper option had I seen one sooner than I did. I bled dry my $60,000 in savings and spending $10,000’s of my now husband’s money – due to income loss and spending money on random supplements and herbs trying to kill every bad potential thing it could be and “boost” my energy.
That said, for me personally (nothing I share is medical advice), I’m glad I didn’t do/take all the supplements, herbs, and drugs my functional doctor and naturopath I saw recommended. (I was already taking a boatload of supplements before seeing them.)
Some of the supplements, herbs, and drugs I purchased, but kept them sitting in my cabinet. For instance a potent white-labeled herbal concoction called “kidney tonic” and special antibiotics for SIBO that the warning label said can cause “kidney damage.” I wanted to leave my kidneys alone.
Many functional chronic illness specialists will offer things like “Ozone therapy” or “Nutrient IVs.” The nutrient intervenes drips contain high levels of vitamins and minerals. A popular one is called the Meyer’s cocktail (Magnesium, Vitamin C, B vitamins).
The CFS functional medical doctor I saw in Atlanta recommended dozens of these nutrient IVs. When I returned home to the Bay Area and found a local functional naturopath, she also recommended dozens of these IVs. (The Bay Area naturopath is now popular in the Long Covid community).
I did one IV at the Atlanta clinic and 3 in the Bay Area clinic. For me, the boost the IVs gave me wasn’t worth being bummed out by the bad energy in these offices. In full honesty, the people crying in these IV rooms, their partners pitying them (I went there alone), and the traffic going home wasn’t worth it.
But it was also having to sit for 3 hours sedentary for something else to fix me.
By early 2019, I had committed to brain retraining through a wonderful program I found, and I learned could give myself a better feeling through my internal pharmacy, so to speak. Read this article before considering a brain retraining program.
And I learned I could influence my nervous system every day and make lifestyle choices to support my healing in a better way than what this external thing was temporarily giving me.
I know many people who found functional doctors helpful, and multiple who found the nutrient IVs supportive and therapeutic.
Yet I also know many who found this route to be a money pit.
Each functional medical doctor, naturopath, and/or integrative specialist who treats chronic illnesses like Long Covid and ME/CFS has their own angle.
Some practitioners believe EVERYTHING is Lyme, and will have your blood send to clinics that nearly always return with a positive result. Then they’ll treat you with fancy silver therapy or what have you.
Certain doctors believe it’s a Coxsackie viral reactivation driving CFS and Long Covid and will give you an expensive drug/herb combo called Oxymatrine. Dr. Chia in LA was the pioneer in this. I know a couple people who said this helped. One of them fully healed (in our brief phone chat, she also credited taking a year off, taking it easy, and switching her career from marketing to her passion of graphic design). You can test for Coxsackie A and B viral levels. In my case, I didn’t have evidence of this.
Some believe it’s EBV, HHV-6 and/or CMV driving this, and give you antivirals, recommend a restrictive antiviral diet, and/or give you an herbal protocol to kill the virus.
As someone who took 990 off-label Herpes antiviral pills, ate a bushel of garlic every day, took a dozen antiviral herbal supplements on the daily, AND THE EBV STILL CAME BACK, the kill approach wasn’t a complete solution.
For other people I know reducing viral levels through protocols was a key piece.
Some doctors believe it’s mold (testing for this is straight forward). Getting out of the mold was key for me. But I still crashed a month after. I’d ultimately have to work on my brain and nervous system.
Some doctors believe it’s everything and throw in the kitchen sink. Some treat with herbs. Some treat with drugs. Some do both.
Some also help women over 50 with rebalancing hormone, which I’ve heard can be helpful.
Some will recommend severely restrictive diets and intense protocols.
The costs will add up, and while the functional medicine route approach works for some people, it does not work for others, and can leave you in a state of alarm about pathogens and in debt.
Some of my mentees have been so deeply affected by what their naturopath has told them about the “bugs” in their body. While I admire those acknowledging the dynamic way microorganisms can influence our health – if not spoken about carefully, it can cause very extreme duress that actually is worse for the patient than the bug itself.
Opinion: The best functional doctors & nutritionists in my opinion don’t give you never-ending kill protocols or give you added fear about pathogens or food.
Rather they help take your body to calmer waters, and then guide you to you reintroduce things on a holistic level.
Questions to ask a naturopath or functional doctor:
Don’t just ask them what their rate is or what the cost for the initial consultation and labs are.
Rather, also ask what are the estimated expected costs for the treatment plan for addressing the most likely culprits.
You may find they’ll initially quote $3000-$5000, but if you press them further, it will likely be closer to $20,000. Some cost closer to $40,000 over time.
These companies, for an out-of-pocket fee, either send you an at-home blood collection kit or write the lab requisite to get the test done at your local lab. The at-home tests typically involve pricking your finger, then mailing back the kit to the lab.
Here are basic tests you can now order from home:
- Vitamin D
- Magnesium RBC (preferred to the Magnesium Serum)
- High sensitivity CRP
In addition to the above tests, consider seeing an ME/CFS specialist or naturopathic doctor who can order and interpret additional tests (these aren’t typically available through self-order websites):
- C4a inflammation
- Natural Killer Cell *activity* (activity is more important than the amount or percentage, as it tests how well the NK cells actually function)
- Complete thyroid panel (Free T3, free T4, TSH, Anti-TG, Anti-TPO)
- EBV, CMV, HHV-6, Coxsackie A & B, Mycoplasma pneumoniae
- Great Plains Lab Mycotoxin Panel
- Genova Diagnostics stool test
You might be also interested in getting testing for SIBO (small intestinal bacterial overgrowth).
Until you deal with your nervous system, gut motility may still be an issue, because a dialed-up fight or flight system can send send blood to your heart and extremities and de-prioritize your digestion. And when the gut is impaired, bacteria can more easily build up. So if you’re addressing SIBO, just make sure you consider the role of your nervous system.
(Nothing on my blog is medical advice, and is just for information and consideration only.)
By the time I was given antivirals, it was too late for them to be effective. The kill approach did not get me out of ME/CFS.
The EBV was there in my body.
I had to find another way. And many people are now finding another way to return their body to homeostasis.
And that’s focusing on the nervous system. Many new papers coming out about ME/CFS and Long Covid feature the role of sympathetic nervous system over-activation.
But it’s not just backed by science.
It’s a radical idea. That our only option isn’t something external to kill what’s within us.
We can actually harmonize with the “bugs” in our body to help our body heal.
Many people are finding that instead of solely focusing on trying to kill all the viruses and others pathogens within them, they decide to harmonize with them.
They do this by supporting their nervous system and getting into a parasympathetic state.
I know what some people might be thinking: we know these pathogens can lead to chronic disease. Scientists recently found that EBV is linked to another chronic disease: MS.
But what about the fact that 95% of Americans have been exposed to EBV, but less than 1% of the population has MS?
And what about the billion people who recovered from Covid without getting Long Covid?
And how are people with these conditions healing?
For me, the main thing that stopped my body from the EBV flaring and ultimately got rid of my ME/CFS symptoms was the nervous system work I did, based on the science of neuroplasticity, as well as healthy lifestyle habits to support my body’s natural ability to heal.
And I’m not alone. I know over a hundred people who healed this way, through interviews I’ve conducted, other interviews I’ve read or watched, people I’m friends with on Instagram, and readers of this blog looping back telling me about their life now.
Dr. Cathleen King, the founder of Primal Trust, a newly popular membership program which is helping many people break free from chronic disease shared with me how after 11 years mostly bed-bound in a dark room, she had a powerful epiphany that her only infection was fear. She came to this realization in a health professional’s clinic about the Lyme and co-infections she had been told were attacking her.
In our powerful interview about her full recovery story on my YouTube channel, she sites a published study about Swedish lumberjacks, most of whom tested positive for Lyme, but had no symptoms. Dr. Cat spent over a year rewiring her brain (she began with a popular brain retraining program), healing her trauma on a somatic level, and beginning to live her values.
Dr. Cat’s new Level 1 nervous system regulation program, Primal Trust: Regulate includes biomedical explanations for ME/CFS, Long Covid, chronic pain, Chronic Lyme and more, and highlights Bob Naviaux’s research on the Cell Danger Response as well as research on the role of the nervous system in chronic disease. The program provides both top-down (brain retraining) and bottom-up (somatics) tools to regulate the nervous system.
The Cell Danger Response theory doesn’t consider the pathogens themselves to be the sole culprit for chronic disease, but rather theorizes that it’s a “block in the healing cycle.” I may have not explained that 100% correctly. I’m not a scientist.
Many nervous system and lifestyle programs focus on helping the body through the healing cycle. When a body is stuck in fight-or-flight, it can’t easily heal.
Several other programs, including the free program The Alignment Program by Daniel van Loosbroek, also highlight the Cell Danger Response and the role of the nervous system in chronic illness.
ANS Rewire goes in a lot of detail about the role of the nervous system in ME/CFS, POTS, fibromyalgia and Long Covid. DNRS (I write about my experience here), Vital-Side, and the Gupta Program focus specifically on the role of the limbic system in chronic illness and provide a blueprint on how to rewire your brain for parasympathetic healing mode. CFS School is both a top-down and bottom-up nervous system regulation program, and the co-founder Jen Mann healed from severe ME/CFS.
There are also lifestyle programs, which provide sleeping tips, healthy routines, energy allocation advice, and other strategies to help nudge the body into homeostasis. You, of course, don’t need to buy a program to heal. A lot of this information is available for free on YouTube and Instagram.
In my website’s Resources section, you can find many free or low-cost resources.
I should also mention that small amount of people with ME and related illnesses who have severe craniocervical instability (CCI) are helped by spinal cord / cervical spine surgery, including a lovely person who went to my high school. Surgery does not come without risks. I also know someone with CCI who recovered from ME/CFS and Mast Cell Activation syndrome through focusing on nervous system regulation (each person’s case is different) – here’s her story. Each person’s case is unique.
Some people are helped by other things to support their spinal alignment (which can impact lymphatic drainage, the brain stem – which senses threats in our environment, and our vagus nerve). I mention this in my website FAQ’s section: ‘Three other approaches to support the nervous system.’
Friendly note: Nervous system regulation programs or lifestyle/pacing programs are not a replacement for medical advice. You can still see doctors and work on these things. I’m all about a holistic approach, or whatever works best for you at this time.
I put my cardiologist on a pedestal and assumed he knew all the answers. While he has been a key person in my health / life, and was a prestigious doctor at a top institution, he wasn’t a specialist in chronic disease and therefore didn’t have answers for me during my journey with post-viral illness. I nevertheless still truly appreciate him for looking after my heart.
The functional doctor who found my healing blockers went to a university that I never heard of, but she had had CFS herself and was an expert.
Meanwhile, there are prominent CFS clinics at top institutions I’ve heard of that offer very little lifestyle or nervous system insights and only limited testing. You’re put on a 1.5 year waitlist just to even see them.
Now, there are Long Covid clinics sprouting up that seem to know nothing. With the influx of Long Covid patients, it’s unfortunately very common for doctors / institutions with limited experience but good pedigrees to be seen as “the expert” simply because there is no one else.
For instance, my new friend Mike said he went to an out-of-pocket neurologist now known as the “Long Covid specialist” only to be given very generic info on pacing, which he had already learned from an NHS pamphlet. I also saw several “Long Covid clinics” in the news putting ill people on elliptical machines.
While it can be extremely validating to see a someone…anyone…in a white coat who seems to understand, very few have the information and experience on what it takes to heal.
Your best bet (not medical advice) is finding people who healed from CFS and Long Covid themselves. Seeing what they did in their day to day life. Their approach. And learning from them on how doctors worked into the picture.
My friend Raelan Agle has close to a hundred ME/CFS and Long Covid recovery stories by now on her health recovery YouTube channel, and I have about 20. By sharing our stories and knowledge, we’re changing the standard of care.
On my website, I also have a CFS (and related illnesses) Coaches page. Most healed from ME/CFS themselves. I don’t get any money for featuring them.
Most coaches have certificates or degrees, but a few don’t. Chris Jamison, a salt of the earth guy, is one of them. His day job is a teacher, and he doesn’t have a fancy degree, except in the hard knocks of life, going from hospitalized with CFS to running marathons.
I can see why a lot of people rather be on a long wait list and (in many cases) pay 15 times more to see a pedigreed “expert” who can give them something (a pill, validation, a label in a chart), rather than a coach who has been there.
For me, I needed to first see the functional doctor and go down that path as far as I did, to truly commit to the path of self healing. There is no right or wrong way.
Realizing our health is in our own hands is scary, but it’s also empowering.
On my website’s Resources page I list some links to medical doctors, clinics, licensed nutritionists, and naturopaths, if you’re interested to go that route.
One of the most well-known functional medical doctors once stated “health care is 90% self care.” He said his chronically ill patients who had the best outcomes realized this.
No one goes to a ME/CFS clinic and gets better the next day.
It’s the things we do (and don’t do) every day outside the office that make the difference.
There isn’t a pill to turn off the Cell Danger Response to let the body know it’s safe “it’s okay to heal.”
Don’t depend on one doctor to have all the answers for healing your body.
For the majority of people who recover: it is lifestyle habits (i.e., sleep habits, digital habits, morning routine, pacing, energy allocation, healthy boundaries), nervous system support (brain retraining, somatics, trauma healing), and alignment (with community, relationships, purpose).
Post-viral illness, ME/CFS, Long Covid, and related chronic conditions can take your body and soul to the depths of despair.
Let it empower you to create the life of your dreams.
When you rebuild your health from the bottom up, you have the potential to become even more resilient than you were before.
If you’re interested in learning more about the different options for lifestyle, pacing, and nervous system regulation programs, I partnered with Lindsay Vine, MPH, of the Post-Viral Podcast to produce a highly-detailed Lifestyle and Nervous System Regulation Programs Guide.
It was a 7 month effort. We took feedback from over 100 people who did these programs to inform our guide. It’s $19, so Lindsay and I make $9 each from every sale (the site takes $1). This isn’t much, but every purchase helps me pay down the debt from making and hosting this website for free for the last 3 years (and things like my video editing software for the recovery story interviews I share on my YouTube channel).
Lindsay and I list who each program is for, who it’s not for, price, duration, amount of content, if 1-2-1 coaching is available, what sets each program apart, what they don’t have, and things to keep in mind (i.e. the best approach to take). For those with financial restraints, for each program we also list what free or low-cost materials are available from the creator.
It contains independent, constructive analysis. We don’t recommend one program over another, but we hope our guide can help you make the best decision for you.
(Note: Considering I once bought an “Unstoppable” e-book for $157 from a man with a made-up sounding name promising a cure for “adrenal fatigue,” that was actually a ploy to sell his white-label supplements, I really can’t underestimate the value of our 180-page independent guide enough. Also, many people told us it’s amazing and very comprehensive.)
Here is more information about our Lifestyle & Nervous System Regulation Programs Guide.
Books and other Resources:
If you’re looking for a place to start on healthy lifestyle habits, I recommend the book Sleep Smarter by Shawn Stevenson and the book Atomic Habits by James Clear (the latter is more for implementing them). Both are easy to read and very actionable.
If you’re looking for a couple good books on mindset, I recommend The Power of Now and The Untethered Soul. I share more books in my FAQs section.
I also share 10 books from people who healed from CFS in the Resources section on my website.
This is the first and last time I’ll cuss on my blog.
We all got f*cked over.
We weren’t emphasized the importance of resting early on after a bad virus or other triggering event. We were told “this never happens” by doctors, despite this happening to 5 million people. Many of us were denied thorough testing. We joined the forums, and it was nice to know we weren’t alone.
But I soon realized that staying in the doom groups would not help me get out. Tweeting my outrage wouldn’t either.
The NIH and NHS aren’t listening to our tweets.
Many people, rightfully so, are so upset about the extreme gas-lighting that it has become their identity. But I realized that this was the opportunity to believe in myself and take my power back.
So I found the recovery stories of others who made it out. And now I get to share my story. And the story of 20 others now on my blog and YouTube channel.
By sharing our stories and pooling our knowledge, a new standard of care is coming from the group up.
In 2019, I briefly met up with an old college friend who was an ER doctor.
He told me this: An ER doctor’s job is to stop patients from dying or from imminent decline. That is their job.
It seemed so obvious.
But before then I thought “Go to the ER for relief and answers from scary and odd symptoms.”
When my skin turned yellow, I had heart palpitations, a digestive emergency, and breathing issues… my first thought was to go to the ER, so I did.
Another time my body started to uncontrollably shake, and I did the same. Both times, my symptoms stabilized within 45 minutes on their own. I’d receive large bills, but no answers.
Don’t expect an ER to fix your chronic illness or get to the root of your symptoms.
Emergency rooms aren’t equipped to find the root of your chronic symptoms. They are equipped to stop you from dying.
They aren’t to validate you. If a doctor treats you poorly, remember, it has nothing to do with you.
In some cases, for instance high fevers, extreme crashes, and extreme cardiac symptoms (which can be part of ME/CFS and Long Covid), ER’s can take action to help stabilize your condition.
For instance, Miguel Bautista ended up hospitalized for weeks with a very severe crash. What he learned in the hospital was his launching pad to his full recovery. Miguel shares his recovery story here on my YouTube channel.
This is not medical advice, but rather is what I would have told my younger self:
If you feel your life is in imminent danger, then go to the ER, but don’t stay longer than you need to.
If your symptoms flare, but your life is not in imminent danger, consider unplugging and focusing on calming your nervous system in any way you can.
Looking back, I can see that some of the out-of-the-blue breathing attacks, palpitations, and air hunger episodes that I experienced were actually largely driven by my nervous system being in fight-or-flight sympathetic mode, rather than being a life-threatening emergency needing surgical or drug intervention (or Googling to find an answer).
To calm your nervous system, you also don’t need fancy vagus nerve stimulator tool or even fancy polyvagal exercises, though these can be helpful. I plan to write about these in a future post. You can simply put your hand on your heart, breathe into your stomach, and reassure yourself you’re okay. For instance, “This is just my nervous system. I am safe. I am becoming calmer with every breath I take.” I have more healing mantras / affirmations here and here. (If mantras aren’t your thing, that’s cool, some people find them helpful.)
Here is a video I made on how I learned to get through crashes.
Jennifer Mann, co-founder of CFS School, and Sarah Jackson, founder of Restore, have wonderful Instagrams where they share somatic practices and gentle movement for calming the nervous system. Both fully recovered from severe CFS (having been bed-bound).
Kyle, who healed from Long Covid, shares with Raelan Agle about how changing the way he approached crashes was helpful for his recovery.
Yes, these insights are wildly different than what you will get in certain forums (“Get a CT scan!!!” if you have scary symptoms), but it’s through the lens of someone who has spoken with hundreds of people who’ve gone through this journey.
(As a friendly reminder, nothing I share is medical advice.)
Our system isn’t equipped to diagnose people with multi-system chronic disease.
In an ideal world, the system would provide you insights into WHY your body isn’t healing and actionable insights on HOW to heal.
Medical systems should ideally pool their knowledge and collect longitudinal, full-picture information on patients vs the current state of affairs where individual doctors look at you from one lens and make comparisons and judgements based on similar characteristics from a few other patients they’ve seen for 10-30 minutes a handful of times, before the patient moves on to another silo.
The infectious disease doctor who ruled my acute EBV IgM antibodies were inconsequential may have seen one patient who had a positive IgM result with no symptoms, perhaps. Though they would have been in his office, getting that test, for something I suppose.
Current standard of care for post-viral illness:
1. Tell person it’s nothing. Later tell person “try graded exercise and CBT.”
2. At around 6 months, tell person they might be stuck with this for life and the best they can do is manage their symptoms.
A better standard of care for post-viral illness (simplified version):
1. Write a note for person to take time off if they’re experiencing up-and-down flu-like symptoms and energy crashes after a virus or other triggering event (advise to stop work, no exercise early on, reduce screen time, taking it easy physically and mentally).
2. Write tests orders to identify healing blockers (vitamin deficiencies, mold, bacteria, heavy metals, parasites, etc.).
3. Provide people thorough resources for lifestyle, pacing, and nervous system regulation to support healing.
And of course, the government could invest billions of dollars into ME/CFS, Long Covid, POTS, and more, ideally including funding qualitative longitudinal studies to understand what factors, strategies, and approaches impact patient outcomes.
Thankful to doctors
Being a doctor is the hardest job and despite my experience with doctors when I had ME/CFS, I still believe it is the most noble profession.
I know I’m only partially aware of the challenges doctors today face. Particularly during the pandemic. Before the standard of care can change for patients, major changes must take place so that doctors themselves are being supported.
That includes building more medical schools, providing medical students more education on the nervous system / diet / environment, health care systems reducing paperwork, providing doctors more support staff, shifts that account for sufficient sleep and restoration (rather than driving doctors to the ground like its some badge of honor), and mandating more time for doctors to spend on self care vs caring for everyone else. I realize most of these are pipe dreams.
No one is looking out for the people who are looking out for us. And until that changes, the system likely won’t.
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