Each year since I started the blog, I have detailed my POTS and ME/CFS progress. This post is a continuation of that tradition.

A few things to consider:

1. These changes happened very gradually and subtly over multiple years.
2. This improvement has happened with the culmination of dozens of small things/treatments and time.
3. I want to acknowledge that this is not indicative of everyone’s experience, so take this for what it is.

I developed POTS and ME in the spring/summer of 2017 and was diagnosed in August of 2018 (when it was its most severe for me). This compares my progress from 2018 to 2020-2022. To read about my path to diagnosis and journey with POTS and ME/CFS up until October of 2019, you can check out My POTS and ME Story.

Tilt testing

• 2018- My BP went hypertensive at the 1 minute mark and otherwise stayed normal. My heart rate jumped from 78 to 122 (increase of 44 bpm) and stayed in the POTS criteria range the whole time I was upright.
• 2020- Poor man’s tilt (so, this is not a scientific comparison). It’s important to note that I am currently taking Mestinon because it lowers the heart rate a bit. My BP drops about 20 points when I stand, but I don’t put a ton of stock in that because I’m just using an at-home machine. My pulse at laying down is 57 bpm. 30 seconds after standing it jumps to 107 bpm (a jump of 50 bpm). By the 1 minute mark, my heart rate is already back down to 75 and stays between there and the mid 80’s the whole ten minutes. According to my neurologist, I no longer meet POTS criteria because the heart rate increase must be sustained for a period of time.
• 2021- Based on how I feel, I am almost certain that I would continue to no longer meet POTS criteria. My heart rate monitor is on the fritz, so I did not retest this.
• 2022– I don’t have a heart rate monitor anymore, but I am guessing that I would still no longer meet POTS criteria.

Out of breath

• 2018- Very often.
• 2020- Occasionally.
• 2021- Rarely.
• 2022– Rarely.

“Gassed” feeling in muscles

• 2018- Severe, debilitating, and frequent. This is the sensation of the muscles having no oxygen and “burning”. The “burning” is not painful, it is a fatigue-inducing sensation. It is like having the feeling in the muscles like you just completed a 400m race… perpetually.
• 2020- This fluctuates. Most of the time it is mild, but sometimes it is more intense.
• 2021- This occurs pretty rarely and doesn’t bother me.
• 2022– I would say this is still pretty rare. However, I have been lifting more/heavier and having a greater overall activity level due to work and my muscles struggle sometimes. They feel like they don’t recover very well and get tight/junky feeling. For a while I considered this one in the same as “gassed” muscles, but I would characterize it as different upon more reflection.

Low grade fevers with fever symptoms

• 2018- Frequent.
• 2020- Fairly rare.
• 2021- No longer occurs.
• 2022– No longer occurs.

Sore throat

• 2018- Occasional.
• 2020- Rare.
• 2021- Extremely rare.
• 2022– No longer occurs.

Bloating

• 2018- Frequent and very significant.
• 2020- Sometimes it isn’t too bad, but for the most part it is still pretty frequent and significant.
• 2021- Same as last year.
• 2022– This and other GI issues got temporarily worse post-COVID, but now they are better than before.

Brain fog

• 2018- Major and debilitating. This was very upsetting and embarrassing in the beginning.
• 2020- I have a very minor brain mist as my husband lovingly says. Actually, it is rare that I notice this anymore. I feel very confident in my cognitive abilities.
• 2021- I still feel very confident in my cognitive abilities. I don’t have any consistent brain fog anymore. It only crops up in response to something like a random crash or overwhelm.
• 2022– My brain fog got worse for a few months after I got COVID-19, but now it’s back to only being an issue when I overdo it.

Driving ability

• 2018- Heck to the no.
• 2020- I can drive up to 30-45 minutes at a time on easy routes. Also, I drive like a grandma. I think this is more of a confidence issue now and I need more practice.
• 2021- I drive everywhere I need to go as normal. I don’t drive long-distance (ex. traveling out of state). I imagine that I could if I took breaks, but I don’t have the desire to try it at this point.
• 2022– I’m doing great with driving. I drive every day, sometimes up to an hour in one direction for work.

Pre-Syncope

• 2018- Frequent, and I would sometimes drop to the floor, but not fully faint. I like to call this maneuver the POTS, drop, and roll.
• 2020- This fluctuates. Sometimes, I will go a period of time without noticing it at all. Other times, I will notice it only when I crouch and then stand up. Occasionally, I will have a day/several days in a row where it’s like “WTH is going on!”. The good news is that my body regulates quickly and the sensation passes after a short period of time.
• 2021- This is a rare occurrence.
• 2022– This has been happening more frequently this year, but it still passes through quickly, so I’ve been fine. For example, I’ll squat down, stand up, see stars and hold on to something, then I’m fine several seconds later.

Fatigue

• 2018- Severe, debilitating, and constant. I was functioning around 30% of normal. I could do a little beyond taking care of my basic needs.
• 2020- This is still my most limiting factor, but this has improved significantly. I function around 70% of normal now and feel better. When I speak in percentages like that, 100% would be able to function like my peers, not necessarily feeling perfectly amazing. I do not consistently feel 70%. It will dip sometimes. But, for the most part, I can stay functioning at that 70% without “paying for it” despite a dip in how I feel.
• 2021- I function around 80% of normal most of the time, which is amazing. Energy improvement has come subtly and slowly, but I can see the change when I compare what I can do in a day now compared to last year.
• 2022– I function around 85% of normal most of the time and during the daytime. I have continued to see gradual improvement. Evenings are a little harder for me now, though, because the Post-COVID booster pain catches up to me and I get more fatigued than I used to during that time.

Energy crashes/Post-exertional malaise

• 2018- Frequent and they would take several days to bounce back from.
• 2020- Occasional and they take less than a day to bounce back from.
• 2021- Rare and still take less than a day to bounce back from.
• 2022– Same as last year.

Cycles

• 2018- Menorrhagia, oligomenorrhea.
• 2020- I alternated between what is listed above and normal early in the year, but the last few cycles have been normal.
• 2021- Normal.
• 2022– Normal.

Noise/commotion sensitivity

• 2018- Sensitive to always.
• 2020- This only bothers me if I am in a crash and it is still less bothersome at that.
• 2021- Same as last year.
• 2022– Same as last year.

Muscle weakness

• 2018- Useless noodle body. My hip flexors were especially weak- this happened at the onset of the illness. I became so weak in the year before I was diagnosed that my husband would have to carry me up the stairs.
• 2020- I am much stronger and feel like an athlete again. My hip flexors still struggle despite me working on this consistently, though.
• 2021- I continue to get stronger and have more stamina as time goes on.
• 2022– Continued gains.

Vestibular ocular reflex issues

• 2018- My vision was “off” in a way that is hard to explain. I used to explain it like a drunk feeling, but not exactly like that. Another way to explain is like in That 70’s Show when Eric would talk to his parents after he came up from the basement and the walls would swirl behind them, but to a much lesser degree.

• 2020- I do not notice this at all anymore. Three cheers for physical therapy!
• 2021- No issues.
• 2022– No issues.

Heat and cold intolerance

• 2018- Basically like a cold-blooded lizard.
• 2020- I kicked butt with the heat this summer. I am not cold intolerant, but I still despise it. My google searches for “warm places to live” have gone up exponentially this month.
• 2021- I continue to tolerate the heat and the cold better as time goes on.
• 2022– I think I’m normal in this regard now.

Acute illness and sinus infections

• 2018- Every time I would get sick (which was constantly), it would turn into a sinus infection.
• 2020- I haven’t gotten a sinus infection in about 10 months. I also have only gotten sick once in that time period. I believe COVID-19 measures are the largest factor in this.
• 2021- I’ve stayed healthy and have had zero sinus infections.
• 2022– I’ve been healthy except for a bout of COVID-19 in February of this year.

Blood pooling

• 2018- I would occasionally notice where my feet would have the blood pooling in them. Or, I would lay with my legs up and my feet and lower legs would go white.
• 2020- I can’t remember the last time I noticed this.
• 2021- Same as last year.
• 2022– Same as last year.

Cold hands and feet

• 2018- Ice, ice, baby.
• 2020- Vanilla ice, ice baby. Too cold, too cold. They are my secret weapon when my husband is looking a little too comfortable.
• 2021- I notice it in the winter, but I don’t think it’s a problem.
• 2022– Normal and random.

Exercise tolerance

• 2018- I could tolerate 3 minutes of slow, easy movement.
• 2020- I exercise for 30-60 minutes every day doing: yoga, walking, dance cardio, and HIIT workouts.
• 2021- I exercise for almost two hours every day doing: weight lifting, walking, running, drills, and stretching. I have better non-exercise movement tolerance as well.
• 2022– I exercise around an hour each day doing similar activities to last year. Although I exercise less, I work more and my jobs are physical.

Dry eyes

• 2018- No problems.
• 2019- Dry eye syndrome and blepharitis.
• 2020- Prone to the issues above, but it’s under control/treated.
• 2021- I’m still prone to those issues and they occasionally become a nuisance, but it’s mostly under control.
• 2022– This has been a little more annoying this year, but it’s still mostly under control.

Headache

• 2018- I used to get a sensation of pressure around the base of my head. It was a different than a headache, but I don’t know what to call it.
• 2020- I do not notice this anymore.
• 2021- Not an issue.
• 2022– For most of 2022, none. However, I get headaches now due to the COVID-19 booster reaction. They occur a couple times per week, mostly in the evening or when I get worn out. This is improving gradually over time.

Pain

• 2018– Occasional mild fever body ache sensation during crashes.
• 2020– Rare body aches.
• 2021– Very rare body aches.
• 2022– Very rare for most of the year. However, since the booster I get frequent, mild body aches that span from my head, down my neck, and down my arms into my hands. The pain has definitely improved after two courses of prednisone and with time.

Heart Arrythmias

• 2018– None.
• 2020– None.
• 2021– None.
• 2022– After the COVID-19 infection in February, I had PVCs for around three months. Then, I was fine until I received the COVID-19 booster in the fall. Now, it feels like I get something. Perhaps it’s just more tachycardia than I’m used to. It’s hard to put my finger on what it is, but it feels like a random flutter in my chest. I haven’t gotten it evaluated yet because I don’t think it coincides with any other symptoms.

Sleep

• 2018- Rare insomnia.
• 2020- No sleep problems.
• 2021- No issues.
• 2022– No issues.

This past year has been a bit of a mixed bag. Overall POTS and ME/CFS-wise, I think I have had some encouraging improvement. My overall quality of life is better. However, I have had some struggles due to COVID and the booster. The COVID struggles are over and I am optimistic that the new issues that cropped up from the booster will eventually subside.

How has your POTS or ME/CFS progressed over the years?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Day 3’s topics are primarily about treatments. I stuck to the lectures about newer/novel treatments.

Diet and the Neuroimmune Axis: Implications for Dysautonomia. By Laura Pace MD PhD.

• Although elimination diets can be life-saving interventions for those with celiac disease, protein allergies, and genetic metabolic disorders; they can be potentially dangerous for other populations. These populations would include people with functional GI disorders, GI motility disorders, and abdominal pain syndromes.
  • This is because diet interventions impact the entire neuroimmune axis.
  • Dr. Pace promotes more prescriptive diets based on the use of confocal laser endomicroscopy to determine non-IgE mediated food allergies.

Cannabis as an Adjunctive Therapy: Review of the Evidence. By Jeffrey Boris MD.

• So far, there have been studies concerning cannabis and: seizures, pain, nausea, inflammatory bowel disease, sleep, cancer, epidermolysis bullosa, and eczema. Some studies are more promising than others.
• Studies on cannabis reflecting autonomic effects have been a mixed bag of whether the effects would be beneficial or harmful.
• Cannabis could be used for some Dysautonomia symptoms such as nausea, insomnia, pain, headache, and appetite. HOWEVER, it can worsen: lightheadedness, tachycardia, fatigue, brain fog.
• Anecdotally, Dr. Boris has had some patients to okay with cannabis while others did not respond well.
• More concerns about cannabis include: content (contaminants) and limited research on medication interactions.
• There is a definitive downside to both smoking cannabis and any use by adolescents/young adults.

Low Dose Naltrexone Use in Dysautonomia and Chronic Pain Conditions. By Pradeep Chopra MD.

• Low dose naltrexone (LDN) is a disease modifying agent, not a bandaid/symptomatic treatment. which makes it unique.
• LDN is NOT an opioid and is non-addicting. However, regular dosed Naltrexone is typically used for drug addiction. Make sure that you communicate to your medical team what you actually use it for.
• It is used for chronic pain, neuropathic pain, autoimmune dysfunction, MCAS, fatigue, and brain fog.
• Side effects can include: headache, insomnia, and colorful dreams. These side effects usually go away over time.
• A patient should give at least 6 months to determine if it is useful, although many can start to notice a difference within a few weeks.
• LDN must be ordered from a compounding pharmacy. It should be compounded for immediate release. You may ask for it to be compounded without fillers etc.
• It should be taken once per day. The dose can start very low and gradually work up to 4.5 mg per day.
• LDN does not stay in the body for very long (roughly 24 hours).
• LDN works by creating a positive feedback mechanism the increases endorphin and enkephalin production. Endorphins and enkephalins are useful for pain management. Enkephalin also plays a role in cancer, cellular renewal, and wound healing.

Autoimmune Dysautonomia- What About IVIG for POTS? By Steven Vernino MD PhD.

• The autonomic nervous system and immune system are highly interrelated.
• POTS may have an autoimmune etiology. There are also autoimmune forms of Dysautonomia (ex. AAG).
• Clues of autoimmunity in POTS
  • It primarily affects women, which autoimmune diseases primarily affect as well.
  • Onset may follow an infection or other physical stress.
  • There is an association with hEDS and mast cell hyperactivity.
  • There is an association with other autoimmune disease like Sjogren’s syndrome.
  • There is a higher prevalence of autoantibodies.
  • The jury is still out on the role of the prevalence of g protein coupled receptor antibodies.
• POTS is heterogenous. Not all forms are autoimmune.
• Based on case studies so far, IVIG is shown to improve Dysautonomia symptoms, but there are some side effects like headaches.
• IVIG works by:
  • Binding to FcRn receptors to increase the turnover of IgG.
  • Inhibiting B-cells and regulating T cells.
  • Neutralizing some pathogenic antibodies and cytokines.
  • It does NOT suppress immune function.
• Risks of IVIG:
  • Kidney function impairment
  • Blood clots
  • Allergic reaction
  • Headaches
• Dr. Vernino’s group is looking at the effect of IVIG on POTS in a randomized, double blinded study.
  • The study is in progress and will be complete in fall of 2023.
  • It is too soon to report on results, especially since they are blinded.
  • Dr. Vernino’s group is collecting serum throughout the study and Compass 31 scores which the indicate the severity of autonomic symptoms.
  • So far, the infusions are generally well-tolerated. They are using a relatively low dose of IVIG.

What were your takeaways from day 3 of the conference?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

It was another fascinating day of lectures at the conference. This day is Long Covid and ME/CFS intensive.

Neurovascular Dysregulation During Exercise in POTS, ME/CFS, and Long Covid. By David Systrom MD.

• Dr. Systrom thinks of ME/CFS and POTS as being akin to studying two sides of the same coin.
• Dr. Systrom is a Pulmonologist. It is great to have someone from his field weigh in.
• There is a great deal of overlap in POTS, ME/CFS, and Long Covid in certain pulmonary-related dysfunctions.
  • Preload failure- This is the most common finding among these groups. Preload failure refers to an inadequate filling pressure in the ventricles.
  • Left to right shunting- I believe this means that not all the oxygenated blood actually gets pumped out to the body, some of it goes straight back to the lungs.
  • Mitochondrial dysfunction
    • A deficiency of ubiquitous citrate synthase is commonly seen in patients with mitochondrial dysfunction.
    • There is currently a clinical trial underway with a delta modifier drug to treat this issue. Early anecdotal reports are promising.
• Preload failure contributes to exercise intolerance in ME/CFS.
• Mestinon improves preload failure.
• Mestinon works neurally, so based on the study showing that Mestinon improves preload failure, it seems that ME/CFS is a neurovascular disease.
• Small fiber neuropathy is also frequently seen in patients with POTS, ME/CFS, and Long Covid.
• Hyperventilation is common in POTS, ME/CFS, and Long Covid. It can cause physiological changes that lead to shortness of breath. It is currently unknown why hyperventilation occurs.
• Cerebral blood flow decreases upon being in an upright position in both POTS and Long Covid. When the amount of hyperventilation was corrected for in the metrics, POTS levels of cerebral blood flow appear more regular, but Long Covid levels of cerebral blood flow do not. This may indicate that Long Covid causes an intrinsic abnormality of the vasculature.

Long Covid Autonomic Dysfunction. By Mitchell Miglis MD and Charlie McCone.

• Charlie is a Long Covid patient. My heart goes out to him as I can sympathize with much of what he has/is going through. He went from being a very active individual to his life being turned upside down.
• Long Covid is not just lingering symptoms, but it is common to have an onset of new symptoms over time.
• Long Covid occurs in roughly 10-30% of people who get Covid. This means 8.9-26.7 million Americans have Long Covid.
• 67% of patients in a Long Covid cohort had Compass 31 scores of 20 of higher, suggesting moderate to severe autonomic dysfunction.
• Both Long Covid and POTS demonstrate a reduction of blood flow and CO2 in the brain upon standing.
• Small fiber neuropathy is very common in Long Covid.
  • One study showed the rate at 89% among Long Covid patients and 60% among POTS patients.
  • A different study put the percentages at 50% for Long Covid.
• Interestingly, 63% of Long Covid patients in a small study had the presence of phosphorylated alpha-synuclein deposited in their autonomic nervous system. This is the same protein that is responsible for Parkinson’s Disease. The question is, does Covid propagate this or is the protein already present and predisposes an individual to Long Covid?
• Unlike other infections, the acute severity of Covid infection does not indicate the likelihood of developing Long Covid.
• Potential mechanisms of Long Covid
  • Tissue injury
    • The virus infects and damages almost any cell.
  • Immune mediated mechanisms
    • Many autoimmune diseases and manifestations are triggered.
    • G protein coupled receptor autoantibodies are identified.
  • Viral persistence
    • A disturbing study demonstrates that Covid RNA can still be present in patient’s feces several months after infection. The viral load in feces tends to correlate with severity of Long Covid symptoms.
  • Microclotting
  • Mast cell activation
    • There is a link between mast cell activation and autoantibodies that can stimulate early maturation of mast cells. This leads to an over-activation of the mast cell system.
  • Baroreflex impairment
    • Covid can bind in areas of the brain that control blood pressure.
  • Deconditioning
    • Deconditioning doesn’t cause Long Covid, but it makes it worse.
  • Gender Physiology
    • First of all, rude.
    • Women have less skeletal muscle mass and smaller hearts.
    • Women are more prone to pelvic venous pooling.
    • Women are more prone to autoimmune diseases.
    • Sex hormones may play a role in the pathophysiology of Long Covid, POTS, etc.

• Treatment of Long Covid
  • Rule out cardiopulmonary and thromboembolic disease.
  • Symptomatic treatment if orthostatic intolerance is present such as volume expanders and compression.
  • Graduated exercise being mindful of post-exertional malaise.
  • Immunomodulatory therapies such as IVIG if autoimmune disease if present
  • Symptomatic pharmacologics. An example would be a beta blocker to lower heart rate.
  • Anti-inflammatory medications such as: Low dose naltrexone (LDN), low dose aripiprazole, and a fermented diet.
    • Roughly 50% of patients experience improvement with LDN. It mostly improves fatigue, pain, and brain fog. It does not typically help autonomic symptoms.
    • In Dr. Miglis’ opinion, it is the best drug for Long-Covid patients at this time.
  • Neuromodulators and vagus nerve stimulation
  • Antivirals such as Paxlovid
• Brain fog due to Long Covid is not well understood.
  • Hypotheses include:
    • Neuroinflammation
    • Cerebral hypoperfusion
    • Tissue damage
    • Product of chronic systemic disease
  • A study that looked at MRI’s in patients before and after Covid infections showed gray matter loss in areas that control the olfactory system.

Brain Imaging in Long Covid Cognitive Dysfunction. By Anna Nordvig MD.

• At least 20% of patients report cognitive impairment post-Covid.
• Dr. Nordvig thinks that brain fog is a primary process driven by systemic inflammation.
• 77% of post-Covid cerebrospinal fluid is abnormal which indicates neuroinflammation.
• Most Long Covid patients that have cognitive impairment had mild or moderate Covid.
• 90% of brain fog patients had new or worsened mood symptoms.
• There is evidence of white matter hyperintensities post-Covid. These indicate inflammation.
• There has been occasional evidence of other abnormalities in post-Covid brain scans such as venous sinus stenoses.
• Dr. Nordvig isn’t as alarmed by the grey matter atrophy study as the media portrayed it.
• Specialized testing indicates decreased brain metabolism of glucose and cerebral blood flow abnormalities in Long Covid patients with cognitive impairment.
• Dr. Nordvig thinks patients with POTS or Long Covid should ask for brain imaging if their cognitive dysfunction is debilitating i.e. cannot return to work.

Exercise Intolerance and Chronotropic Incompetence in Long COVID: Insights From the LIINC Study. By Matthew Durstenfield MD.

• LIINC= Long-term impact of infection with novel coronavirus
• This research group did cardiopulmonary exercise testing on Long Covid patients.
  • Their exercise capacity was reduced
    • The most common cause was chronotropic incompetence (60% of patients in this study)
      • Chronotropic incompetence is the inability to increase the heart rate to meet the body’s metabolic demands.
      • A cause of this could be autonomic dysfunction
      • Chronotropic incompetence was associated with worsened heart rate variability which indicates autonomic dysfunction.
    • Inflammatory markers were associated with reduced exercise capacity.
    • Other causes of reduced exercise capacity include: deconditioning, hyperventilation/dysfunctional breathing, changes in peripheral oxygen extraction or utilization, less cardiac stroke volume augmentation during exercise despite normal resting cardiac function/preload failure, and endothelial dysfunction. All of these except deconditioning could be related to autonomic dysfunction.
• Cardiopulmonary exercise testing would be indicated for patients with significant decreases in exercise capacity.
• More research needs to be done to determine how to apply these findings.

Autonomic Rehabilitation Approaches to Long COVID Care. By David Putrino PT PhD.

• Dr. Putrino and his group have found that traditional cardiac rehab is not the proper tool for Long Covid. This is because their symptoms are not correlated with structural cardiac pathologies.
• Recommended starting point for Long Covid management
  • Avoiding known triggers such as:
    • Physical or cognitive exertion- work on pacing/energy conservation strategies
    • Stress- use emotion regulation strategies
      • Note- Stress worsens Long Covid and Dysautonomia symptoms but does not cause them
    • Dehydration- use a hydration plan with electrolytes
    • Weather changes- use environmental management strategies ex. strategies to cope with heat
    • Consuming large meals- use meal planning strategies
    • Premenstrual period- awareness, monitoring, and preparation
    • Alcohol and caffeine- be mindful of consumption
  • Breathwork protocols
    • Used to improve the end tidal CO2 levels in patients that have this issue without dysfunctional breathing patterns.
    • Dr. Putrino recommends the Stasis program.
    • Generally, he suggests 4-7-8 breathing.
  • Autonomic rehabilitation
    • This is not used to treat deconditioning. It retrains the autonomic nervous system to manage autonomic challenges.
    • An example would be a heel slide while laying down. This motion will tend to increase the heart rate and breathwork strategies are employed to control the heart rate response.
    • It is important to screen for post-exertional malaise during this process.
    • Autonomic rehabilitation is not curative, the goal is improvement in symptoms. It has demonstrated improvement in fatigue, number of symptoms, and walking speed over the 3 month program.
    • This work could be beneficial to Dysautonomia in a broad sense as well, not just Long Covid.
• Lauren Stiles said that she hopes the Dr. Putrino and others will develop a new protocol alternative to the Levine Protocol that would be more attainable for where many patients are starting from. The Levine Protocol excludes many patients, especially those with post exertional malaise. This is not to say that the Levine Protocol is “bad”, but it is too high of a starting point for many patients.
• Dr. Putrino recommends the resource Long Covid Physio.

Panel Discussion: POTS and ME/CFS: Similarities, Differences, and Finding the Right Exercise Approach. By Tae Hwan Chung MD, Satish Raj MD, and David Systrom MD.

• In these doctors’ experience, most POTS patients meet ME/CFS criteria. Among ME/CFS patients, roughly 25% have POTS. 95% of ME/CFS patients have abnormally low filling pressures in an upright position and symptoms of orthostatic intolerance
• Post-exertional malaise is the defining characteristic of ME/CFS. The plasma of ME/CFS patients show an inflammatory response to exercise.
• Among these doctors, the crux of their advice on exercise is to meet the patient where they are at. Each patient is unique in their abilities and responses, and therefore the exercise prescription cannot be a “one size fits all” approach. It is also important that changes in exercise are slow and incremental.

Mechanisms of Chronic Pain and Fatigue: Dysautonomia, Inflammation, and Ehlers-Danlos Syndrome. By Jessica Eccles MD ChB PhD.

• The erythrocyte sedimentation rate (ESR) and c-reactive protein (CRP) levels in fibromyalgia and ME/CFS patients are elevated compared controls. This demonstrates inflammation.
  • The levels tend to predict the severity of fatigue and pain.
• There is a tendency among this group of patients to have an autonomic (tilt) induced change in pain and fatigue. This happens among patients whether there is a POTS diagnosis or not.
  • Most likely mechanism of autonomic induced pain would be joint hypermobility.
  • Most likely mechanism of autonomic induced fatigue would be inflammation.
• Gene expression differs between patients in this cohort and controls. It was noted that a difference in gene expression was seen in genes pertaining to mitochondrial and ribosomal function.
• Dr. Eccles’ group is working on a study using brain scans during an autonomic challenge. There would be a special chamber on the lower body mimicking being upright since you cannot tilt a brain scan machine.
• The implications of this study on management would be:
  • Controlling autonomic dysfunction
  • Controlling inflammation
    • More research is needed to see which anti-inflammatory agents would be most effective.
• Dr. Eccles has a background in Psychiatry and clarified that disorders like Fibromyalgia and ME/CFS are NOT psychiatric disorders. They are disorders involving brain and body reactions.

Vagus Nerve Stimulation and Mestinon in POTS. By Andre Dietrich MD PhD.

• Dr. Dietrich is involved with the Italian group looking at transcutaneous vagus nerve stimulation (tVNS) and POTS.
• In prior studies, tVNS has demonstrated the ability to improve inflammation, heart rate variability, POTS symptoms severity, and a modest decrease in heart rate upon standing for POTS patients.
• The most recent study this group did was looking at tVNS and either galantamine or Mestinon and their effects on TNFa levels in POTS patients. TNFa is an inflammatory marker.
  • Galantamine has more central effects (brain), Mestinon has more peripheral effects (cannot cross the blood brain barrier).
  • Among the different combinations, only tVNS plus Mestinon decrease TNFa levels.
  • They used a tVNS device that stimulates the concha cymba and concha cavum parts of the ear because they are innervated by the auricular branch of the vagus nerve.
• Dr. Dietrich does not recommend that patients try to do tVNS on their own without the oversight of a knowledgeable provider. It can negatively impact hearing if used improperly.
• It is difficult to obtain proper devices in the US.
• tVNS may be indicated for other types of Dysautonomia as well, but more research needs to be done.

What were your takeaways from the information provided on Day 2 of the conference?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

I am pumped about this year’s conference. The topics are timely, intriguing, and I am thrilled to share my notes with you all.

Similar to previous years, I attend selected lectures that tend to be more specific in topic and are related to POTS, ME/CFS, and Long Covid. Therefore, these notes are not exhaustive to the entire conference.

Dysautonomia: Associations with Gastrointestinal Function, Joint Hypermobility, and Autoimmunity. By Jay Pasricha MD

• Dr. Pasricha discussed his study on JAG-A patients. JAG-A refers to a constellation of disorders including: joint hypermobility, autonomic dysfunction, gastrointestinal dysfunction, and autoimmunity.
• He treated 42 of his JAG-A patients with IVIG (intravenous immunoglobulin).
• The results showed highly significant improvement in overall quality of life (3-4 points of improvement on a scale that ranges from -7 to 7) and highly significant improvement in each gastrointestinal-related measure.
• The comparison group consisted of 7 “pseudo-controls”. They were not true controls because they were not randomized or blinded.
• Dr. Pasricha’s advice to other physicians is to not dismiss refractory symptoms to be “functional”. Functional GI disorders would include IBS, functional abdominal pain, etc.). He suggests that physicians look for the signs of joint hypermobility and autoimmunity in these patients.
• IVIG treatment may be indicated for GI patients with joint hypermobility or autoimmunity.
• Dr. Pasricha’s advice to patients interested in IVIG:
  • Autoimmunity alone isn’t an indicator that the patients is a good candidate for IVIG. Insurance may balk at this.
  • You need a doctor that is on board to do all the tests necessary to see if there are multiple autoimmune disorders or immune deficiencies.
  • Joint hypermobility may be an easier path to IVIG because IVIG is indicated for connective tissue diseases.
  • Immunologists are most likely to prescribe IVIG and find the criteria necessary for this treatment.
• Lauren Stiles (the president of Dysautonomia International) said that preliminary research indicates that Dyautonomia patients do well with lower dose (1g/kg bodyweight) of IVIG compared to the normal dose (2g/kg bodyweight).
• The gastric emptying test is not very reliable on its own to diagnose motility disorders. It has to be interpreted in the context of what is going on in the patient.
• IVIG ramps down the immune response via modulation, but does not suppress it like traditional immunosuppressants. For this reason, Dr. Pasricha prefers IVIG. That being said, IVIG is not benign and can bear side effects. The most common side effect is headaches.

Autoimmunity and Mast Cell Activation in POTS. By Taylor Doherty MD.

• Dr. Doherty has POTS himself. It developed after an infection he picked up in Europe.
• 20-50% of POTS patients have some sort of acute infection trigger similar to Dr. Doherty. Many different pathogens can trigger POTS..
• Other POTS triggers include: surgery, pregnancy, vaccine, and concussion. This is not an exhaustive list.
• 16% of POTS patients have a comorbid autoimmune disease. Autoimmunity tends to flock together so this is not surprising.
• There are some autoantibodies associated with POTS (ex. angiotensin 2, muscarinic cholinergic, and adrenergic).
  • The types of autoantibodies present differ among patients. This could explain the heterogeneity of POTS symptoms/presentation.
• Potential treatments targeting the autoimmune component of POTS (Dr. Doherty was treated with all of these along the way):
  • IVIG- Has been shown to increase the functional ability and decrease the Compass 31 score in POTS patients.
  • Plasmapheresis
  • Rituximab
• 9% of POTS patients have MCAS
• Omalizumab may be used to treat MCAS. It is a monoclonal antibody treatment.
• The histamine blocker famotidine also stimulates the vagus nerve which attenuates inflammatory cytokine activity.
• Dr. Doherty promotes the “3 leg stool model” for POTS treatment
  • Symptomatic medications ex. beta blocker, ivabradine, etc.
  • Lifestyle ex. Sleep, salt, compression, fluids, diet, etc.
  • Targeting underlying causes ex. autoimmune, EDS, structural, etc.
• SCIG (sub cutaneous immunoglobulin) may be the wave of the future as it can be self-administered and has a lower incidence of side effect compared to IVIG.

If you have attended any of the lectures, what did you learn?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.