Could the anxiety found in long COVID and ME/CFS be due to MCAS?

[Hip]

If you read the Reddit long COVID forum r/covidlonghaulers, it is clear that generalised anxiety disorder (GAD) is a common comorbidity in LC. Many regular ME/CFS patients also suffer from GAD.

I wonder if the anxiety symptoms experienced by many long COVID and ME/CFS patients might be due to mast cell activation syndrome (MCAS) in some cases?

MCAS is common in long COVID according to a study, and MCAS can be found in regular ME/CFS also.

One study says the neuropsychiatric symptoms of MCAS can include:

Neuropsychiatric Symptoms of MCAS

• Anxiety
• Panic
• Depression
• Anger or irritability
• Mood lability
• Obsession–compulsion
• ADHD

The study also says that these neuropsychiatric symptoms of MCAS can be refractory to standard psychiatric treatments. So that means if anxiety or depression are due to MCAS, regular treatments (drugs or supplements) may not treat these mental symptoms adequately.

But if MCAS is the cause of the anxiety, depression or other neuropsychiatric symptoms in long COVID or ME/CFS, then possibly the usual MCAS treatments (like antihistamines, and mast cell stabilisers like ketotifen) might be able to alleviate these psychiatric symptoms more effectively.

So any LC or ME/CFS patients with anxiety or depression might look into over-the-counter H1 antihistamines like cetirizine or loratadine.

Note MCAS usually manifests with physical symptoms (listed below), so if someone is experiencing neuropsychiatric symptoms of MCAS, then there will usually be some physical MCAS symptoms alongside the mental symptoms.

Physical Symptoms of MCAS

These are some of the physical symptoms of MCAS. Note that the MCAS symptoms presenting in one sufferer may be very different from the symptoms presenting in the next, as MCAS symptoms vary widely, depending on which organ systems are affected.

• Skin: flushing/redness, hives or wheals, itching with or without a rash, swelling.
• Gastrointestinal: bloating, stomach pain/cramps, reflux, nausea, feeling or being sick, diarrhoea, constipation, dumping syndrome.
• Respiratory: sore throat, hoarseness, wheezing, shortness of breath, throat swelling, stridor.
• Cardiovascular: chest pain, low blood pressure, fast heart rate, fainting or light headedness.
• Naso-ocular: nose congestion, eye watering and itching.
• Neurological: headache, brain fog, numbness, pain or tingling skin, anxiety, behavioural issues, rages.
• Musculoskeletal: joint and muscle pain, osteoporosis (brittle bones), loss of bone mass
• Genital and urinary: such as genital pain or swelling, pain when urinating, vaginal pain, discharge or itching, bladder urgency or loss of control.
• Extreme tiredness.
• Food allergies or intolerances.
• Anaphylaxis.

Source: here.

 

[Springbok1988]

I started suspecting this when I began using cromolyn sodium nasal spray for allergies. Every time I use it, my body relaxes, my stomach starts to empty, and I feel calm.

 

[Hip]

I started suspecting this when I began using cromolyn sodium nasal spray for allergies. Every time I use it, my body relaxes, my stomach starts to empty, and I feel calm.

That's very interesting.

In my case, ever since I caught COVID around 3 years ago, I've found that the anti-anxiety treatment which worked so well for my anxiety (the NAG protocol in this post) stopped working, which is really frustrating, as NAG worked amazingly well for me for 10 years.

I have been trying to figure out why COVID has created this treatment-resistance form of generalised anxiety disorder. The idea that COVID might have led to MCAS is one possibility I am exploring.

 

[kushami]

Decreased blood flow to the brain could be another factor:

”Mast cell disorders are associated with decreased cerebral blood flow and small fiber neuropathy”
https://pubmed.ncbi.nlm.nih.gov/34648976/

The authors talk about cognitive impairment, rather than neuropsychiatric symptoms, but it’s my pet hypothesis that once researchers and clinicians can measure cerebral blood flow we are going to find out that decreased cerebral blood flow can cause neuropsychiatric symptoms, or at least that it can exacerbate those symptoms.

 

[Dude]

Since my condition became severe, I have developed several MCAS symptoms, including skin redness, reflux, urological pain, and that anxious feeling. At first, I had no idea where these new symptoms were coming from. It was only by chance that I came across MCAS, which led me to suspect it might be the cause.

Four days ago, I started taking MCAS medications (desloratadine, famotidine, ketotifen, and quercetin). It will likely take a few weeks before I can draw any real conclusions, but we’ll see how it goes.

 

[Treeman]

It’s also recorded that auto immunity causes anxiety.

 

[Norwegianlad]

Since October or so, I suddenly had new symptoms that all fitted MCAS and did experience more anxiety since then.

What I noticed the most was, that for the many past years, I sometimes would experience some anxiety, often after going from a warm environment (lets say my bedroom where I spent hours) to a hallway/bathroom where its cold.

I have had this for so long, these attacks that suddenly change how I feel and make me anxious. Now due to all my new symptoms coming so all of the sudden (after 10 years of ME/CFS) and them all fitting MCAS, and this what I just described becoming much more sensitive, I believe that it was MCAS all along these past years that caused it.

So I believe this is spot on. And now that I know it's probably this what causes my anxious feeling, I am more confident about not worrying about it and it helps me relax again.

My theory is that MCAS causes vasodilation. And for years I never had much vasodilation, but was rather a vasoconstrictor, but now since all those new symptoms started, I am a (over?) vasodilator..

I'm too crash too read your entire post, but wanted to add this since the title exactly was what I have been thinking for the past 3-4 months.