Third partial remission (no PEM) post-Moderna mRNA vaccine

[Diwi9]

I had my third booster of the mRNA vaccine by Moderna in late February. A few days after the vaccine, I started to experience my third partial remission within a year after a Moderna booster. The state of New Mexico qualified me for an additional booster because of my health conditions.

I still have ME/CFS symptoms, but I am not experiencing PEM. The effect lasted about one month after my last booster. I have some friends from high school visiting and I way overdid it yesterday, causing a sensory storm. I had to lay down and rest, but felt much improved within a few hours. This morning I woke feeling awful, but it remitted within 20-30 minutes. By all regular measure, based on my activities and events yesterday, I should be in a full on crash.

Also, my POTS has greatly improved during this partial remission. I have not required any medication and have been out of bed and on my feet.

I found this article last night and tried to contact Dr. David Strain about the status of the research he is doing looking into the immune modulatory effects of the vaccines for potential treatment. It's in the UK, if anyone knows of research into this in the US, please advise.

https://inews.co.uk/news/long-covid-restrictions-lifting-treatment-vaccine-jab-monthly-1099974

 

[SWAlexander]

I should be in a full on crash.

Wow, this is very good news. Congratulation, looks like you are on a little smoother road.

I read the article but I'm skeptical about "monthly vaccines could hold cure", especially for people with thrombosis or high fibrinogens.

 

[Treeman]

All I got from the vaccines was a sore arm I'm pleased for you, hope it lasts.

 

[Diwi9]

Wow, this is very good news. Congratulation, looks like you are on a little smoother road.

I read the article but I'm skeptical about "monthly vaccines could hold cure", especially for people with thrombosis or high fibrinogens.

I don't think monthly vaccines are the curative treatment, but obviously there is a mechanism happening that needs exploration in terms of treatment.

 

[Consul]

Very weird since some pwme get worse when they get the vaccine. Any speculations as to why it can have opposite effects?

 

[hapl808]

Very weird since some pwme get worse when they get the vaccine. Any speculations as to why it can have opposite effects?

I think this has been known for awhile. I believe some polls found that about 25% of pwME got worse after vaccination and 25% improved. Not sure if they studied how long the effects of either one lasted.

I've wondered if it's random or related to subsets of the illness. I haven't gotten vaccinated (100% housebound) but I have noticed in the past when I was more moderate that some of my ME/CFS symptoms seemed to dissipate when I got a cold, then returned afterward.

Unfortunately it seems like playing the lottery for us - maybe you'll improve, maybe you'll get worse. For those of us who really can't afford to get worse, that's scary. I can take care of myself, but only barely.

 

[JES]

That's quite impressive. I have also heard about improvement in ME/CFS following vaccination, but usually it has been more short-lived unless person specifically had COVID triggered CFS / long COVID.

I would suspect most remissions are due to the immune system being "kicked" by the vaccine to fight and clear the spike protein. When the immune system gets distracted, like during a cold, quite a few ME/CFS patients report improvement, so most improvements could simply be due to this mechanism rather than anything more specific about the mRNA vaccine helping ME/CFS. There used to be another completely different vaccine on the market against staphylococcus infection that, incidentally, some ME/CFS patients also found helped them if taken monthly (thread).

The spike protein should according to reports be cleared out in around a week, so a month's remission is actually more than the immune system would actively be responding to the vaccine. I suppose there could still be knock-on effects from the vaccine on the immune system lasting well beyond the initial clear-out time.

 

[Gingergrrl]

@Diwi9 Apologies if you have explained this elsewhere but (prior to the vaccine) did your illness present in the way that you were immuno-compromised or prone to getting infections? I know that the word "sub-groups" is not perfect but I'll use it here for lack of a better term.

There seems to be a sub-group in which the person has an immune system which is skewed toward immune deficiency and tests low for IgG Sub-Classes and high for viral titers and has flu-like symptoms, fevers, sore throats, swollen lymph nodes, etc. This sub-group would easily get colds, flu, and other infections when exposed.

Then the other sub-group would be someone who has an immune system that is skewed toward autoimmunity and allergic reactions. They would not test low for IgG sub-Classes, or have positive viral titers, and would often have a positive ANA Titer and test positive for many autoantibodies. They would not have flu-like symptoms and would not ever get a cold, flu, infection, and not get fevers. Most likely they would be skewed toward allergic reactions & anaphylaxis and/or MCAS (plus other various autoimmune diagnoses).

Regardless of what we label the illness, I am skewed toward the second group and have not had a traditional cold or flu since 2013 (and in spite of being directly exposed to many infections since 2013, I did not catch them). The treatments that led to my remission (and the treatments that I do best with in general) are immuno-suppressants. For me, I cannot do anything like a vaccine that is immuno-stimulatory b/c it could bring my autoimmunity out of remission (which took three years of infusions to fully put it into remission).

I was just curious if you were in the first sub-group that I mentioned vs. the second (at baseline prior to getting the vaccine)? I realize this is just an informal description and I hope that my question made sense!

 

[Wishful]

Any speculations as to why it can have opposite effects?

The state of our immune systems certainly affects our ME symptom severity. Anything that alters that can affect our ME state. However, it's a complicated interaction between several systems, so it will have different effects for different individuals.

@Diwi9 , have you had a similar response to any other immune triggers? Viral infections or whatever? The few viral infections I've had since developing ME have only made my ME symptoms temporarily more severe. Type I allergies and bacterial infections had no effect on my ME. My ME seems to respond to t-cell activation.

 

[SWAlexander]

Then the other sub-group would be someone who has an immune system that is skewed toward autoimmunity and allergic reactions. They would not test low for IgG sub-Classes, or have positive viral titers, and would often have a positive ANA Titer and test positive for many autoantibodies. They would not have flu-like symptoms and would not ever get a cold, flu, infection, and not get fevers. Most likely they would be skewed toward allergic reactions & anaphylaxis and/or MCAS (plus other various autoimmune diagnoses).

That would be me. One other symptom is remarkable. I´m always cold, even in summer since early childhood. I never get a high fever (no more than 39 C) even when I had sepsis after surgery.

 

[Diwi9]

Very weird since some pwme get worse when they get the vaccine. Any speculations as to why it can have opposite effects?

I don't have an explanation. Many people with ME have reported improvements after contracting a flu or other bug too. I have experienced a lightened ME load for a few days after getting over a cold/flu over the years. There is something to shifting the immune system's status quo. And, as we all know, we are not all the same. For example, a glass of wine improves my symptoms, where others have zero tolerance. FWIW - my illness fulfills the ICC and CCC criteria and I experience additional neurological symptoms in addition. The course of my illness has been relapsing/remitting over 13 years now.

 

[Diwi9]

IUnfortunately it seems like playing the lottery for us - maybe you'll improve, maybe you'll get worse. For those of us who really can't afford to get worse, that's scary. I can take care of myself, but only barely.

This is the injustice of the neglect of ME, when we are told to "discuss it with your medical professional" and they have no clue...and we are left to take a gamble. In this instance, I got damn lucky and I want someone to take an interest in my experience and figure out why.

 

[Diwi9]

The spike protein should according to reports be cleared out in around a week, so a month's remission is actually more than the immune system would actively be responding to the vaccine. I suppose there could still be knock-on effects from the vaccine on the immune system lasting well beyond the initial clear-out time.

I have a very intense response to the vaccine that starts about 8 hours after the injection and lasts 36 hours after symptoms begin. Since I've had three boosters, it's become a predictable pattern. I spike a fever ~102 and develop body wide muscle/joint pain and burning sensations over my entire all my skin and scalp. It's hell for about 24 hours after which the process fades and ends after about 36 hours. Within a few days I can feel the intensity of my ME start to remit and even though I may still feel fatigue (normal people fatigue), have pain, and do activities that spike my heart rate, I do not crash.

 

[GlassCannonLife]

I have a very intense response to the vaccine that starts about 8 hours after the injection and lasts 36 hours after symptoms begin. Since I've had three boosters, it's become a predictable pattern. I spike a fever ~102 and develop body wide muscle/joint pain and burning sensations over my entire all my skin and scalp. It's hell for about 24 hours after which the process fades and ends after about 36 hours. Within a few days I can feel the intensity of my ME start to remit and even though I may still feel fatigue (normal people fatigue), have pain, and do activities that spike my heart rate, I do not crash.

So fascinating! I feel like you should contact some researchers about this and they could test what happens to you

 

[Diwi9]

@Diwi9 Apologies if you have explained this elsewhere but (prior to the vaccine) did your illness present in the way that you were immuno-compromised or prone to getting infections? I know that the word "sub-groups" is not perfect but I'll use it here for lack of a better term.

There seems to be a sub-group in which the person has an immune system which is skewed toward immune deficiency and tests low for IgG Sub-Classes and high for viral titers and has flu-like symptoms, fevers, sore throats, swollen lymph nodes, etc. This sub-group would easily get colds, flu, and other infections when exposed.

Then the other sub-group would be someone who has an immune system that is skewed toward autoimmunity and allergic reactions. They would not test low for IgG sub-Classes, or have positive viral titers, and would often have a positive ANA Titer and test positive for many autoantibodies. They would not have flu-like symptoms and would not ever get a cold, flu, infection, and not get fevers. Most likely they would be skewed toward allergic reactions & anaphylaxis and/or MCAS (plus other various autoimmune diagnoses).

Regardless of what we label the illness, I am skewed toward the second group and have not had a traditional cold or flu since 2013 (and in spite of being directly exposed to many infections since 2013, I did not catch them). The treatments that led to my remission (and the treatments that I do best with in general) are immuno-suppressants. For me, I cannot do anything like a vaccine that is immuno-stimulatory b/c it could bring my autoimmunity out of remission (which took three years of infusions to fully put it into remission).

I was just curious if you were in the first sub-group that I mentioned vs. the second (at baseline prior to getting the vaccine)? I realize this is just an informal description and I hope that my question made sense!

Hi @Gingergrrl - I hope I answer your questions correctly because it is late and I have become overwhelmed by the ME/CFS categorizations and random research findings over the years. I do believe in subsets, but I don't think I fit cleanly in any or haven't had the proper follow up diagnostics over the years.

During my relapse era of 2016/17, I fit the first profile you listed, but I was not low IgG. I had all the flu-like symptoms. I have done multiple courses of anti-virals over the years with improvement at times. I develop canker sores in my mouth (not cold sores on the lips) every time I get off of anti-virals.

Since 2016, I have rarely gotten sick despite being around sick people and when I did, it didn't follow a regular symptom course, but after each illness I felt improved for up to two weeks. I would like to get my ANA labs redone, in the past I believe the only high markers I had were sicca-related. One clue for my subset may be that painkillers don't really touch my pain but hydrocortisone does help...the joint/soft tissue/spinal facet pain.

 

[Diwi9]

The state of our immune systems certainly affects our ME symptom severity. Anything that alters that can affect our ME state. However, it's a complicated interaction between several systems, so it will have different effects for different individuals.

@Diwi9 , have you had a similar response to any other immune triggers? Viral infections or whatever? The few viral infections I've had since developing ME have only made my ME symptoms temporarily more severe. Type I allergies and bacterial infections had no effect on my ME. My ME seems to respond to t-cell activation.

I have had improvements over the years to anti-virals and SIBO treatment. Hydrocortisone has helped my pain symptoms, but I then had to get back on anti-virals. Nothing has been as profound as the the post-mRNA vaccines. The baseline of my ME seems to have improved over the past year that I have been getting the boosters. I still have lots of symptoms, especially pain, but life and the ability to be a bit more adventurous with activities is not met with PEM. Given my experience, I am sure this window will end in a few days or weeks.

 

[Diwi9]

That would be me. One other symptom is remarkable. I´m always cold, even in summer since early childhood. I never get a high fever (no more than 39 C) even when I had sepsis after surgery.

I had lots of fevers, MCAS, and SIBO at the beginning of my 2016 relapse. Those have mostly remitted and only happen here and there now, especially during PEM. I've never had anaphylaxis. My ME symptoms regularly skew toward neurological issues: sensory, proprioception, cognitive/memory, dysautonomia, and muscle issues in my arms. When my condition worsens, I get canker sores, swollen lymph nodes, sore throat, and fevers. I always have a burning pain in my upper spine and neck...that is constant. I have been DX'd with CCI, but did not respond to traction after three courses of PT over a year and a half. My personal experience is that this is an immune mediated neurolgical disorder. When I over exert, I feel immunological symptoms followed by neurological ones. The regular pain I feel in my back feels inflammatory. The joint pain feels inflammatory. The muscle pain feels metabolic/neurologic. FWIW - I feel like my general pain states have worsened since receiving mRNA vaccine/boosters, even while experiencing remission from PEM.

 

[Diwi9]

So fascinating! I feel like you should contact some researchers about this and they could test what happens to you

I have tried to contact Dr. David Strain over multiple platforms and have contacted my ME/CFS specialist, Dr. Chheda. I haven't received a response from either. I would really like someone to take an interest in my vaccine response since the pattern is clear. My PEM in the past has been very severe, albeit each incidence is not as long as many on here, mine average 3-4 days, when I've required antivirals, my overall baseline has dropped significantly and I have been bed bound 20-22 hours per day for months at a time. I'm seriously tired of being sick, paying hundreds of dollars for medical insurance each month, paying specialists hundreds of dollars out of pocket for each consultation, and having zero explanation for the big picture.

 

[GlassCannonLife]

I have tried to contact Dr. David Strain over multiple platforms and have contacted my ME/CFS specialist, Dr. Chheda. I haven't received a response from either. I would really like someone to take an interest in my vaccine response since the pattern is clear. My PEM in the past has been very severe, albeit each incidence is not as long as many on here, mine average 3-4 days, when I've required antivirals, my overall baseline has dropped significantly and I have been bed bound 20-22 hours per day for months at a time. I'm seriously tired of being sick, paying hundreds of dollars for medical insurance each month, paying specialists hundreds of dollars out of pocket for each consultation, and having zero explanation for the big picture.

Oh, that sucks. Yes it's a very interesting pattern and surely it would help shine a light on what causes or perpetuates the manifestation of PEM, at least in some pwME.

 

[Wishful]

Given my experience, I am sure this window will end in a few days or weeks.

Noooo! Don't lead yourself into psychosomatic worsening. Think happy thoughts of it being a permanent improvement!

Good luck with that. My ME never listens to me.