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Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms

Hip

Senior Member
Messages
17,802
So you don't think your issue is the same as the Chinese "virus"?

There are a lot of symptom similarities, but also some symptom differences, between my virus and the Chinese virus. So hard to know if it is the same virus or not.
 
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56
@Hip Wow this story is crazy. How are these people now in 2022, do they still have these issues or most of them recovered?
 

ChrisD

Senior Member
Messages
472
Location
East Sussex
Not sure if relevant, but after telling my story on Twitter about getting a virus in winter 2015 which later divulged to be Coxsackievirus, and resulted in M.E.

Several people replied and contacted me about getting Coxsackie at the same time. so I believe there was an endemic outbreak of it around then. A silent wave. At least in the UK.
 

Hip

Senior Member
Messages
17,802
@Hip Wow this story is crazy. How are these people now in 2022, do they still have these issues or most of them recovered?

Many of the chronic health conditions that were triggered in people by my virus have not gone away, but are being managed.

Furthermore, people who come into contact with a person or household that has been infected with this virus may also catch it, even years later, and then themselves go on to develop physical or mental symptoms.

People who caught this nasty coxsackievirus B4 virus years ago can still spread it to further people, even after the acute infection is over, because it tends to remain as a low-level chronic infection in the throat or nasal cavity for many years, which means that saliva or nasal secretions may contain the virus.

It's not very contagious in the chronic phase; it requires extended social contact to spread; but if you live in a household of infected people, the virus will pass to you after a few months, I have observed.



One young guy in his 20s with everything to live for caught this virus after staying in a household of infected people for several months. He then developed serious major depression which is ongoing now for over a decade, and this totally changed his life. He became a recluse, dropping out of normal society, living on his own away from people, and developing very negative attitudes about life and other people.

Exactly the same occurred with a 50 year old guy. He was a sociable, chatty, friendly person, but after extended social contact with an infected person, he developed major depression, left his job, and went to live in a very isolated part of the UK, with no neighbours around him for miles.



If I won the lottery, I would personally commission a study to investigate whether the epidemic of anxiety and depression in the UK, which has been ongoing for the last decade or so, is linked to my virus.
 
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@Hip Unbelievable. Actually there is a real epidemic of anxiety and depression in the western world right now and I highly believe these viruses are the main cause.
Before having CFS I had 2 years of severe IBS and depression/anxiety and this is the only indication that makes me think I am in the entero subgroup.
By the way, looks like this virus has evolved in such a way to infect the most privileged parts of the CNS in order to hide from the immune system.
 
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Hip

Senior Member
Messages
17,802
@Hip Unbelievable. Actually there is a real epidemic of anxiety and depression in the western world right now and I highly believe these viruses are the main cause.

I wrote to over a dozen top academic virologists around the world, detailing the symptoms of my virus, and suggesting it could be behind the anxiety and depression epidemic, but sadly most did not even reply to my email.

These mental health conditions are so insidious, because very few people would guess that they might be caused by a virus.

It's very sad that I have this knowledge about a likely viral cause of the current mental health epidemic, yet I cannot convince anyone to investigate this cause further.

A completely new genotype of coxsackievirus B4 was sequenced by researchers in China in 2014 (paper here). It is called genotype V. I wonder whether this new version of CVB4 is the one I caught.
 

hapl808

Senior Member
Messages
2,011
I wrote to over a dozen top academic virologists around the world, detailing the symptoms of my virus, and suggesting it could be behind the anxiety and depression epidemic, but sadly most did not even reply to my email.

These mental health conditions are so insidious, because very few people would guess that they might be caused by a virus.

It's very sad that I have this knowledge about a likely viral cause of the current mental health epidemic, yet I cannot convince anyone to investigate this cause further.

Sad and completely and totally unsurprising. In 50 years maybe they'll figure out a link and there will be a bunch of breathless papers exclaiming, "No one had any idea!" They will take a victory lap and tire themselves out with all the attaboys.

The same way I sometimes see my ID doctors on TV lately saying, "We've never seen a virus that causes these long term symptoms - it's unprecedented." Literally when I sat in their office months before the pandemic describing that same behavior and symptoms and they just dismissed me and condescendingly told me viruses don't work like that.
 

hapl808

Senior Member
Messages
2,011
These mental health conditions are so insidious, because very few people would guess that they might be caused by a virus.

My own guess is it's not just viral, but that ANY autoimmune or ANS trigger could potentially cause mental health issues. If you look at the COVID vaccine trials in adolescents, there are some disturbing signals of mental health problems, but since they don't think vaccines would do that, they just dismissed them as unrelated. Even though they already know there can be mental health issues caused by COVID itself in an unknown mechanism, they declared confidently that the vaccines wouldn't work like that.

The hubris of physicians is one of the traits that bother me the most. Even with areas they barely understand, they are perfectly confident (no matter how many times they are wrong).
 

Hip

Senior Member
Messages
17,802
The hubris of physicians is one of the traits that bother me the most.

Doctors are the lowest level on the medical research hierarchy. Many do not engage in active research, and even when they do take an interest in research, like Dr Chia, their influence is limited, as they may not have the funding or the resources of a university research department.

The people you need to speak to are the academic researchers, the professors of medicine, and the pharmaceutical researchers. These are higher up on the hierarchy, and have more power, resources and influence.

But unfortunately each researcher has his or her own area of interest and knowledge, and they will not necessarily step outside that area. So you have to find a researcher who has knowledge and interests aligned to your own interest.

In this case, we are talking about finding a virologist that has special interests in the way that viruses can cause mental symptoms or mental health conditions. That is a tall order, since there are very few virologists about these days (though hopefully the COVID pandemic will reignite interest in this field), and even fewer who might have special interests in the link between viruses and mental health.

And getting funding is a nightmare for even the top scientists. So if you found a researcher interested in exploring the viral linked to mental health, that researcher would then have to convince grant authorities that their proposed research project is worth funding.

Since most medical scientists do not subscribe to the pathogen theory of chronic disease (mental or physical), it would be very hard to convince funding bodies to provide a grant for such a study. Lots of scientists have great ideas, but cannot get the funding, because they cannot convince the funding bodies that their ideas are worth exploring.

Even greater problems arise from the difficulty in detecting enterovirus. We know from Dr Chia's work that only antibody tests by the neutralisation method are sensitive enough. That is for ME/CFS patients, who have a widespread enterovirus infection. But would such methods be sensitive enough in someone with only anxiety or depression, who may not have such a widespread infection?

So you can see the considerable issues involved in trying to get a study done on the possible connection of coxsackievirus B4 to the current anxiety and depression epidemic.
 

hapl808

Senior Member
Messages
2,011
Since most medical scientists do not subscribe to the pathogen theory of chronic disease (mental or physical), it would be very hard to convince funding bodies to provide a grant for such a study. Lots of scientists have great ideas, but cannot get the funding, because they cannot convince the funding bodies that their ideas are worth exploring.

Agreed. This is the fundamental problem - the system itself perpetuates the entrenched dogma. My own experience is that researchers have a better sense of the scientific difficulties in studying illness, but also awareness of the financial and academic obstacles that push them consciously or subconsciously in a certain direction.

However, none of that uncertainty makes its way to doctors who still use data from the year they graduated medical school as the absolute truth. Another fundamental problem is doctors are the lowest level of that hierarchy, and that system is also designed to prevent them from even attempting to treat anything where they don't already have the answer sheet. You have GERD? Here's an H2 and a PPI. Attempting any logical but unvalidated treatment with uncertainty and caution is an anathema to how they practice (for 99% of physicians, or 100% of physicians who take insurance).

If somehow we could look beyond the system, there are so many fascinating signals to examine.

In the Moderna trial for adolescents, there were six reported cases of suicidal ideation or suicide attempts. Now in a trial of a few thousand people maybe that's normal, but ALL six cases were female vaccine recipients, not a single reported case in the placebo arm (which admittedly was smaller than the vaccine arm because of trial design). Now obviously that's not enough people to declare a causal link with that study size (not a significant enough result), but I doubt anyone is even looking at it. After they missed menstrual changes in the adult studies, maybe they should be collecting a bit more data?

To head off any discussion - I am obviously not making a comment on the efficacy of vaccination, but just that doing things that affect immune health may possibly affect mental health as well.
 

BrightCandle

Senior Member
Messages
1,134
One thing that struck me about Doctors is how formulaic it is. When I was trying to get a hormone test I was explaining why given my symptoms they needed to test T4/T4R/T3/T3R alongside the usual TSH and while they were aware of them and the impact, all potential thyroid issues = TSH and nothing else, that was standard. They could know it wasn't likely to expose the problem from their training but were still unable to break out of the formula even if the lab would allow them to do it. There are a lot of dumb restrictions placed on GPs that stop them doing more specialist tests that the lab can do but they can't order even if they know better. To some extent issues with doctors are systemic problems, they have been disempowered from anything but a formula diagnostic and have no choice but to randomly choose a specialist when their formula is exceeded. Then the specialists also have their standard of care and can't deviate from it either, no one has any time to try and actually investigate. So you get triaged out of the system as someone they can't help even if they actually could investigate more based on their knowledge. The system is broken because it doesn't allow them to proper diagnose and treat complex patients.
 

Hip

Senior Member
Messages
17,802
Let's keep to the subject of this thread, which is about the nasty physical and mental diseases that a possibly new type of coxsackievirus B4 can cause.
 

hapl808

Senior Member
Messages
2,011
Let's keep to the subject of this thread, which is about the nasty physical and mental diseases that a possibly new type of coxsackievirus B4 can cause.

Sure. My point is just that with the low hanging fruit of existing trials or research studies where we could be collecting more data to help generate a hypothesis in the future, we're not even doing that. So I don't really expect anything to change because even a well funded and well meaning researcher would be starting from scratch.
 
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9
A Wave of Ill-Health Due to Coxsackievirus B Spreading from Person to Person

I thought it would be of interest to list the illnesses, serious and mild, that appeared in over 30 friends and family who caught the same virus as me, which blood tests, incubation period and symptoms indicate is likely the enterovirus coxsackievirus B4 (though it may be a nastier than usual strain of CVB4 — a completely new strain of CVB4 was discovered in China, and maybe that is the virus I caught).

In my case, this enterovirus I caught triggered depression, blunted emotions, anhedonia, generalized anxiety disorder, chronic sore throat and periodontitis among other symptoms, and later ME/CFS appeared after I suffered an episode of meningitis and/or encephalitis likely caused by this same virus.

But in the 30+ people who caught my virus during this outbreak, a whole array of symptoms and illnesses manifested soon after they contracted it. In some people, medically diagnosed chronic physical and mental illnesses appeared; and in other cases, chronic subclinical physical and mental symptoms appeared that although not serious, reduced the quality of life, and impaired the mental health and mental normalcy of those individuals.

As I observed all this happening, I was astounded how coxsackievirus B can cause not only overt disease, but also cause lots of permanent subclinical symptoms. We are more aware of the overt illnesses that viruses can cause or are associated with, but there is very little research investigating how such infections can cause permanent subclinical complaints.

The purpose of this thread is to provide some case evidence of how frequently coxsackievirus B can trigger serious illnesses in a small percentage of people, and also cause milder subclinical symptoms in many more individuals.

So here is a list of the overt illnesses and permanent subclinical symptoms that appeared in various friends and family in the first few years of acquiring this Coxsackie B virus (for anonymity reasons, I have named these individuals as Person 01, Person 02, etc):


Illnesses and Subclinical Conditions Appearing in the People Who Caught My Enterovirus

The following illnesses and conditions typically developed usually in first few years of catching my Coxsackie B4 virus (illnesses in bold text were properly medically diagnosed by a doctor; mental health conditions are in purple text):

Person 00 ➤ Myself: I developed depression, substantial generalized anxiety disorder, anhedonia, blunted emotions, and later after an episode of viral meningitis, developed ME/CFS.​
Person 01 Developed Sjögren's syndrome (an autoimmune condition linked to coxsackievirus B4).​
Person 02 Developed sound sensitivity (hyperacusis), and cold hand and feet, and a chronic sore throat. Years later developed mitral valve prolapse, which is linked to CVB​
Person 03 ➤ Developed glaucoma and hypothyroidism after a few years with the virus​
Person 04 ➤ Developed glaucoma after a few years with the virus​
Person 05 ➤ No specific symptoms, but like most others with the virus, developed permanently increased fatigue, and developed a more negative and cynical personality
Person 06 ➤ Developed gluten intolerance that was not present before catching the virus​
Person 07 ➤ Became depressed and negative, suddenly finding it hard to relate to ordinary people, and literally dropped out of mainstream society as a result​
Person 08 Complained of reduced emotions
Person 09 An extremely intelligent scientific and techie person, complained of intellectual atrophy, and his mind going downhill; the precision work he used to do with his hands became clumsy​
Person 10 Experienced a ruptured bowel requiring surgery and was ill with such bowel issues for several years​
Person 11 Previously a bubbly personality, became more stressed at work (lowered stress tolerance), less emotional, less bubbly, less sociable and more fatigued. Dupuytren's contracture
Person 12 An intelligent person with excellent general knowledge, developed mild memory and word recall problems
Person 13 Developed type 1 diabetes, although this occurred over a decade after catching the virus (note that CVB4 as well as CVB1 are linked to triggering T1D)​
Person 14 Developed some anhedonia, finding he no longer enjoyed the practical home DIY tasks he once always loved doing. These task became too much effort, whereas previously he loved to get involved with them​
Person 15 Had a heart attack with myocarditis around 4 years after catching the virus. A few years later developed depression
Person 16 A sociable character and with a strong masculine emotional backbone to his personality, but lost much of his personality strength very soon after contracting the virus, and then became uncharacteristically insular and unsociable
Person 17 Developed hypothyroidism after a few years with the virus, and became more complaining, and more easily irritable after acquiring the virus​
Person 18 Was always a motivated hard worker putting in long hours, but after catching the virus found he did not have enough energy to do his job, so had to change profession to something easier​
Person 19 Needs to sleep with earplugs due to sound sensitivity (hyperacusis)​
Person 20 Died of a respiratory lung infection, possibly caused by the virus, or facilitated by its apparent immunosuppressive effects (but this person was very elderly)​
Person 21 Developed some issues with their ears, which the doctors said was due to catching a nasty virus​
Person 22➤ Experienced generally reduced mental health, and needs to sleep with earplugs due to sound sensitivity. An easy going socializer, became a little uncomfortable socializing with friends
Person 23 Developed recurrent gastritis around eight years after catching this chronic viral infection​
Person 24 Developed significantly reduced emotions after catching the virus (this person said they felt they were become autistic due to the lack of emotions)​
Person 25 Developed chronic generalized anxiety disorder and depression
Person 26 An energetic, thrusting and positive personality, always doing lots, after catching the virus slowly changed into to a negative person, with generally negative views on the world, and now does very little. Became sound sensitive, and sensitive to information overload (eg, finds it mentally unpleasant when two people are speaking at once). Developed cold hands and feet​
Person 27 A very sociable and outgoing person, suddenly complained of parties and social events being a bit unpleasant due to noise and commotion (sound sensitivity)​
Person 28 Healthy as an ox, with no known health problems, had a sudden and fatal heart attack
Person 29 Developed some anhedonia, so losing his interest and excitement in activities (suddenly saying "it does not interest me, I've done it before")​
Person 30 Within months of catching the virus suddenly hit with a heart attack, chronic myocarditis, perforated bowel that required emergency surgery, and chronic depression
Person 31 Had a heart attack soon after catching the virus​
Person 32 Developed glaucoma after a few years with the virus​
Person 33 Developed severe generalized anxiety disorder after catching the virus, and anxiety so bad that this person shut themselves away in their own home, unable to see any visitors due to the extreme mental tension from the anxiety disorder. After a year or two the anxiety improved​
Person 34 On first contracting the virus, had severe body-wide inflammation requiring long term corticosteroids for several months​

The above list details the specific diseases and symptoms that appeared in various individuals. A few people not in this list also caught my virus, and also developed some of the general symptoms that my virus would typically cause (symptoms detailed in the next section).



General Permanent Subclinical Symptoms My Virus Precipitated in Most People

The permanent mostly subclinical effects that my enterovirus seemed to have on most people are the following:

Mildly increased fatigue is common: after catching this enterovirus, previously energetic people would often return home from work, have supper, and then fall asleep exhausted in front of television.​
• Some mild anhedonia hits some people (anhedonia is the loss of interest in things once found enjoyable, due to the brain finding life’s activities less rewarding and pleasurable).​
• Some mild loss of libido is quite common after catching this virus (less interested in sex).​
• A blunted or enfeebled emotional response (known as "blunted affect") is quite common, making relationships and activities less heartfelt.​
Values that previously were important to a person may lose some of their significance and meaning. This might be due to weakened emotions (since values may be to be underpinned by emotion).​
• People may become less inclined to socialize, and become more insular: they may loose some of the enjoyment normally derived from friendship and the company of others, and instead of the warmth of friendship, may experience increased irritability with people, or become more cranky or niggly.​
Decreased ability to cope with stress.​
Sound sensitivity (hyperacusis) may appear after a few years with this virus (this is where the brain finds it harder to cope with certain sounds and noises, which seem to get "under the skin").​
"Tip-of-the-tongue" phenomenon — the inability to retrieve a word or name from memory during conversation (this is known as anomia). These word recall problems are relatively mild, and tend to appear in most individuals with this virus after a few years. It is interesting that anomia is also a symptom of ME/CFS.​
Memory also seems to become poorer in a few people.​
• Mild depression may appear in some people.​
• About two-thirds of people will have permanent constant congested nose / post nasal drip with unusually thick mucus once they catch this virus, and around one-third will have a chronic sore throat. These symptoms may remain for over a decade.​
• Some partial hearing loss may appear in the elderly; in younger people too, hearing becomes noticeably less acute. Some tinnitus may appear.​
• An unusual fine crêpe paper-like skin wrinkling will appear all over the body in more-or-less everyone with this virus who is over 30 years old or so; this symptom manifests more severely in the elderly, but does not seem to manifest in people younger than around 30. Pictures of this skin wrinkling are found on my website.​
Weight gain may appear after a few years with this virus — but mainly only on the abdomen (central obesity).​
• A very sudden onset of periodontitis can occur within the first few months with this virus, even in those with previously excellent oral and dental heath. More brown plaque deposits may also appear on the teeth.​
• People may get cold hands and feet (lack of blood to the peripheries) manifesting after a few years with this virus.​
• A few people get recurrent stomach aches that come back every few weeks or months. This symptom tends to occur more in the early years with the virus, and then disappears later. One infected person developed gastritis years later.​
• Mild but permanent odorless flatulence and bloating is very common. This is definitely a long term symptom: it is still be present in people even 15 years after first catching the virus. Since a main reservoir for enterovirus is the intestines, I think the flatulence may be a result of the chronic presence of enterovirus in the bowels.​

So you can see that the coxsackievirus B4 I caught had a tendency to cause overt illnesses such as sudden heart attacks, chronic myocarditis, type 1 diabetes and in my case myalgic encephalomyelitis (all of which are known to be linked to coxsackievirus B).

Then there was a high incidence of ruptured bowel (gastrointestinal perforation), glaucoma, hypothyroidism, periodontitis, depression and generalized anxiety disorder appearing soon after the 30+ people caught this virus, but these illnesses have not been linked to coxsackievirus B in published studies (so in future researchers might want to examine whether coxsackievirus B is linked to these conditions).

And in addition, this Coxsackie B4 virus also caused many people to develop permanent subclinical conditions such as mild fatigue, reduced emotions, mild anhedonia, a more negative and cynical personality, loss of libido, sound sensitivity (hyperacusis), lowered stress tolerance, intellectual atrophy, mild worsening of memory and "tip-of-the-tongue" word recall problems, circulation problems (cold hands and feet), chronic sore throat and flatulence.


I was astounded not only by the large amount of overt and subclinical illnesses my virus triggered in friends and family, but also equally astounded that the medical profession have generally not been able to track the variety of ill effects that enteroviruses like coxsackievirus B and echovirus produce as they spread in the community.

Although having said that, I think it's quite hard to make the sort of observations I was able to make, unless you are, like me, intimately situated at the epicenter of spread of a virus. And even then it is hard, because normally you would not know who has caught the virus. But with my particular virus, I was able to track its person-to-person spread relatively easily because of its characteristic symptoms such as the unusual fine crêpe paper-like skin wrinkling, or the chronic sore throat / chronic nasal congestion symptoms. Also it's extremely rapid incubation period of 12 hours made it easier to track.



Further Information

My website describing my virus and its symptoms can be found here: https://chronicsorethroat.wordpress.com


On the subject of diseases precipitated by coxsackievirus B spreading through groups of people, the late Dr John Richardson was a GP who studied ME/CFS and coxsackievirus B for nearly 50 years, and was an keen observationist who would often notice how once coxsackievirus B got into a family unit, it would spread from one family member to the next, causing perhaps ME/CFS in one person, a heart attack in the next, myocarditis in a third, pleurodynia in a fourth, and maybe some mysterious health problems in a fifth.

Few GPs these days make such family-wide observations, which is why I think the great number of illnesses that coxsackievirus B can cause is often not properly recognized.

For further information on Richardson's observations on coxsackievirus B in families, see the chapter "Familial Consequences of Viral Illness" in Dr John Richardson's book Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies.
Hi,

I have not been back here in a while. I have also seen it not diagnosed because doctors literally dismiss it. When one of the teachers at my school who was ill, asked to be tested, as I suggested, his doctor waved him off and said he didn’t have that. He was never tested.

When my son and I were sick, I had to argue with his doctor for a half an hour, to get her to test him. In September, we will have been sick for seven years.

I’ve had to fight many battles, while we’ve been debilitated with this illness. To this day we are still being treated horribly by medical professionals.

My son’s school is threatening us with a CRA charging my son with being habitually truant, due to this illness. We’ve had three court dates so far. I don’t think they believe we are sick, or something else is going on.

The assistant principal started dissecting the doctors notes, & the judge has joined her. the doctor doesn’t want to write more notes. I’m at my wits end.

Trial is next week. How do I prove how debilitating, chronic, and all the symptoms Coxsackie b can cause?

I need help
 
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9
That is a wonderful idea, thank you! I’m sure he has, though we have not gotten that diagnosed yet. I have brought this up with a doctor in the past, but wasn’t able to make a lot of headway. I think there is more awareness needed in the medical community on this as well. However, it is listed on the CDC. That could be an excellent path for me to take. The bias we’ve endured regarding this illness, has been horrific.

Point of interest. I found a research study, on mice infected with Coxsackie. The mice that were exercised died. It seems to fit the ME/CFS. Also, of all the people infected when I was, only four of us were tested, and we all have long lasting consequences. One of us had short term paralysis. I have also found Coxsackie levels in a blood draw change, and remain elevated almost 7 years later.

I appreciate the breakdown you provided previously, and your getting back to me. I think that is some really helpful advice.

How are you doing now?

Thank you,

—Rose
 

Hip

Senior Member
Messages
17,802
That is a wonderful idea, thank you! I’m sure he has, though we have not gotten that diagnosed yet.

You may be able to do a preliminary diagnosis of ME/CFS yourself, using the various ME/CFS diagnostic rules, such as the IOM diagnostic criteria for ME/CFS, or the more precise Canadian consensus criteria (pdf here). There is also the older CDC 1994 Fukuda criteria.

If your symptoms match those criteria, then provided you do not have some other condition which might cause these same symptoms, you are diagnosed with ME/CFS.

ME/CFS is linked to several viruses, so from your doctor's perspective, the virus itself is not as important as the diagnosis of the disease. If you can get a ME/CFS diagnosis, then it may help explain your son's condition to the school.


I compiled an ME/CFS roadmap which may be helpful if you are looking for some treatments for ME/CFS. Usually regular doctors do not offer any help with treatments, so ME/CFS patients often have to become their own doctors.



How are you doing now?

My ME/CFS unfortunately got worse since catching COVID last year. My blood tests showed very high antibody titres to coxsackievirus B4 as well as cytomegalovirus. So I already had two viruses connected to my ME/CFS symptoms. Now coronavirus may be a third.
 
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9
That is so wonderfully useful, thank you, so much! It’s ridiculous that one has to go through so much, when they are ill. So much bias, so many battles.

I’m sorry you are still going through all this as well. We also contracted Covid, last September. My son brought it home from school. I was already having difficulty breathing. It became really scary with the Covid. I took the antiviral, and didn’t notice some improvement, in my original illness.

I will definitely pursue the ME/CFS. I know the symptoms fit when I looked into it years ago. That could be a life changing idea for us, after all the mistreatment we’ve received regarding this illness. I will keep you in my prayers.

Thank you,