Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS?

[Hip]

When you question the patient in more detail it often turns out they had issues in the months or years leading up to the "sudden onset" but these were not interpreted as signs of disease at the time. Patients usually consider their onset to be when obvious disease and disability started but upon further questioning you often uncover a long history of irritable bowel syndrome, allergies, migraine, menstrual problems, anxiety, depression etc.

In my case, I had pretty bad IBS-D for a whole 5 years prior to catching the enterovirus which appeared to precipitate my ME/CFS.

As soon as I developed IBS, I started to get mild fatigue symptoms already, and also some psychiatric symptoms such as generalized anxiety disorder (anxiety is quite common in IBS, and is probably I think precipitated by a sickness behavior mechanism, since sickness behavior cytokines are known to be raised in IBS).

So I was already in some difficulties, but the virus I caught appeared to be the killer blow, in terms of precipitating not only ME/CFS, but also suddenly triggering severe anhedonia and greatly increased anxiety.

So it may well be that IBS set the scene for ME/CFS to appear. I speculate in this earlier post that the sickness behavior cytokines of IBS may have triggered the phenomenon of immune system priming, such that by the time the virus arrived, my immune system was already primed and thus geared up to produce a massively exaggerated sickness behavior response, thus leading to ME/CFS when I caught this virus.

 

[Sidereal]

So I was already in some difficulties, but the virus I caught appeared to be the killer blow, in terms of precipitating not only ME/CFS, but also suddenly triggering severe anhedonia and greatly increased anxiety.

Yes, I suspect the virus is the final straw that broke the camel's back. The camel already had subpar capacity to suppress oxidative stress to begin with. I don't think the triggering infection is causative per se because the same syndrome can be triggered by other non-infectious stressors like surgery, mild traumatic brain injury, toxic exposures, severe psychological stress etc. etc.

My health was already going down the tubes. I figure if the enterovirus hadn't finished me off something else would have months or years later.

 

[Sidereal]

@Sidereal
But probably if you questioned any selection of healthy people, there will be histories of these common health issues.
e.g.
Aug 2, 2012 - Number of people in the U.S. who have either allergy or asthma symptoms: one in five. Percentage of the U.S. population that tests positive to one or more allergens: 55%.
Lifetime prevalence of depression in the US - 17%

Depends on what you mean by healthy people. Half the American population is overweight and 1 in 6 have depression. As a civilisation our health is rapidly decaying.

A tiny minority of the population gets ME. Others develop other diseases. Genetic factors clearly play a role in which disease you're going to be slammed with.

These subsyndromal symptoms which predate ME don't cause ME to my mind but simply reflect a shitty redox situation in the body which facilitates total destruction and a vicious cycle of some sorts which establishes itself after some event that healthy people can get over - like an enteroviral infection or mono.

 

[duncan]

@Hip, I am curious as to why you lump ME/CFS with anhedonia and greatly increased anxiety. In fact, you note severe anhedonia. Are there gradations of that psychological entity? Also, interesting in that you seem to suggest your ME/CFS and psych issues were both "precipitated" by the same virus. Do you identify ME/CFS with psych behavior?

I am also wondering why you would choose the word "exaggerated" to describe your "sickness behavior response." As opposed to say, "pronounced", or "overt", or "amplified", or any of a number of possible qualifiers that don't connote intent.

I am fascinated by wording, and of course, words matter, so I hope you will excuse me if am puzzled at your eagerness to embrace pysch terminology, not to mention components or ancillaries to a disease that has for years has seen its sufferers struggle to emerge from under the weight of a psych label.

 

[Hip]

I don't think the triggering infection is causative per se because the same syndrome can be triggered by other non-infectious stressors like surgery, mild traumatic brain injury, toxic exposures, severe psychological stress etc. etc.

The evidence suggesting infection plays a specific casual role is that there are only relatively few pathogens that are linked to regularly precipitating ME/CFS. The main triggering pathogens are essentially enterovirus, EBV, and then parvovirus B19 and Chlamydia pneumoniae might be considered as known causes of ME/CFS.

But nobody gets ME/CFS after say an infection with norovirus, rotavirus, adenovirus, influenza virus, measles virus, etc.

So this indicates that the viral infection is not just some generic infectious stressor event that leads to ME/CFS, but that the specific type of virus plays a precise role in the development of ME/CFS.



I always find major surgery an intriguing ME/CFS trigger, in terms of trying to figure out why it might precipitate ME/CFS. One possible etiology that occurred to me is that since major surgery often involves blood transfusion, it could be that the patient contracts say an enterovirus infection from the transfusion. Picking up viral infections from blood transfusions is not uncommon.

 

[Sidereal]

The main triggering pathogens are essentially enterovirus, EBV, and then parvovirus B19 and Chlamydia pneumoniae might be considered as known causes of ME/CFS.

Well, that's not true. A Giardia cohort was followed up in Norway after an outbreak and many of those people developed post-infectious CFS. In Australia you had the study showing that mono, Q fever and Ross River virus can lead to CFS. Then we have the epidemic of people who take antibiotics for years and get no better from Lyme and coinfections. Etc.

 

[Hip]

Well, that's not true. A Giardia cohort was followed up in Norway after an outbreak and many of those people developed post-infectious CFS. In Australia you had the study showing that mono, Q fever and Ross River virus can lead to CFS. Then we have the epidemic of people who take antibiotics for years and get no better from Lyme and coinfections. Etc.

You appeared to miss the word "main" in my sentence: "The main triggering pathogens are...". Of course we know that there are rarer infectious associations of ME/CFS.

However, the point is that you never hear of ME/CFS following infection with norovirus, rotavirus, adenovirus, influenza virus, measles virus, and countless other infections. There are only relatively few infections that have been associated with ME/CFS. So this evidence shows only specific infections are linked to precipitating ME/CFS, and suggests that it is the particular nature and makeup of those specific pathogens which is playing a role in ME/CFS etiology.

 

[Sidereal]

You appeared to miss the word "main" in my sentence "The main triggering pathogens are...". Of course we know that there are rarer infectious associations of ME/CFS.

However, the point is that you never hear of ME/CFS following infection with norovirus, rotavirus, adenovirus, influenza virus, measles virus, and countless other infections. There are only relatively few infections that have been associated with ME/CFS. So this evidence shows only specific infections are linked to precipitating ME/CFS.

Well, how do you know? Published evidence mainly reflects the focus of individual clinicians. People with enterovirus flock to Chia. People with herpes virus titres flock to Peterson, Lerner, Montoya... Back in the real world, many people with viral onset were never tested for the type of infection they had because the CFS diagnosis is applied later, in hindsight, after the non-resolution of symptoms lasting several months or years. So when people say they had flu from hell that triggered their ME/CFS, how do we know what they actually had?

 

[duncan]

Hip cannot know that. Period. He can only speculate about it. What is dangerous is that his speculations by definition potentially exclude everybody that may have ME/CFS that does not have its source in one of Hip's choices.

 

[Hip]

Well, how do you know? Published evidence mainly reflects the focus of individual clinicians.

That is a bit of a naive statement.

If you read about the general research that looks for links between infectious pathogens and various diseases, you will appreciate that this is a field that has been around for a long time, and researchers put in a lot of effort to try to specifically link pathogens to diseases.

And don't you think hospitals would notice if say patients very sick with norovirus developed ME/CFS?

 

[duncan]

@Hip, is this the way you think ME/CFS diagnoses are earned usually? That someone is admitted to a hospital for treatment of one pathogen, then at the end of their stay, if symptoms persist, the patient is declared to have ME/CFS while still at the hospital for their initial diagnosis?

 

[halcyon]

Do you identify ME/CFS with psych behavior?

Psychological sequelae are well documented in this disease historically. It's made quite clear that these effects are caused by the illness though, not the other way around.

I am also wondering why you would choose the word "exaggerated" to describe your "sickness behavior response." As opposed to say, "pronounced", or "overt", or "amplified", or any of a number of possible qualifiers that don't connote intent.

I don't know why Hip gets shit every time he uses this term. It's a proper medical term to describe the autonomic response to infection. It has nothing to do with behavior at its core and could just as easily be called "sickness response".

 

[Sidereal]

That is a bit of a naive statement.

If you read about the general research that looks for links between infectious pathogens and various diseases, you will then appreciate that this is a field that has been around for a long time, and researchers put in a lot of effort to try to specifically link pathogens to diseases. And don't you think hospitals would notice if say patients very sick with norovirus developed ME/CFS.

I don't think it's naive at all. The very problem with research purporting to link pathogens with ME/CFS is the non-systematic, mostly retrospective nature of it. Clinicians treat and publish the cases that fit their pet theory / case definition so those reports appear in the published literature.

First of all, a CFS diagnosis can only be made if the patient has been "fatigued" for six months. A hospital discharging a patient who is tired after a norovirus infection is not going to say OMG THIS GUY HAS CFS, WRITE THIS DOWN IN HIS CHART STAT! They are going to discharge him and say keep your fluids and electrolytes on deck and you'll be all better soon. Hospitals don't notice that patients develop ME/CFS after any infection. Since almost no medical professional believes this is a medical condition or that it even exists, they are not going to be on the lookout for it.

In order for you to tell me that norovirus or flu don't trigger ME/CFS you'd need to have a large prospective population-based cohort where you pick a catchment area and you get GPs and hospitals to record every incidence of every infection within a certain time period and then you follow people up who got those infections and then you assess them for CFS symptoms six months later or whatever and figure out what percentage of people with each infection meet CFS case definition(s) six months later.

Nothing remotely approaching this kind of study has been done.

 

[duncan]

halcyon: "Psychological sequelae are well documented in this disease historically. It's made quite clear that these effects are caused by the illness though, not the other way around."

Well, guilt by association? It is not always made clear, halcyon.

halcyon: "I don't know why Hip gets shit every time he uses this term. It's a proper medical term to describe the autonomic response to infection. It has nothing to do with behavior at its core and could just as easily be called "sickness response"."

Please re-read what I wrote. I did not take umbrage with his use of "sickness behavior."

If you don't think precision in wording matters, in particular with ME/CFS and other "disputed" or controversial diseases - including Lyme - then I hope you are never unhappily surprised when that wording is used at your expense. I mention this only because it has happened to me and to others.

 

[Sidereal]

Duncan, are you saying that ME/CFS doesn't cause psychiatric symptoms in a proportion of patients?

 

[duncan]

I would say ME/CFS can lead to psychiatric symptoms, just as any malignancy can. I would not say that I got sick with the flu and I got depressed and anxious and ME/CFS. The association is misleading and convoluted and dangerous.

 

[Sidereal]

I would say ME/CFS can lead to psychiatric symptoms, just as any malignancy can. I would not say that I got sick with the flu and I got depressed and anxious and ME/CFS. The association is misleading and convoluted and dangerous.

Can you please clarify? I honestly don't understand why it's misleading and dangerous. What neurological disease or infectious, autoimmune or metabolic disease affecting the brain doesn't lead to psychiatric symptoms?

 

[halcyon]

I developed ME/CFS shortly after meeting my wife but I'd be VERY wary about suggesting any causal link

A dangerous game to suggest that indeed. Kidding aside, it's not far fetched. There is likely a large transfer of microbes (bacteria and viruses) when you first become intimate with someone. It's not unheard of for someone to develop ME shortly after being with someone new, or even after a single sexual encounter.

 

[duncan]

Sidereal, ME/CFS is not considered a neurological or infectious or autoimmune or metabolic disease by many many people.

Ignoring wording ignores this stark reality.

 

[Sidereal]

A dangerous game to suggest that indeed. Kidding aside, it's not far fetched. There is likely a large transfer of microbes (bacteria and viruses) when you first become intimate with someone. It's not unheard of for someone to develop ME shortly after being with someone new, or even after a single sexual encounter.

I can only imagine what the fluid exchange does to the composition of your microbiomes.