Questions for confirmed viral sufferers.

[duncan]

Ah. Your opinion is explained by science?

Please show where it is written which pathogens/insults alone can be said to cause ME/CFS, by what qualifications each disorder or disease must satisfy to become a member of that fraternity, and which of those Hip listed has submitted to that rigorous scientific screening process.

 

[halcyon]

There is no proof that any pathogens alone can cause ME/CFS. There is evidence that links certain pathogens to onset which we can certainly provide papers for. We are asking you to provide the papers that link Bb to ME/CFS, that's all.

 

[duncan]

So there is no such criteria established that qualifies a pathogen as causal for ME/CFS. You admit that.

You're saying unless I can produce studies - which may or may not have been conducted at this point - I cannot be said to belong to your pedigree? A pedigree which has no scientifically established pathogen inclusion criteria?

And this is not a bias?

Well, I have ME/CFS, my stated cause is Lyme, and I wager my clinicians/researchers are at least as big as yours, so your stance rings a bit hollow.

There are many Lyme studies which claim post-treatment Lyme is CFS or fibro. I am not going to hunt them down for you. They are out there. Mainstreet Lyme researchers were stumbling over themselves to conjure some reason other than Lyme for persistent symptoms post-treatment.

 

[Hip]

I can never remember how to do internet links, and I lose my notes time and time again

That borders on ludicrous.

You say you have evidence to back up your assertions, but are not able provide any links to this evidence, because you forgot how to copy and paste a web address. Right.

Sounds like "I did my homework, but the dog ate it".

If ME/CFS is an immune disorder, or autoimmune reaction, to a pathogen, then there is nothing saying which pathogen can or cannot lead to ME/CFS. Period

So you think any pathogen may cause ME/CFS.

Are you aware that this is your own personal idiosyncratic idea, not established fact or considered scientific opinion. Indeed, it contradicts scientific knowledge. There is no association whatsoever between ME/CFS and say rhinovirus, and indeed, the vast majority of pathogens have no association with ME/CFS.

If you want to believe that any pathogen may cause ME/CFS, that's your prerogative. However, to suggest that I have a "baffling bias" because I don't subscribe to your personal beliefs is just crazy.

there is an entire practice in the United States of defining patients that once had Lyme, with ME/CFS

That may be the case, but it does not prove that Lyme is ME/CFS. ME/CFS is a wastebasket diagnosis that may be given when no other cause for the symptoms can be found.

Moreover, you generated quite a list of diseases and disorders you claimed could lead to ME/CFS - can you provide references for each?

Yes, some basic references are provided in my roadmap of chronic fatigue syndrome treatment (the references are numbered 1, 2, 3, in that roadmap).

If you want a more comprehensive list of references, this post lists many of the studies performed over the decades that associated enterovirus with ME/CFS.

You apparently have defined chronic Lyme as Lyme that has resolved on its own, with some minor residual symptoms, or, possibly, as late stage Lyme.

I have done no such thing.

There is a circular reasoning involved with assuming all patients with Lyme must test positive.

I am not assuming that.

Whereas you are assuming and have stated that most Lyme patients do not test positive for Borrelia. How are you coming to that conclusion?

The only way to know that, to know what percentage of Lyme patients are testing positive, and what percentage are testing negative, would be to use a gold standard research laboratory test for Lyme (which typically involves tissue biopsy and bacterial culturing), and then compare the gold standard results to the commercial ELISA + Western blot test results.

I wish you would fact check your statements before you make them.

NHS was your source for the stiff neck thing? Where do you imagine the NHS go that? Anyway, take my word for it, it's likely a reference to neuro-Lyme. It could just as easily pertain to someone who slept at a weird angle, or read for a while with a crooked neck.

The CDC website also says the same thing about neck stiffness.

To be fair, you may be right about the stiff neck not being a major symptom in chronic Lyme. The NHS site says that neck stiffness is a symptom that may be found in early Lyme, and that stiff neck also appears when chronic Lyme leads to inflammation of the membranes surrounding the brain and spinal cord (meningitis), so this stiff neck symptom may not be chronically present.

I think I may remove the stiff neck symptom from the roadmap, if it is not chronically present.

I am saying that the epidemiological charts for Lyme prevalence are likely inaccurate. After all, I think the current charts probably still show 30,000 cases in the US, when the real number is tens time that - or higher.

Underreporting of a disease is not the same as being wrong about where the disease occurs and where it does not.

You are saying that where you live may be irrelevant to your statistical risk of contracting this disease, and you are thus saying it may be irrelevant to use your geographic location in any Lyme-ME/CFS differential diagnosis.

Yet I can't imagine that you can be right on this issue. If you look at this US Lyme incidence chart, there is an enormous difference in the incidence (ie, cases per 100,000 people) of Lyme from place to place. In 2013, the highest incidence was in Vermont, with 107.6 cases for each 100,000 persons. Whereas in California the incidence was 0.2 cases per 100,000.

Are you trying to tell me that this is irrelevant, and your risk of catching Lyme would be the same in Vermont or California?

 

[Hip]

So there is no such criteria established that qualifies a pathogen as causal for ME/CFS. You admit that.

In fact, there are a few pathogens that can be considered known causes of ME/CFS. These include parvovirus B19.

Other pathogens like enterovirus and EBV are quite strongly associated with ME/CFS, but as yet these are not considered proven causes, although work continues to try to obtain proof.

Well, I have ME/CFS, my stated cause is Lyme, and I wager my clinicians/researchers are at least as big as yours, so your stance rings a bit hollow.

No doubt you have lots of references to researchers or studies saying that Lyme can trigger ME/CFS, but unfortunately the dog ate the piece of paper your wrote these references on.

 

[duncan]

Yep, I would agree my memory problems are ludicrous.

I am saying you are not the arbiter of which diseases cause ME/CFS. Until you can prove one does not, it should be given the benefit of the doubt, especially when a pathogen leads to ME/CFS and instills the same signs and symptoms as found in other ME/CFS patients.

I say you have a bias because you are excluding thousands of patients without reason to doubt them.

I know Lyme is not ME/CFS. Please read what I wrote. Lyme can trigger ME/CFS.

Relative to your chronic Lyme definition, sure you did. You may not know it, though.

The Gold Standard in Lyme testing is culture-confirmed. Yes. What do you think that means in real-world Lyme? It means very little. It isn't done outside an EM anymore except in extreme cases. You are winging this as you go, yes? On the CDC Lyme page or maybe the IDSA? Please don't tell me you're still spinning your wheel on the NHS site.

Under-reporting a disease can be the same as not reporting its dispersion accurately. Where it is claimed to appear is contingent on how it is defined and diagnosed. Also, you have to factor in the fear clinicians have in reporting cases where the CDC says Lyme should not be. Lots of variables here. Once again, you skim the headlines or talking points, and you miss dangerously too much. Still, I would agree one is more likely to get a tick-borne illness in some geographies. My point is that that is irrelevant to Lyme's tie to ME/CFS.

I think you have a bias. It is an opinion that does not appear to me to be based on science, and it negatively impacts a large population. That is why I use the word bias. It is similar to asking a minority to prove they are as good as the majority - without ever providing reference points.

 

[Hip]

I am saying you are not the arbiter of which diseases cause ME/CFS.

Being the arbiter is precisely the issue here: you are presenting your own views as if you were a major researcher in the field; whereas few other people would have the temerity to do this.

Most people would rely on and quote what science and experts in the field say.

I know Lyme is not ME/CFS. Please read what I wrote. Lyme can trigger ME/CFS.

Whatever you say, unless you back it up with references and evidence, it's not going to be believed by anybody. It's just your views.

The Gold Standard in Lyme testing is culture-confirmed. Yes. What do you think that means in real-world Lyme? It means very little. It isn't done outside an EM anymore except in extreme cases.

So if these gold standard tests are not performed, then on what basis do you say you know that most Lyme patients test negative by regular commercial Lyme bloods tests?

Under-reporting a disease can be the same as not reporting its dispersion accurately. Where it is claimed to appear is contingent on how it is defined and diagnosed. Also, you have to factor in the fear clinicians have in reporting cases where the CDC says Lyme should not be. Lots of variables here. Once again, you skim the headlines or talking points, and you miss dangerously too much. Still, I would agree one is more likely to get a tick-borne illness in some geographies. My point is that that is irrelevant to Lyme's tie to ME/CFS.

Perhaps you don't know how probability and statistics work, and so do not understand how geographic location can be used as part of a probabilistic differential diagnosis between ME/CFS and Lyme.

 

[duncan]

I am not good with numbers, including stats and probabilities, that is true. But I'm pretty good with the underlying politics which are at play. Not too shabby with the science, too.

I not only study Lyme, I have read the research and torn it apart and put it back together again. I talk to leaders in Lyme research. Do you, or do you skim websites and wikipedia?

You want to preach to me, that's fine. But kindly have the decency to at least wait until you have those established ME/CFS pathogen criteria in hand. Until then, your gospel is as without foundation as, well, the sickness behavior concept or BPS claims.

 

[halcyon]

I was only able to find a few papers, amusingly mostly not from the US which further shows how little the US seems to care about lyme. I found a few more negative studies, including one from Komoroff et al. where they found little evidence of Bb antibodies but we'll ignore that one since testing is tricky.

Borrelia burgdorferi reactivity in patients with severe persistent fatigue who are from a region in which Lyme disease is endemic.

Chronic fatigue syndrome following tick-borne diseases

Chronic fatigue syndrome in patients with Lyme borreliosis.

So there may be some evidence that Bb can lead to a CFS-like syndrome, much like there is evidence for C. pneumoniae doing the same. I was unable to find anything using ME criteria, so it might be fair to say that Bb could lead to CFS, but not ME.

 

[duncan]

I think that was a fair attempt. Thank you, @halcyon

Remember, in the United States, there is no ME; there is just CFS - ME historically has been folded into CFS.

You note "amusingly" about how the US seems not to put a high value on Lyme. First, you'll get no argument from me. Second, Europe has a significantly longer history of dealing with Borrelia, and obviously Europe has led the way relative to ME studies.

 

[halcyon]

Remember, in the United States, there is no ME; there is just CFS - ME historically has been folded into CFS.

ME has always been in the US ICD-9-CM, at a separate code (323.9) from CFS (780.81). In the new ICD-10-CM they are still separate and are now exclusionary of each other. So it's always been here, not folded into CFS, it's just that it was rarely if ever diagnosed. The CDC has always been very careful not to equate ME with CFS and they try their hardest not to ever mutter the word ME.

 

[Hip]

The second study cited says:

86 patients with a history of borreliosis or tick-borne encephalitis were examined. In 50% of these cases CFS could be identified. This clinical pattern was found in as many as 71% of the borreliosis patients, while only 24% of those with history of tick-borne encephalitis were diagnosed with CFS. Moreover, in the patients with a history of borreliosis after symptomatic treatment recommended for CFS, an amelioration was noted in as many as 61% of the cases. The findings suggest that the chronic fatigue syndrome is frequent among patients with a history of borreliosis

However, I would not consider that study as evidence that ME/CFS can follow Lyme. Chronic Lyme has nearly identical symptoms to ME/CFS, so if you are simply seeing whether chronic Lyme patients fit for example the CDC or CCC criteria for ME/CFS, of course you are going find that many will fulfill these ME/CFS criteria. But that does not necessarily mean they have ME/CFS. Likewise you may find many untreated hypothyroid patients fulfilling the CCC, but that does not mean that hypothyroid is ME/CFS.


What would convince me that these borreliosis patients genuinely have ME/CFS and not merely chronic Lyme is if their cerebrospinal fluid tests contained proteins that were indicative of ME/CFS rather than Lyme.

The cerebrospinal fluid study that @halcyon posted earlier found that ME/CFS and Lyme patients have different characteristic proteins in their cerebrospinal fluid.

 

[duncan]

@halcyon , maybe so, but the practice was not to diagnosis ME, only CFS. I am cautiously optimistic about making the claim that most clinicians in the US never even heard of ME until it was added to CFS to make ME/CFS. They were usually prompted by the CDC to CFS.

@Hip , please refer to my earlier response to the Shuster et al study. One can infer more than one conclusion from that study.

I wonder if you would insist that other ME/CFS patients - other than Lyme ones - undergo a LP. Most on this forum, I suspect, would accept an ME/CFS diagnosis based on blood labs that look at elevated viral markers, and low NK activity/counts, PEM, and maybe CEPT testing and/or OI testing.

 

[Chriswolf]

@Hip

I had a biopsy that gave a strong indicator of autoimmune disease. That is, evidence of lympocytic infiltration. Both my girlfriend and I are pretty certain I do some sort of autoimmune stuff going on, I think it's a matter of time before I'm diagnosed with sjogren's, as I have many symptoms indicative of it, as well as coming up positive for lymphocyte damage on my salivary gland biopsy.

I can't rule out mold exposure, or giardiasis, but I know I was exposed to coxsackie virus in early childhood.

You also mentioned brucellosis, which is funny because while I've been trying to do research myself, albeit somewhat thralled by CFS-brain as of late, she came to the suspicion about that as well. I really need to see a professional about this, but I do value you input very much, as do I other respondents as well.

I have been experiencing joint pain, and what appears to be uncomfortable and periodic swelling in the liver area as well, sore throats, the whole nine yards. Hoo boy.

Last night I had a stunning bout of eye pain, one eye, along with a headache, the same side of the affected eye. I took some GABA and it seemed to have helped somewhat, but I didn't get much sleep. I'm hoping it won't come back again tonight.

Additionally, I'm not making broad claims that ME/CFS isn't largely virally precipitated. I'm just more concerned about narrowing things down for myself in particular, and in the case of mentioning brucellosis, that's pretty much what I was wondering about, just narrowing the field down somewhat.

Apparently I had a test for Lyme and it came up negative, I don't hold the healthcare system where I live to high standards, so it's unlikely, albeit possible I had caught it.

In 2007 there was apparently some detected cases around the city where I grew up, specifically in areas where I had frequented in the past. Who knows if that was only the first time it had been detected?

@halcyon

Well, that also is interesting and disconcerting, I believe I read somewhere that viruses tend to flourish in warmer temperatures, and that low body temperature regulation can actually hedge against viral proliferation to some extent.

 

[duncan]

@Hip : "What would convince me that these borreliosis patients genuinely have ME/CFS and not merely chronic Lyme is if their cerebrospinal fluid tests contained proteins that were indicative of ME/CFS rather than Lyme."

That's a curious statement that in some regards reveals the flaws and prejudice in your reasoning.

Post-treatment Lyme disease patients shouldn't have borrelia in their bodies, hence they are not borreliosis patients. Please do some substantive reading about Lyme before assuming you can argue for or against it.

Natelson and Schutzer et al did not study Lyme or chronic Lyme. They looked at post-treatment Lyme syndrome. Please look at what you are reading. You make similar errors when you tried to reference what I had written.

Now, you may have stumbled on to something, albeit inadvertently. One of my problems with the Schutzer et al effort is I think it's possible they did have Lyme patients in the mix, which would defeat the purpose of distinguishing one syndrome supposedly devoid of an underlying bacteria from another with no widely acknowledged causal pathogen.

You wrote, " ...not merely chronic Lyme..." Not "merely" chronic Lyme? You have said before that symptoms of chronic Lyme and ME/CFS are nearly identical. Please explain the word choice.

@halcyon was kind enough to provide links to studies which suggest a link between Lyme and its manifestations to ME/CFS. As I had suggested, there are others (e.g. 'Implications of Gender in Chronic Lyme Disease', Wormser GP, Shapiro ED 2009, or 'Lyme Disease Diagnosed by Alternative Methods: A Common Phenotype with Chronic Fatigue Syndrome' David M. Patrick et al Clin Infect Dis June 2015). There are more, I assure you, but I am not going to hunt them down.

More to the point, leading ME/CFS researchers and clinicians think so, too. Please review Dr. Montoya's and Stanford's ME/CFS Initiative's website. In it they provide a description of "...different pathogens that have been associated with ME/CFS..." Half way down that list are tick-borne diseases, including Lyme. He dedicates a detailed discussion to the association. You may wish to check it out.

It would seem your exclusion of TBDs as possible causes or triggers of ME/CFS is not justified. You accused me of having the temerity to speak as an expert; do you think you know more than Dr. Montoya and Stanford U? Of course, you have every right to cling to your biases regardless of the evidence.

It can be a hazard to all when one person takes it upon himself to be the arbiter of what disease or disorder can be admitted to the hazy fraternity of possible ME/CFS causes.

I apologize to Chriswolf and other readers for the thread detour.

 

[Hip]

Post-treatment Lyme disease patients shouldn't have borrelia in their bodies, hence they are not borreliosis patients. Please do some substantive reading about Lyme before assuming you can argue for or against it.

Don't you think you should be looking at this more logically and scientifically, rather than placing all the weight on names and labels like "post-treatment Lyme disease".

You seem to be very focused on these various Lyme disease labels, but it is science and logic, not labels, that is important to grasp. Science and logic involves thinking for yourself, hard as that may be.

Post-treatment Lyme disease simply means that a patient has been tested positive for Borrelia, and that they have been given a course of antibiotics. It does not necessarily mean that they are clear of Borrelia, even if some in the CDC believe that the course of antibiotics should clear all the Borrelia.

Nobody actually knows at present if post-treatment Lyme disease patients still have Borrelia in their bodies or not. Post-treatment Lyme disease patients have symptoms, which are often referred to as chronic Lyme, but as yet the cause of those symptoms is not known. My own view is that it most likely a chronic Borrelia infection that is causing the symptoms of post-treatment Lyme disease / chronic Lyme, but we will have to see if this turns out to be true.

If you were less focused on names and labels, and more focused on the science, you would see the deeper logic behind these labels.

You had the same issues on threads where I was talking about "sickness behavior". Because you are so focused on labels, you took great exception to me using the term "sickness behavior", because the name suggested a psychological theory of ME/CFS. Whereas if you were more focused on science, you would have understood the concepts behind "sickness behavior" (which refers to an inflammation-precipitated biochemical response in the brain), rather than just seeing the surface-level nomenclature.


Have you ever tried the nootropic supplements piracetam or aniracetam? I find these work well to boost logical function of the mind, which can be badly impacted by the brain fog of ME/CFS.

You wrote, " ...not merely chronic Lyme..." Not "merely" chronic Lyme? You have said before that symptoms of chronic Lyme and ME/CFS are nearly identical. Please explain the word choice.

You are asking me why I chose the word "merely"? Again you are focused or labels. That word was used in a logical context (meaning the same as "only"), which I think you may have missed. You will have re-read it a few times, and focus hard on the logic of what is being said.

It would seem your exclusion of TBDs as possible causes or triggers of ME/CFS is not justified.

You may wish to re-read this thread, because I did not exclude tick-borne diseases as possible causes for ME/CFS-like symptoms. What I said was, I was not aware of any tick-borne pathogens other than Borrelia species, that can cause ME/CFS-like symptoms.

It can be a hazard to all when one person takes it upon himself to be the arbiter of what disease or disorder can be admitted to the hazy fraternity of possible ME/CFS causes.

It is your blurred and unorthodox and opinions that are the hazard for other patients here.

When someone like @Chriswolf comes to this forum with ME/CFS-like symptoms, and is looking for a likely infectious cause for their symptoms, which can be like finding a needle in a haystack, what they want are pointers to the most likely causes for their symptoms.

What they want is for things to be narrowed down to what medical science knows are the most likely infectious (or other) causes for their particular symptoms, so that they can then pursue testing and treatment.


What they don't want to hear is your unorthodox and wrongheaded opinion that any old pathogen can potentially cause ME/CFS symptoms. That does not help narrow anything down at all.

You are creating confusion rather than clarity.

 

[duncan]

@Hip , names and labels involve definitions. So, names and labels matter in general. At least they do for those who strive for accuracy.

They matter even more in Science, where tenets and conclusions often are only as sound as the definitions ascribed to the names and labels used in any scientific enterprise.

Meaningful or accurate inferences or conclusions in research settings, drawn without understanding of the appropriate names and labels, are virtually impossible to realize except through serendipity. Such efforts are pretty much doomed to failure.

 

[Hip]

You also mentioned brucellosis, which is funny because while I've been trying to do research myself, albeit somewhat thralled by CFS-brain as of late, she came to the suspicion about that as well. I really need to see a professional about this, but I do value you input very much, as do I other respondents as well.

If it is brucellosis that you have, then you are in luck, because this can be treated with antibiotics (see here for example), although you need to use multiple antibiotics, because Brucella are hard to kill.

Additionally, I'm not making broad claims that ME/CFS isn't largely virally precipitated. I'm just more concerned about narrowing things down for myself in particular, and in the case of mentioning brucellosis, that's pretty much what I was wondering about, just narrowing the field down somewhat.

Narrowing things down is the way to go. That's how good infectious disease specialists work as well. They will look at your symptoms, and also consider your history (such as travel history to see whether you had travelled to tropical countries were certain infectious diseases are prevalent).

I have been through this narrowing down process myself, and it took me a few years before I become fairly confident that an enterovirus infection was the mostly likely cause of my ME/CFS. Unfortunately enterovirus is one of the least treatable infections, due to a lack of good antivirals for it.


When considering various pathogens as the possible cause for your symptoms, I find it is a good idea to read about the pathogen symptom on not just one, but several authoritative websites. Sometimes they way symptoms are described and listed on one website is not so clear, and I find you get a better "feel" for the nature of the symptoms caused by a pathogen by reading several lists of symptoms on different websites.

Also, if possible, look at both the acute phase symptoms (the symptoms you experienced in the first few days or weeks after catching the pathogen, if there were such acute symptoms), as well as the chronic phase symptoms.

Some pathogens have characteristic acute phase symptoms (also called the prodrome symptoms), which can help to identify them.


Another useful thing to look at is how a pathogen is caught, which is termed the route of transmission. In the case of Brucella, you can see here that the most common routes by which this bacterium is contracted are as follows:

BRUCELLA TRANSMISSION

The most common way to be infected is by eating or drinking unpasteurized/raw dairy products. When sheep, goats, cows, or camels are infected, their milk becomes contaminated with the bacteria.


Breathing in the bacteria that causes brucellosis may also lead to infection. This risk is generally greater for people in laboratories that work with the bacteria. In addition, slaughterhouse and meat-packing employees have also been known to be exposed to the bacteria and ultimately become infected.


Bacteria can also enter wounds in the skin/mucous membranes through contact with infected animals. This poses a problem for workers who have close contact with animals or animal excretions (newborn animals, fetuses, and excretions that may result from birth). Such workers may include:

• slaughterhouse workers
• meat-packing plant employees
• veterinarians

People who hunt animals may also be at risk. When they are in contact with infected animals, exposure to the bacteria may occur through:

• skin wounds
• accidentally ingesting undercooked meat
• inhaling the bacteria while dressing their game. Commonly infected animals include: bison, elk, caribou, moose and wild hogs (feral swine).

So if you fall into any of the above route of transmission categories, and thus have been at higher risk of contracting Brucella, this will tend to support the possibility that your symptoms are caused by Brucella.

 

[halcyon]

For what it's worth, the IOM report had the following to say about it:

The committee’s literature
review yielded no studies of posttreatment Lyme disease syndrome and
ME/CFS; however, the two illnesses share some symptoms, and patients
with Lyme disease often are identified as a subgroup among ME/CFS patients
in specialty practices (Schutzer et al., 2011).

It should also be noted that lyme excludes one from a CFS diagnosis under Fukuda and CCC criteria.

 

[halcyon]

Actually more specifically Fukuda seems to exclude lyme but apparently not post-treatment lyme.