Study of Insect-borne Infections in ME patients planned

[Gijs]

So Gijs, you already know what ME is, since you can already tell us what it isn´t? Please tell us!

Also, the fact that they are using the XMRV samples means that, if they test positive for TBIs, some percentage of the population characterised as having ME actually have TBIs. These people could then say that the subset with pure autoimmune disease haven´t got ME, they have an autoimmune disease. The important thing is to work out what those people who are labelled as having ME actually have. Then we can argue about who has the ´real´ ME.

i know for sure that (chronic) lyme is not ME/CFS but i think 20 - 30% could have it as misdiagnoses. If i follow your statement then ME/CFS doesn't exist at all because it is not 1 disease. This is an interesting point. I could agree with it. ME/CFS isn't one disease i can tell you that for sure.

 

[msf]

So we agree, good!

 

[Chrisb]

It all depends on what you mean by "is".....

 

[duncan]

@ukxmrv : Well, when have they ever really had a handle on what Lyme is, or isn't? First it was a virus, then it wasn't. First it was atypical RA, then it wasn't. First is always presented with a classic EM, then it didn't.

But that exclusion criteria was wrong if only for the fact that someone can have both CFS and Lyme simultaneously. Moreover, who's or what's to say when Lyme stops and ME/CFS begins? A hotly debated, contrived WB threshold devised in friggen Michigan of all places?

I don't believe Lyme is ME/CFS. Too many PWME have no evidence of ever been exposed to any Borrelia. But I do believe it can precipitate it.

 

[ukxmrv]

@ukxmrv : Well, when have they ever really had a handle on what Lyme is, or isn't? First it was a virus, then it wasn't. First it was atypical RA, then it wasn't. First is always presented with a classic EM, then it didn't.

But that exclusion criteria was wrong if only for the fact that someone can have both CFS and Lyme simultaneously. Moreover, who's to say when Lyme stops and ME/CFS begins? A hotly debated contrived wB threshold devised in friggen Michigan of all places?

I take your points and agree. If we don't fully know what Lyme is and cannot always look for the signs or test for it properly how can we rule it out.

It is of course possible to have CFS and X (another disease). In the exclusions they were looking for other conditions that could explain ALL of the symptoms in their criteria.

So one could have CFS and X.

It only became important if X could explain ALL of the symptoms that a patient had that matched the CFS criteria.

So if Lyme is ever tested properly and understood properly and all CFS patients with that criteria have it, and it explains ALL of their symptoms, then CFS ceases to exist.

Given the range of patients under the CFS umbrella, is that likely to happen? I don't think so because of the people who report recovery after antiviral and other treatments.

What % in the end - no idea.

 

[Gijs]

@msf, I think this is 'real' ME/CFS: ME/CFS is a state of persistent abnormal activity of the autonomic nervous system. The main problem is reduced blood flow and oxygen uptake. The body is no longer able to recover. This sustained activity is due to an improperly functioning parasympathetic nervous system. The body remains in the fight and flight suspended position. Stress hormones such as cortisol are depleted. This suppresses the immuusysteem preventing it from functioning properly. Like a circle.

 

[Valentijn]

If you don't treat Lyme and it goes to your heart you will have serious heart problems which doctors can see as carditis. Also you can have serious seizures and be paralized. These objective symptoms doesn't occure in ME/CFS.

Those are all rare complications of Lyme infection. They most certainly do not happen in all cases of Lyme, nor even in many cases. Additionally, some ME patients with PEM do also have heart problems, seizures, or paralysis.

 

[Gijs]

Those are all rare complications of Lyme infection. They most certainly do not happen in all cases of Lyme, nor even in many cases. Additionally, some ME patients with PEM do also have heart problems, seizures, or paralysis.

ME patiënts doesn't have carditis and real seizures and paralysis like Lyme. This is not true.

 

[msf]

Lyme carditis is an occasional feature of acute Lyme, so this will occur before any diagnosis of ME can be made.

 

[msf]

You also seem to be arguing against yourself - before you said that up to 30% of those labelled as having ME may have Lyme, but now you are saying no one with ME can have it because no one with ME has the symptoms you mentioned...

 

[Gijs]

You also seem to be arguing against yourself - before you said that up to 30% of those labelled as having ME may have Lyme, but now you are saying no one with ME can have it because no one with ME has the symptoms you mentioned...

Not at all. No one with ME have carditis due to ME. I talk about misdiagnoses.

 

[Gijs]

Lyme carditis is an occasional feature of acute Lyme, so this will occur before any diagnosis of ME can be made.

If you have Lyme and carditis you don't get the diagnose for ME/CFS.

 

[msf]

Ah, the ´real´ ME, you mean? I don´t know what ´real´ means in this context.

 

[msf]

As I said before, the important thing is to work out what is wrong with everyone who has been labelled as having ME - so bring on the study!

 

[duncan]

@Gijs : "If you have Lyme and carditis you don't get the diagnosis for ME/CFS"

Why not?

If you have ME/CFS can you get cancer? The flu? The plague?

 

[Gijs]

@Gijs : "If you have Lyme and carditis you don't get the diagnosis for ME/CFS"

Why not?

If you have ME/CFS can you get cancer? The flu? The plague?

You also can have HIV. You totally missing the point here.

 

[duncan]

Stranger things have happened.

To what point are you referring?

 

[sarah darwins]

This situation is crying out for a Venn diagram .... who remembers their high school maths?

 

[MeSci]

@MeSci , what you propose is possible. I think in terms of probabilities it is highly unlikely, although I could not qualify how improbable.

It would have to be a perfect storm. Not only would a very high portion of the ticks have to be infected, enough would have to transmit the disease - in only a very small geographic area - to infect all those individuals...then abruptly stop once a certain radius is achieved. Few of those people if any reported a rash, right? Also, this isn't how persistent Lyme usually unfurls. Typically, you have a flu-like episode, and then you improve as the body and/or abx resolve most of it...and then it comes back and presents much in the same way as ME/CFS.

It's not even the symptoms. It's primarily that only a few ticks in a very limited geography transmit to so many people. Ticks don't typically disperse this way. This is extremely unusual and difficult to explain.

So, this perfect storm I suppose could happen, but I think the conditions would be so extreme to reduce the probabilities to a very low amount.

But could it then happen again? And again? And still again?

A caveat here, though: If the assumed mode of transmission has been wrong all these years, or the vectors different, that might change everything.

I am keeping an open mind. There are so many theories around ME, and potentially so many different causes. Maybe all that it needed is an infectious insult, and the actual infection is less important.

The abstract I cited earlier says

Host-seeking ticks tended to cluster. The Lyme disease spirochete was present in 15.6% of 469 pooled ticks. When the prevalence estimate was based solely on ticks in clusters that contained one or more infected ticks, however, at least 50% of the ticks were infected. We conclude that nymphal deer ticks infected by Lyme disease spirochetes tend to aggregate spatially in nature, and that prevalence estimates based upon a mean value for pools may be misleading.

There could be a range of reasons why virulence/infectiousness or prevalence might halt after a while or stop spreading: deer culling, use of rodenticides, and pathogens sometimes decrease in infectiousness or severity - commonly, in fact, as it is not in their interest to kill their victims. There are also intermediate tick hosts such as cats, dogs and other animals with whom people might come in closer contact.

Maybe it's an atypical tick- or other vector-borne infection which doesn't cause the typical rash or symptomatology.

 

[MeSci]

i know for sure that (chronic) lyme is not ME/CFS but i think 20 - 30% could have it as misdiagnoses. If i follow your statement then ME/CFS doesn't exist at all because it is not 1 disease. This is an interesting point. I could agree with it. ME/CFS isn't one disease i can tell you that for sure.

That's what @Jonathan Edwards and Stephen Holgate theorise - that it may be several diseases.