Study of Insect-borne Infections in ME patients planned

[Bob]

If a person is infected with Lyme bacteria, and they have ME-like symptoms, then they don't actually have ME, but they have Lyme, in which case the proposed study isn't relevant to ME, but it may help patients currently diagnosed with ME who are unaware that they have Lyme.

If a person was previously infected with Lyme bacteria but they have been treated, and still have symptoms then we already know that they were infected with Lyme bacteria, but they may have an unidentified coinfection. Again, this study isn't relevant to ME, but it may help patients diagnosed with ME, if there is a previously undiagnosed coinfection.

Is it possible to be infected with Lyme but fight off the infection naturally without antibiotics? If so, then the study may be relevant to ME because it might identify a post-Lyme syndrome that currently gets diagnosed as ME. This would help to create a subgroup of ME patients.

 

[Bob]

Other thing I was thinking was along the lines of the (possible) ME outbreaks being in the Summer when Polio was rife.

Could that fit in with a possible insect or similar vector? Was the Plague (good point @Hutan ) more common in the Summer?

Interesting point. In the UK, mosquitoes and many other insects are only apparent in the high summer. And many animals (who may carry ticks) hibernate in the winter. Birds migrate depending on the season. In the middle of high summer, even lakes and oceans change: e.g. jellyfish and plankton appear. (Not that they are related to ticks, but I'm just pointing out other general seasonal changes.)

Edited to add: Even the winds can carry spores, fungi, bacteria etc., which would change depending on the season. Dr Lipkin discovered that an illness was caused/triggered by seasonal winds that carried fungal spores (or similar) high in the atmosphere. (I can't quite remember the exact details.)

 

[duncan]

@Bob, I think you are incorrect relative to this study. This study is of confirmed (supposedly) ME/CFS cases, from what I understand. A primary purpose is to gauge the prevalence of vector-borne diseases in ME/CFS patients, with an eye to clustering.

 

[Bob]

@Bob, I think you are incorrect relative to this study. This study is of confirmed (supposedly) ME/CFS cases, from what I understand. A primary purpose is to gauge the prevalence of vector-borne diseases in ME/CFS patients, with an eye to clustering.

But if someone has a vector-borne disease, do they actually have ME? Surely not? If the vector-borne disease is treated then the ME-like symptoms may be resolved. (I'm not saying it's not a useful study.)

 

[duncan]

Are you assuming one disease has precedence over another other than in chronology? Do you think having one disease precludes the possibility of the other?

I am assuming whoever qualified this cohort got it right - big assumption, I know. If so, what they may find is evidence of exposure - this may suggest a causal link to ME/CFS. They may find seropositive individuals; this may indicate a misdiagnosis of ME/CFS, or not;it simply may mean this individual had both diseases.

I am pretty sure there are other permutations.

 

[Gijs]

Well said Bob. I totally agree.

 

[Gijs]

@duncan, in Belgium there is a doctor professor de Meirleir who claims that 90% of the people with ME have chronic lyme disease. He even stated that ME then no longer exist.

 

[duncan]

@Gijs , he may be right. Personally, I would not agree with that claim.

 

[justy]

This study has nothing to do with ME/CFS.

well that's a strange view because they are looking at the blood of PWME to see if they can find vector borne pathogens

I believe that some patiënts could have Lyme (misdiagoses) but there symptoms are much more objective then in ME. 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 occur in ME/CFS.

Have you never heard of Cheney's work with heart disease in M.E? white lesions on SPECT (objective evidence of M.E) have you never met a very severe M.E patient who is totally paralysed and cant move? have you never heard of one single M.E patient who had seizures? I have seen, met and heard of lots of PWME that have seizures. Do you even know what M.E is?

But if someone has a vector-borne disease, do they actually have ME? Surely not? If the vector-borne disease is treated then the ME-like symptoms may be resolved. (I'm not saying it's not a useful study.)

The problem is that most often, especially in the UK the vector borne disease is never diagnosed and treated - the possibility is that undiagnosed, untreated vector borne diseases could lead to an immune assault that ends up either looking like or actually is M.E. I believe they are actually also looking for novel vector borne pathogens, so I see no reason why this study isn't as interesting or useful as any other pathogen in M.E study.

In the UK the dx of M.E/CFS is bandied about by GPs with minimal investigations and testing. Vector borne diseases are hardly EVER suggested and tested for and then the testing is not accurate. Some may be pure misdiagnosis, others may have complex medical histories with a number of immune system assaults leading to M.E. or as Horowitz calls it a type of MSIDS - Multi system infectious disease syndrome.

 

[justy]

But if someone has a vector-borne disease, do they actually have ME? Surely not? If the vector-borne disease is treated then the ME-like symptoms may be resolved. (I'm not saying it's not a useful study.)

How do we all KNOW we haven't got a vector borne disease such as but not confined to Lyme disease. And if we don't know we have it, and it goes untreated for 10, 15 or 25 years, or if we got it congenitally from our mothers then how do you easily resolve decades of damage? Perhaps those whose immune systems cant resolve it on their own are the ones who develop M.E. In which case Lyme is no different in triggering and maintaining symptoms that EBV for example.

 

[justy]

@duncan, in Belgium there is a doctor professor de Meirleir who claims that 90% of the people with ME have chronic lyme disease. He even stated that ME then no longer exist.

I'm not sure that we need to endlessly re hash this old argument - although I know you are hell bent on bringing it up at every opportunity, but for the purposes of clarity - for others reading this thread who have managed to miss this particular argument:

what KDM has said is that 90% of the people coming to his clinic who get tested are positive for intracellular bacterial infections - these are not all Lyme, some may be Bartonella without Lyme, or Chlamydia pneumonia which is a well know trigger for M.E (see Hips road map).

As far as I am aware he doesn't say M.E doesn't exist. He is an M.E specialist and co authored the ICC criteria. Surely a finding of an awful lot of chronic infections in a patient group is something to be looked into further and not just ignored and swept under the carpet don't you think?

 

[duncan]

Well, because testing is so woefully inadequate, it is certainly possible all ME/CFS patients have a vector borne disease, and perhaps even the SAME disease.

Who knows, maybe it's a Borrelial agent. That fact is, we do not know, and that should be terrifying.

If all the ME/CFS patients and clinicians and researchers really had a handle of the extent of the TBD debacle, I'd wager the resistance (even derision?) toward the involvement of TBD's would not be as shrill.

Now, don't everyone rush to beat some sense into me. I doubt this is the case. But that it IS possible should be on everyone's radar.

 

[Bob]

Well said Bob. I totally agree.

lol, I'm not sure if i agree with me any more. As others have pointed out, this study is looking at a range of possible pathogens, any of which may potentially cause ME symptoms in a significant subset of us. It's as legitimate as looking for any other pathogen in ME patients. Also, if a pathogen has been successfully removed by our immune systems it may still have been a trigger for ME, so I hope they are testing for antibodies as well as active infection.

 

[Mij]

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.

I'm believing more and more that this is the case. We are stuck with an abnormal/dysfunctional response of the immune and autonomic system.

 

[Gijs]

@justy, i know Cheney's work and i never seen any papers with carditis in ME patiënts like you suggest. De Meirleir is looking for Lyme in ME patiënts so his statements look important to me especially in this topic. I know De Meirleir and his work very well. He really said that 'we can argue if ME even exists because he finds chronic lyme in 90% of his ME patiënts'', it is even somewere on tape but he talks in dutch i don't think you could understand this language. I think he is responsable for his own words if you like it or not. If you read the criteria of ME you would know that carditis, seizures and paralyses don't primarly are included.

 

[Gijs]

@ Bob, looking for more pathogens in ME is very welcome I think they are never going to find only one for ME.

 

[Catticus ferralis]

The thing I came away with from the article was Knox looking into TBEV as the possible culprit to chronic Lyme/M.E.I looked it up on the dreaded CDC site and scarily it said there is as yet no treatment to this virus other than anti-inflammatories while it can cause permanent neurological damage in some patients(of an all too familiar kind).Also,It is not transmissible person to person but some evidence from mother to child!

 

[sarah darwins]

lol, I'm not sure if i agree with me any more.

I admire a man who's not afraid to disagree with himself!

 

[sarah darwins]

Well, I've run the numbers and I think we can now draw a line under this.

If you don't like the look of it, I can run a meta-analysis on it next week and just keep doing that until we get one we like. That is how you do science, isn't it?

 

[MeSci]

Who knows, maybe it's a Borrelial agent. That fact is, we do not know, and that should be terrifying.

Most things in science haven't been discovered yet. No point being scared!