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Firestormm Thanks for your detailed reply.
You are welcome. They are good questions/concerns to have I think and I share them too.
Looks like there are different views about this study atm.
Until such time as the paper(s) are published and even afterwards I suspect there will be different interpretations. The results are a slap in the face for many a theory - from patient and from various experts over the years.
Yes it could be that the search for viruses has really only just begun and that they are in fact hiding in tissues which are hard to access.
The 'hiding in tissue' is a theory, and something that remains to be proven. One of the great things about this study in relation thus far to active viruses was the means by which the search was done. Very thorough and a very large cohort. I feel like asking anyone really to 'beat that'. I think this marks the beginning of some high powered studies that ME has so desperately been in need for for decades.
We have had only small scale and insignificant studies up until now, but with independent financing as well as more focused government finance - perhaps we will see more on a similar scale. Stephen Holgate in the UK has already indicated he is also looking to conduct similar powered studies for example, and as more clinicians and researchers team up, I hope that we will see many an old theory put to the test and new pathways open up.
Could it be that the Lymes etc diagnosis were already out as these Drs (Montoya etc) had tested for that already and perhaps treated it along with all the common viruses?
No. These were patients with a diagnosis of ME/CFS and not Lyme's Disease, but the search included looking for the Lyme Disease bacteria - as well as a whole host of viruses and other pathogens. There are - as you can see from this forum - a lot of people who have or have been told they have the Lyme Bacteria and are being treated for it mainly with antibiotics as it is believed - or they are convinced - this bacteria is responsible for their state of poor health.
Some have ME as a diagnosis, some have Lyme Disease, some don't have either but have the symptoms which are very similar in the chronic state. What this study means is - to me - that people with a primary diagnosis of ME i.e. that meet the criteria, do not have the Lyme bacteria i.e. that the active bacteria cannot be responsible for their ME.
It seems strange people respond well to anti virals if there are no viruses there. So maybe Lipkin just didn't hit the right spot looking in blood and spinal fluid?
Yes it does. We hear a lot of anecdotal stories. We don't have firm data on very much in our little world. We have to consider the effect of being prescribed something, rather than nothing, of being told from having a test, that we have something, rather than nothing, etc. and as I said, some people may well be reacting positively to such treatment - understanding why is the key: but this study has shown that it cannot be because the drugs are fighting an active infection.
I am ever thinking to myself, "Well that only applies to those people they looked at in that study, how can it apply to everyone with a diagnosis of ME?" and I think in part it is because our trouble is at present we simply do not know beyond clinical opinion, use of criteria, elimination of alternate explanations, who actually has ME. We have no biomarker, not test, and until we find one we have to rely on these studies as a 'best we can do under the circumstances' but that doesn't mean this one should be dismissed.
However, if in the real world, someone with a diagnosis of ME, has been told by their doctor they have an active infection and are being treated as a result with an anti-viral medication, and they feel better during and after treatment - to such an extent that the symptoms they have associated with ME disappear and they can return to a much more normal existence: good for them. Wish it was me. Wish it had been proven to apply to ME as a disease - but it hasn't.
If deep sequencing is what it claims to be then surely they would find some EBV, CMV etc if it was there. If these really arn't there then what do you test for in terms of infectious pathogens? I am skeptical that they arn't as so many people report positive labs for them. This is why I wonder if perhaps they were already treated as part of the protocol before being admitted for this study.
I am no scientist so I don't understand the complexities of the actual testing employed by Lipkin's team here though as the article and transcript indicated, these tests had resulted previously in the discovery of over 500 viruses. I am more than happy for the results to be shown to be wrong, but I don't think we have seen such testing applied to ME patients before anywhere.
Not entirely sure I understand you here. They can only test for something they know about in the first place. So - as in the article and transcript - they had a list of things they set out to find, and couldn't. This was an active pathogen hunt and they found nothing of significance.
When we get the papers we will be able to see the nature of those included in the cohort perhaps. If I was to be included in research such as this and was fighting a cold or flu, I doubt they would take me on until I had gotten over it. Remember, this was trying to see if any of the likely candidates could be said to be involved with ME.
The importance would have been not in finding a few random infections in a few patients: but in finding pockets of infection or large numbers of infection in patients and little or no infection in controls of a similar type
A result that would have meant something tangible that could possibly indicate an association of active pathogen and ME disease.
The only one they did find, was - as you said above - in around 1.4% of patients and 1% controls. For there to be a firm association you might expect something - I don't know - around the region of 60% in patients and 1-2% controls.
Allenoviruses are very common across all populations - apparently - and the significance of them remains to be seen. Science is still pursuing the role they play (or don't play) in disease.
The retroviruses - while some have chosen to indicate this as a significant find or one that needs explanation - were played down by Lipkin in his presentation, and until we hear anything more about them I don't think we can consider them relevant to the results as a whole.
We got nothing, which is a shame and a disappointment perhaps, but the study was far from negative, was it? Quite exciting I would have said given what they were able to find. And I do hope to hear more as they pursue this larger project, about the cytokines and 3 year differential.
Personally, I think the microbiome will take a long long time to work through, but generally, science seems to be making a beeline now to this area in relation to several chronic diseases. For some reason it excites me far less than other aspects of the search, probably the association with it being a crap-shoot