Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 30, 2013.
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Great article, thank you.
My two cents. Viruses seem to be implicated in many chronic diseases e.g. asthma and Crohn's. The big problem we face is that we lack antivirals. I could get angry at this point because we have to wonder what medicine has been doing the last 50 years except suppressing symptoms but I won't. As long as we don't have working antivirals or better diagnostics, we are not able to identify the role, which viruses might play for diseases.
Now the important part. I'm quite sure, that the viruses are not the causative problem because of a very simple reason. If a virus causes disease, a lot more people should be ill by now because these viruses are masters for spreading in the right environment. In my eyes, most PWCs have a genetic defect, that causes a dysfunctional immune system, which makes them prone to pretty normal viral infections. This is a pure hypothesis but many studies point towards genetic similarities between chronic diseases and genes, which are implicated in viral infections. Unfortunately mainstream medicine is very reluctant to actually look into things, which haven't been discovered already. HIV is a perfect example. If these patients weren't demonstrating back then, nobody would have done anything and no treatment would have been developed for many years to come.
Yes, it's very telling that ME doesn't appear to occur commonly in epidemics and outbreaks whereas you would expect a virally mediated disease to do so, fundamentally viruses exist for no other reason than to reproduce. I'm aware that there are a few outbreaks recorded but i suspect these are simply outbreaks of a random virus which is able to, with a high percentage chance, trigger the initiation of ME for those who have a genetic predisposition to developing the disease. This genetic predisposition is likely to occur in families and close relatives who until very recently have traditionally lived in close proximity to one another - often with whole families living with 5-10 miles of one another. Hence giving the impression of a virus being the causative agent whereas I suspect it is more likely a simple triggering factor.
To use an analogy for my opinion (and I must stress this is an opinion!); the genetic predisposition is like having petrol liberally dousing an area of forest and the virus (or anything else capable of eliciting a strong immune response) simply acts as the single spark that begins the inferno, there then seems little point trying to find the spark at this point as it's impossible to track down and of no use in quelling the ongoing fire. The 'spreading of this petrol', to continue this analogy, is likely done 2-3 years prior to developing ME symptoms as is seen in autoimmune diseases such as RA.
Very nice analogy. The funny thing is, that asthma and other autoimmune diseases run in my family. So if CFS is based on a genetic predisposition, it would perfectly fit to what you have said and that predisposing genes run in certain families and could become a problem for the offspring.
However, I also have a big hope. Antivirals will not be an option anytime soon. I've been watching drug development for a few years now and things get worse and worse (more spending for marketing, less for R&D, no cures anywhere). Anyone who is hoping for new antivirals against adeno-, rhino- or whatever virus will find himself on a sinking ship. These drugs are mostly not developed and even if, nearly 99% fail and the rest is not very effective. It's hard to battle something, that has built in the selection pressure and evolution from the last hundreds of thousands of years.
My big hope is another thing. A healthy human body and healthy DNA also are very reliable in fighting infections. So the only solution I see, also for viral infections, is gene therapy. Next generation full genome sequencing gives us the power to find faulty genes for a reasonable price in a reasonable time. We get better at it year after year (while we DO NOT get better at drug development). So my plan is: Sequence exome or the full genome of PWCs, find the faulty genes, repair them. The nice thing about this plan is, that it can be done. There is no need for new technology or billions of dollars for drug development or 10 years of testing a drug. Gene therapy can be done today and its big advantage is, that in contrast to drug development, it gets better year after year. We have the means, we just need to use them.
We seem to be experiencing 'technical difficulties' with the links to video in the article above, which means 'I have cocked it up' most likely when having to reformat. Sorry about that. Normal quality service will be resumed as soon as I pull my finger out
Normal service has resumed
Thanks Andrew for making a boring subject easy and fascinating. As far as genetics is concerned, my mother had Lupus and I have Crohn's. so it fits with us.
Several of us struggle with the beta herpesviruses - HHV-6 (generally A, but sometimes B), HHV-7, and cytomegalovirus (or HHV-5). Also, Epstein-Barr (HHv-4) clearly plays a role in triggering this disease. I'm not sure why Lipkin was so certain herpesviruses were irrelevant, but it's ignoring a lot of existing - published - research.
And (as most everybody in the community knows), I have done very well on an immune booster/antiviral. So this is not an academic subject for me. When we can keep my immune markers (virtually no NK function and the 37 kDa Rnase-L defect) and my viruses (EBV, CMV, HHv-6A, HHV-7, and Coxsackie B) under control, it also gets my symptoms under control. (for the record, I think HHV-6A has been the worst for me.). With immune and antiviral treatment, I go from a Karnovsky score of 30 to a 70.
Coxsackie B is interesting because it is in the polio family of viruses. Historically, we can trace M.E. (And therefore the Tahoe and Lyndonville outbreaks, which were outbreaks of M.E.) back to 1934, when the first recorded outbreak of "atypical polio" was recorded. Outbreaks were then referred to as "atypical polio," or sometimes Icelandic disease because of a bad outbreak in Iceland. In the UK, scientists were looking at the role of Coxsackie B in M.E, at least as far back as the 1980s.
As for autoimmunity ... Well, perhaps we are talking about different subsets. Or perhaps this is one complex disease. There are many in the MS community who believe that their disease could be the result of a pathogen. Are we so sure that we really understand autoimmunity? HHV-6A appears to cause Hashimoto's thyroiditis, which is considered an autoimmune disease. And now their appears to be a form of HHV-6 that is inheritable. There is so much we don't know.
In a similar vein, we know about the outbreaks that were publicized, and many of us know about outbreaks that never were publicized - but we have no accurate count because CDC has refused to make this a reportable disease. I think we have a better sense of the outbreaks of the 1980s than any others. And I'm convinced from my inbox that we have just seen a whole new round of outbreaks.
I'm curious what are your antiviral and immune system treatments? If you don't mind sharing that it would be very helpful for me.
Thanks for that article!
I am interested in the biomarkers Lipkin found and the importance/validation of these as proof and even stronger validation of ME as a physical problem.
I would love to hear an analysis on that by PR and what researchers/doctors make of this as validation.
Here's a PR article on Lipkin's research, in case you haven't seen it already (But it might not answer your specific questions in detail):
I was hoping for more in the sense that this is proof to doctors and doubters of ME having physiological basis.
What would doubters make of this?
I mean he has found biomarkers! This is a big deal in my mind!
Does the study have to be replicated.
I thought something like that would hit the newspapers.
Maybe that might happen after being published, or maybe I am hoping for too much.
1. We need really to see a paper published. We are told it is on the way, indeed it appears likely it has been submitted and approved - else Lippers would be unlikely to have revealed all that he did in the presentation online.
2. Yep all science requires replication. There have been doubts expressed - not least by patients - about his team not finding active pathogens in the blood and spinal fluid, when it seems so many are being treated for such. So we need confirmation.
3. Lippers and his team will be searching for pathogens in tissue we are told. He didn't enlighten us as to progress and it appears ongoing; so the publication referred to above, is likely to be only part of what the Chronic Fatigue Initiative Pathogen Hunters will be trying to achieve.
4. The microbiome work is only beginning, and is in need of much more money we are told. Watch this space I guess.
5. The biomarkers found are exciting - as are all such anomalies in ME/CFS - but this is also in need of replication.
One thing is I think positive overall, and that is that this work will be regarded as high quality and has used a large (the largest?) number of patients and controls. Lippers is still thinking that a pathogen(s) are involved in the disease - he just hasn't found them or figured out how yet.
When the paper is published, be sure that Simon will be writing frantically, as I am sure will others of that 'y persuasion - thankfully
I think that there is little doubt that ME is a broad sub-heading and under it lie numerous diseases of differing pathologies however I feel the viral evidence is not prevalent or consistent enough to make it the appear the largest of the sub-groups. I agree that viruses for some could be the issue however the ongoing work looking into autoimmunity appears to be showing more consistent results for 2/3 of the patient group, however I will discuss this in greater depth in the following article!
With regard to antivirals/immunomodulators, as I previously mentioned, there is a group for whom I believe viruses to be the underlying pathology (however I suspect this may only be 15-20%) in whom these drugs may work by reducing viral load however it is also of note that these drugs could potentially have a positive effect upon an autoimmune process through disrupting the numerous cycles and pathways that would likely be involved. To my knowledge however, no trial has shown consistent and repeatable evidence for the positive effects these drugs have on ME patients as a whole. Furthermore immune abnormalities such as low NK function do not to me elude to viruses but a generalised dysfunctional immune response. Certainly a dysfunctional immune response could lead to further susceptibility to viruses but this is more an effect of the immune dysfunction and not an apparent cause. It's also interesting that many of the tests for active viruses rely on the measuring of antibody titres to the pathogen however during infection and with autoimmune conditions the immune system undergoes a process known as 'clonal expansion' where antibody numbers are increased not just to the active infection but often to many unrelated pathogens which could explain the occasional occurrence of positive tests to a plethora of different viruses.
It's also worth mentioning though that antivirals on the whole are not close to being fully effective when compared to antibiotics - this speaks to the co-evolution viruses and ourselves share. Many of the viral proteins and receptors have evolved to mimic our own to allow for them to sneak into our cells undetected and hijack it for their own means therefore it is incredibly difficult to destroy this viruses through targeted drugs. To me it appears to be quite a good thing that viruses don't seem to be the malevolent driving force behind ME as, on the whole, we have very little intervention options available to help with viruses, mostly we rely on the adaptive immune response clearing these infections up.
With regard to the outbreaks, I mentioned in my previous post a potential explanation for these however you mention that the first recorded outbreaks were only apparent in the 1930's, I think it's worth noting however that ME is not a new occurrence and similar symptom complexes have been around for hundreds if not thousands of years - to me the formal documenting of such an outbreak simply appears to show an increase in formal diagnosis. Given that viruses exist for no other reason that to reproduce I have to question whether I would expect a lot more outbreaks of ME if a virus truly laid at the heart of the condition.
To discuss MS briefly, I'm aware that there is some evidence that pathogens may be involved in the pathology of MS and i'm interested to see where this evidence leads however it is fairly well accepted that MS is down to an autoimmune process, perhaps these pathogens could be involved in this or perhaps not. I'm not sure it's of use drawing such comparisons though at this point as we're still unsure of the process at the heart of ME so it doesn't make things any clearer to muddy the water looking at MS too!
(is that what is friends call him?)
I think it was Marco who once said I always sounded very familiar with these boffins Having said that I don't do similarly with Professor Edwards - which is odd. I was obviously in a funny mood
p.s. you should ask Simon what he calls Professor Holgate
I would be interested also, as I am having trouble getting hhv 6 under control.
Thanks firestorm that was really helpful!
I have been trying to figure out for years why my WBC count is up and eosinophils and ESR and ANA (lippers talked about these) its gonna stick that knickname firestorm.
I have been sent to rheumatology quite a few times because these are autoimmune markers.
Docs love their blood markers and statistics. well these are not right!!!
I was told once by someone that ME doesn't have markers so have been waiting for an autoimmune thing to flare its head worse for a loooooooong time. hahahahaha!
I didn't believe there were no biomarkers for ME just that you got put in that bracket because it really means we don't know what is up with you.
There must be a lot to have had similar thoughts of course. I have had EBV and the cat poo icky one!!!
But I never even considered that as a possible cause until a while ago and from what I've learnt from PR.
So personally from my own knowledge of human body and what I have read on here autoimmune or gut pathogen are very good paths that researchers are into.
I think I am maybe not the only one feeling excited like we are on the verge of good things then.
I realise we cant go of about this half cocked!
I AM VERY EXCITED ABOUT BIOMARKERS!!!!! VERY EXCITED ABOUT BIOMARKERS!
Jeeze I have totally outdone myself with words tonight.(please nobody burst my bubble)
I look forward to simons' writings!
actually....I am a kiwi what does watcha mean.tehe!
hopefully ill find out tomorrow.
It just means 'Hi'
I'm sure there is a huge amount we don't know about autoimmunity. Research into its causes and mechanisms, and especially into treating underlying causes, seems to be at quite an early stage compared to many other disease processes.
Which makes it both exciting and exasperating!
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