SOC
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I've had shingles multiple times, and at an age the doctors called "unusually young for shingles".I have never heard of an ME patient even getting shingles
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I've had shingles multiple times, and at an age the doctors called "unusually young for shingles".I have never heard of an ME patient even getting shingles
I've had shingles multiple times, and at an age the doctors called "unusually young for shingles".
This is the core principle of pulse dosing with antibiotics for bacterial infections. I am not sure if its ever been tested with antivirals.I have often wondered if we could make these viruses reactivate on purpose while smashing them with avs. Its though that avs only work on the viruses when they are reactivating.
@SOC -
I'm highly skeptical that herpesviruses play an important role in ME, although I believe they can sometimes trigger it. One piece of evidence that I would be looking for would be a substantially higher rate of shingles. I have never heard of an ME patient even getting shingles - although I'm sure there must be some - yet if their ability to control herpesvirus infections were so impaired as to cause an ongoing illness, one would expect to see it frequently. Also, many of us never had any kind of obvious herpesvirus infection at all other than chicken pox as a kid (my mother and I included). No infectious mono (caused by EBV or CMV - some use the term for both), no cold sores, etc. - and these are all common in the population. I did have roseola as a kid, but almost all kids do - and it was neither unusually severe nor prolonged, and I had a generally healthy childhood.
@redaxe
I have often wondered if we could make these viruses reactivate on purpose while smashing them with avs. Its thought that avs only work on the viruses when they are reactivating.
How do we know that we (or at least some of us) weren't hit by a mutated strain of EBV or HHV6 that produces a different pathology to infectious mono? Presumably you'd carry some resistance to the virus but being a new strain it could do some damage to the immune system or establish a higher level of non-permissive activity?
I did a quick google on EBV and RA.............there seems to be numerous articles on this subject indicating a possible link between EBV and RA as well as other "autoimmune disorders"don't think so. No link has been found despite 30 years of people trying very hard to find one. More or less everyone has EBV and there is no link in time between infectious mononucleosis and RA.
I did a quick google on EBV and RA.............there seems to be numerous articles on this subject indicating a possible link between EBV and RA as well as other "autoimmune disorders"
Well...................the body just doesn't get sick, inflamed, etc.etc. etc. for no good reason and there seems to be plenty of researchers who think that a link between virus and autoimmune is important enough from the information that they have already gathered to continue looking into this. I applaud the researchers who don't give up trying to find root cause for disease.Yes, many, many people, like my good friend Patrick Venables, have made a career out of trying to link EBV to RA or lupus or whatever. But now that the dust has settled nothing was ever really pinned down. Immunology is full of theories but less full of convincing evidence. Everyone wants to find a trigger infection because they think you have to have an environmental factor. But you don't.
Well...................the body just doesn't get sick, inflamed, etc.etc. etc. for no good reason and there seems to be plenty of researchers who think that a link between virus and autoimmune is important enough from the information that they have already gathered to continue looking into this. I applaud the researchers who don't give up trying to find root cause for disease.
I am not suggesting there is no cause but the idea that we have to have either a genetic or an environmental cause is just plain wrong.
We are all trying to find the root causation of disease but personally I think we should move on from speculations from fifty year ago to something that fits with the figures!!
The rudimentary machinery in the scientific part of my brain struggles even with basic things, so I do apologise and hope you'll bear with me.I am not suggesting there is no cause but the idea that we have to have either a genetic or an environmental cause is just plain wrong - the epidemiology textbooks tell us that. The trouble is that immunologists tend not to read any epidemiology. Most autoimmune diseases have genetic predispositions but the ret of the causation appears to be chance - like in many cancers. And we have very good explanations from within the immune system for why that should be so. The immune system makes antibodies and T cell receptors at random. So I am not suggesting 'no good reason' - I am suggesting that we need to make sure that the reasons actually fit the evidence.
I am not suggesting there is no cause but the idea that we have to have either a genetic or an environmental cause is just plain wrong - the epidemiology textbooks tell us that. The trouble is that immunologists tend not to read any epidemiology. Most autoimmune diseases have genetic predispositions but the ret of the causation appears to be chance - like in many cancers. And we have very good explanations from within the immune system for why that should be so. The immune system makes antibodies and T cell receptors at random. So I am not suggesting 'no good reason' - I am suggesting that we need to make sure that the reasons actually fit the evidence.
Lots of researchers think viruses are involved because their teachers thought that and the same back to 1950 when viruses came to be understood. The reality is that nobody has in fact gathered any information to link viruses as causes to autoimmunity - with maybe a few exceptions (I am not sure I can think of any convincing ones though).
We are all trying to find the root causation of disease but personally I think we should move on from speculations from fifty year ago to something that fits with the figures!!