The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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If this is a temporary post-viral fatigue then why aren't I feeling better?

Discussion in 'General ME/CFS Discussion' started by Frustrated, Apr 19, 2017.

  1. Frustrated

    Frustrated

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    I have fatigue, brain fog, digestive symptoms (e.g. bloating) and slight occasional muscle aches from a virus I came down with in December that caused flu-like and GI symptoms, a rash and recurred. I have been sick for 4 months now. While I'm not housebound/bedbound, I'm not showing any signs of getting better.

    One doctor I saw said that it could be a post-viral case that resolves with time and told me to come back in the summer before seeking a CFS diagnosis. I recently saw another who reiterated that people do recover from PVFS (something I doubt) and said that while PVFS can lead to CFS, they are not the same thing. He also told me I do not want to be diagnosed with CFS due to the psychological implications and that then I'd be convinced I would never get better even though I may do, that I don't want to be labelled with it etc.

    I'm beginning to think that PVFS never goes away and that doctor just tell people that it can do to prevent newly sick people like me from being severely depressed knowing that we are doomed to have CFS forever. What convinces me even more that I'll never recover is the research showing that many cases of PVFS are caused by a persistent viral infection (e.g enterovirus) that the body cannot remove and does not show up on normal medical tests, rather than post-viral complications. This means that we may never recover unless targeted antivirals were developed (which at this point in time seems unlikely).

    Do you think I'm wrong for assuming that I a) have a chronic viral infection that is probably entero based on my flu-like, GI and rash symptoms and the exclusion of EBV and that b) I'm not going to improve and do in fact have CFS?
     
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  2. Cheesus

    Cheesus Senior Member

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    I had PVFS when I was a teen. It went away after about 6 months or so, maybe a bit longer. I know someone who was sick with glandular fever (mono) for around 2 years.

    There is no reason to think that. Even if you do have CFS, you could still improve - a lot of people do.
     
  3. Matthew Jones

    Matthew Jones Senior Member

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    It can go away. I was told by a professor of infectious diseases after still being ill after being cured of lyme disease that 90% get better in two years, from post infectious fatigue syndrome. Unfortunately I wasn't one of those 90%, but you still can be. Just rest and be very patient and hopefully you will get better, the odds are still in your favour!
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    I'm in a similar situation though with more limited functionality

    My strategy has been to research as much as I can, see as many speciaists as I can, and put together an experimental protocol based on research with the best outcomes and my own understanding of the etiology. Will it work? I don't know. Could I just improve on my own? Maybe but I feel like quite a bit is on the line

    I'd be curious to know if there are symptomatic/ metabolic / immune / nuerogical differences beteeen PVFS and ME/CFS
     
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  5. Aurator

    Aurator Senior Member

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    If yours doesn't, your doctors will probably start calling it CFS.
    These are just labels. Nobody knows yet what they are really describing. ME too is a label.
    After four months of being ill, you clearly have a chronic condition of some kind, but until science can tell you what is going on in your body, it's pretty futile concerning yourself with what label you should give yourself.

    Labels do make a difference to how sick people are treated, but when what the label is describing is still a medical mystery, you the patient are pretty much free to choose whatever label you prefer out of the ones on offer, as are medical personnel.

    I've had my condition described by all three of these labels by different medical personnel at all stages of my illness. I attach very little importance to what nomenclature these different people have chosen to use.
     
  6. Gday

    Gday

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    Get all your infectious blood tests done especially EBV all tests for any of the herpes family If you have something then you need antivirals and to see an infectious disease consultant. Get these done asap as you stand a better chance of a good recovery the quicker you know and get treated.
     
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  7. Frustrated

    Frustrated

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    I tested out for EBV and CMV already. I can't get tested for the other stuff. I don't have the money to travel to America and see an infectious disease specialist.

    What I think probably have (chronic enterovirus) doesn't show up on a blood test, the only person who can test for them is Dr Chia in America via a stomach biopsy. There aren't antivirals anyway.
     
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  8. Dechi

    Dechi Senior Member

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    @Frustrated I am in Canada and will soon have a gastric biopsy to send to Dr Chia for enterovirus testing. You might be able to do the same from your country.
     
  9. Matthew Jones

    Matthew Jones Senior Member

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    This is not true, the current research suggest CFS is some kind of autoimmune disease rather than a chronic infection in the majority of cases. Chronic infection is a slim possibility. PFVS is basically the same thing as CFS only shorter lasting.
     
    Dechi likes this.
  10. Jesse2233

    Jesse2233 Senior Member

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    Are there other examples of autoimmune disease resolving on their own? Genuinely asking as I don't know the answer
     
  11. Frustrated

    Frustrated

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    Dr Chia has found proof of a link with CFS to chronic enterovirus. He has found latent enterovirus infection in both the stomachs and brains of many patients.

    Autoimmune diseases are for forever right? So even if it did have an autoimmune cause, it would still suport my beleif that no one recovers?
     
  12. Frustrated

    Frustrated

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    Also if this is autoimmune and not persistent viral infection, then why is it common for people to improve after taking antivirals such as oxymatrine/equilibrant?
     
  13. Mohawk1995

    Mohawk1995 Senior Member

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    The presence of an autoimmune disease does not mean it is all permanent. This is especially true of the effects of the disease. These may be treated successfully. Meaning the pathological consequences can be managed or even reversed. There is recent evidence linking Parkinson's to Autoimmune factors. Because it is primarily a neurological disorder, treatments can reverse the pathological issues and then maintain relatively normal function. While the primary pathology remains. In other words the person still has Parkinson's.

    May not work for everyone, but what you are hearing from most of the responses is good advice. We do not know what the future holds both potentially good or potentially bad. Yes ask questions. Seek medical advice. Pursue treatment that you feel is reasonable or worth the risk. BUT most of all attempt to keep living your life to the best possible.
     
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  14. Mohawk1995

    Mohawk1995 Senior Member

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    Antivirals don't just treat viruses. Some have been proven to be powerful neurostimulants. Amantadine has been used in the treatment of Traumatic Brain Injury and Post Concussive Syndrome to literally wake the brain back up and reduce encephalopathy. Being that there is definitely a Neurophysiological factor at play in CFS or Myalgic Encephelomyelitis (a neurological designation), a neurostimulant could play a role in treatment even for the "persistent viral infection", but certainly for a primary neurophysiological systemic disease with metabolic, biochemical and immune pathology as some propose CFS/ME to be.
     
  15. halcyon

    halcyon Senior Member

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    Without a definitive test for ME we're arguing semantics here, but PVFS and ME are the same thing, or were intended to be the same thing. The PVFS term became popular in the UK in the late 80s/early 90s and then fell out of favor when CFS came on the scene. All three are classified at the same code in the ICD. Post-viral fatigue is not the same thing as PVFS. People do recover from ME/PVFS within the timeframes we're talking about here; this has been documented during outbreaks, a percentage recover in weeks or months, but it seems rare.

    No, I think it sounds like a good bet given the onset, route of exposure, and course things are taking for you. There's no good way to figure out prognosis at this point. I think your best bet would be to avoid overexertion at all costs and think about trying some over the counter treatment such as Equilibrant. It's possible that you will improve or stabilize, it just can take longer than you think.
     
  16. JES

    JES Senior Member

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    There are enterovirus antivirals, both drugs and supplements (see this thread). The problem is it's unclear how effective they are for CFS/ME and how well they work in the body. Dr. Chia has successfully treated lots of patients with enteroviral CFS/ME, I think his successs rate was 48% or so, but this might be outdated information now. Men in particular recover quicker with his treatment, though I wasn't one of the lucky ones. Equilibrant/Oxymatrine, which is Chia's primary treatment, is an immunomodulator as well as anti-enteroviral and can be obtained easily online if you can't travel to see him.
     
  17. Aurator

    Aurator Senior Member

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    I'm afraid you've misread what I said. I said "you clearly have a chronic condition of some kind".
     
  18. Matthew Jones

    Matthew Jones Senior Member

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    Sorry, my mistake.
     
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  19. edawg81

    edawg81 Senior Member

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    My cfs/me was first developed from chronic migraines and episodes of post viral fatigue that would last 2-4 months (probably very mild me/cfs). Although I used to mostly recover from each episode my general health was deteriorating until I had a big onset last year after a cold that I have not recovered from which is now moderate me/cfs. I always went to the doctor when I had a PVF episodes and drs just told me to rest or get checked for allergies or that I'm depressed. Since I could still function and drs could not do much I just ignored it and moved on with my life. After my big onset and I became non-funtional I found a dr willing to treat me.

    I suggest if possible you try to find a open minded dr willing to work with you and test for common pathogens if possible. If you want you can try equilibrant, I believe you can order it online:

    http://equilibranthealth.com

    The best overview of ME/CFS treatment is here:

    https://sites.google.com/site/cfstestingandtreatmentroadmap/

    I think (wild guess) in the end ME/CFS is an auto-immune condition, but that medication to treat pathogens can (in some people) have an immune modulating response, hence why they occasionally work in some people.
     
  20. caledonia

    caledonia

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    Yes, my autoimmune thyroiditis went away. I don't need medication any longer and my complete thyroid panel is normal.

    It didn't really resolve on it's own though, but if you weren't paying attention, you would think so. It resolved about a year and a half after my last mercury filling was removed. I also had several other things improve around that time, consistent with removing mercury.

    I'm currently chelating out mercury, lead and arsenic with the Cutler frequent dose chelation protocol.

    Note that mercury does a number on your immune system. So if you have persistent viruses that you can't shake, that may be the reason.
     

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