Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Antivirals in the UK

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by NelliePledge, Feb 15, 2017 at 2:17 PM.

  1. charles shepherd

    charles shepherd Senior Member

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    Following on from the quite persuasive work that Montoya has presented (which he did at the 2015 CMRC conference in Newcastle) and published on the use of antiviral drugs in selected cases of ME/CFS the MEA takes the view that it would be useful to carry out further clinical trials to assess the possible use of valganciclovir in ME/CFS. Which is why we held a meeting (not successful) with Roche…..

    In the meantime I would agree with Jonathan that there just isn't the robust evidence of efficacy to justify any sort of campaign to get the NHS or NICE to authorise the general use of antiviral drugs to treat ME/CFS here in the UK.

    However, I think there are individual cases where antiviral treatment might be worth trying - provided this was under the supervision of an infectious diseases consultant, or other specialist who was used to using these type of drugs - and I know of a few cases here in the UK where this is happening/has happened.

    I ought to declare a personal interest here in that my own illness was triggered by chickenpox infection and, along with neurologist Professor Peter Behan, I have a particular interest in people with ME/CFS where chickenpox has been a triggering or exacerbating factor. Anecdotal evidence suggests that these people seem to have a more severe and protracted illness.

    When I was first ill, and spending quite a lot of time up in Glasgow with Prof Behan, we decided to try using a high dose of the antiviral drug acyclovir. Apart from developing some unpleasant side-effects it had no benefit whatsoever.
     
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  2. NelliePledge

    NelliePledge

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    thanks Dr S will the learning from these recent/current individual cases in the UK be brought together as evidence to inform future decisions around whether to pursue trials or is it unlikely now that there will ever be trials in the UK?
     
  3. charles shepherd

    charles shepherd Senior Member

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    Unfortunately, I think it's rather unlikely that we (or anyone else) are going to be able to report on outcomes on all (or most) of the individual cases in various parts of the UK.

    It is, of course, possible that the doctors who are willing to occasionally use antiviral treatment will report on their own cases.
     
  4. Tammy

    Tammy Senior Member

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    You are very fortunate that you came out of it....................not all of us do.
     
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  5. Knockknock

    Knockknock

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    I didnt said satting up trials is ODD, trials is the only thing will shead light to this illness WE NEED LOTS OF THEM LOL
     
  6. Knockknock

    Knockknock

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    I just mentioned all improvements on my post, i think they are quiet a bid.
    80-90% of my symtoms when away, the ones i still have are very mild, valtrex has show to be effective on HSV-1-2, EBV in particular, not so much on HHV6 or CMV, maybe i caugh my disease on early stages, maybe it was just ebv active, im not sure but in me seem to work, montoya use valcyte in the most severly ill patients with high levels of CMV, HHV6 etc.. or high levels of both HHV6&CMV..
    They all say the ealier you get right treatment the less damage your body suffer and more chances of recovery.
    I guess has to do with that.
    I really feel bad for the people that have suffered this illness for many years full of symptoms and cronic disfuntions, the ones have been treated like if they were crazy making up all this.
    It most be hard and frustraring.
    We are not there yet, but at least there is more knowledge, more acceptance, more awareness of this illness than decades ago.
    My heart goes out to all of you have suffered for many years.
     
    Last edited: Feb 17, 2017 at 5:20 PM
  7. Knockknock

    Knockknock

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    Nooo im
    Not out of it, im much better. im still far from what i used to be, im just funtional and much better.
    Yes my heart goes out to all of you that have suffer this for many years with no treatment.
    We are together on this battle even if i go in full remition i will always be here helping avocating to find treatment for all of you.
    This disease is up and down.
    I personaly belive there is not total remision, i believe its mutation that affect our bodys metabolism, methylation, the binding of esential minerals and vitamins to our cells, a pathogen responsible for it, with this mutations our body cant funtion right, cnt clean toxins heavy metals etc the right way, our immune sytem is affected by all this changes and it doesnt funtion properly, as we know many studies around the world late studies in australia show low cytotoxic Nk cell funtion, low cell mediated immunity,
    Our body strugle to keep up with pathogens, even those in our gut or genome.
    Lot of people get better, the body retake again the balnce and if you keep helping with diet, supplememts etc you have a better chance , but you are always at risk that a co infections can always triger a relapse.
    Many of you mentioned Dr Jaime deckoff jones and her daugther used HIV ART'S and got much better, with up and downs, but better, if you remember after doing good she had a crash after she traveled if im not mistaking to hawaii??
    Ok hawaii is a gorgeous place i had the pleasure to be there, but its also know to have diferent spicies of mycoplasmas , for diferent reasons including that mycoplaamas thrive in hights.

    I know this is gona be a little polemic, but since many of you have mentioned Dr Jaime deckoff jones many times in your comments in different threads, this is what she has to say, this was published moth ago, it seems very well documented by some with real knowledge.
    I. ENCOURAGE EVERY ONE TO SEE IT:
    http://www.x-rx.net/blog/
     
    Last edited: Feb 17, 2017 at 5:28 PM
  8. NelliePledge

    NelliePledge

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    just to clarify I was replying to Jonathan Edwards post #15
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    It might be worth looking up mollaret's meningitis which is a chronic reoccurring viral infection from either herpes 1 or 2 or varicella zoster virus (vzv). Its also said that shingles can occur without a rash, strange but theres studies on it.

    The only way to diagnose it though is through a lumbar puncture which doesnt always pick it up either. Some have had several episodes of these meningitis type events with headaches, fatigue , general viral symptoms and several lumbar punctures before they pick up a positive test.

    The treatment is antivirals for these bouts or constantly stay on as supression therapy which can prevent this or atleast reduce severity.

    Many with MM/mollaret's have been diagnosed with cfsme as symptoms are very similar. Wouldnt be suprising if ebv and cmv also contribute to MM. As has been said blood tests arent good at picking up active infections and why lumbar puncture is used to diagnose MM. Its not uncommon for drs to treat patients with avs even though negative lumbar puncture but have a history of reoccurring chickenpox, shingles and or herpes until they get a definitive test.

    There is a mollaret's meningitis page on facebook with many interesting experiences. Sometimes the only way to know if avs are going to help is to try them for a few months. As mentioned, you could get them on a private prescription but might get a better price using an online pharmacy.

    Valcyte is a more toxic av which requires constant monitoring through very regular blood work eg weekly to fortnightly in some cases. Valtrex and famvir have a good safety profile and have been studied for long term suppressive use for up to 12 months. Side effects seem rare and precautionary blood work for liver and kidney function every 6 months is a good idea.

    I have been on famvir since 2009 and so far liver and kidney function have been fine. The drug has been worthwhile for me and i deteriorate quickly if i stop. Its not a cure but it definitely helps me.

    I haven't had a lumbar puncture to diagnose mollaret's but i have had chickenpox twice and many episodes of shingles the last few years, the worst when i stopped famvir. I also have had mono from cmv and ebv along with chickenpox at onset of my cfsme or maybe mollaret's??
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its never mentioned that this study was only 28 days long which is a very short time period compared to what av cfs drs prescribe.

    Acyclovir has a very short half life and has been improved upon greatly with valtrex and famvir.

    Acyclovir requires dosing 5 times a day so sticking to this dosing regime can be hard. Famvir and valtrex require twice a day dosing and patients are much more compliant.

    It was well know Straus was anti any viral causes of cfs and many thought he set this study up for failure. Thats from what i read in oslers web.

    I think a study using antivirals on a wide group of cfsers would fail. It needs to be set up in a way to find who would be the most appropriate patients to use antivirals, maybe start with those with extremely high igg titres and evidence of lymphocytosis and or neutropenia to help narrow down the more appropriate patients.
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have you considered mollaret's meningitis which commonly comes from varicella zoster?
     
  12. Knockknock

    Knockknock

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    y
    Yes sorry i did get a CFS diagnostic from my doctor, a very well know doctor in the illness.
     
  13. Knockknock

    Knockknock

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    As we all know, acyclovir its the less effective of all of them, all well known doctors in the cfs community has mention this before, valacyclovir on the other hand its been suggested by many doctors agaisnt HSV-1-2, VZS,EBV, it does not have much effect on CMV&HHV6 specially ill the patient with high titers or cronically ill, that is why he use valcyte, in that case or more than one virus active.
    But Montoya does use valtex in some of his patients.
    Nancy klimas NSU &her team use Mainly valtrex.
    Dr Pridgen use valtrex, many Dr here in USA use them.
    It seem you guys in Uk , Europe, australia have a diferent points of view about the illness than Us here in the States.

    I guess thats good, that way we can share opinions and results ofcourse respecting everybody's opinion and believes about the illnesess, since science havent been able to proof anything definitive and 100% acure in this illness, that is why i dont understand when you guys ask for a science paper
    ( peer-reviewed papers.)
    When you guys know that there is very little to know on this illness do to the lack of goverment funding and interest.
    Most what we know its based on patients experiances and what all this doctors treating for 20-30 years know.
     
    Last edited: Feb 17, 2017 at 8:33 AM
  14. erin

    erin Senior Member

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    It's been 12 years since I had chicken pox and still fatigued. Maybe it is the adulthood chickenpox is different, immune system can not cope with VZV after one's not a child anymore? It disturbs the immune system.

    I am so surprised that I didn't get chicken pox earlier in my life. How was I able to skip such a contagious disease all in my childhood and teenage years? I remember the other kids having it at school. Did I have an immunity to it initially? That later on it's not there anymore? Who knows?

    Strange thing is my brother had chicken pox 2 years before me and he is 2 years older than me. He does not have ME.
     
  15. Knockknock

    Knockknock

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    I still dont understand how all of you can argue so strongly that antivirals dont have effect on CFS, even comments like Dr Montoya doesnt believe that anymore.
    I think there is more circunstancial evidence that they do help than dont.
    Even in this forum in other threads some people have mentioned the used of HIV ARTS, Viread & Insetres, and have atributed the benefit to the antiviral effect they may have.
    Does anyone of you with better knowledge than me and science pedegree have science publication(
    peer-reviewed papers) that confirm this??
    If so please share with us.
     
  16. JES

    JES Senior Member

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    I didn't argue that all antivirals are ineffective, I simply stated that there is not much interest in valacyclovir and CFS/ME at moment and very little studies to desmonstrate effect. If valacyclovir was so beneficial, Montoya would not be wasting his time testing a much more scary drug, valgancyclovir, which has potential carcinogenic effects.

    Btw, acyclovir and valacyclovir are the same drug basically, they work in the same way inside the body. The only difference is absorption is better with valacyclovir and you need to dose it less frequently.
     
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  17. Knockknock

    Knockknock

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    Im a patient of Dr Klimas,
    They largely used and belive in the Valtex( valacyclovir) so have montoya.
    The interest in valcyte comes from the fact that many patiens have multiple viruses HHV6-CMV-EBV woth high titers sugesting that multuple viruses were active.
    For that ofcourse valtrex was to weak and he needed a much stromger drug.
    Im
    Not saying either is effective on all viruses, it seems more efective in EBV, HSV-1-2, VZS....
    also some some small studies suggest ta ativiral effect it could help preventing the reactivation of CMV&HHV-6 to but not effective at all when the viruses are reactivated.
     
  18. charles shepherd

    charles shepherd Senior Member

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    I agree that the small study you quote was not a good piece of research and it had the unfortunate (and possibly desired) consequence of persuading many doctors at the time (and for some time afterwards) that there wasn't much point in looking at the possible role of both persisting viral infection and antiviral drug treatment in ME/CFS
     
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  19. Knockknock

    Knockknock

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    I dont even think this study i relevant.
    Its not about studies!
    I wish we have had much largest studies, trials, research to back this up, but we havent.
    I think what is more relenvant is patients experiance, many patients here in this forum have post their improvementa and antivirals and some even on antiretrovirals, not just here ,
    but all over the internet.
    Ofcourse like everything, some have been mild, some have been remarkable, some have been none..
    The one thing i agree is thatit maynky work for everyone, since CFS and severity culld be do to more than a single factor.
    More than one coinfection since our immune system it has some deficiency.
     

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