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Looking for a UK doctor to prescribe antivirals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by JanetME, Apr 4, 2017.

  1. JanetME


    Hello all,

    I am a newbie when it comes to antiviral stuff, so apologies if this post is pretty basic.

    I am based between London and Belfast and looking for a doctor/clinic *near* either of those cities who would be able to treat my ME with antivirals (and or maybe IVIG). Does anyone have any recommendations?

    One of my main symptoms are long, recurrent ENT and chest infections. I have elevated IgG for EBV (and possibly herpes virus). Initially I had a lot of bacterial tissue infections, but now they are mostly viral. I feel like if I could boost my immune system my quality of life would improve a lot.

    I am interested to hear experiences of Breakspear, as this is the only hospital of this kind I know about.

    Many thanks,

    J x
  2. charles shepherd

    charles shepherd Senior Member

    Dear Janet

    I assume from what you say that you do not have a copy of the MEA purple book

    So I enclose the section on the background to the use of antiviral drug treatment in ME/CFS below, which you should find helpful

    There is also a long section on immunomodulatory treatments (including immunoglobulin) if you need an up to date summary of clinical trial information relating to immune system treatments in ME/CFS

    I also assume that you may not be aware that the NICE guideline on ME/CFS does NOT recommend the use of antiviral or immunomodulatory treatments - so this is not a form of treatment that is likely to be prescribed on the NHS, unless there are very good reasons for doing so

    I have had a meeting with the UK pharmaceutical company (Roche) that makes valganciclovir to see if there was any interest in setting up a UK clinical trial to run in parallel with the work that is being done by Montoya et al in the US - but without any success

    7.4.6 Antiviral drugs
    Although viral infections commonly trigger ME/CFS, there is very little scientific evidence to indicate that a persisting viral infection is involved in perpetuating ME/CFS. The first antiviral drug to be assessed in a clinical trial was acyclovir (Straus et al 1988a). No benefits were found. Intravenous ganciclovir was found to be of benefit in a subset of patients with abnormal aberrant T-waves in a small pilot trial (Lerner et al 1997).

    Valganciclovir (VGCV), which is active against human herpes virus type-6 infection, is currently being assessed in the USA following a report that it could be of benefit in ME/CFS patients with evidence of persisting EBV infection (Kogelnik et al 2006).

    A more recent study investigated whether antibody titres against HHV-6 and EBV were associated with a clinical response to valganciclovir in a subset of ME/CFS patients (Watt et al 2012). Antibody titres were considered high if HHV-6 IgG was > 1:320, EBV capsid antigen IgG was > 1:640 and EBV early antigen IgG was > 1:160. Treatment with valganciclovir, independent of baseline antibody titres, was associated with self-rated improvement in physical and cognitive functioning in those who had positive HHV-6 and/or EBV serologies.

    Montoya et al (2013) randomised (2:1) 30 ME/CFS patients with elevated IgG antibody titres against HHV-6 and EBV to receive valganciclovir or placebo for six months in a double-blind, placebo-controlled trial. Statistically significant differences between groups were observed in mental fatigue sub-scores and cognitive function. The VGCV patients experienced improvements within the first three months and maintained that benefit for the remaining nine months. In the VGCV arm, monocyte counts decreased, neutrophil counts increased and cytokines were more likely to evolve towards a Th-1 profile.

    NICE does not recommend the use of antiviral treatment in ME/CFS (National Institute for Health and Care Excellence 2007b), and this has had a very negative impact on any interest here in the UK regarding a clinical trial that would aim to replicate these very interesting findings. The MEA has met with a representative from the pharmaceutical company that manufactures Valcyte (one of the brand names of VGCV) to discuss the possibility of a UK clinical trial.

    Dr Charles Shepherd

    Hon Medical Adviser, MEA
    ErdemX, Plum, JanetME and 1 other person like this.
  3. Somer


    Interesting reading - thank you.
    Is the NICE advice likely to be the same in the revised guidelines?
    Do we know anymore about the possibility of a UK trial of VGCV?
    Binkie4 likes this.
  4. ukxmrv

    ukxmrv Senior Member

    Hi Janet,

    I don't know of any UK doctor who treats ME with IVIG (have had it myself but for other reasons).
    Some doctors to consider

    1. Dr Gabrielle Murphy at the Royal Free in London
    2. Dr William Weir (has office in London but used to work in Ireland as well)
    3. Dr Enlander (New York based but visits both Ireland and London)

    You can also buy antivirals online

    Please feel free to send me a personal message if you would like to discuss further
    JanetME likes this.
  5. NelliePledge

    NelliePledge plodder

    Maybe supplements with antiviral properties might help I've not had any tests that can back this up but I now take lysine and olive leaf and I have previously had problems with laryngitis and swollen glands which I've not had in the last 6 months. I still get sore croaky throats when my energy is particularly low but no major flare ups/losing my voice as before.
    Somer likes this.

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