use of modafinil being extended in the UK

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jun 29, 2004.

  1. tansy

    tansy New Member


    The UK drug licensing authorities have extended the clinical indications for the use of modafinil - a drug which stimulates the central nervous system through mechanisms which are currently uncertain. Modafinil is
    already being used as a successful treatment for narcolepsy - a condition involving attacks of unpredictable and pronounced daytime sleepiness. And it is currently under investigation in the UK as a possible treatment for ME/CFS.

    The extension of the UK product license means that modafinil can now be prescribed for a variety of conditions which involve excessive daytime sleepiness. Besides narcolepsy, these include other neurological disorders such as Parkinson's disease, myotonic dystrophy and multiple
    sclerosis. Modafinil may also be a useful form of treatment for sleep apnoea and shift work.

    The dose of modafinil being recommended in these circumstances is 200mg to 400mg daily in two divided doses in the morning and at noon.

    The July edition of the ME Association magazine will carry further information on the possible use of modafinil in ME/CFS, including an encouraging case history where it appears to have been of very significant benefit in someone with long-standing severe ME.

    Dr Charles Shepherd
    Medical Adviser, MEA

  2. nickname

    nickname New Member

    On the one hand I think that it is good that the drug licencing authorities have extended Modafinil's use.

    However, I was offered this privately about 3 years ago, but in discussion with my then consultant, I decided that any drug that stimulates the central nervous system in ME, has to be treated with extreme caution - we do not need our nervous system any more stimulated than it is already. I have a friend with ME who has been made severely and grossly ill thru a drug (not Modafinil) given to her by her consultant, which was designed to stimulate the nervous system. I cannot for the life of me, fathom out why.

    Also I,like so many PWME, have profound sleep problems with initiating it, maintaining it and the quality of it, all of which is managed by drugs/supplemets in order to achieve some quality of sleep. My view, and one that my consultant shared on discussion, is that any drug that is designed to keep people awake, and who have sleep problems as I do, should be very wary of Modafinil.

    Thanks for posting Tansy to keep everyone uptodate. It's good to know what's out there.

    best wishes
  3. tansy

    tansy New Member

    I too would be very wary of using a drug of that nature; for a significant number of us with ME/CFS drugs that stimulate the nervous system, have the potential to do harm.

    Unfortuately some (even most) of out nationally recognised ME/CFS experts appear to have less undertanidng of the illness than well informed patients. That's why they are so resistant to adopting the Canadian Criteria.