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Low Dose Naltrexone - Discussion with Prime Minister

Discussion in 'General ME/CFS News' started by Diva55, Feb 27, 2010.

  1. Diva55

    Diva55 Member

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    I read this on the Yahoo LDN group - great news! (I posted this also on the LDN thread but thought it warranted it's on thread)

    In case you're unaware LDN is used (when people can actually get hold of it) for a wide variety of illnesses including MS, Cancer, HIV but also FM & CFS.
    -----------------------------------------------------------

    It was just announced on the Facebook LDNNow site that Jayne Crocker was able to spend some time this am speaking with the Prime Minister of the UK Gordon Brown about getting LDN available as a front line treatment.

    This is wonderful news. It looks like LDN is on its way at last. By the way, does anybody in the US have any idea of how to contact President Obama? If they can do this in the UK, why can't it be done in the USA?
    Judy H
    To better health through knowledge
    Started taking LDN (Low Dose Naltrexone) on 1/21/2009 for Fibromyalgia, Hypothyroid, PCOS and Restless Legs
    http://health.groups.yahoo.com/group/LDNforFibro/
     
  2. jace

    jace Off the fence

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    Brilliant! I have just today decided to try and get my GP to prescribe Naltrexone to me - I know how to 'step' on it for the low dose. It's crazy that one of the really helpful (to some not all) medications is not easily available, even though it is cheap and pretty safe and well tested.
     
  3. Jenny

    Jenny Senior Member

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    Diva - was she asking Brown for LDN to be a front-line treatment specifically for ME, or for other conditions?

    Jenny
     
  4. bjsmith

    bjsmith

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    I have tried low dose Naltrexone in the past. I didn't notice any pros or cons with it, but I'd like to try it again. I got it compounded at a low dose.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Many people find they have to "hit" the right dose to have a therapeutic effect. Others feel it immediately at a very low dose. It is one of those meds that often requires some fiddling. For me, the good effects were progressive as I raised the dose.

    Sushi
     
  6. valia

    valia Senior Member

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    Hello Sushi, can I ask what those good effects were, what improvements you felt?
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    For me, increase in energy, better sleep, and much better immune function. Another friend has gone from pretty much house-bound to able to drive again and go out a few times a week. It isn't the same for everyone, though, and some people don't seem to notice any difference.

    Sushi
     
  8. valia

    valia Senior Member

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    Thanks Sushi,

    I have been thinking about it for quite some time now, I barely leave the house and had to give up driving 2 years ago. I have Lyme too and I have heard some are taking it for that, but any increase in energy from my current empty tank state would certainly be worth giving it a try.
     
  9. Diva55

    Diva55 Member

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    Hi Jenny

    I think it was for ALL illnesses that have been seen to be helped by LDN - I think that's whats meant by "front line treatment" but just guessing at this as the info is scant.

    I've been reading the Yahoo LDN for Fibro group as I have FM / CFS & not ME so can't give you specific info on ME. There is an LDN thread on this board under General Treatment Section that may give you more info.

    This was posted today by Jayne Crocker who spoke to the Gordon Brown:
    -------------------------------------------------------------------------------------------------

    Thanks Judy and yes I did speak with our Prime Minister today re LDN - he was very serious about it. It wasn't all smiles and laughter. Thank you for bringing this awareness to the LDN for fibro group - it has a huge role to play in getting LDN available as front line treatment first and foremost. So for those who haven't signed up to the EU petition, please do so, link below my signature.

    Thank you.

    Jayne Crocker





    www.LDNNow.com

    Important! Please sign our LDN petition to the European Parliament by clicking here

    tel: +44 (0) 7877 492 669

    Dr Chris Steele MBE, talking about LDN

    LDNNow, a patient and friend led organisation (so not a charity) with no funding and no affiliation to any company or organisation, but rather a group of concerned individuals focussed on improving the health of those who suffer from the many diseases and conditions that LDN treats.
     
  10. Diva55

    Diva55 Member

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    Hi Jace
    I've been down that route - trying to get my GP to precribe LDN. If you have problems with this PM me & I can give you some info to hopefully help.
    Best wishes
     
  11. Jenny

    Jenny Senior Member

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    Hi Diva

    Thanks for your reply. I think it's important to know exactly what Brown is being asked to do. How is 'illnesses that have been seen to be helped' defined? What evidence would be needed? I gather there's more evidence for its effectiveness in some other conditions than with ME. It's very unusual for a drug to be prescribed for a wide range of illnesses without clear evidence and GPs are increasingly reluctant to prescribe anything 'off label'.

    So I'm worried that GPs will be told they can prescribe it for some conditions but that once again ME is left out in the cold.

    Like jace, I'd be grateful for any advice on how to get my GP to prescribe it.

    Many thanks.

    Jenny
     
  12. Diva55

    Diva55 Member

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    Hi Jenny
    I don't know anymore details than I posted. I think there are various Yahoo groups for LDN. I have joined the FM and General one which is mainly focused on MS. You may want to look into what groups apply to you. Also look at the LDNnow site as there may be more deatils there as I haven't followed it up.

    Send me a message to remind me that you want details as I am very busy today and won't be able to get back till later.

    Best wishes
     
  13. darkrobot

    darkrobot

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    This is great news. I recently added LDN to my long-term antibiotics (private prescription) and it seems to be having a good effect already. I even went out for a little jog (well, jog/ walk) last week! :eek: So far it hasn't backfired, fingers crossed... Any "proper" exercise would have been unthinkable a few months ago.
     
  14. oerganix

    oerganix Senior Member

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  15. jace

    jace Off the fence

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