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Dr Downing (clinics in York and London)

Discussion in 'ME/CFS Doctors' started by Amy, Aug 4, 2012.

  1. Amy

    Amy

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    Has anybody here been a patient of Dr Damien Downing? He has clinics in York and London, and is president of the British Society for Ecological Medicine. I think he works along similar lines as Dr Myhill.

    If anyone has any experiences with his treatment, whether good or bad, I'd be grateful to hear about it.

    I was a patient of his some years ago, but my health got worse and worse until I was bedbound and unable to travel to see him. I would be interested to know whether anyone else has made improvements with him and what his most recent treatment ideas are. I'm wondering whether to consult him again as I have so few, if any, options,
     
  2. Esther12

    Esther12 Senior Member

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    It's really bad that our options are so poor that you're thinking of going back for more!

    I've not heard of him, but it doesn't sound like he was worth the trouble in the past and I think we'd be aware of any breakthroughs since then. Sorry not to be more use.
     
  3. Amy

    Amy

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    Thanks for replying.

    Yes, my question does sound pretty crazy in context doesn't it?!

    I just gave up on what was on offer outside the NHS (and inside it, largely, except symptom control) after everything failed for me or made me worse. But I read about all the drugs and therapies which patients in the US have access to and it makes me feel desperate that I should be trying *something*. But those things aren't available here. And I need help to get the six feet or so to my bathroom, and the only times I have travelled in recent years are ambulance trips to hospital, so it's all pretty impossible really...
     
  4. Esther12

    Esther12 Senior Member

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    Sorry that things are so difficult for you, but I think that at the moment, it's best to focus any spare resources you have on dong pleasurable and personally satisfying things for yourself, rather than trying to find doctors who can help. (Other than perhaps finding an alternative diagnosis). Sorry not to be more help.
     
  5. xrunner

    xrunner Senior Member

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    Hi Amy,

    I saw him a few years ago for about a year. I did his detox and mitochondrial protocols.
    The detox helped with brain fog but I got worse in terms of fatigue/stamina.
    At the time I had already gotten worse after trying the Myhill protocol. All in all, I ended up being housebound and sicker.
    After seeing him I went to the Breakspear and they certainly helped me get better, although in the process they also tried a couple of things that backfired.

    I agree with you that in the UK treatment options are currently limited but getting better is certainly possible. I disagree with Esther on this.
    For those of us who ended up being quite ill, concentrating on the "pleasurable" and "satisfying" things that life has to offer is not an option. It wasn't for me as I remember life being a 24/7 hell ordeal. It's also a way of life that personally I'd struggle with.

    I have made a lot of progress in the past year but mainly as a result of trying things for myself and quite aggressively (which I am not suggesting). I don't want to talk too much about what I can do but I can now exert myself quite heavily day in day out, although I am not completely recovered yet

    In my opinion, it's helpful to bear in mind that our illness is not homogeneous (political/financial motives, rubbish diagnostic procedures and all the rest) and for that reason there are treatments out there that can help us quite a bit, as long as we take into account what individually make us ill in the first place. And there are small studies showing this is possible.

    Not sure if this is helpful but I wish you to find a way to better health.
     
  6. Sasha

    Sasha Fine, thank you

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    Hi Amy - I saw Dr Downing twenty years ago for a couple of years and his treatment had zero effect either way on me.

    Have you considered seeing Dr Enlander? He is based in NY but visits London, when he sees patients. Once he's seen you, you don't need to see him again for a year but can keep up by phone. Here's his site:

    http://www.enlander.com/

    Don't be scared when his site starts talking to you! Frightened the wits out of me.

    The site is awkward - when you click on anything, nothing seems to happen - you need to scroll down to see the new page.
     
  7. Amy

    Amy

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    Thanks Esther, xrunner and Sasha.

    xrunner, can I ask what has helped you so dramatically?

    Sasha, I plan to look at Dr Enlander's site. An American friend of mine who lives in Berlin is a patient of his - he travels to Germany too. But I am completely bed bound and live up north so London would be impossible for me to get to unfortunately. Are you getting treatment from him?
     
  8. xrunner

    xrunner Senior Member

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    Amy,
    There hasn't been a single treatment, as after a while anything I have tried required other adjustments. There have been treatments that were key for me (abx, ivermectin, maf314, kib500, mercury detox) as improvements were clear whilst others have helped as support (naet, methylation, systemic enzymes, a few herbals).
     
  9. Sporty

    Sporty Senior Member

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    Did you end up seeing him in the end?
     
  10. Luelma

    Luelma

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    Hi Amy, I wonder if you would email me direct
    Hi Amy,

    I appreciate this post was several years ago but I am hoping to connect with you. Before my health collapsed (age 28) and every vestige of operational life was lost in 2008, I was a freelance journalist writing for the UK nationals (Guardian, Times, Independent, Daily Mail and Daily Telegraph) London Evening Standard and women's magazines. My speciality was integrated health, particularly nutrition.

    I utilised all my health contacts and professionally honed research skills in my quest to regain my health and life. I have worked with over 85 practitioners operating in every conceivable orthodox, non-orthodox and research-field and, despite being largely housebound, have received input from practitioners on every continent bar Africa and the Poles. Almost eight years on, however, I am worse that ever, am almost entirely bed-bound with barely the energy to sit up in bed much of the day. My chronic sore throat which signalled the onset of my health collapse back in 2008, is now so severe I can no longer speak at all. The heart of my problems rest in a highly problematic, dysbiotic dysfunctional gastric system (despite having a super-healthy, clean nutrient-dense diet pre-illness) but most days I am now unable to eat 17+ hours.

    My sole goal is total recovery and I am committed to being able to return to writing again in order to broaden awareness, compassion, and crucially report on anything and everything with a robust profile in terms of providing help for this cruel, multi-system illness.

    I was hoping to gain help from a US doctor but she refuses to see patients not seen in person and suggested Dr Damien Downing, whose appraoch sounds disappointingly similar to reams of other approaches I have already undertaken with similar specialists. ( I too have worked with Dr Myhill, as well as a colleague of Professor de Meirleir at RED Labs in Belgium to highlight two out of scores I've liaised with.) The feed-back from this thread was not heartening and it sounds as though, being bed-bound, I may not be able to receive advice from Dr Downing anyway, but given the similar levels of immobility that I am sorry to hear you have suffered with I wondered both how you are doing, if you did return to him and whether it would be possible to make further contact. If so please email direct to lucy.salisbury@hotmail.com

    [Should anyone else see this post who is in a similar situation I would be interested to hear from you. I am not paritcuarly fluent with online forums and would appreciate if further contact could be via the email provided above] Thanks!
     

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