The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Dr D G Smith

Discussion in 'General Treatment' started by dmbaken, Aug 26, 2011.

  1. dmbaken

    dmbaken

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    Hi, I'm wondering if anyone has had anything to do with Dr D G Smith (or his tx) from the UK. He proposes a pretty extreme pacing protocol. I'd be interested to know what peoples experiences have been.

    Thanks

    Don
     
  2. Naomi

    Naomi

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    Hi Don,
    I know it's been a year and a half since you posted this but I've only just seen it and thought it was worth replying in case you are still interested. I was referred to Dr D G Smith in April 2010 with moderate to severe ME and within a year and half I was recovered to the extent that I could take part in a dance class for an hour and a half without suffering afterwards. I'm now at university studying English and Drama, taking part in extra-curricular activities and feeling completely recovered! I wouldn't call his treatment a 'pretty extreme pacing protocol'. It's more than pacing and he tailored it to me so that I could find it manageable and the focus was always on the things I wanted to do and achieve. I tried pacing before that and it doesn't work. I was told by my OT that pacing would help me 'manage' the illness. Dr Smith on the other hand is actually able to get people completely well again and he's had lots of success. I was extremely sceptical about Dr Smith at first; I'm not one of those people who try every cure and recommend them to others all the time. I'm only replying because I recovered completely and because I got to know Dr Smith quite well and know that he is a well-meaning man and a brilliant doctor. It was a tough programme and I was frustrated that I couldn't feel the effects for ages but Dr Smith understood this and was incredibly encouraging, woud modify the programme all the time according to how hard I was finding it or the progress I was making and acted as my counsellor as well really which was vital! In other words, it didn't feel 'pretty extreme'. I was also on low doses of anti-depressants and sleep regulators which he only gradually increased and then decreased and I've been off them now since April 2012. To be honest I think it would be hard to follow his programme without seeing him but worth trying and definitely possible. Don't be rigid with it because he isn't. I presume you have seen his website, I think he has written /is in the process of writing a new website as his theories improve and need updating. I hope this is of interest to you. It's hard to be specific about the programme since it's so individual and changed all the time but I'm happy to answer any specific questions you might have if you want.
    Naomi
     
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  3. Purple

    Purple Bundle of purpliness

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    Thank you for replying Naomi. Could you share how long you have been ill before this programme and how your illness was progressing until then?
     
  4. Naomi

    Naomi

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    I had been ill for four years and my illness had very gradually got worse compounded by the resulting depression that almost inevitably occurs when you've been ill that long. I weas pretty much housebound, couldn't attend school at all and just watched television hardly having enough energy to get dressed every day.
     
  5. peggy-sue

    peggy-sue

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    Does he have a new website and method of treatment?
    I found his site several years ago. I very much liked his pacing "instructions" and have based my own way of coping on them.
    I liked and since have found to be true, his formula for calculating payback.

    But he had a dangerous and inaccurate theory about the cause of CFS/ME on which he based his drug treatment - a combination of tricyclics and SSRIs, and although these were in low doses, it is still very dangerous to take these drugs together.
     
  6. peggy-sue

    peggy-sue

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    Ok, I just googled him. He does have a new site, it's bigger and harder to get around, I can't find the simple pacing instructions or payback calculator, but he's still doing basically the same things, and using a dangerous combination of antidepressants in conjunction with GET and CBT stuff.


    http://www.me-cfs-treatment.com/more-information/
     
  7. Jenny

    Jenny Senior Member

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    I saw him in 1985, when my solicitor needed evidence for my divorce proceedings that I was unable to work because of ME. He wrote a helpful letter. He was sympathetic and supportive. Didn't offer any treatment (but that wasn't the purpose of my appointment).
     
  8. Jenny

    Jenny Senior Member

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    Not necessarily - it depends on the dosages. I take both, on the instructions of my immunologist.
     
  9. peggy-sue

    peggy-sue

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    Personally, I would not take those drugs together. I don't have an immunologist.
    The tiniest dose of amitriptyline put me on another planet, I can't tolerate it at all.

    Has Dr. Smith changed his theory about the "cause" of CFS/ME? I'm pretty sure it was on the lines of the "prolonged stress -> depression" camp.
    I took what I could from the pacing instructions I found at the time - probably around 2006.
    It was very basic.
    Work out what you can do on a good day, work out what you can do on a bad day. Add the two together, divide by two and try to achieve slightly less that that on a daily basis - do not exceed your envelope of safety, do not get into payback.


    But I dismissed everything else on his site because of:-
    the daft theory which was based in everything biopsychosocial with the usual "but I'm not saying it's psychological",
    and the contraindicated drug combinations.
    I do remember hearing something, sometime about SSRIs and tricyclics being ok as long as the doses are very low AND there is constant monitoring by blood analysis of what is going on. But I would also think any studies have been carried out on well folk.
    I'm horribly sensitive to SSRIs too.

    My emergency suicide pack consists of amitriptyline and sertraline (and some extra prozac I found in a cupboard) I have left from having been prescribed them (when I didn't want or need them in the first place.)
     
  10. peggy-sue

    peggy-sue

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    Here are a couple of quotes taken directly from the front page I linked to.

    "In 1992, it became clear that the fatigue syndrome was purely centrally based and that problem was that of disturbed brain function. With further work it became clear that probably every neurone and all brain function within the central nervous system is affected and neural networks suggest that a diminished brain function would be associated with diminished neurotransmitter regulation. Thus a treatment became apparent and that it would be a neurotransmitter regulator; in other words, the use of antidepressants became axiomatic."

    and

    "Since then, having had a poor treatment outcome previously the effect upon this illness has been dramatic. Of course, all of this, at the moment, is anecdotal and can only be proven by peer review published papers. My paper, written with others (Dr Maxine Patel, Professor Simon Wessely, and Prof Trudie Chalder), relating to the treatment of children using these medications in conjunction with a modified activity programme was published in the BMJ publication Archives of Diseases of Childhood in October 2003 and demonstrated that this illness is now effectively curable in children."

    I would take serious issue with the statement that anything "can be proven by a peer reviewed published paper".
    Good workcarried out in a proper study, might prove something. A "published paper" proves nothing.

    I can see no justification, scientific or theoretical, for swallowing these drugs.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i dont think i would dismiss some of his treatments(trycyclics) altogether, but again everyone is different. I do remember reading about someone recovering from cfs/me with doxepine. Im guessing that it probably helped here as it may have calmed her over stimulated brain/nervous system and allowed her to recovery. From memory she was on it for 18 months and i think cfs/me for a couple of years, so i think what also helped her is she got it early too. In saying all this, some have reacted very badly to low dose tricyclics, all u can do is try it and see.
     
  12. Naomi

    Naomi

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    I took those drugs together with no adverse effects and they really worked for me! I don't think I could have got better without them! However, there is no way Dr Smith would give you them if you reacted badly to them. He monitored me very closely and was open to me telling him when I thought I was ready to stop (which I did and I was).

    'Basic' is certainly not how I would describe his theory or programme after having seen him for an hour every month for 2 and half years. What he has on his website is really only the starting point. He is also in the process of writing a more up-to-date book though I don't know when it will be published. Although I can't speak with any authority, I think his theory does consider prolonged (physical, mental or emotional) stress and depression to be the dominant cause but I think it is more complicated than that. He accepted that for me, while a period of prolonged stress bruoght about M.E, the depression certainly only came afterwards. It is different for everyone and he undersatnds that.

    I had a big struggle to understand his theory of the nature of the illness and to accept that it affected my brain too because I was violently opposed to any doctor saying that M.E is psychological and still am because it is not. However, this is definitely NOT what Dr Smith thinks. It affects your brain in a very physical way. The depression is aside from that and clearly only occurs because anyone would be depressed if they felt that **** all the time and couldn't do anything. Dr Smith has now been studying M.E for over 30 years and what is more has the right attitude to it so I wouldn't say his theory was 'daft' especially when it has got so many people 100% well again, including sceptical me! It is extremely complicated and I don't think a website can do it full justice unfortunately.

    Also, I can't see another way for a doctor's work to be tested than for other doctors to carry out their own study of it which is what a peer-reviewed paper is of course. The more doctors that agree on something the more certain it is surely.
     
  13. peggy-sue

    peggy-sue

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    I'm well aware that a lot of folk get sleep help with low dose tricyclics - it just didn't work for me.
    The problem as I see it, is not just the tricyclics, but tricyclics in conjuction with SSRIs.
    This causes major heart problems - which can be fatal. (which is why I have a whole month's supply of each in my emergency kit.
    On Dr. Smith's old site, even he recommended regular blood tests to check for heart problems.
    I gave up on him as being anybody to trust, given the wrong theroretical basis he's operating from (ooh, but it's not a "mind" problem, it's a brain problem. :rolleyes: ) and this irresponsible prescribing of drugs which officially should not be taken together.

    I have pointed several folk to his old site for the advice on pacing though.
    It doesn't look as if he's doing it the same way now though - it looks far more intensive and far more geared up to increasing activity, rather than just pacing in order to survive without getting worse.

    I couldn't increase activity. I'm surviving, without getting worse too often.

    Naomi - we cross posted. There is a world of difference between a medic (MD) and a proper research scientist. (PhD)
    Medics are not trained in science or scientific methods or statistics. At Uni, they get spoon-fed facts, which they learn by rote.They are not taught how to think, how to research or how to put different ideas together.
    The psych lot keep getting published because the "peers" that review them are psychs too.
    None of them would recognise good scientific practice if it jumped out of the gutter and bit them on the ankle. It doesn't matter how many other medics agree with them - it does not make it right or prove anything.
     
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  14. Naomi

    Naomi

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    Personally I think there is a major difference between a 'mind' problem and a 'brain problem'. One I find offensive and the other when it is understood makes a lot of sense and is proven to be right by people like me making a complete recovery by using the resulting programme.

    It would be incredibly difficult without going to see Dr Smith himself for as long as I did to know when to start increasing your activity and how to do it. I'm not surprised to learn that you are unable to increase your activity from simply following his website instructions. I dont think I could have done it without him or the drugs though I would still recommend that people try it. I'm not attempting to explain to people how to do it here because my attempt would be as lengthy as a novel, it's very complicated and tailored to each patient and I am not educated to the same high degree as Dr Smith so I don't feel like I can help an awful lot other than to assure people that he is worthy of attention.
     
  15. peggy-sue

    peggy-sue

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    Ok, I can see that you see brain and "mind" as being different, I don't.
    The brain was my major subject of academic interest, I studied it for a total of 7 years via both the Open University and a brick uni.
    I'm not taken in by the dualist/non-dualist arguments of the psychiatric lot.
    Depression is a brain problem, not a psychiatric or "mind" one.

    Prolonged, uncontrollable stress sets in motion a string of chemical events which results in clinical depression.
    And Dr. Smith is describing clincial depression, no matter what he calls it, or how nice and sympathetic he seems.
     
  16. Naomi

    Naomi

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    Well he got me completely well again and he got me better from M.E not clinical depression.
     
  17. peggy-sue

    peggy-sue

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    I'm delighted to hear you are now completely well. :hug: I really am.:balloons:

    But nobody knows of anybody who has ever recovered from ME.
    The problem being, there is nobody in the uk who can diagnose ME.
     
  18. Jenny

    Jenny Senior Member

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    I know quite a few who have recovered to more or less 100%. I did for 12 years. It seems there is a lifetime risk of relapse though.

    Over the years, I've seen probably about 25 doctors. All of these diagnosed ME (not CF or CFS) and seemed familiar with the key symptoms. Docs in the UK are probably as good or bad at diagnosis as docs anywhere else.
     
  19. peggy-sue

    peggy-sue

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    Unless they're using the correct criteria - the Canadian ones or the newer, updated Clinical Concensus ones, they are not diagnosing ME.
    And these criteria are not officially recognised in the uk, (yet. Scotland is trying to get them put into use.)
     
  20. Esther12

    Esther12 Senior Member

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    I'm sure there's a problem in there.

    re Dr Smith: To me it seems like he's too confident about lumping CFS/ME/whatever patients together and treating them as if they have the same cause of their ill health... but this seems a common problem, and his ideas might still be helpful for some people. It seems that they were for Naomi!
     

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