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Hello, anyone heard of a Dr David G Smith (essex)

Discussion in 'General ME/CFS Discussion' started by lukej, Dec 29, 2013.

  1. lukej

    lukej

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    Hello.

    I am asking about this dr for my daughter. She is in her late teens and has had what is believed to be CFS for about three years now.

    Her GP has mentioned last week that he may be able to refer her to this specialist and so I have googled about him. The responses are mixed and so I thought I would ask for myself.

    What worries me is what has been said online about the mix of drugs (which are lethal together). I have asked my pharmacist who said she would never give those together as it is too dangerous.

    I just wondered about this doctor, I would rather her not go if it is to her detriment and ask for a different Dr before she gets referred here.

    Here are the links to his website and a few bits of it.

    http://www.me-cfs-treatment.com/

    http://www.me-cfs-treatment.com/more-information/get-well-golden-rules/

    http://www.me-cfs-treatment.com/more-information/background-to-guidelines/

    The pdf articles make interesting reading too,

    http://www.me-cfs-treatment.com/wp-content/uploads/2013/03/Getting-Better-from-CFS-ME.pdf

    http://www.me-cfs-treatment.com/wp-content/uploads/2013/03/Get-Well-Guidelines-Revised-2012.pdf


    Thank you for any help. I want my daughter better, but not at any cost if there are better ways.
  2. Plum

    Plum Senior Member

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    Hi

    Apologies as I don't have the energy to read through everything you've posted.

    BUT, I have reservations to what I've read already.

    I do not feel that there are many good ME Dr's and have never heard of Dr. Smith. I also don't like his recommendations as I know they wouldn't work for me.

    I would research things myself - it is a long and time consuming way of doing things but everyone with ME is very unique and supplements/diet etc need to be tweaked for everyone.

    Please look at Dr Myhill's website as a good starting point. Her book is available somewhere on the site for free.

    A lot of us start with diet (Paleo works well for some) and go from there. Supplements and medications all need to be taken cautiously. I personally believe in focusing on the gut as without good gut health you can't absorb the nutrients you need.

    Dr. Myhill does recommend some other Dr's who work in the field of Environmental Medicine and they would be open minded to alternative treatments as well as traditional medical Dr ones. BUT you will have to pay privately to see them.

    You could also look into the Wahl's protocol - Dr Wahl's has been healing herself from MS.

    I wouldn't touch an NHS 'Specialist' EVER. I seriously think that they do not know what is best for us.
  3. Jenny

    Jenny Senior Member

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    He's been around a long time. I diagnosed myself with ME after reading a magazine article he wrote in 1985. I went to see him a few years later but he didn't have anything to offer then. He must be way beyond retirement age now, and reading his stuff makes me think he doesn't keep up with the latest research very well.
    maryb and Plum like this.
  4. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    @lukej It would help a lot if you could post some of his treatments instead of all the links. I can't deal with them as Plum mentioned above. You might get more responses.
    Plum likes this.
  5. lukej

    lukej

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    Hi, I'm sorry, it's just like my daughter, she cannot manage to read things, even that she would love to.My apologies to you all.

    The treatment is a combo of prozac with amitriptyline, ami at night and then prozac in the mornings. That is the medication.

    He states things like, if you are not getting better/and or getting worse, then you are following his rules incorrectly and doing it wrong.

    Go to bed and wake up at the exact same time every day and night, wake by alarm clock at the same time.
    Potter in the day, do housework, clean windows, paint, vaccum, clean up.
    No tv, no computer, no reading, no cross stitch.

    He says it never gets worse by itself. Cancel Christmas, don't go to the weddings/funerals.
    Plum likes this.
  6. Plum

    Plum Senior Member

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    @lukej a lot of us struggle to read and can't! If you do posts like your last one it's easier for us. Short and to the point with lots of spaces between every few sentences.

    Prozac and amitriptyline - both antidepressants and the ami an anit-anxiety. Is she depressed?

    My experience with both is don't both unless you actually have clinical depression. Dr's prescribe these like sweeties.

    If she has sleep problems then you should look into 2 things:

    Cortisol levels - best done with 4 saliva tests from somewhere like Genova UK
    This will show any issues with adrenals. Cortisol imbalance causes sleep problems.

    2nd, blood sugar imbalance. I have battled with both of these and only recently gotten my sleep under better control with serious blood sugar control.

    BUT there are lots of things to consider and we're all a bit different!

    The chores the Dr suggests is hilarious. How bad is the ME? How much functioning does your daughter have?

    I have found the following works for me:

    Go to bed between 10 and 11pm. Watch Simpsons or nature programmes (relaxing) until fall asleep. Sleep at least 8 hours - if this means getting up at 12 noon so be it. I will have an ok day IF I get 9 hours sleep minimum but can exist on 8.

    So, sleep out the way, need to decide on energy levels for the day. My energy goes on making food 1st and foremost. I eat Paleo, prepare food in batches so don't cook every day. If bad day then all I will do is make meals, shower and clean teeth. Rest of day in bed lying down. Once a week food delivery arrives and I unpack that.

    A good day will allow me to put dishes in washer, do 1 load laundry and wipe down kitchen tops.

    Resting lying down helps A LOT. I find it's important that I do my chores for myself as it makes me get up etc. BUT pushing yourself isn't allowed.

    Look into pacing please. Dr Myhill has it on her website.

    As far as napping goes - I used to nap every afternoon from 2 to 4pm. Some nap all day.

    Please tell us more about your daughter:

    How ill is she, diet, tests done etc. The more detail you give in a clear manner, the more we can make suggestions.
  7. Sidereal

    Sidereal Senior Member

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    Sorry to hear your daughter is ill.

    I read through the links provided. Reading his writings was a weird throwback to 1989. This man's understanding of ME is on the level of Wessely's earliest papers.

    His treatment seems to consist of graded increase in activity (though he calls it something else) and a combination of a tricyclic antidepressant and an SSRI, starting at a very low dose and gradually titrating upwards. This treatment appears to be predicated on his belief that CFS is essentially sickness behaviour / atypical depression.

    One should keep in mind that some people with ME have bad reactions to antidepressants, though they are helpful for some. Many ME patients have dysautonomia and taking a tricyclic antidepressant could worsen orthostatic intolerance and POTS, though taking an SSRI can be helpful for OI/POTS for some.

    Aside from the potential unpleasantness of taking such a drug combination, taking these drugs together raises the possibility of a rare (though potentially life-threatening) complication called serotonin syndrome which I am guessing your pharmacist was talking about. That is not to say that these drugs cannot be used together safely under any circumstances. Some psychiatrists do indeed use a TCA + SSRI combination for some people with treatment-resistant depression but you'd want to know what you're doing and you'd want to have a good reason for taking the risk. Although the starting doses this "NHS specialist" is suggesting would not be a problem for "normal people", people with ME often have extreme sensitivities and sometimes paradoxical reactions to not just prescription medication but also vitamins and all sorts of other substances.

    Yet another reminder of how terrible the situation is in the United Kingdom for ME patients.
    Wildcat, Tito and Ambrosia_angel like this.
  8. xrunner

    xrunner Senior Member

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    Your pharmacist is right. Years ago, when I tried antidepressants I was told you could not taker those together. When I transitioned to amitriptyline had to wait a few days to clear my system. I would look for a doctor with a proven record of helping patients with ME, there are very few but there are.
  9. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Oh god!!!! I'm so happy I found this. Do NOT let your daughter go on amitrypiline. I was put on for pain. It seems to be common treatment for people with cfs in the uk. It is an anti depressant and people shouldn't be put on drugs that are created for other purposes. Especially ones that can affect your way of thinking. No matter how small they claim the doses are.

    The treatment in the uk is absolutely atrocious. There are other drugs available for sleep but please also looking at natural alternatives. There are so many. Also look at this relaxdaily. The man is amazing. I listen to it every night and helped me with irrational thoughts in the night. I don't have sleep problems though.

    Please contact me for more info as I live in Essex too and I'm also a teen so I know a fair bit about the treatments used especially with supposed specialist hospitals like queens. Just be very careful please when prescribed drugs.
  10. Ambrosia_angel

    Ambrosia_angel Senior Member

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  11. Desdinova

    Desdinova Senior Member

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    I tried to read through the material then settled for skimming and finally threw in the towel. My neuropathy is killing my head today more than normal. He says that it's not depression, then highlights anxiety and stress. Doesn't want us to read or use the computer almost at all? Says it's neurological not psychiatric. Says that the fatigue response in ME/CFS is the same as in MS. His protocol all seems basic to me way to basic and some of it is contradictory. Saying it develops the same in every patient? really? Really?? REALLY???
  12. ukxmrv

    ukxmrv Senior Member

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    I remember Dr Smith when he was a medical advisor to the MEA a long time ago. Now he is deeply unpopular and has a bad reputation with patients.

    He relies on anti-depressants for treatment now and the ones he offers are the ones that caused terrible side effects for me and no improvement on ME symptoms.

    Personally, I would avoid this doctor. He could do a great deal of harm to ME patients.
    Wildcat, Sidereal and Ambrosia_angel like this.
  13. lukej

    lukej

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    Thank you all for your replies and help.

    From the general consensus here it seems he and his methods should be avoided for the general sufferer of CFS.

    I will make sure I go to the GP the next time she goes and discuss my concerns about the treatments with them.

    I will also point out this forum to my daughter, if she hasn't stumbled upon it herself before now. I cannot share how she personally feels here as I have no idea the extent to which this affects her, I only know she suffers everyday and she has changed so much from how she once was.

    Thank you all.
  14. lukej

    lukej

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    Can I ask why he has a bad rep with patients?
  15. ukxmrv

    ukxmrv Senior Member

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    His links with the old Liverpool clinic that treated patients as if they had "lifestyle" problems causing their disease, their use of GET etc. His treatment of patients using antidepressants as a supposed cure for CFS.
    Wildcat likes this.
  16. maryb

    maryb iherb code TAK122

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    If I remember the Liverpool clinic is still going strong and pushing the GET and CBT on to patients. All the staff are trained in these basically psychiatric interventions, the literature is shocking..........
    How long do we have to wait for these people to be out of jobs? can't come soon enough for me. God help the next disease the psychs clutch on to.
    Wildcat likes this.

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