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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"Integrative medicine: one of the most colossal deceptions in healthcare today" (by Edzard Ernst)

Discussion in 'Other Health News and Research' started by Dolphin, May 26, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    I don't know about other countries, but in Ireland a lot of people with ME/CFS spend a lot of money on all sorts of very dubious therapies and healers. Sometimes they can feel pressurised by partners or family members.
     
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  3. PennyIA

    PennyIA Senior Member

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    I don't know... I went to an Integrative MD... and yes, he did tend to recommend things that *might* help. But he was quite clear that it was up to me if I wanted to spend the money to pursue them... didn't pressure me into it. He got me onto thyroid hormone which my regular doctor had refused to prescribe (but who agreed that it was probably good for me to take it once someone else prescribed it and has been refilling it without question)...

    AND he helped me more than the regular MD's have. I was struggling with methylation treatment as it seemed like it wasn't helping at all - and he helped me ramp it up... sadly, I still have something not quite right with it and I've exhausted his skill set on it... but he did help me.

    I think when we get down to it... without a biomarker and without proven, effective treatment (let alone a cure - if only).... the only options we have are to find things that help us manage our symptoms. And regular MD's are very much in a box of only a short list of tricks they can offer us (and half of them won't do it). Integrative MD's have a larger bag of tricks and when you are desperate for SOMETHING - well, maybe one of their tricks might help.

    Sadly, since we're desperate... that means we're also easy targets for snake oil. So, as sick as we are, we need to take all claims and do research or get people to help us do the research to see what might be worth trying.
     
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  4. Dolphin

    Dolphin Senior Member

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    I wouldn't consider thyroid hormones as alternative therapies. They are biologically active. That's not the sort of therapy I had in mind
     
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  5. PennyIA

    PennyIA Senior Member

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    Right, but the point is that he did cover both regular treatments and alternative therapies.
     
  6. Firefly_

    Firefly_ Senior Member

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    It's been my experience that those that practice integrative medicine and functional medicine generally know more about the finer points of the inner workings of your body and try to get to the root cause of your problem rather than just writing perscriptions to address your symptoms then more perscriptions to address the side effects of the first medicine and sending you on your way after a 5 minute visit. I am fortunate that all of my Drs really give a shit what happens to me and try hard but I have experienced the other side of the coin.
     
  7. *GG*

    *GG* Senior Member

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    Well, if they are so concerned? Why not do something to help these patients out! It's like people want to be our "Guardians" but years go by, you tried this and that drug with no alleviating your symptoms!, you are not getting better, only worse perhaps, and still suffering and in pain. Where is the hope and dignity in that?

    I am very much like Penny, my Dr is Integrative and helped me survive in the work sphere for longer than I would have lasted with the typical Drs doing very little for my symptoms!

    Seems to me some people just want to protect their turf and to try to show their superiority, even though their system has failed us!

    GG
     
  8. Dolphin

    Dolphin Senior Member

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    Not exactly sure what you are saying, but to clarify my position I consider therapies such as homeopathy quackery and think vulnerable people can end up spending money, and sometimes energy, they can often ill afford on quack treatments.
     
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  9. barbc56

    barbc56 Senior Member

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    I don't quite understand this reasoning. Medicine is not perfect and the reality is that there are health conditions which at this point in time there simply aren't any treatments. Hopefully, there will be in the future.

    This is like blaming doctors from the 1930s for not being able to cure polio. The state of medical knowledge was not there at that point in time. It took almost two decades to get there.

    I'd rather have a medical practioner who is realistic about what can be done that go to someone who professes to know all the answers and gives you false hope.. That's where there's lack of dignity.

    All of these unproven remedies simply detract and hinder finding the real answers to this damn disorder..
     
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  10. barbc56

    barbc56 Senior Member

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    I found this to be helpful.

    images-1024x767.jpg
     

    Attached Files:

    Last edited: May 26, 2016
  11. Dolphin

    Dolphin Senior Member

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    To clarify my position once again, I would make a distinction between unproven therapies which might work but which there hasn't been trials for and then therapies which don't seem plausible based on an understanding of science e.g. homeopathy.
     
    Last edited: May 26, 2016
  12. JaimeS

    JaimeS Senior Member

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    I don't use homeopathic treatments, but I did go to a school for integrative health, and I know that homeopathic medicine as a whole does not say "the more dilute a therapy is, the stronger it becomes." That's not to say someone doesn't think that's what homeopathy is all about and says so on their blog.

    Frankly, anything that works for people I'm all for. So long as your integrative-whatever doesn't try to sell you a 'cure', I'd be happy to try something for a week or so, especially if it's cheap, has few reported adverse effects online, is widely available, and within the patient's sphere of control rather than doled out when the physician decides it's appropriate.

    People fund clinical trials to sell their drugs and make money; no one is going to spend a million dollars to research the effectiveness of something that can be grown in somebody's backyard. Regarding the quality of these studies, I'm sure they suck. They were probably funded at a very low level by someone selling a supplement and likely amount to an advertisement. The crappy quality of the study says nothing one way or the other about the treatment; it just means that the study itself isn't to be trusted.

    On a final note, as far as herbs go, I've always wondered if people think that a doctor incants a special spell over the pill before he hands it over. A chemical is a chemical, and many plants contain physiologically-active amounts of a particular chemical. What's so special about separating it, mixing it with starch, and placing it in a gelatin capsule versus consuming a whole-plant-whatever?

    I don't want to battle it out over this, and I'm not saying that any of this is your POV, Dolphin... I wouldn't presume to know what you think of it! I am more responding to the nature of the article itself. It bothers me when articles about alternative medicine are all painted with the same brush. It is literally saying, "anything not accepted by the mainstream of medicine is de facto incorrect." o_O

    Finally, we know research that proves nothing is very rarely published. I wonder if this author would do other searches for studies funded at a similar level and what he might find.

    -J
     
  13. Dolphin

    Dolphin Senior Member

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  14. JaimeS

    JaimeS Senior Member

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    Homeopathy not really my thing one way or the other. But alternative medicine and homeopathy are not the same thing.
     
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  15. Dolphin

    Dolphin Senior Member

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    I don't know how much is spent in other countries but I know in Ireland lots of people have spent thousands or in some cases over 10,000 Euros over the years on therapies which I think are simply placebos.

    If a small amount eg. 1 or 2% had been spent on research, or if some effort had been put into fundraising, we would likely have moved the science forward. Perhaps we would have treatments or at least targets that drug companies could work on.

    Governments only ever fund a fraction of the grant applicants. We need a lot of private money to fund other interesting ideas and also to provide seed money for smaller research studies which can collect data and allow them apply for bigger grants.

    The relative lack of funding that has been raised has left us open to psychobabble theories.
     
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  16. JaimeS

    JaimeS Senior Member

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    And I've spent money on vitamin B, Vitex agnus-castus, Cimicifuga racemosa, Vit D, etc. They've been helpful for me.

    We can't say that no therapy that is not considered mainstream is effective. That's bias.

    There are charlatans in alternative medicine, absolutely -- I doubt anyone would debate that.

    -J
     
  17. Mij

    Mij Senior Member

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    I saw a functional integrative doctor for 12 years, sure he was into some alternative stuff but he kept an open mind and wanted to help his patients.

    He was my GP for years and then branched into integrative medicine, he didn't push anything on me, validated my symptoms and would order any tests I requested. We booked hour appointments and he rx'd magnesium and taurine injections for years- best treatment I ever did. He retired 4yrs ago.

    Now I'm stuck with my GP who wouldn't even rx B12 shots when I was very depleted. I'm in and out of there in 9 minutes.
     
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  18. *GG*

    *GG* Senior Member

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    I don't think "wasting" a thousand dollars is much money in the Western world. I hope you are not starving yourself and perhaps are just selling yourself on the Hope that it will help a little, alleviate some symptoms and perhaps give you a a little more quality of life!

    I think people should be able to spend money however they see fit ;)

    I don't want Gov't involved in such a trivial matter. But that could just be a pet peeve of mine :)

    GG
     
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  19. Dolphin

    Dolphin Senior Member

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    Depends your situation. You are able to work but many people don't get back to work in which case thousands can be quite a lot and certainly over 10,000 is.

    If it was clearer to people that they weren't just one alternative therapy away from normal functioning, they might as I say donate more and/or fund-raise more for research (or the family might donate more and/or fund-raise more).

    People can blame governments if they like but in my view a lot of the lack of progress over the years in medical research is because the ME/CFS community hasn't raised enough for research. It has improved in recent years with online appeals but in most countries there is still not much on-the-ground fundraising for research (except in the UK).
     
    Last edited: May 26, 2016
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  20. aaron_c

    aaron_c Senior Member

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    Here is Edzard Ernst's findings on the subjects of papers from a conference on integrative medicine:
    It seems like he has a broader definition of "alternative medicine" than you do @Dolphin. So I am not responding to your point of view so much as to Dr Ernst's.

    From Edzard Ernst, as quoted in the first post:
    While this is entirely true, I disagree that the advocates of "alternative" medicine are somehow being sneaky or deceptive.

    First, Dr. Ernst suggests that the phrase "best of both worlds" is misleading, since alternative practitioners just want to replace conventional treatments with their own stuff. This ignores the many areas of traditional medicine that are not challenged at all by alternative medicine. Most tests are use by alternative and conventional medical doctors alike--there just isn't a replacement for a CBC or serum liver enzymes tests. And even the most alternative-minded person doesn't want a surgeon to give them a new kidney using homeopathic disinfectant (I don't think there is such a thing). So while two reasonable people can differ on what medical practices do in fact comprise the "best of both worlds," I don't think the phrase is used deceptively, because they want to replace part of the mainstream model, but not all of it.

    Second, Dr. Ernst argues that the phrase "best of both worlds" is misleading because the "alternative medicine" banner is essentially a one-way exchange where alternative medicine becomes more mainstream, but mainstream medicine does not spread to the alternative community. I think this misses the point, though, which is money: mainstream medicine is--for the most part--covered by insurance or national health care. Alternative therapies--at least in the USA--are not. Groups on the outside want to become accepted by the establishment because they want access to the establishment's funds, not because they want an equal exchange with the institution that has usually ignored and mistreated them. When we petition the CDC, most of us have a pretty definite idea of how much funding the psychosocial model should get. Minority populations usually have a much better understanding of the majority population than visa versa, and this plays out in medicine too: Most alternative practitioners have to have some understanding of mainstream medicine in order to practice, but mainstream medical doctors don't have to know anything about alternative medicine.

    So I think the idea of equal exchange is a red herring--it's a false standard.

    In the end, it seems like the alt med people want into conventional medicine's big tent, and the author doesn't want to let them in--which I think is a valid viewpoint. I just wish he'd leave out the defamatory insinuations and say something like "alternative medical claims should be held to the same standard that drugmakers must meet before releasing their drugs." I'm not sure that I agree with that, but I think it could be a good discussion.

    OK, this next part is in response to your perspective Dolphin :).
    Wouldn't that sentence make just as much sense without the word "alternative?" You made it clear that by "alternative" you don't mean herbs, vitamins or nutrients, but I think we can get caught up in the possibility of improvement through those alone, not to mention more conventional-but-still-poorly-understood treatments like valcyte.
     
    Last edited: May 27, 2016
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