Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Predators and scammers

Discussion in 'General ME/CFS Discussion' started by MAOAr297r, Oct 8, 2017.

  1. MAOAr297r

    MAOAr297r

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    Have you guys noticed how the alternative medicine/nutrition community thinks they have all the answers to ME/CFS? I literally just had someone tell me this can be cured by a vegan diet and then she said tried to talk like a fake scientist about mitochondria and she had no idea what she was saying. ahhh so insulting. You feel?
     
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  2. Wonko

    Wonko Senior Member

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    The other side.
    They may have all the answers. The problem is the questions are not the correct ones. With regards to M.E. specifically they don't seem to have a clue. IMO as such they should shut up or be prosecuted for practicing "medicine" without a clue.

    Some of these people harm people, deliberately, with no thought or care, for money, or self image, or something.

    These days I'm not very bright, this hasn't always been the case, I still have, if not the knowledge I used to have, or the intelligence, some understanding of how things work, and more importantly in this case, how things don't/can't work. I may occasionally be wrong, but my wrongness harms no one.

    These people don't understand, or appear not to understand, simple things, that any 12 year old should know about how the physical world works. When they promote things that can't possibly work, invest huge amounts of time and resources to plastering such rubbish all over the internet in an attempt to drown out the real facts, they potentially harm huge amounts of people, to make money. They are IMO criminals.

    Unfortunately some people do get better, at least for a while, by luck, coincidence, placebo, whatever. Some of these people go on to effectively market these bogus treatments actually believing they work. These are the difficult ones to deal with, I have no idea how to handle them.
     
  3. Invisible Woman

    Invisible Woman Senior Member

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    Get used to it. :rolleyes:

    Once people discover you have ME it's :"oh! My cousin's girlfriend's half brother had that they were completely cured by xyz!"

    xyz bring some rather dubious & probably expensive "treatment" possibly involving drawing circles on paper.
     
  4. Mary

    Mary Senior Member

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    No, I haven't. I think these kind of generalizations are dangerous and unfair.

    I've been seeing a chiropractor who does muscle testing for many years. He's never claimed to have any answers for ME/CFS but he has helped with several digestive problems and adrenal problems, and a few other things and I would be much worse off without him.

    How many M.D.s say that they have all the answers - all we need to do is buck up and exercise, or take an anti-depressant and exercise? They do much more harm IMHO. And people believe them because they are supposed to have all the answers.

    And proper nutrition can help. No, it can't cure ME/CFS, but if someone has gluten sensitivity they generally do better cutting out gluten. Many people make improvements cutting out dairy and wheat. I've gotten more energy with various nutritional supplements, particularly B1, B6, folate and B12. No, none of these are the answer to ME/CFS but they have helped with symptoms.
     
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  5. markielock

    markielock staying independent, one day at a time

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    A recent example: the other week my work coach for the benefits I'm claiming informed me that I could manage my condition by painting, or another hobby that "fills me with the energy" hahaha. I couldn't get a word in to say the contrary.
     
  6. Skycloud

    Skycloud Senior Member

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    I've liked your post because I strongly agree with you in so far as it's true. It is a sweeping statement though, an exaggeration that is not completely true. I'd suggest what your saying, and I say it myself sometimes, comes from feelings, not logic/fact.

    I feel that there's an army of self-satisfied ignorant opportunist money making lying snake oil merchants who think they have all the answers out there.

    However:
    1 - Not all those who think they have all the answers are alternative/nutrition practitioners; some of them are conventional doctors/consultants/researchers. The biopsychsocial (bps) group are amongst them. In my opinion they do more harm than anyone.

    2 - Not all alternative practitioners and nutritionists claim to have all the answers to ME/CFS, and I know that from personal experience.

    3 - Alternative practice is a large umbrella term and includes for one example herbalism. Herbalism in the right hands can be effective and useful, and 'Science!' can show that.

    4 - I can't think of a 4 right now because it's only just 9 am and I haven't had breakfast.

    5 -
    yes - ignorant, but probably well meaning, people like this are annoying, particularly if they catch you at the wrong time.

    6 - I've been helped by a nutritionist, who based her work on research and testing.

    Breakfast time.
     
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  7. markielock

    markielock staying independent, one day at a time

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    To add to what @Skycloud said: even when ego gets in the way, I think 99% of people's instinctive reaction is to help others and to genuinely fit in and be wanted. I'm prone to complaining about people being ignorant too, but their intention isn't to unhelpful or disingenuous.

    CFS/M.E. is a complex clinical landscape on the surface of a complex biological entity whom deals with complex emotions and other complex people - that's why everyone tends to know at least some of the 'answers', ha ha. It may well be the answers for someone's unique flavour of the CFS/ME-like symptoms they're experiencing. Alas, we know this isn't true for everyone. I don't think the whole medical community thinks they know the answers and the more sound research they develop on the mechanics of metabolism, fatigue and energy production/regulation: the more answers we should have for more people :). However, I do absolutely understand your sentiment.
     
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  8. Learner1

    Learner1 Professional Patient

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    I've wasted far more time and energy with the conventional medical system in a major US city with a major medical research center than I have with alternative practitioners, who have patiently tested me, diagnosed me, and treated me, so that I function much better than I would have otherwise.

    As patients, it is up to us to do our due diligence in looking into any theory or treatment to decide if it has validity for our individual situation. Alternative practitioners have offered me many ideas that I've found to be backed in sound science and which have helped, while conventional doctors gave me handouts on CBT/GET, yelled at me, fired me, and quoted from a 20 year old medical textbook.

    Yes, there are people who will take advantage of us, but its not right to slam the door on new ideas, particularly with this underresearched disease.
     
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  9. user9876

    user9876 Senior Member

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    moderated with many others
    One of the problems is that when someone improves or in rare cases recovers (or improves a lot) they attribute the latest thing they tried. This is why well designed clinical trials are necessary.

    I expect there is another issue which is when someone feels a bit better they feel well enough to try new stuff. If they continue to improve they attribute the new stuff to the improvement when they were already on that path,
     
  10. MAOAr297r

    MAOAr297r

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    Hey guys I have news of hope! I saw my doctor today and he said nobody with an MD can help me because ME/CFS is so complex...He said someone with a PhD can though. He referred me to a molecular medicine clinic! They have teams of geneticist, neuroscientist biochemist and MD/PhDs etc...I had no idea that those were even a thing. They are everywhere wow! I have so much hope right now, even if I only improv a tiny bit :)
     
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  11. alex3619

    alex3619 Senior Member

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    Alternative medicine ranges from good to deeply disturbing. Much of modern allopathic medicine started as alternative medicine, including aspirin.

    I rely on my lemon rule, most treatments are lemons but you wont know if you don't try them. However simple reason and an examination of scientific studies will show some treatments do not work or are dangerous. Those do not have to be tried.

    Given we are largely unaware of what causes ME or even CFS, or our own personal health issues, its often the case that many treatments doctors will not consider can be useful. They just cannot be guaranteed.
     
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  12. alex3619

    alex3619 Senior Member

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    This is where the science is moving. I hope it helps.
     
  13. perrier

    perrier Senior Member

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    And would you be able to name this place please. We need a team like this which addresses ME.

    Please give the name of this place.
     
  14. Nielk

    Nielk

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    To be honest, in my personal journey with ME, I have been more harmed than helped with traditional drug treatments. I'm not sure if it's because I'm very sensitive to drugs, but I have had some scary experiences.
     
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  15. alex3619

    alex3619 Senior Member

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    Every drug I have tried for anything ME related has either not worked or hurt me, with the exception of LDN .... but that is not generally approved by docs. I have never been harmed by vitamins minerals or acupuncture. Tai Chi did make me worse though, and I cannot tolerate meditation.
     
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  16. IreneF

    IreneF Senior Member

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    Can you point me to scientific papers showing that herbalism is effective and useful?
     
  17. Skycloud

    Skycloud Senior Member

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    Wow - that's really encouraging! (Wish we had stuff like that in the UK) Pleased for you.
     
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  18. Skycloud

    Skycloud Senior Member

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    Sorry but no I can't right now - it's not a priority for me in the current state I'm in - sorry not to be helpful. What did you want to know?

    I said that science can show that it's effective and useful because there's identifiable and measurable chemicals in herbs that interact with our physiology (biology??) in a measurable way. This is in contrast to some other 'alternative medicine and healing approaches. If I gave the impression that there was research into treating ME symptoms specifically then I was unintentionally misleading, for which I apologise.

    Of course herbs can also be harmful, and even kill you and there are unscrupulous herbalists too, I'm sure. I use a book recommended to me by my sister who treats herself herbal for complex health problems and is licensed in the UK to treat animals
     
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  19. IreneF

    IreneF Senior Member

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    Ok, you’ve told me what I wanted to know. There's a reason we use digitalis and not foxglove.
     
  20. Skycloud

    Skycloud Senior Member

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    There's a reason I use valerian and not amitryptaline.
     
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