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.
Discuss the article on the Forums.

Miracle cures. Diets. Supplements. Cleanse. Detox. Evidence?

Discussion in 'General ME/CFS Discussion' started by Kati, Sep 13, 2015.

  1. Kati

    Kati Patient in training

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    I came across this blogpost from a woman with breast cancer. She discusses the cancer that most people blame the patient, lung cancer and how very often unfair this was.

    But then she talked about her own cancer, and about people who seemed to know everything about how to cure it. I thought this has a relevance for our disease.


    http://kirstyriceonline.com/2015/09/you-deserved-to-get-cancer.html

    Here is an extract:
    I have been on this forum for 6 years now. Most if not all are still sick. It amazes me sometimes to read the advice that is given here on this forum. How quitting sugar will make a difference. How dairy is so evil even if you are not lactose intolerant. How gluten is bad for you. How you should eat bone broth nothing else. How methylation is the answer. How liver detox will make you better. (Ask a gastro-enterologist about liver detox).How chelation and removing amalgams will cure them. How XYZ supplement can help ABC. Then there is fasting. Sigh.

    Some will actually advocate for patients to leave their home and belongings behind, and to go live in the desert or XYZ place which is mold free. (Can you imagine the hardship of a sick patient with very little money on hand giving away their belonging and suddenly become homeless?)- it's not that simple. Those who give such advice may not realize that having a roof over your head means some level of security. Living in a tent can prove very difficult for some and what if bad luck happens, like the car break down, or the patient cannot even get back up from sleeping on the ground? What if the patient develop pneumonia?

    Miracle cures do not exist. By all mean, I encourage people to have a diverse diet, and eat food that does not cause an allergic reaction in their body. But what we need is biomedical research. We need evidence that a certain treatment works or not. Please help! Governments need to fund biomedical research. Our experts deserve support and funding.
     
    Last edited: Sep 14, 2015
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  2. Violeta

    Violeta Senior Member

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    Governments? Help governments?
     
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  3. Kati

    Kati Patient in training

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    Hmmm. This is when punctuation changes everything.

    I changed the last sentence to make it clearer. Thank you for pointing it out.
     
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  4. panckage

    panckage Senior Member

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    I've found 'miracle cures' for my cfs. The problem is they only seem to work for a day or 2 before the experience becomes either mediocre or negative :hug:
     
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  5. Calathea

    Calathea Senior Member

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    I think one reason why snake oil methods are so popular today is because there are a lot of Americans who can't afford healthcare and are desperate to have something to try. It only occurred to me recently, I've always lived in a country with free healthcare.
     
    Last edited: Sep 13, 2015
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  6. SOC

    SOC

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    Many, many people need their belief systems to function in an unfair imperfect world. It doesn't really help them if people who can face hard reality try to strip those belief systems from them. All that happens is that they become unable to function at all. As long as they're not harming other people, my feeling is that it's best to let them wrap themselves in their comforting belief that something easy is going to make everything all better.

    The difficulty arises when people push their belief systems on the uninformed and present their belief system as science-based and solid. People can be lead down dangerous garden paths. We've probably all heard stories of cancer patients with treatable cancers who chose so-called "natural" treatments and died when they likely wouldn't have with standard treatment. Still, I think people who choose that path already are strongly invested in a belief system and so are probably not as innocently uninformed as it might appear at first. They are making the decision they were most comfortable with and that's the way it should be. None of us always makes the best decisions all the time, but we should be allowed to make our decisions about our health, for better or worse.

    Where I lose it are cases where people are making loads of money off of desperate people by leading them down garden paths that benefit the money-maker, but not the patient. I also have trouble with people who are extremely pushy with their "right" answer and simply won't leave people alone. LP falls under both these categories.
     
  7. msf

    msf Senior Member

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    This seems like the all/some argument again. The FODMAP diet was the main factor in my improvement from non-functional to functional.
     
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  8. Calathea

    Calathea Senior Member

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    Which is great, but did you also end up trying a huge amount of things that didn't help at all?
     
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  9. msf

    msf Senior Member

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    Some, but that is the some/all thing again. I´m worried that arguments like this may convince some ME patients that NO dietary changes will have a significant effect on their health.
     
  10. Mary

    Mary Senior Member

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    No one has all the answers, least of all the medical profession, which doesn't even believe we're really sick! Of course we need government-funded research, but I think it's a catch-22. They won't fund it because they don't believe it's real and they won't believe it's real until they can see it in a test tube. Patient experiences mean nothing to most doctors. We all know that. We have been left to our own devices for the past 30 or 40 years.

    And, many of us have had various things help with symptoms - no, not a cure - but help. Some 12 years ago my digestion was so screwed up, one glass of wine would make me sick for an entire day. I couldn't eat until after noon. I felt sick, tired, etc. etc. And then I did a liver detox for about a month - and afterwards my liver was very much improved, my alcohol intolerance disappeared, my appetite came back, I could start eating like a normal person. I don't care what a gastroenterologist might say about that. They're not interested in our experiences anyways. But this really helped me so much, and I would have been much worse off without it. Does everyone need to do a liver detox? Probably not, although it probably wouldn't hurt with all the toxins we're bombarded with.

    I learned about methylfolate on this board and started taking it some 5 years ago, and it has made a great difference in how I feel. It improved my energy to where I actually felt like a normal person on some days. And then I learned something else extremely valuable on this board, that suddenly starting Mb12 or methylfolate can cause a sudden increased need for potassium as cells start to divide and do what they're supposed to, which can induce potassium deficiency. And that happened to me - after a few days of methylfolate, I was hit by a severe fatigue (which was familiar BTW, I had had it before but never knew what caused it). Well, it was low potassium. I started taking potassium and titrated up gradually nad that horrible fatigue went away. If no one had posted about the low potassium issue, I would have had to stop the methyllfolate, one of the few things which has helped my energy.

    I've tried way more things that didn't help, than did, but I'm very grateful for the things that have helped me. And if I waited for the medical profession to do something, I'd probably be bedridden.

    Of course no one has all the answers and we are all dealing with different issues - what helps one person may not help another. That's life. I've told my sister we're lab experiements - we're doing our own research because we have to. Anyways, I've never seen anyone here pretend to have all the answers. Mainly people talk about what helps them.. And as to sugar, its effect on the immune system, candida, pathway to diabetes, etc. is so well-documented it's a no-brainer that people with compromised immune systems should avoid it - it's actually not good for anyone, particularly in quantities ingested in "typical" American diets - just look at our obesity/diabetes epidemic.
     
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  11. alex3619

    alex3619 Senior Member

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    Part if the problem is while conventional medicine is good at injury, and much of acute disease, its not so good at most chronic disease. People want answers. Other people promise them.

    Snake oil might actually be good for some people, though the principle is fair enough - quack products have been sold or provided throughout history.

    Not being able to afford conventional health care is indeed an issue. This occurs even in countries with "free" medicine. Not all medical treatment is covered in counties with a free medical system. Some patients want more, and some need more. So they go looking.

    A lot of what is discussed here on PR is not about cure. Its about improving quality of life, and reducing symptoms. There are, indeed, no reliable cures. Some people do get better, and do so after X, Y or Z treatments, but then the next dozen might not even respond, and one or two might get worse. In part this is why I use the lemon rule - most treatments are lemons but you wont know unless you try it. Just be prepared for the sour taste.

    People getting better after any particular treatment might not be due to that treatment. If 1000 people try it, and 10 get better due to other reasons, then at least one of them will probably presume the treatment cured them. Quackery self promotes based on that one person who becomes motivated, and sells it or gives a testimonial. That is why we have scientific studies, to see if a link can be shown, if its actually likely it worked. Most treatments fail, including most conventional treatments still in the research phase.

    Sometimes its about hope, not cure. Its almost like a gambling addiction. Maybe this one will be a cure. No? Ok, maybe this next one will be a cure! No? Ok, then maybe .... you get the point.

    It would be a mistake to presume some of these treatments do not help some patients. The issue is we have no basis for figuring out who will respond and who will not, at least most of the time. Even with known genetic issue the response is often variable. This was one of the issues with the drug Ampligen which makes a huge difference to some patients but not others.

    We have several potential cures in the scientific pipeline. They are not there yet. The one furthest along is Rituximab. Even then I anticipate nearly half may not respond or cannot have the treatment, and of the responders only some will be cured (at least under current protocols).

    If 10% of what we spend on supplements and alternative medicine went to medical research we could crowd fund real advances in the science.

    If even 0.1% of the disease costs to society went into medical research then governments could make a real impact over time. It would also help if all wealthy countries did this, not just a handful in the case of ME and CFS.

    Yet if people cannot try things, if the possible research looks years and even decades away, then they can lose hope. Its so much harder to cope without hope. That also ties into the sense of control issue.

    Finally I want to comment on peer pressure. People don't know what to do, or how to help. So they hear about something. So they tell you. Or sometimes they insist you should try it. Sometimes they even blame you if you do not, and use the "you don't want to get better" argument. Sigh.
     
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  12. bsw

    bsw w/r/t

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    While I think anyone promoting a 'miracle' cure for CFS is automatically full of shit (unless the cure is a long-term, intensive, well-thought out, multi-pronged attack on the underlying causes), eating the standard American diet is really stupid for anyone with compromised health, no matter what your symptoms are.
     
  13. Calathea

    Calathea Senior Member

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    One thing I've noticed on this forum, that's been concerning me for years, is the number of people who seem to have developed orthorexia. It's really unhealthy for someone with ME to restrict their diet hugely because other people are telling them entire food groups are bad, not because they actually need to. We have enough trouble without making things worse. I once gave up gluten for a year on the advice of a dietician, purely because I was overweight at the time, am naturally an apple shape, and had premenstrual bloating on the day she saw me, so she decided that I was gluten intolerant based on a glance at my figure. Gluten is a common enough problem that it's worth a shot, but an entire year was completely unnecessary, and I was easily convinced because so many people nowadays believe that gluten is evil.

    And not everything is worth trying, it should all be checked out as much as possible first. No one should be trying the Lightning Process, and graded exercise programmes are generally to be avoided. I had people here telling me to drink litres of olive oil for a "liver flush", a well-known scam, after I had gallstones. One guy kept bullying me about how he could "save your gallbladder" this way months after it had been removed! On the other hand, I have learned plenty of useful things here, solid stuff like using salt for dysautonomia, and I'd probably still be B12 deficient (something doctors never flagged up until it was over) if it wasn't for here.

    Speaking of 10% of what we spend on supplements going to ME research, if you're in the UK you can actually do that. This is the affiliate link for buying from Amazon where 5-9% of the amount you spend goes to ME Research UK. You can also go there via a link on the MERUK website.
     
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  14. Kati

    Kati Patient in training

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    i am not sure what you mean by standard american diet. It may mean different things by different folks. However it is very easy to judge others. What people eat depends on many factors, including choice and preferences, availability and access, ability to cook for yourself, or people to cook for you, level of income etc. What one will judge adequate diet will be judged as junk by someone else. Everybody has different standards especially when one is sick. Who is right? Who is wrong? i say, please refrain from judging other people.

    Diet is not everything.

    Disclosure: I eat almost everything. There are a few dislikes and restrictions, like beets for which my lower GI tract goes to war with. But I love beets :aghhh:
     
    Last edited: Sep 13, 2015
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  15. DanME

    DanME Senior Member

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    I completly agree with you. From a scientific or critical standpoint it's actually quite simple: We don't know, what causes ME/CFS and we don't know the pathophysiology either. If you want to gain new knowledge, you have to accept the current absence of it. Everything else is pseudoscience and damaging speculation.

    We maybe have some hints for generating larger hypotheses (immune dysfunction, an autoimmune process, and so on), but that's about it. Now, we have to test these hypotheses (RTX studies) and collect more data for new ones (OMI study). That's the only way for finding a cure or other drugs, which can improve our lives. Serious and well conducted research is the key. Also doctors and researchers, who don't shy away from listening. You can extrapolate a lot from symptoms, but you have to listen carefully to do that.

    It's really hard to accept, but we are not in control. Probably we just won the lottery of ME/CFS and had very bad luck. Maybe one of our B cells had the wrong genetic shift at the wrong time. Or some virus triggered something, we were genetically predispose to. There probably wasn't much to do to prevent our disease. And currently there isn't much to do to get better (with the large exeption of rest).

    In my opinion, most of the advice for us comes from pretty unfounded speculation, which has never been tested anywhere. Science is a hard and complicated business and creating hypotheses out of nowhere is not a good start.

    But I have to say, anecdotal evidence is not completly useless. Creating a hypothesis has to start somewhere, but instead of wild speculation, it must be grounded in reality and previous experience. Fluge and Mella would have never started using RTX or Cyclophosphamide, if some ME patients hadn't told them about their success with chemotherapy during cancer treatment. They listened to their patients and are testing their hypotheses now. Like Montoya did with valcyte. But that didn't turn out as a huge success. We ll see about Fluge and Mella's theories.
     
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  16. Violeta

    Violeta Senior Member

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    So @Kati , where do you want us to send our money?

    And @Calathea , which recommendations do you think we should try?
     
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  17. Violeta

    Violeta Senior Member

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    Is it okay to judge people who try to improve their diet or refrain from eating foods that make them feel worse?
     
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  18. drob31

    drob31 Senior Member

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    Miracle cure = replace every hormone, and carpet bomb the immune system with methotrexate if immune system if overfunctional, along with possibly prednisone, or wake up a sleeping/battered immune system with transfer factor/gcmaf/anti virals/anti parasite/antibiotics/mega dose zinc/vitamin C?

    Basically take an insane amount of stuff and hope it works.. I'm just speculating of course.
     
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  19. alex3619

    alex3619 Senior Member

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    This actually works for MS. Its a miracle! It also kills a large percentage of patients. So for some reason the therapy never caught on. I suspect it might work for many immunological diseases. However a more targeted therapy like Rituximab is likely to be safer. MUCH safer, despite all the risks of Rituximab.

    For funding medical research, we need three core areas. The first is basic science. We just don't know enough about what is going on. Second, we need to test biomarkers. We have lots of candidate biomarkers and not enough testing to prove they are useful. Third, when a promising treatment comes along we need it to be tested in multiple sites and countries. Currently the leading one is Rituximab, but there will be others over time.
     
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  20. Kati

    Kati Patient in training

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    Well @Violeta many groups are worthy of being supported. Open Medicine Instutute is one of them. Simmaron Research and Dr Lipkin/Hornig group are also very worthy of being supported.
     
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