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There will never be a cure for CFS...

Discussion in 'General ME/CFS Discussion' started by Intuition, May 27, 2018.

  1. Intuition

    Intuition Dance with ME

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    I've come to the realisation that there will never be a cure for CFS. I think it's mostly due to the fact that we don't even know exactly what we have. Despite the ongoing research, I somehow doubt that we all share the underlying biomarker. If they do discover a biomarker, it will be called a new disease, and just exclude a portion of sufferers from having the label CFS. I think that CFS will always continue to exist because there will always be patients who continue to experience symptoms and medical science will never be able to find all the causes.

    Sorry for being pessimistic, I felt really good today and went out for breakfast. Now I am paying for it hard...
     
    Judee, crypt0cu1t, Mary and 8 others like this.
  2. mariovitali

    mariovitali Senior Member

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    IMO, We are getting very close actually.
     
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  3. Wonkmonk

    Wonkmonk Senior Member

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    I'm a bit more optimistic. As soon as researchers find out what is causing CFS (probably gradually patient subset by patient subset), there will be a cure or at least good management options very soon.

    Look at HIV. Just over a decade after the virus was identified, people could be treated and after 20 years with proper treatment only few people still died. Today, treatment options are so good that most patients have few side effects and normal life expectancy.

    I think it will be a similar development in CFS as soon as the cause(s) are/is identified. Why hasn't this happened so far? Easy answer: Researchers, politicians and doctors only recently started to really care. The real effort has just begun in the past years.

    Again compare with HIV, which was on top of the research agenda right after the first cases became known.

    We'll be getting there. And I think we'll be getting there in the next one or two decades.

    A decade more of disease? Sounds tough, but if you are in your 30s, 40s, 50s, or even 60s, it may be worth to tough it out.

    After all, there's also a favorable comparison with HIV: We are not dying. Time is on our side.
     
    kurt, Forçe e Honra, ahmo and 4 others like this.
  4. RebeccaRe

    RebeccaRe Moose Enthusiast

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    A cure? Maybe not.

    ME/CFS (or whatever conditions we have that have a similar constellation of symptoms) may be like many chronic conditions out there that cannot be cured. But I am hopeful that, over time, doctors will figure out some treatments that help people feel better and function at a higher level. And I mean treatments that can be proven in double blind studies and written about in peer reviewed journals. That would certainly be an improvement on the state of things right now! For me, anything that would give me some relief from the symptoms of this condition would be welcome.
     
  5. alex3619

    alex3619 Senior Member

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    A CFS cure? First we need to decide what we mean by CFS. To me its a grab-bag diagnosis - lots of things jumbled together. I think that people diagnosed with CFS will eventually get cures, though probably treatments first, but I think it likely that the issue with them not being CFS cures but for the real condition is highly probable.

    The first dbpcRCTs of treatments based on better understanding of provable pathophysiology are likely to at least start before 2020. In terms of treatments the first based on new findings might start being discussed this year, though as patients we might not hear the details.

    Until we have sound biological understanding of the cause/s we are not going to be able to do more than speculate however. For that we have to wait on the science, and with a huge number of abnormalities now under investigation (toward 300?) it is likely we will keep learning things. This does however require resources, including researchers and funding. That is what advocacy should be primarily focused on, though there are other advocacy issues that are almost as important. With enough researchers and enough funding we will see results much faster. We do have an impact on that, though perhaps marginal so far.
     
    Mary, FMMM1, alkt and 2 others like this.
  6. Neunistiva

    Neunistiva Senior Member

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    Yeah. Advocacy for ME/CFS used to feel like trying to bring down a concrete wall by banging your head against it.

    But in the last few years we began to see real results.

    We should take all our anger, hopelessness, urgency, desperation and focus it on constructive advocacy.

    It's going to take a lot of pushing and hard work, and sometimes the price will be high like in Alem Matthees' case, and sometimes a simple comment and an upvote can bring in $5 million for research. So let's just do the best each of us can and draw hope from there.
     
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  7. Pink

    Pink Senior Member

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    I think also some Drs believe the cause is viral, others mitochondrial, or mold or whatever. How can there be a cure if drs cant even agree on a cause?
    I agree with you @Intuition . I'm sorry for your crash
     
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  8. Neunistiva

    Neunistiva Senior Member

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    Because no disease was ever cured by doctors agreeing on what it is, but by researchers running experiments.
     
  9. Pink

    Pink Senior Member

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    Yes but what type of experiments (following which school of thought. Mitochondrial, viral, other?)
     
    alkt likes this.
  10. Wishful

    Wishful Senior Member

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    Experiments in all those areas are worthwhile. It's likely that there are multiple abnormalities involved, and if you have 'x' of them, you have CFS, and one or two more and you have ME. Maybe there's a t-cell abnormality that isn't a problem in healthy people, and a mito abnormality that isn't a problem in healthy people. Together they feed back on each other, and you have CFS.

    I'm optimistic about the recent research efforts. I'm also optimistic because I found a very effective blocker (inhibitor?) for my physically-triggered PEM. No one else has mentioned it being so effective for them, but it still shows that this disorder can be treated effectively (at least partially). It's not a permanent degradation that can never be reversed. It's just an imbalance that can be set back into balance. Once the researchers locate the imbalances, they can start looking for treatments. My guess is that it won't be a 'one treatment for all', but rather a list of possibilities for patients to try, to find what works for them.

    Yes, there probably will be some patients who will have similar symptoms, but lack the markers for ME/CFS and don't respond to any of the treatments. They'll have to face the same thing we have, except worse, since it will involve a smaller number of victims. However, when doctors say "It's not ME/CFS. It's psychosomatic.", the victims will be able to say: "That's what they said about ME/CFS." and it was proven wrong.
     
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  11. Hip

    Hip Senior Member

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    For some people there is already a cure. This patient with cytomegalovirus-associated ME/CFS went from moderate ME/CFS to full remission using the antiviral Valcyte, prescribed by Dr Martin Lerner.
     
  12. Pink

    Pink Senior Member

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    @Hip sadly valcyte is doing nothing for me
     
  13. Runner5

    Runner5 Senior Member

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    You know, it's like THe LIfe of Brian, "always look on the sunny side of life."
     
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  14. taniaaust1

    taniaaust1 Senior Member

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    I agree there will never be a cure for "CFS" as it would be covering various different things as its a waste basket diagnoses. I do believe thou that there will be a cure for ME and for various other things which may be right now falling under the heading of "CFS but yeah, there probably will always be an unknown group of things which are labeled with a "CFS" or another name label but with research that group will get less and less as illnesses are pulled out of it.

    Get to know what subset of CFS you fall under and others who have it "like you" and follow the research for that group.
     
  15. AndrewR

    AndrewR

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    I have got to say that the research and progress made these 2 years are keeping me positive. A cure? Maybe not at first. But treatment? And the possibilty of having a normal life again? Absolutely a possibility. Just need to find that strength to hold on, and stick around.
     
    HeleneG, Stretched, Mary and 3 others like this.
  16. Sushi

    Sushi Moderation Resource Albuquerque

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    I have been watching the research for years and I am encouraged by the the dedication, qualifications and talent of the multi-disciplinary group of researchers who have fairly recently become involved. Research-wise I think we are in a better place than ever before.
    :star::thumbsup::hug:
     
    HeleneG, Mary, lemonworld and 5 others like this.
  17. robinhood12345

    robinhood12345 Senior Member

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    The cause of CFS same with the cause of all disease is micro nutrient deficiency. So there is already a cure.
     
  18. Wishful

    Wishful Senior Member

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    If it was micronutrient deficiency, shouldn't the symptoms vary with diet?
     
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  19. robinhood12345

    robinhood12345 Senior Member

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    Symptoms do vary with diet. Which is why eating bakers yeast, and or rice bran cereal, and lecitihin will cure most diseases as they contain most of the b vitamins. Then find a food source of ADEK, vitamin c, and b12 on nutritiondata for them.

    One of the most common deficiency is choline because a high fat diet eg cheese (pizza is the worst over 200g of cheese on one pizza), milk, yoghurt, ice cream, then fried foods in cooking oil, deplete it. Cholines job is to make phosphatadyl choline for lecithin which is what all cell membranes are made of including lipo proteins whos job it is to take fat away from the liver. And it makes acetyl choline which is involved in memory, concentration, and also peristalsis in the intestines. In rats deficiency causes fatty liver, kidney damage, and atherosclerosis which leads to heart attack, and stroke. Deficiency may cause CFS also. Choline/lecitihin deficiency would be a factor in all diseases which leads to body unable to heal, and repair itself. Thiamine, and biotin deficiency are common too.

    As Casimir Funk said in 1912 disease is caused by deficiency of vitamins due to lack of variety in the diet.
     
    brenda likes this.
  20. Sushi

    Sushi Moderation Resource Albuquerque

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    But sadly, it won't cure ME/CFS.:(
     
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