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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. cosmo

    cosmo

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    As there title really.

    Has anyone been completely cured of CFS and how?

    Is there one way to treat it or is it each to their own?

    Thoughts.....
     
  2. arx

    arx Senior Member

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    Fred(as Freddd on these forums) has shared his story and his story is quite popular. I don't know if 'cure' is the right word to use,but a remarkable jump would be close. I don't think there is one way to treat it. There are so many factors that can cause the set of symptoms referred to as CFS. There are so many people working in different directions. I'm sure many have found something significant to improve their quality of life.
     
  3. Ema

    Ema Senior Member

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    For me, I've definitely had a relapsing/remitting pattern over the past 20 years with some periods coming extremely close to fully normal.

    I think there are commonalities to treatment but that can vary considerably depending on the individual. Most of us have lots of systemic inflammation, for example, but the causes (and therefore the treatment) may be different.

    Ema
     
  4. Sparrow

    Sparrow Senior Member

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    The only time I went into almost complete remission, I used no treatment at all. I did rest a lot, though. I'm not sure anyone is ever "cured" with this, though. I suspect we'll all always be at risk of another major crash.
     
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  5. caledonia

    caledonia

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    This question comes up from time to time, so you can do a search on it for more detailed info.

    The short answer is yes, although it seems as though people will always need to be aware of certain things so they don't relapse. But it's not like they're in danger of relapsing every second. They can work full time, exercise, have a social life, etc. But if they notice certain symptoms coming back, then they know they have to slow down and not continue to push it. They should also avoid certain toxins such as certain anesthetics and so on.
     
    oh_noes likes this.
  6. cosmo

    cosmo

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    Thank you for the replies.

    I have been looking at things my specialist has been basing my treatment plan on and I feel sceptical.

    Sparrow, I feel very similarly to you, the only times I feel more relieved of the fatigue is if I am not taking anything.

    My specialist thinks that it can be cured but only with a lot of drugs, but they don't seem to work for me. I'm not sure.
     
  7. caledonia

    caledonia

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    Watch the Methylation Made Easy videos (the link's in my signature). This explains how glutathione depletion due to a partial methylation block causes ME/CFS and how to fix it. Drugs generally only mask symptoms and can make you worse due to adding more toxins to your already poorly functioning detoxification system.
     
    cosmo likes this.
  8. cosmo

    cosmo

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    Thanks for that, I will have a look over the weekend, bit tired to take anything in tonight.

    That's how I feel though, like it's toxins or poison going in and I am suffering because of them. I feel like that song, the drugs don't work, they just make you worse!!!
     
  9. taniaaust1

    taniaaust1

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    "My specialist thinks that it can be cured but only with a lot of drugs, but they don't seem to work for me. I'm not sure."

    If you specialist thinks he can "cure" it and tells you that, I'd be running away from him. Only those who dont have much clue usually talk about "curing" you. .. if he tells you he can help you some, that would be a different story. ME ISNT curable with "a lot of drugs", maybe "some" cases of CFS could be thou.

    I personally think it could be curable as I had a full remission for a while (I even did one of the worlds biggest marathon events (100km/63miles run) in that time without a relapse.. issue is.. I still was suceptable to it so when I caught a virus again (what seemed to be an everyday cold flue virus) and pushed while I had this viruses, not taking time off of work (why do so when I thought I was completely like normal person again, no longer needing to take any care as I'd been great for quite a while). I just ended up back with ME again from it.

    So yeah you could get cured if someone was good enough to work out the factors in your case (unfortunately it seems to be different for all) but you still will be as another said.. at risk of getting this illness back, be it due to a viral trigger, a vaccination, surgery, car accident or whatever.

    In my case my full remission did not come about via drugs or supplements but rather by aggressive rest therapy and very good pacing. I paced/rested my way but to full wellness and able to do everything again, the better I got, the more and more I could do until I was normal again.

    I personally think if i had been taking drugs as like bandaides for what was going on in my body, i may not have recovered for that time.
     
  10. Enid

    Enid Senior Member

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    Not that I know and I know a number afflicted. Best I heard is living with a reduced lifestyle, medicated for various symptoms - if Docs can find - and hoping all they missed in the first place does not return so severely.
     
  11. SOC

    SOC Senior Member

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    I don't believe that there is a true cure at this time. I suspect that there won't be until we find the root cause and deal with it. Even then, I think it's quite possible that some or all of us have permanent damage that will never be "cured". While I have seen or heard of some long-term full remissions, I think there is always the risk of relapse.

    That said, I think that some patients can achieve full functionality, ie "normal" life, with the right treatments. Most of them probably need to take symptomatic treatments to sustain full functionality and need to be more than usually cautious about illness and over-exertion to avoid relapse.

    I agree with taniaaust1. If your doctor is promising a cure, he's probably not a good ME/CFS doctor. I'd talk to him, though, to make sure that you truly understand what he's saying. One specialist told my daughter that he thought he could get her "back to normal", which she is, but she is not cured. She still has autonomic and immune dysfunction and takes symptomatic treatments.
     
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  12. Allyson

    Allyson *****

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    It is looking like POTS at least is a common symptom for ME, Lyme. EDS and of course POTsies ......when people finally get accurately tested for it.
    It seems POTS and its significance has been widely overlooked due to ignorance of it and correct testing procedures - again I read the other day of doctors leaving people on tilt tables see if they fainted and using that as a diagnostic method!!!
    There is no need to faint to have POTS and a good diagnostician can often diagnose it on symptoms alone..
    There are lists of good POTS docs on some fb pages or go to a POT page/s on and request a recommendation to one in your area.
    And no - POTS is not cureable at the moment but there are treatment that work well for many people with it.

    Ally
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    100% cure and no need for pills and possions to maintain your level of function i think is rare. I think one can make good improvements though. test as much as u can and treat what u find. Like others have mentioned, we just dont know the one single cause, thats if there is one single cause.
     
  14. EtherSpin

    EtherSpin

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    I wonder if there are people who slowly but surely (after they achieve a high percentage of recovery) slowly build up muscle and a little cardio and end up achieving normal function by having a body with above average muscle tone. I hear (as Im sure you all do) of all manner of people who are personal trainers or nutritionists who claim to have healed themselves from CFS and I generally observe that they aren't saying much about cognitive symptoms or POTS , sometimes not even the long delay PEM so without being judgemental I find it hard to suss out whether they had actual ME/CFS or an unfortunate stint of post viral fatigue or some other mysterious malady.
     
  15. taniaaust1

    taniaaust1

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    I had my full remission for quite a while and I can say I fit all the ME criteria (I have had over 90 symptoms including some of the well known ME abnormalities showing on tests). It is true thou that at the time I had the remission, I may not have had POTS at that point, nor at that point did I have IBS or food issues or MCS (they came much later) but I do now. I thou had severe CFS and would of fit the ME criteria back then.. bedridden long term, before I had the remission , I had a very viral like illness which was highly variable and with FM too. I had had to give up collage due to major cognitive symptoms etc all before the remission.

    The ability to build up muscle and do cardio.. only came as I was improving and not the other way around.
     
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  16. EtherSpin

    EtherSpin

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    thanks very much for your reply Tania, I didnt mean to detract from the legitimacy of cases like your own,just people who claim to have the solution to CFS but seem to mainly reference lethargy and not the weirder symptoms . are there any threads on here I could read to find out about what has helped you improve?
     
  17. xks201

    xks201 Senior Member

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    This disease...call it CFS or ME has multiple causes. If you claim on this forum you are cured, everyone will tell you you didn't have true ME. Well there is no such thing as "true ME". Anything can cause brain inflammation and fatigue. Sure people are cured of fatigue and brain inflammation. I'm dependent on hormones and a dairy free diet and dopaminergic drugs. But I consider myself pretty much cured.
     
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  18. EtherSpin

    EtherSpin

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    it certainly appears (at present) that CFS/ME has multiple causes though it seems the docs im seeing actually think it has 1 cause that makes for several knockon effects, according to that theory any given patient and their practitioner may attribute the condition to any of those knock on effects (viral reactivation,inflammation,autoimmunity,mitochondrial dysfunction etc) .
    I dont in anyway mean to detract from your recovery but for the sake of semantics if you have zero symptoms with the regimen you listed and are indeed dependent on that regimen it would be appropriate to say you are 100% treated but not cured.
    there are more and more emerging common metrics for ME sufferers so I think in time we will become very clear about what it is, Im still yet to hear of anyone with a pretty full symptom set (to definately confirm ME) who thinks they have returned to their full health with a year or so under their belt where they did not need to keep taking drugs or pacing their energy expenditure - bearing in mind that I *want* to find people like that! that would be the holy grail. I found one woman on youtube but then she put her ME down to being a candida related thing and almost seemed to say that it was the cause of everyones CFS , all the other promising ones either lacked key characteristics of CFS or quietly mentioned towards the end of their vids that they do not have the energy they used to despite having ways to return to work and normal life. pacing seems to be a constant
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    At the end of the day our immune system is buggered.
    So i think even if we say knock down ebv if its a source of symptoms, we are still open other infections etc just like other immune defiencies and auto immune conditions. I think a common flow on affect is that many of us will have hormones dysfunctions as well. Need to treat all the abnormalities found and hope for the best.
     
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  20. alex3619

    alex3619 Senior Member

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    I know of people with "CFS" (but which type?) who have recovered. I also know of a few who recovered, went back to a normal life, and then relapsed very badly. One of those has never recovered from the relapse and is much sicker than they were the first time.

    I think full recovery is theoretically possible, and does occur sometimes, but I also think many cases of "recovery" may be linked to misdiagnosis, and that its more accurate to talk of remission than recovery. Its also likely that many recover partially and adjust their lifestyles and management of their illness so they can live a nearly normal life. So long as they look after themselves, this often continues.

    There is also the issue that most cases of post-viral fatigue disappear within six months to five years. Such fatigue is most probably not ME. These cases are often diagnosed as CFS, and from the Dubbo studies we know that about 8-12% will actually go on to develop a CFS-like condition. The Dubbo studies did not use an ME definition, so this is less robust of a finding than I would like.

    Under an experimental protocol I was on in the early to mid 1990s, about 60% of patients experienced partial to full remission .... but only while on the protocol. Further the long term risks of the protocol were hard to assess. However about 10% of these appeared to no longer need treatment. This again used a CFS definition, not an ME one, and the protocol was never operationalized for mass use, and was hideously complex but not expensive. On the downside about 20% had no benefit, and about 10% got worse. This data excludes smokers. Zero smokers improved under this protocol. It was primariliy a dietary protocol featuring precision control of fat intake and a natural food diet. I was on it for some years, but only had small improvements that persisted, though short term improvements were considerable. I think I actually declined on this diet over time ... the short term gains were more than countered by long term problems. Run a search on Gray and Martinovic and CFS on PubMed and you will get one of their abstracts.
     

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