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Has anyone been completely cured of CFS?

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

  1. Valentijn

    Valentijn Activity Level: 3

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    And if you went to a cancer forum, and peddled LP as the "cure" for it, you'd get a lot of extremely offended responses. We're offended for the same reason. We have a chronic (biologic) neurological disease which involves various objectively documented biological abnormalities which cannot result from thought processes or inactivity.

    Please try to imagine how hurtful it would be for a cancer patient to be told that they can be cured if they want to badly enough, with a three-day course. And with the message that if they fail to be cured, it's because they weren't trying hard enough. You and LP are making us feel that way, and you don't seem to care.

    We have infections verified by blood tests. We have chronic inflammation verified by blood tests. We have a unique biological disability verified by a two-day CPET. Unless you can objectively verify that you had these problems before LP, and lack them after LP, we are really not going to be interested. Your subjective self-report of your illness and the "cure" are one small step above "completely useless" as persuasive evidence.

    We're happy to respect that you feel better after LP. But we're not willing to close our eyes to the scientific evidence, our objective lab results, or our own subjective experiences, and blindly believe that changing our thinking will cure our disease.
     
    Cheshire, Snowdrop, Tristen and 9 others like this.
  2. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Sorry for a stupid question, but what is LP? I have never heard of it and tried to go back and read the thread to find the meaning of the term but am missing it.
     
  3. Valentijn

    Valentijn Activity Level: 3

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    Lightning Process. Another version of "close your eyes, pretend you aren't sick anymore, and tap your heels together 3 times". With extra cost and even more absurd claims of "recovery" than CBT.
     
  4. Daffodil

    Daffodil Senior Member

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    why are you ignoring the requests for proof of immune abnormalities?
     
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  5. redviper

    redviper

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    I would say the above response from Valentijn was very articulate and politely summarized the opinions of most here.

    Be cautious though Dster, you are walking a fine line and unnecessarily provoking some very sick people. We are glad that an enhanced form of CBT helped you with your condition, but for most of us, behaviour therapy and a placebo effect is not the answer to our devastating chronic illness.
     
    NK17, Tristen, Valentijn and 3 others like this.
  6. Legendrew

    Legendrew Content team

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    I think that sometimes the illness just runs its course and burns itself out.

    I don't believe there is any effective treatment that exists for ME/CFS today and the fact that ME/CFS is likely made up of multiple different conditions means that anything one person finds that helps is unlikely to help everyone.

    Things such as GET/CBT may help those who have already begun to substantially improve but I don't think there is good enough evidence to support any treatments whatsoever as of yet.

    Time is the best chance of improvement in my opinion and it seems to be the case that while few recover to 100% of their former selves, many ME/CFS patients do improve over time to varying degrees of health and a modest chunk do return to a somewhat normal life.
     
    Alea Ishikawa, Sinclair and justy like this.
  7. SOC

    SOC Senior Member

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    Neither my daughter nor I improved over time. In fact, we continued to get worse over time. It was antivirals and treatment for dysautonomia that gave us significant improvements.

    That said, we clearly have ICC ME, not Oxford, CDC Empirical, or Fukuda CFS -- meaning we have, among other things, clear PEM/PENE, not "fatigue" or exercise intolerance. We have documented immune dysfunction, multiple active intracellular infections, and abnormal CPET tests. For our ME/CFS subset at least, I don't believe research supports, or common sense suggests, that time alone would resolve those abnormalities.
     
  8. Legendrew

    Legendrew Content team

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    The trouble here is that we are looking at an individual couple of cases whereas I was discussing the disease on a population level. It would be foolish to say that diseases cannot get better by themselves; many autoimmune conditions can indeed burn themselves out even ones where there is clear pathological damage occurring such as lupus and there are even reports of some cancers simply getting better by themselves (not I'm not advocating these diseases remain untreated, my point is that the body's ability to repair itself often goes unrecognised!).

    What many don't realise is that the vast majority of medical treatments given today simply help the body to correct the problems itself; whether that is weakening a pathogen allowing the immune system to destroy the agent or otherwise - to say that time doesn't help in chronic diseases is painting the wrong picture entirely.

    As far as disease definitions, I'd rather not get into that as I personally feel they are all simply placeholders until we find actual ways to test for the disease; personally I think any definition not based on lab findings is already on somewhat shaky ground. I also think that both ME and CFS are terrible names and hope that the disease gets a befitting name once the underlying pathology is discovered, it's beyond me why people clamor over ME rather than CFS when they're both as useless as one another in terms of describing the disease.

    It's interesting to hear that you found you got an improvement from antivirals and other treatments but I'd be very wary of recommending these types of treatments in the absence of trials weighing up the risks and gains with good results and I think we all know that such a trial has yet to be published and replicated.
     
    Last edited: Jun 18, 2014
  9. SOC

    SOC Senior Member

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    Certainly, we don't have much research on any ME treatments, so everything has a large degree of speculation and anecdote at this point. At the same time, I have seen no evidence (other than that of the BPS school) that this disease, on the population level, burns itself out over time. In fact, there are many patients known to have ME for decades, which would be unlikely if time alone healed ME.

    Agreed, there are reports of all kinds of illnesses going into spontaneous remission. They are rare and inexplicable. Even though spontaneous remissions are known to occur, no respectable physician recommends that a patient just wait a few years without treatment on the off-chance that they'll get one of the rare spontaneous remissions.

    Yes, many medical treatments are designed to help the body recover, but still require something from the body's own resources to affect a complete cure. Antivirals are an excellent example. They stop the virus from replicating, but they don't kill off infected cells. The body's immune system still needs to do that part. Does that mean the antivirals are unnecessary? Of course not. When the body cannot handle the infection alone, as is the case with chronic infections, the antiviral provides the necessary support of preventing further infection while the immune system is trying to catch up. Without the antiviral, the infection overwhelms the immune system's ability to control the virus. This is particularly important with immune impairment, which is known to exist in ME. If the immune system is already struggling to contain and fight the infection, it's foolish to argue that because it still has some capability to fight we should not provide the assistance it needs to succeed.

    I agree our definitions are placeholders at the moment. My point was that my experience is likely to be relevant only to the subgroup that is similar to mine, and may very well not apply to patients in a different subgroup.

    The reality of my illness (and my daughter's) IS based on lab findings. We have multiple immune dysfunctions. We have multiple chronic and/or reactivating infections. We have abnormal CPET test results. We have measurable OI. You don't have to call it ME or CFS or ME/CFS if you don't want to. They are still lab findings that are consistent with the ICC and the belief of top ME/CFS experts as to what constitutes ME.

    Yes, we need a cleaner definition. At this point in time it's probably more politics than lack of lab findings that prevents us from having that definition. That doesn't mean that ME doesn't exist or that our experts don't know it when they see it.

    There is no doubt that what works for one patient diagnosed with "CFS" may not work at all for others with the same diagnosis. It is almost certainly true that everyone under the "CFS" umbrella does not have the same illness. For that reason alone it is nonsense to suggest that any treatment that isn't confirmed to be effective for all CFS patients should not be used for any CFS patient.

    There are no published and multiply-replicated medical treatments for ME. Are you suggesting that patients should use no treatments for 20 years or more until that research is done, even when the medications are well studied and are used for the same symptoms in other illnesses? Valcyte is established treatment for CMV and HHV6 infections. The trials are done. And published. And replicated.

    Just because a patient has ME/CFS, that doesn't mean s/he shouldn't take Valcyte for a CMV or HHV6 infection because Valcyte has not been studied as a treatment for CFS. It doesn't need to be a treatment for CFS. It's the standard treatment for the known infection. Should ME/CFS patients without active CMV or HHV6 take Valcyte? I certainly don't think so, and I doubt there are many, if any, doctors who do think so.

    I think some patients are having difficulty distinguishing between treatments which are a cure for ME -- there aren't any -- and treatments for known symptoms/conditions that are a part of ME. Treating symptoms and secondary conditions can make a HUGE quality of life improvement for ME patients. It's not a cure for ME, but if it makes it possible to lead a normal life, or even vastly improve quality of life for a still limited patient, it's well worth doing.

    Antivirals are well-studied, well-documented, and approved treatments for certain viral infections. If you have the infection, it's perfectly reasonable to take the antiviral. It doesn't have to be an established treatment for ME; it the established treatment for the infection.

    Antibiotics are established treatments for a large number of infections. If an ME patient has those infections, taking the appropriate antibiotic is intelligent, even if it doesn't cure ME.

    A number of different medications are well-established treatments for various kinds of OI. If an ME patient has OI, then treating it with established OI treatments makes sense. It doesn't have to be an established treatment for ME. In fact, those treatments will probably never be trialed specifically for ME. They don't need to be. They're well-studied for the symptoms in question -- OI.

    The risk is not in taking a medication that's not been trialed as a CFS treatment. The risk is in NOT taking a well-established treatment for a known condition.

    I will continue to suggest that patients with documented active CMV and HHV6 consider taking Valcyte. I will also continue to suggest that patients with documented active EBV consider Valtrex or Famvir. At the same time, I will continue to (as I always have) discourage patients who do NOT have active CMV or HHV6 from trying to get Valcyte. Valcyte is a serious medication for a serious infection. If you have the infection, you should probably take the medication, even if it isn't a cure for ME. If you don't have infection, you probably shouldn't take the medication for it. Simple. :)

    In my opinion, sitting around avoiding established treatments for known symptoms and secondary conditions because those treatments are not trialed treatments for CFS is a sad waste of a human life.
     
    Last edited: Jun 18, 2014
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  10. lansbergen

    lansbergen Senior Member

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    That was my starting point. It worked for me.
     
    SOC likes this.
  11. Tristen

    Tristen Senior Member

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    Agreed. Even if only partially healed, it may be life saving. I don't know how much longer I could have tolerated severe bed bound ME. If not for AV's giving some of my health back....well, not sure what would have happened. Just know I'm now able to tolerate and manage remaining symptoms much easier.
     
    SOC likes this.
  12. Dster

    Dster

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    Objectively, I was diagnosed with ME/CFS - nothing I tried helped - then I did the LP and my life has been transformed - these are indisputable facts, not subjective hearsay. If you want to claim I was misdiagnosed then so be it.
     
    Last edited by a moderator: Jun 18, 2014
  13. Dster

    Dster

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    It wouldn't be a surprise if I was defensive. But I'm not - I merely report what's happened to me (and a close colleague). Diagnosed with ME/CFS, cured by LP
     
    Last edited by a moderator: Jun 18, 2014
  14. Dster

    Dster

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    No - my question is has anyone ever been cured of ME/CFS
     
  15. Dster

    Dster

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    I still have a full head of hair, have never needed the skills of a psychiatrist, have never been prescribed lithium, your last paragraph is incomprehensible so I can't comment on that one. There are too many people visiting here that might benefit as I have from LP and they need to have a balanced objective view of someone who has experienced its effect first hand, rather than listen to hearsay and rumour from those that haven't
     
    Last edited by a moderator: Jun 18, 2014
  16. SOC

    SOC Senior Member

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    Same here. I was mostly bedbound when I started Valcyte. I couldn't even read. I couldn't think straight. I couldn't stay upright more than a few minutes. I felt like crap 24/7 -- the whole set of major flu-like symptoms. My life was nothing -- laying around in bed staring out the window. Like Tristen, I'm not sure how much longer I could have tolerated that non-life.

    Now I work part-time at an easy job -- tutoring -- where I don't have to walk much and my employers understand and cope with my limitations. I'm not cured, by any means. I'm probably about a 5 on the PR activity level scale. But the difference between a 1 and a 5 is huge. I can drive. I can interact with other people. I can earn some money. I can do a little light housework. And a don't feel sick every minute of every day. I mostly feel fine. I have a life -- the life I didn't have prior to AVs and OI treatment.

    Why would I pass that up just because it's not a cure or even a remission?
     
  17. SOC

    SOC Senior Member

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    How, exactly, were you "objectively" diagnosed? Objectively means lab tests, not some physician's opinion. Which lab tests did you have that make you feel you were objectively diagnosed? NK cell function? CPET? Other immune abnormalities?

    How did those objective tests change after LP? Without evidence of change in objective measures -- relevant lab tests -- there is no objective evidence that LP had any effect whatsoever.

    "I did LP and my life has been transformed" is exactly subjective hearsay. There is nothing objective or factual about it.
     
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  18. Mij

    Mij Senior Member

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    @Dster your wrote: "This isn't hearsay and anecdote by the way, this is fact. The second person I have described before on this site, again what I am about to say is fact not anecdote. She is a colleague who I have worked closely with throughout her illness (extremely bad CFS/ME) for 5 years. Did the process and was cured, pretty much overnight"

    I just can't take you seriously.
     
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  19. A.B.

    A.B. Senior Member

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    After Dster's anecdotal cure had been questioned, it has now become indisputable fact:

    Multiple requests to see the abnormal lab results that normalized after LP are ignored, presumably because there never were any such abnormalities. Instead, his answer to my request becomes

    Shifting the discussion from a hard question to another topic.

    But dodging hard questions is not a balanced objective view.
     
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  20. ukxmrv

    ukxmrv Senior Member

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    It's a problem in the UK because most patients here don't have any lab tests that show any abnormalities. So when they get a often very poor diagnosis from one of the terrible CFS clinics here then they accept it and don't even know that there are tests being done on patients abroad showing abnormalities.

    Some of us pay for private testing and see doctors abroad for treatment or through Skype or the internet. Some have no private testing and go to Lightning Process courses or similar.

    The two groups don't tend to mix or overlap.

    So the people who do get a benefit from the LP don't have any tests that show abnormalities. We never know if they would have ever shown any.

    Why they don't have tests I never know. When I have directly asked people they say "I didn't know they existed" or "I thought that stress was causing my symptoms" etc.

    It would be simple for the sellers of the LP to find some people who do have tests and then offer them free courses and free testing after but they never bother to do this.
     
    Last edited: Jun 19, 2014
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