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Has anyone achieved remission or recovery from treatment by any doctor?

Discussion in 'ME/CFS Doctors' started by MeSci, Mar 3, 2015.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    This is a fundamental question, but I can't find a thread on it.

    I read of people recommending ME doctors, and people planning to see those renowned for treating ME, and people actually being treated by them.

    But has it actually WORKED for anyone? Is there anywhere where such successes are listed? Any statistics for individual ME doctors?
     
    chickpea, Pink, AlwaysTired and 19 others like this.
  2. CantThink

    CantThink Senior Member

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    Just parking myself here:D.... I'm super interested in this, as I want to know for the future (should I be in a position to travel and financially able to see one of the M.E. doctors). I don't think I'd bother if it would elicit no 'return' for the effort/money.
     
  3. anciendaze

    anciendaze Senior Member

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    This is a very good question. I might be able to travel, with someone else to take over if I become confused, and time at the destination to recover before I saw a doctor. I might also be able to pay for one such trip, if it would accomplish something. What I don't know is if this would improve my current situation, which I describe as a "holding pattern".
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It seems strange that I haven't seen a thread about this before. I worry that people are being told how wonderful various doctors are, and maybe they are spending a lot of money - and maybe going through a lot of unpleasant reactions - with unjustified expectations.
     
  5. Billt

    Billt Senior Member

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    Very good question. And I am sure some who have been on here will chime in. As for my son, we are going to see a ME/CFS dr next month. I would think if anyone gets better, then they may stop coming here and move on with there life. For me, if I can get my son better to be able to function,work, and have a life again ... that would be prayers answered.....
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    But some long-term members are describing their plans and their treatment, and probably many other long-term members have done too. I can't imagine that they would just disappear from a site where they participated so much, and to which they had a sense of belonging and loyalty, and come to care a lot about the other members and the issues. People tend to be very frank and open here, and I am sure many/most would report both successes and failures, as they sometimes do with various treatments.
     
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  7. xrunner

    xrunner Senior Member

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    There are small studies/presentations on drs' own patient populations.
    That I remember KdM has published some numbers regarding the use of Gcmaf


    Cheney also.
    http://mdwme.blogspot.it/2013/04/dr-paul-cheneys-latest-observations.html

    I forgot about Dr Nathan's and Rich SMP methylation study
    http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf

    But also Dr Lerner's longitudinal studies on treating chronic infections
    http://www.treatmentcenterforcfs.com/clinical_patient_study/index.html

    Those the ones I remember.

    In my own case, I started to improve only with treatments for which there was some, however small and imperfect, study backing up that treatment (i.e. abx for lyme cpn, gcmaf, smp).
     
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  8. Billt

    Billt Senior Member

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    Agreed... it was just a thought.. But you are right, there are many that have been on here a long time and they take there time and effort to help other which I am grateful for. Hope you get more response to your question...
     
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  9. Amaya2014

    Amaya2014 Senior Member

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    I'm not so sure about cures but I'm still new to CFS/ME/SEID...a year now. The IOM committee reiterated that they found nothing consistent in terms of treatment or a cure. We need the money for research and, hopefully, a cure. The biggest benefit for me was finally being validated, having a doctor say something other than maybe I was stressed, crazy, or most doctors favorite "your test are all normal". My understanding is that for now, medicine can only treat symptoms.
     
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  10. JayBO

    JayBO

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    Agreed, this question is important for many reasons. I'm new to this forum (though not new to the symptoms unfortunately) and after viewing thread after thread including every imaginable combination of vitamins, supplements, and treatments under the sun, I thought it would be great to hear about some success stories. Even just to know that someone, somewhere recovered somehow back to full activity, just to know that's its possible and to give others hope. I agree that when people feel better they are less likely to be on this forum and I hope they would be living life and making up for lost time, but it would be great to hear a success story or two...
     
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  11. Billt

    Billt Senior Member

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    +1
     
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  12. helen1

    helen1 Senior Member

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    There have been several threads on this forum about success stories, 3 or 4 threads that I recall, and people have responded about their own significant improvements or about people they know, so we know that there are people who have improved greatly (maybe a dozen people were cited or chimed in).

    The question of this thread is slightly different though as it's more about which doctors have the highest success rates with their treatments. I'm curious about that too.
     
    oceiv likes this.
  13. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

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    It is a fundamental question. I think that's the reason why many do not see any doctors, due to the absolute lack of reported success.

    I've yet to see or hear from anyone who actually "recovered" , whatever that means. Those who have reported "recovery" are the ones who had another medical issue altogether.
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I had a quick look at the first two links but they didn't report any recoveries or remissions as far as I could see. I don't have time to look at the videos but might do so if they reported recoveries or remissions. The last one doesn't look promising from your description.

    I'm not talking about improvement, but recovery or remission as a result of treatments by ME doctors. I have already read plenty about improvement, and have achieved some myself (without doctors), and have also read plenty of silly news stories claiming recovery with psychological methods or exercise. I don't want any of that here.
     
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  15. CantThink

    CantThink Senior Member

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    I think it depends how long the person has been ill, and if they had M.E. or were misdiagnosed (before recovery via treatment).

    Those of us who have been ill for over 15 or 20 years are unlikely to not tell the forum if treatment is successful to the point of full recovery. These are our people - often the only people who've stood by us for years! IMO it would be like abandoning your family because you became rich... Although I agree that if people recovered fully they'd be less likely to come here (often) as they'd be busy doing other things. I still think long term members/sufferers would at least share their success before they stopped coming here.

    At the moment there is no cure for M.E, so the way I understand it is: the best we can hope for is to deal with any co-existing health problems (infections, endocrine, gynae for women or symptoms like autonomic dysfunction etc) and hope for an increase in ability.. and stability.

    In that respect, I am always looking for success stories of achieving consistent recovery from these high profile M.E. doctors. Not just one person, but multiples. However, I have yet to see anyone who has actually achieved what I'd want.

    I know that various members have posted of successes when following different protocols, but these seem to be things they've experimented with... The problem with that IMO is that personally I can't afford to keep trying lots of different things - both from a financial point of view or an energy perspective. It's so much risk versus no guarantee. Maybe it's just me, but it feels like looking for the holy grail and I've grown completely tired of it.

    My ideal situation would be an M.E. doctor that had consistemt results, and could oversee treatment. Such a doctor would be able to suggest the most viable and likely to succeed treatment, based upon an individual's symptoms and test results. This would be less stabbing in the dark, and worth the risk and effort.
     
  16. maddietod

    maddietod Senior Member

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    Great, simple question. I haven't yet met anybody in person or on forums who has achieved this. There are some people who are enormously improved as long as they continue with medications. I've had that briefly, but had to stop the treatment.
     
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  17. Sushi

    Sushi Moderation Resource Albuquerque

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    I think you will find quite a lot of members who have improved under the care of their doctors, but for patients who are diagnosed under the CCC or ICC and have been sick for many years, I am not aware of remissions or "full recovery." I have improved, but am certainly not in remission nor have I recovered.

    This is all I hope for--at least in the very near future--small but incremental improvements.

    Sushi
     
  18. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    With whatever things doctors can do today, they can only improve the patient slightly.

    No remissions or recoveries are possible with any doctor treatments.

    If a treatment given by a doctor or by the patient himself causes improvements like a year later, it would be difficult to rule out spontaneous improvements.

    In my opinion, if a given treatment does not make a noticeable improvement in about 3 months or so, the credibility of that treatment (vs.spontaneous improvement) is very much in question.

    There are people who have recovered after a few years, and they attribute that to their own treatments, but here the recovery is spontaneous.

    The role of a doctor at this time is essentially acknowledging and diagnosing the illness, and provide treatments to improve conditions that are treatable, and disability support. ( and, in appropriate cases, physician assisted suicide).

    Specific diagnostic tests and treatments will only come from research for which funding is needed.

    I understand the fact that desperate patients run from pillar to post, from good physicians to fringe doctors, and spend lots of money. In such cases, however, there is more damage done to the body by the traveling itself, than any possible benefit that can be gained.
     
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  19. SOC

    SOC Senior Member

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    I've reported many times at PR my family's improvements (I don't buy there's a cure, yet).

    Here is the PR activity scale for reference:
    My uncle, who was about 7 on the PR activity scale, now gives every appearance of being cured. He is a very active 70-something -- dancing, playing softball, working part-time. He has no symptoms and currently takes no ME/CFS treatments. He did about 8 years of heavy-duty antivirals under an ME/CFS specialist.

    My daughter was somewhere between a 4 and a 5 on the PR activity scale and heading downhill rapidly when she first saw an ME/CFS specialist. Two years of antivirals (both Valcyte and Valtrex) put her into what might be called a remission. She lives a fairly normal life. She's just finishing graduate school in engineering, is getting married next summer, travels to Europe once or twice a year and does the usual tourist stuff including plenty of walking, has been on several day-hiking vacations. She has not had a PEM episode in several years. She does not try to do competitive sports or aerobic exercise for the sake of exercise, so I couldn't say if that would result in PEM. She still takes a large number of symptomatic treatments and takes antivirals more often than not. I'd say she varies between 8 and 9 on the PR activity scale. She is not cured, but lives a fairly normal life, which is huge.

    I was at a 1 on the PR activity scale when I first got antivirals from an ME/CFS specialist. That improved my condition to around 3 or 4 over the course of several years, but I was still largely housebound for another few years. I moved to another ME/CFS specialist with a broader range of treatments to see if we could tweak symptoms enough to get more functionality. Over the course of 2-3 more years we picked away at other symptoms and tried a number of additional treatments, none of which gave me the big improvement antivirals did, but each gave me another small increment of improvement. All those little increments continue to add up. Now I'm about a 7 on the PR activity scale. I work full-time at a physically easy job, and take care of myself and my house, but I can't do much else. For example, moving recently pushed me into a PEM episode (my first in more than 6 months), but it was milder than previous episodes and I recovered more quickly than previously (about 10 days).

    I continue to take a lot of treatments to maintain this level of functionality. This is definitely not cured or a remission. It's keeping up with activity management and a lot of symptomatic treatments to offset the symptoms of the illness. But being able to work full-time, socialize mildly, go grocery shopping without a cart/wheelchair, and so on, is FAR better than laying in bed, unable even to read, staring out the window.

    My family has benefited greatly from seeing top ME/CFS specialists. For me and my daughter, treatment from top ME/CFS specialists made the difference between having no life and something resembling normal life. It's not 100%. It requires a massive amount of determination to keep up with all the treatments. It did not happen over night. I cannot emphasize that last too much -- significant improvement did not happen over night. It took years to get where we are now. It's a long, hard haul to get significant improvement, but well worth it to have a large chunk of life back.
     
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  20. xrunner

    xrunner Senior Member

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    As far as I know there aren't any studies of that sort or they'd be all over the news.
    As others have already said, at present time we can only look (honestly and for those properly diagnosed in the first place) at incremental improvements or partial recoveries.

    Myself used to be around 1 on the PR scale and over four years got to around 5 but I feel pretty much stuck there.
    I have not been on any meds, treatments or supplements for a couple of years now but I haven't slid back either despite severe stress and quite challenging life situation. So all in all I feel quite happy.
    As SOC said, getting at least a portion of our life back it's always worth it and it makes a difference.
     
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