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A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. Hope123

    Hope123 Senior Member

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    To the original poster, haven't gone through all the posts but a few thoughts:

    First, realize that there are others on this forum with scientific/ medical/ statistical backgrounds. Sure, there are things I see on the forum that are incorrect/ questionable but frankly, you have to decide where you want to put your energy.

    Secondly, as someone with a clinical background, I've found that there are lots of questions and situations within and without CFS that haven't been study, haven't been studied well, or are not able to be studied for logistical/ monetary/ or ethical reasons. In those cases, clinicians and patients often have to make decisions with imperfect evidence. In addition, there's something to be said for figuring out when people are receptive to information or not. You might be right but if the people you're giving the information to don't feel ready to accept it or change what they're doing, you just end up in an argument with them.In my life, if you were not my patient and you did not ask me for my honest opinion, I won't speak up about your treatment.

    Third, if you're interested, there is a professional group of clinicians and scientists dedicated to solving ME/CFS. You can find out more and join by checking out the website; there is a scientific meeting that professionals, patients, and family members can attend next March in San Francisco.
    http://www.iacfsme.org/
    Sing, beaker, heapsreal and 5 others like this.
  2. leokitten

    leokitten Senior Member

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    Hi everyone,

    Ok I've read the rest of the thread replies...

    Everyone look, this has made me quite sad :-(, I'm a really nice person and all of this has been so completely exaggerated and I don't know how it got to this, I apologize deeply if it were my fault how am I supposed to know being so new that people would react so badly and defensively.

    I just joined this forum and this was my second post after my introduction and story. As you might have read there I had gradual symptoms building over the years that affected me more and more (but ignored and thought were just due to aging) but was still quite normal and then this past January a sudden flu and severe illness falling into total CFIDS. It has been absolute hell since then my life has turned totally upside down. I'm a relatively young guy in his 30s and was a energetic, social and happy person before, an athlete and never had to struggle at all at work because I love my career in science and my job. As you all know I don't have to tell you what we have to deal with every day now, it's total hell. I'm fighting it with every ounce of energy I have left, because of the symptoms and lack of energy I've literally had to cut out all of my life except for my work and job, researching this disease and how to recover, and doing my treatments with lots of rest.

    First I have to say something, and in absolutely no way to be negative please! But many times in this thread people are misunderstanding/misinterpreting what I wrote, or are taking things completely out of context, or even just putting in things that I never said or even implied at all. It is very difficult to have a meaningful and constructive conversation/discussion when this happens and I can't sit there and spend so much time to answer all those replies which are misunderstood or taken out of context.

    People need to keep in mind that maybe, just maybe, they aren't understanding what the writer intended and it's best to be constructive and positive and ask for clarification or some questions before deciding that they know what I meant. We all know in text (by phone, email, post, etc.) people can read differently than they actually mean if you were to see them and talk to them.

    Second, no one should be dismissive of others with this disease because we haven't had it as long or it isn't as bad as theirs. This isn't a competition, in fact, all of those who've had this disease for a long time or have it very badly should be glad that others don't have it as bad or have caught it early or have a different version of the disease.

    There were many particular questions asked to me in replies which I've read and do have answers/responses to that are meaningful and helpful. But I am afraid now that if I don't spend so much time (which I don't have) to carefully craft responses and carefully choose every single word so that there can be little misunderstanding that I will just get railed again. I prefer to say nothing. If you have a particular question that you asked that you want me to give my thoughts on from my perspective write me a private message.

    Please everyone please make this a positive place, as a scientist and researcher I feel I can contribute my part and be helpful just as many of your posts have helped me during my research to help myself these months before I joined the forum.
    EMilo, Dainty, Sing and 15 others like this.
  3. leokitten

    leokitten Senior Member

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    You have taken what I wrote completely out of context. It was in response to someone else's comment.
  4. leokitten

    leokitten Senior Member

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    It is not 100% speculative. Yes there isn't definitive scientific proof of this with a large epidemiological study but based on CFS doctor's and researcher's clinical experience treating so many patients and the anecdotal evidence that comes with it most if not all of them have said that the longer a person has had this disease the more damage it seems to do and on average more and more dysregulation of the body happens. Therefore they say the road to recovery is more difficult, takes longer, and has lower chances of success.

    I know it sounds disheartening but I have not seen anyone say anything different from this. I've talked to a lot of CFS doctors and a few CFS researchers here at NIH where I work in addition to all the research papers I've literature available online that I've read.
    justy and aimossy like this.
  5. vamah

    vamah Senior Member

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    I completely understand what you are saying. I just hope you understand that the reason why people overreact or feel defensive is usually from years of being not listened to, told they are hypochondriacs or drug seekers, getting wrong diagnoses, being condescended to by arrogant doctors, etc. It kind of becomes a reflex for self preservation. I feel myself getting defensive and argumentative every time I walk into a doctor office -- even before the doc has said anything. I think a lot of us have a kind of PTSD from years of dealing with this sort of thing. So I hope you can cut a little slack when that happens and remember that they can't read your mind any more than you can read theirs. Sadly, we tend to assume that our views are being attacked because they so often are.
    Sing, beaker, justy and 8 others like this.
  6. leokitten

    leokitten Senior Member

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    There are many people that have fully recovered or recovered 80-90%, others on this forum have showed me and on other forums as well. And again here is an example where what I wrote is misinterpreted and totally exaggerated, where did I say that "everyone else is putting out misinformation" that is totally different than "there is a lot of misinformation out there". See the difference? I didn't say what you said not even close.
  7. Valentijn

    Valentijn Activity Level: 3

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    Maybe it's best to start with a "hi there" instead of something which sounds like "a lot of people here don't know what they're talking about".

    I'm not even sure what the purpose is of saying something generally offensive, instead of just directly discussing the incorrect information. It seems rather pointless, in addition to being offensive.
    valentinelynx likes this.
  8. Kina

    Kina Moderation Team Lead

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    How about we just stick to talking about misinformation and bad advice. Specific examples would be nice. :)
  9. leokitten

    leokitten Senior Member

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    I think those people who just get better with some time technically don't have ME/CFIDS? Dr. Montoya showed a great graph in one of his talks on CFIDS here www.youtube.com/watch?v=Riybtt6SChU start at time 0:14:00

    He showed a study where people got an acute infection which caused sudden symptoms and how over the course of a year approx. 90% got improved slowly over time until they fully recovered. The rest for some reason did not ever recover and these people were then diagnosed with actual CFIDS.

    Whether to treat or not to treat can be said about many diseases, and since there is so little definitive scientific proof about what to do you have to take into account CFS doctor's experience and people's testimonials to decide what to do. Based on the doctors and researchers I've talked to all the research I've read I believe the risk of treatment totally outweighs the risk of doing nothing.

    To do a clinical trial of a multi-faceted approach with multiple treatments would be difficult if not near impossible. I base this idea on what many CFS doctors have said from their own wealth of clinical (anecdotal) experience with patients and based on current theories about the disease that its not just one single thing that has gone wrong with your body, there are quite a few and if they are true then trying to fix only one won't work
    aimossy likes this.
  10. leokitten

    leokitten Senior Member

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    I did the "hi there" in my original story and post. And again here there is a complete exaggeration and negative misinterpretation of what I wrote

    "a lot of people here don't know what they're talking about"

    IS NOT

    "there is a lot of misinformation out there"

    IT IS NOT so please stop doing that!
  11. leokitten

    leokitten Senior Member

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    I told people earlier in this thread it would take a lot of work to re-find all the incorrect posting that I've seen over the months. I said I would do it from now on if I read something and would nicely write something back how it's not true if it is clearly a mistake. Sorry that I don't have the time to find every bad post i didn't think I was on trial.
    beaker, justy, Countrygirl and 2 others like this.
  12. leokitten

    leokitten Senior Member

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    I would like to express another intention I had when making this original post, other than to tell other new CFIDS people like me to just beware of what you read.

    As you all know since so much of this disease is not understood and there are a lot of theories, ideas, treatment approaches etc, being a person who recently fell into this disease full on and have been desperately trying to acquire accurate, actionable information.

    Every time when someone posted incorrect information on the web I would spend all this time researching to find out why the said do this or do that or this worked or this is better than this or whatever, and would eventually discover that either they were completely wrong because they didn't understand something properly or that there was no evidence to back up what they said.

    Anyway I had to waste so much time so many times during these months tracking down things people have said to figure out what was good information and bad. I guess part of my post intention was to give other new and naive CFIDS sufferers like me a word of warning that there are people saying things on the web with a lot of confidence like they totally understand what they are writing and know that its true but after doing the research it just doesn't make sense and I had to waste a lot of valuable time.

    It might be different for other sufferers than me, but on how I've felt and based on the CFS doctors and researchers I've talked to and all the research I've read that the clock is ticking with this disease. Over these initial months things just had been steadily getting worse and worse and I felt that I need to do as much as possible as quickly as possible while I still have the mind and energy before it's too late and too much damage has been done. I didn't want to waste any time I hope people can understand that.
    TigerLilea, Sing, justy and 6 others like this.
  13. Lou

    Lou Senior Member

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    No, that is not the way I would put it. That my post followed yours was only coincidental.
    peggy-sue likes this.
  14. aimossy

    aimossy Senior Member

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    it seemed that way.thankyou Lou:)
  15. Snow Leopard

    Snow Leopard Senior Member

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    That's not actually the part of your post that I quoted.

    I am not sure about the level of damage, but I know it is more difficult to spontaneously recover as time passes. How do I know this? Because I have read all the papers on recovery and graphed the data (up to 20 years). But this is not the same thing as data on recovery after treatments.

    What I was trying to say as the scientific literature is not at all clear on what the possible causes are, nor what treatments, thus it is impossible to say what should be all treated at the same time and what effect (if any) that length of illness will have on rates of recovery or degree of recovery.

    If you want to encourage or conduct a long term clinical trial doing such, then be my guest. We definitely need more long term research focusing on true recovery.
    SOC, Delia and leokitten like this.
  16. vamah

    vamah Senior Member

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    This issue highlights the confusing and very personal treatment decisions we all must make. If we have some virus, do we want to just treat that to see is it is the key thing making us sick? Is there no point in taking expensive meds to treat a virus if our immune system sucks so bad that it will just come back and we need to treat immune issues at the same time? If a virus is wrecking havoc on our immune system will immune treatments not help at this point anyway? And on and on. There are plusses and minuses to both the "one thing at a time approach" and the "attack everything at once approach." Honestly, I go back and forth in my opinion. I don't think there is any one right answer.
    beaker, SOC, Delia and 2 others like this.
  17. leokitten

    leokitten Senior Member

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    I like this post a lot. I think someone earlier in this thread told me that they disagreed with my belief of attacking everything at once because their doctor said that they will not be able to find out what works. There are pros/cons to each but in my humble opinion based on what I have researched so far I believe the pros of attacking as much as possible if your body can handle it totally outweigh the cons.

    Scientifically you will never really know what ends up working and it probably is a fool's errand to try and figure that out because that would mean only taking one medication at a time and not changing anything else in your life during the treatment course and in CFIDS the treatment courses are typically long. Very difficult if not impossible and even still you don't know if you get better whether it was the medication or you simply improving because of something else or even just time.

    To me the risks of taking just one medication for a long time and it not working and you never figuring out whether it would've worked if you attacked more in parallel because it was never given the chance to work is just wasting valuable time.
  18. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I have ME with serious neurological and cognitive deficits. I'm lucky I can read at all so if I repeated something incorrectly because I forget it the second after I read it then you know nothing about ME.

    I don't know many or any people who have recovered. That is my experience. And now you say 80-90% recovery not fully. Which is it?
  19. leokitten

    leokitten Senior Member

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    I'll clarify, there are people who've recovered completely 100% and others who've recovered 80-90%, I've read about both. Others on this forum should chime in here to back me up because I'm sure they know or have read about people who have recovered.
  20. peggy-sue

    peggy-sue

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    leokitten, in your urgent need to fight and get on with doing while you have the energy... :alien:

    - have you not yet considered that the best thing to do is NOTHING?

    You have not reached the 3-year time-limit which seems to be at least multiple-y ancedote-ally universally accepted amongst ME communities as the time at which natural recovery is possible if you are young enough.

    (I'm sure if somebody trawled forums for anecdotal evidence it would stack up into something that somebody with the right qualifications could publish as "evidence based medicine". There is no difference qualititavely between that and some of the garbage that does "GET" published. ;) )

    Take to your bed for 6 months.
    Don't think,
    Don't research,
    Don't run,
    Don't walk,
    Don't do anything at all, but rest and let your body recover.

    I call resting "Positive Inaction".

    It reminds me that I am doing something good for myself.

    I know it's not what you want to hear. You are still taking the "normal" reaction to illness, which is to fight it.

    The fight you have with this disease is the fight against the urge to fight it.

    And you still have time to take this battle on, successfully. :thumbsup:

    (I'm sorry your thread went a bit awry.)
    EMilo, Dainty, justy and 3 others like this.

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