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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. Lou

    Lou Senior Member

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    Not to forget those that are actually getting worse, I'd have to agree there's a good percentage that have recovered to some extent. Those 80/90% recovered are probably long gone from here, however.

    I think a telling distinction is on what basis we make such claims of improvement. Is the improvement viewed from before falling ill or from the awful, lowest point of being sick? In my case, if I had to guess, probably function somewhere around 55/65 percent of pre-illness, but 99.99 better than at the worst.

    edit: I'm no good at correctly stating stats, probably that last data is more in the vernacular sense, maybe should have said 99 times better than at the worst of it. Yeah, it was pretty bad.
  2. minkeygirl

    minkeygirl Senior Member

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    And I'm saying after 19 yrs of being sick, multiple forums I don't know anyone who was cured any percent.

    The best I've heard is that some were in remission for awhile but then relapsed.
    TigerLilea, Tito and Valentijn like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think we are wandering around the original topic a bit--as is natural--both with the many questions the topic raises, and with our own "wandery" brains, but just to add a positive note commenting on minkeygirl's post above:

    I have seen a lot of people who have improved, even after being sick for years. (They were all getting fairly aggressive treatment) I haven't personally seen anyone who is completely well--more in the category of back to work or school but not at full speed and needing to continue maintenance treatments.

    Best,
    Sushi
    Sing, beaker, Thomas and 5 others like this.
  4. leokitten

    leokitten Senior Member

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    There are two reasons why many people cannot do this including myself. But I see your point resting and removing excessive stress does have a very positive impact on this disease.

    1) I have to work full time to have medical insurance which covers most if not all the costs of going to doctors, tests, treatments, drugs, etc. More importantly I need to work to pay my bills and to have a place to live and to eat so I'm not homeless on the street :)

    I love my job and career and even though it can be stressful and hard many days to perform at my best with this disease I wouldn't have it any other way because it makes me happy to do my job, get out of the house, have a schedule, and not just sit around all day doing nothing.

    2) For me at least it gets very depressing to just sit around the house and rest all the time and not do much, it seems that doing nothing has a more negative effect on the disease. At least for me, doing too little is just as bad as doing too much, it's about finding the right amount for you. Also resting too much for me seems to be just as bad as resting too little.
  5. Creekee

    Creekee Senior Member

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    Hi Leokitten, and welcome. You've caused quite a stir. Obviously, as a group, we're a bit of a battered bunch. Hopefully, you will stick with us as we can always use another sharp thinker. Meanwhile, happy to have you aboard and looking forward to more interesting posts from you!
    Michyroo7, Sing, Sushi and 1 other person like this.
  6. peggy-sue

    peggy-sue

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    It does gets *'#@@;7 depressing and boring sitting/lying around doing nothing, yes.:devil::devil::devil:

    I hate it.

    I was very, very active, and a very busy person before I got ill.
    I don't DO passive. It drives me nuts.

    But it's the only way I can sometimes do something nice, or get the shopping or laundry done, or get washed.

    It doesn't cost anything, (apart from loss of earnings - but I can't work anyway).

    It is still your best chance of full recovery. I wish I was still in a position to be able to do it.

    6 months' bed rest would have been infinitely superior to loosing the last 11 years - and knowing I won't get any better.

    (but, still hoping.)

    I didn't really think you'd consider it. :p I am teasing you a little bit here, please, don't take it badly!
    It is the last thing anybody wants to hear, but I thought you should hear it anyway.

    Do not cross it off your list. You do still have time and youth on your side.
  7. leokitten

    leokitten Senior Member

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    Sorry I want to add something that maybe missed... based on how well I've responded to resting properly and minimizing stress peggy sue you really have a good point, if it were possible for one to really relax, take things much more easily and slowly, have zero stress, and rest how much as they need to for 6 months or more I think it would have a good chance of ending in a successful recovery if done early on in the disease. I wish I could
    justy and Delia like this.
  8. peggy-sue

    peggy-sue

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    That's why I find it so useful to call it "positive inaction".
    It reminds me that "doing nothing" is actively DOING something good.:thumbsup:
    It makes it a little bit easier to bear.;)
    Delia likes this.
  9. Delia

    Delia Senior Member

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    Hi LeoKitten,

    One reason why I tried to welcome you, and explain why your post stung, was because I did a very similar thing my first time out.


    My doctor had just put me on something that really really worked! After several months I was so excited I wrote in (on my first account name) and told people about it in case it might work for someone else.

    That's it. That's all. I did not say it was a cure. I did not say everyone could be helped by it, just that I searched and searched and saw no threads on it here or elsewhere!

    Boy did I get it bad! I no longer participated here. Though I used it for a reference sometimes.

    And then the last two years I've been too sick to lurk on forums. (1.5 of those years I went off that RX because it was too expensive anymore)
    Plus other bad stuff worsened my health)

    No one ever explained why they went off on me like that.


    Other forums have been the same. Not just that issue, but really difficult. Not just to me, they do it to others too.

    So, all I can offer is a link to this Kelvin Lord article, and let you know that for many of us the harsh reactions are coming from a part of our illness, how it affects our brains and use his apology letter at the bottom to let you know I'm sorry. You got hit with a big old stick of it.

    http://phoenixrising.me/archives/11858

    I mean, yes, there's a valid reason why we reacted to the post that many people tried to explain. But the swift harshness comes from the overwhelming nature of when we get upset, many if our right brains go into left brain mode.


    The only thing I could think of was that people might have thought I was working for one company that makes that drug, or I don't know. But it felt awful to be treated that way when the whole world was treating me like shit for being sick, and treating me like shit for what my illness was.

    So to get treated like that from the people who would be my peers on this, was extremely hard.

    I hope you will stay. And get to know the forum better.

    Be careful about generalizing about "us"in posts because we're all different, or telling us what we should be doing. Because Believe me, we've been trying.

    Block someone if they are always mean or always misunderstand what you say...




    EMilo likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think alot of people that recover or improve greatly just move on, some people just find talking about cfs depressing and also move away from forums. For me i was just sucking all the info out of these forums i could, researching, experimenting etc etc until i found what works for me. Im probably an 8 out of 10 after being a lowly 3:ill: but im greedy and want to get back to 10 and be normal. I also dont mind sharing my experiences and people can take what info they want from that or add to it. Maybe because im in the health care industry, theres apart of me that wants to try and help others. I dont think i have the answers but i have done alot to improve myself. I still have good and bad days even good and bad months.

    I think there is a group of cfsers who can selfresolve if they have been ill for less than 3-5 years and done the right things such as pacing themselves and resting alot but its also not the answer for everyone in the beginning either. Sometimes it does sound like a pissing competition when one says i have been sick for so many years but sometimes people mean that they have seen certain theories come and go.

    I also think to myself what could i have done differently when i was first sick. I could have paced and rested alot better then i did instead of push myself. If doctors were switched on to cfs/me and viral infections i could have had antivirals when i first came down with chickenpox, maybe that could have made a big difference or when i got mono from cmv or ebv????

    We are all speculating but i think there are alot of gold nuggets amongst us as many of us have found treatments that have helped, its not a placebo controlled study just personal experience. All we can do is try things and if they dont work, throw them away and if they do help then keep them, then move on and try the next thing. Over time many of us have a group of treatments we find helpful that we have kept. A list of all these nuggets would be interesting, not just supps and meds but also life style changes etc etc

    We can all learn from each other but we have to remember that we are all different and react differently to treatments as well. :thumbsup:
    Tristen, beaker, bigmama2 and 8 others like this.
  11. SOC

    SOC Moderator and Senior Member

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    In my family we have had 3 clearly defined, diagnosed by an ME/CFS specialist, cases of ME/CFS. While our symptoms and treatments were generally similar -- flu-like, with herpesviruses, no GI problems -- our paths to recovery (or not) have been different.

    1) My uncle, in his late 60s-early 70's during treatment, had what I would call a mild case of ME/CFS. It sounds like yours, leokitten. He could continue to work, but could do nothing else. He was about a 7 or 8 out of 10 on most ME/CFS scales. After many years on antivirals, which changed as new ones become available, he now appears to be fully recovered, although now retired. He takes no meds to treat symptoms and is a very active late 70 yo.

    2) My daughter, 12 yo at the time of our common infection, but had mild symptoms and was in and out of (apparent) remission until at 17yo she crashed into continuous illness. By the time she got antivirals, she had been continuously ill for 1 year and was within a gnat's eyebrow of having to drop out of engineering college.

    She managed to stay in college by living at home, napping long hours (including in her car between classes), and doing nothing else -- no social activities, no other work or research other than classes. I would call her mild/moderate -- moderate at her worst. She could not have continued to "work" as a college student without the tons of daily functioning support she got, mostly from her dad. She was rated a 5 or 6 out of 10 on an ME/CFS functionality scale. She was not house- or bedbound, even at her worst, but definitely impaired and very sick.

    Almost 2 years on Valcyte gave her a huge improvement in her condition. She finished college (and got into graduate school), lived in an apartment on campus, and had a satisfying social life. She has traveled quite a bit and is physically active to the point of taking multiple week-long dayhiking trips. She does not appear to have PEM.

    Is she recovered? I'd say no. She's fully functional, not obviously limited by her illness. She still has to take prophylactic antivirals because her immune system does not keep herpesviruses suppressed. She also needs treatment for sleep, hypothyroid, and low blood volume. She still has immune abnormalities.

    3) I got sick at the same time as my daughter with the same flu-like illness. I have not been well since. I flailed around (not being a medical research person) trying to find a doctor willing to help. For 4 years I didn't even find a doctor who believed me, much less one knowledgeable enough to diagnose or treat me.

    By the time I got antivirals, I had been sick for 6 years. I was bedbound at that point. My cognitive symptoms were so bad that I couldn't read. I couldn't remain upright for more than an hour or two. I had flu-like symptoms constantly. I was about a 3 out of 10 in terms of functionality.

    I got antivirals at the same time as my daughter. While I improved tremendously on them -- from bedbound, to housebound, to working an easy part-time job for a sympathetic employer tutoring math and science for her kids -- I am far from recovered. Although I get around in my house just fine now, I still need a wheelchair for longer (100+ yards) movement or I get PEM. I have multiple immune abnormalities and take symptomatic treatments for sleep, hypothyroid, low blood volume, and more.

    I no longer expect to return to work as a research engineer or college professor. I'm glad (but not satisfied) to not be bedbound and incapable of caring for myself and to be working, even part-time at a job far below my qualifications.

    We are generally considered to be "success" stories in ME/CFS. Treatment has tremendously improved quality of life for all of us, but altogether I would not consider us "recovered".

    My uncle, who had the best outcome, was never very sick to begin with -- by ME/CFS standards, that is. I suspect that was one reason for his success with treatment.

    My daughter was young and only a year into being continuously ill when she started antivirals. She was only moderately ill (by ME/CFS standards). I attribute her return to full functionality to her youth and relatively quick aggressive treatment. Full functionality is NOT recovery, however.

    Me, I was sick longer, and was more severely ill. I hope for more improvement, but I no longer expect a return to full functionality. I suspect that recovery is not possible for those of us who were severely ill and/or ill for more than 5 years or so.

    I don't believe that substantial numbers of PWME have recovered to 80-100% of their pre-illness condition. I haven't seen any evidence supporting that theory. All I have to do is look around PR, or talk to the several specialists I've seen to find plenty of people who have NOT recovered.

    The "recovery" cases I have heard about were either people who were mildly affected (as in still able to work), or young and got aggressive treatment very early. Dr Bell discovered that many of his patients who were thought to be recovered were still impaired, but had adjusted their lifestyles to accommodate those impairments. While no doubt those people were quite functional compared to many PWME, it is not at all clear that they were near 100%.

    My personal theory is that if PWME are treated early and aggressively with antivirals, abx and immune modulators, many would achieve something approaching full functionality. But that's my personal theory with minimal scientific evidence to support it -- yet. The tragic reality is that the VAST majority of us do not get treated early or aggressively and end up permanently impaired to greater and lesser degrees. :(
    Sing, bigmama2, xchocoholic and 6 others like this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It may have been a response to someone else’s comment, but I do not think I took it completely out of context. Those two quotes capture what seems to me to be your general tenor in the context of this thread - that we should all be diligently reading the available information, getting every test available, and immediately treating everything that is found, like you. Many of us lack both the financial and intellectual where-with-all.

    Those of us who are more ill (and older) would probably not tolerate such aggressive treatment.
    Lou likes this.
  13. leokitten

    leokitten Senior Member

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    I totally agree, this is very much what I also wrote and believe based on what I have learned from CFS doctors, specialists and the literature I've read. Get as much data/information (labs, exams, etc.) on your particular disease and treat it aggressively and as quickly as possible.
  14. leokitten

    leokitten Senior Member

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    I really apologize, when I think again about the intended audience I was writing to with the original posts I think I should have been more clear.

    Take the situation I am in and who, without really thinking, I was trying to help. I am newly diagnosed and had the sudden onset illness 9 months ago and since then have been going crazy with doctors, tests, research, web resources, forums, and the insane amount of work it took me to get to this point and I wanted to help those who are in my similar situation (newly sick) or will be and will read these threads.

    Those who have been sick a very long time and have tried everything, those who do not have medical insurance or for some other reason cannot see doctors and get tests done, etc, the message was not intended for these groups and maybe that wasn't clear but I thought it was implied.

    Based on what I know so far from CFS doctors, researchers, and the literature I don't currently have any theories on how to help these groups of people, I'm sorry. If you cannot get tests done, cannot get medication or supplements I have no idea what you can do.

    But what I do believe like others have stated and I've written in the original post, if you are fairly newly sick and have access to healthcare you should see I CFS specialist right away and get as many tests done as possible (I can list them all if people want) to get some clue of what is going on and then to treat everything aggressively and quickly.
    beaker, bigmama2, justy and 2 others like this.
  15. catly

    catly

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    Hi Leokitten,

    As someone new to CFS with initial onset 2/2012, started treatment 5/2013, I am grateful to any assistance you can provide as far as interpretation of the scientific literature around this disease. I look forward to reading your posts.

    Regarding the following:




    I think we may be seeing the same CFS specialists so I hope I've got everything covered test wise but I'd be interested in seeing your list of must haves.
  16. peggy-sue

    peggy-sue

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    ;)

    as long as it isn't something as drastic and completely unpalatable as Aggressive Rest Therapy... ?

    (don't take that badly, leokitten - I've quite "taken" to you and hope you will stay and continue contributing.

    My wee brother did his post-doc in the Cancer research bit in Bethesda, Maryland, Washington - but perhaps before your time.)
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Keep in mind that you are dealing with a bunch of brain-fogged people who don’t always do implied. Some days we barely do hit over the head with a brick. ;)

    I quite agree with the desirability of early diagnosis and treatment.

    With what have you been diagnosed? Early diagnoses should shed light on the cause(s) of this disease.
    SOC and Valentijn like this.
  18. rosie26

    rosie26 Senior Member

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    It would be good if you could list the tests leokitten thanks. x
  19. leokitten

    leokitten Senior Member

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    I will write up the list of tests this weekend for everyone, sorry I work and and rest after work as much as possible.
    SOC likes this.
  20. leokitten

    leokitten Senior Member

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    I've was diagnosed with CFIDS in September. Is this what you were asking, sorry maybe I don't understand "with what have you been diagnosed"

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