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How many times do I have to hear this?

Discussion in 'Lifestyle Management' started by Nielk, Dec 12, 2011.

  1. Nielk

    Nielk

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    Today, a high school classmate of mine who lives in a different country and haven't seen or heard from her for the past 30 years,
    wrote me an e-mail that she heard that I have CFS. She has a friend who USED TO have cfs but she GOT OUT OF IT by starting to walk,
    every day she walked more and more till she was walking for miles and doesn't suffer from CFS any longer. She gave me her contact # so that I can hear first hand how this miracle cure worked.

    This is about the fourth time that (well meaning) people have told me about others that were "cured' by graded excercise.

    How am I supposed to respond to this? If I say that this doesn't work for me, they will just think "oh yeah, she is lazy and doesn't want to put in the work - no wonder she is still sick".

    I am sure that she meant well but now I got myself all worked up and stressed. Why can't i just do the same thing? Did these people really have CFS to begin with? Seemingly, they did. Why does it work for some and for others it makes them crash?
     
  2. Nielk

    Nielk

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    What is it today?
    My sister-in-law just called me and told me that my problem is that I need to move around more! I should go out and excercise.
    I've had it.
     
  3. Dreambirdie

    Dreambirdie work in progress

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    Arrrrggghh! Very annoying when people don't get it.

    If I was you, Nielk, I would tell her you *really* appreciate her interest in ME/CFS, and that you would very much like her to educate herself some more about it. With that I would email her a page full of links to research articles, videos, and intelligent blog posts about ME/CFS, and ask her to please read them, and get back to you when she is finished.

    Here's the top 12 on my list:

    VIDEOS
    Laurel's 2009 CFSAC Testimony http://www.youtube.com/watch?v=LvweCk44WHs
    Leonard Jason on ME/CFS Alert http://www.youtube.com/watch?v=9VCQPFopbWs&feature=related
    Robert Miller on ME/CFS Alert http://www.youtube.com/watch?v=-pyEvoLc1n8&feature=related
    Mindy Kitei's CFSAS testimony http://www.youtube.com/watch?v=qphC-G2DP3s
    Dr Kenneth Friedman's NIH testimony http://www.youtube.com/watch?v=KhB-701-BMU\

    RESEARCH ARTICLES and BLOGS
    CFS and The CDC A LONg TAngled Tale http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
    The MEICC http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
    Abnormal Proteins In Spinal Fluid of CFS PAtients http://www.umdnj.edu/cgi-bin/cgiwra...rom Chronic Fatigue Syndrome&month=02&year=11
    Brain Abnormalities In ME http://bjr.birjournals.org/content/early/2011/11/29/bjr.93889091.abstract
    Norwegian Rituximab Study http://translate.google.com/transla...reakthrough-can-solve-cfsmystery-3615631.html

    Anonymous #3 CFSAC Testimony http://cfspatientadvocate.blogspot.com/2011/05/anonymous-3-cfsac-testimony.html
    Peggy Munson http://www.hercircleezine.com/2011/08/10/when-words-fail/
    Laura Hillenbrand on her life with CFS http://forums.phoenixrising.me/showthread.php?12992-Laura-Hillenbrand-articles-on-ME-CFS

    Good luck!
     
  4. Nielk

    Nielk

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    Thank you DB,
    Very helpful. How did you dig this up so fast from your bag?
    I guess you must have used it yourself. I appreciate it.:)
     
  5. urbantravels

    urbantravels disjecta membra

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    I don't see much reason to believe that the people who report that they "got over" CFS by gradually ramping up exercise actually ever had true, ICC-defined ME.

    Some people, unfortunately, do self-diagnose with "CFS" just because they feel a level of fatigue that seems abnormal, and don't bother getting diagnosed by a doctor, because they truly believe that ALL "CFS" means is "fatigue that lasts a long time."

    Some doctors may misdiagnose "CFS" in patients who are fatigued for some other reason & who really don't fit the profile of having post-exertional malaise and the other characteristic symptoms of ME/CFS. Hopefully this is not too common, but I'm sure it happens.

    Fatigue is the commonest medical symptom in *existence*. Sometimes people get it for some reason that's never diagnosed, but that might self-resolve, or resolve for some other reason that the patient doesn't notice. Sometimes people feel fatigued because they don't exercise enough, and then graded exercise is the right thing to do. But I'd very, very carefully scrutinize the initial claim that the person had "CFS" in any other sense than "long term fatigue" - i.e. when were they diagnosed, what were ALL their symptoms, how severely were they impacted, how long were they sick before they started their exercise "cure", did they ever have any kind of testing like a tilt table test...etc.
     
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  6. alex3619

    alex3619 Senior Member

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    Hi Neilk, I think a big problem is misdiagnosis. Depression is sometimes diagnosed as CFS, particularly in the UK, but the real problem is post viral fatigue. Post viral fatigue resolves itself in less than five years, with maybe half the cases or more in under a year - I suspect more than half. So people exercise and while they are doing this it goes away ... therefore, they think, the exercise cured me. Its the whole problem with using fatigue as a defining symptom. Many people who had post viral fatigue recover at six months, and these people are often convinced that treatment X or treatment Y cured them. It never occurs to them that we have something else wrong with us, or that they were going to get better anyway.

    Another problem is nutrient deficiency. Some people might have undiagnosed issues that resolve with a change in diet, part of their health kick that includes graded exercise, but conventional "wisdom" tells them it was the exercise.

    There are probably many other reasons.

    I don't know what to say that is a tactful solution. I now plan to abandon tact in such situations, and tell them what I think, but that is too confrontational a strategy for most. Indeed, I was more tactful even several years ago, but I don't have time or energy to be tactful any more - straight to the point is better for me, and if someone doesn't like it I view that as their problem not mine. A catalyst for this was several decades of similar comments from my brother, who never gave up on this topic. Some time ago I told him straight that every time I have used this strategy I have got worse, it moved me from a mild condition in which I probably could handle part time work, to right on the border of medium and severe. It made me worse, it always has, and the medical literature on ME (time for a lecture on ME?) strongly shows that exercise exacerbates our health issues.

    Bye
    Alex
     
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  7. alex3619

    alex3619 Senior Member

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    Double post deleted.
     
  8. Dreambirdie

    Dreambirdie work in progress

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    I had them all bookmarked in folders. It took a while to put them all together, but now here/there they are.


    Yup, that's why I included the MEICC on my list.

    And there is also that movie by Kim Snyder called I REMEMBER ME--that might be a good thing education piece as well.
     
  9. Nielk

    Nielk

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    I also agree that misdiagnosis is a problem. By a problem, Im mean that they are thrown in with the rest of us and makes things really confusing.
    That's why a real biomarker to seperate real true ME from other fatiguing reasons is so crucial. It's crucial for studies and for treatments.
    I think the ME-ICC is a step in the right direction but even there, there is no testable biomarker.
    I find that some people just don't want to know the truth. Like don't mix me up with facts. They are set in their ways of thinking and there's not much
    one can do to change their mind.
    I have to come to terms with that. That's just the way it is right now. I feel strange saying to them, well your friend just had a post viral thing that was going to go away anyway but, I am severely ill. Some days. it takes all my energy just to go to the bathroom. Do they really believe me? I shouldn't really care so much.
    It's when it's family that think this way that really bothers me. My sister-in-law knew me way past when i got ill and she knows I'm a hard working conscientious person.
    Why would she think all of a sudden that I became a lazy bum. I think that deep inside she thinks that it is depression. I sould send her my testimony to the CFSAC except that she doesn't use a computer, Maybe I'll mail her a copy.
    Thanks for everyone's input:)
     
  10. Dreambirdie

    Dreambirdie work in progress

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    Personally, I don't associate anymore with anyone who doesn't believe me, especially if they are abusive about it. I had to cut my ties with several of my family members due to the hostility and anger they repeatedly dumped on me for being ill. I tolerated their nasty attitudes for a number of years and tried to convince them to understand and have some compassion, even though it was pretty clear that they had no intention of ever attempting to do that. One day I finally had enough. I cut contact with my abusive family members, and have not seen them since. It was a HUGE relief, one of the best things I ever did for myself. I have absolutely no regrets about it.

    Life is much too short, and my energy much too fragile, to entertain bad company.
     
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  11. Ember

    Ember Senior Member

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    Even when the diagnoses are accurate, there are still major differences among patients, as not all CFS patients have PENE (or PEM). Lenny Jason's recent study may be useful in explaining some of the confusion: The ME/CFS case definition criteria identified a subset of patients with more functional impairments and physical, mental, and cognitive problems than the subset not meeting these criteria. The ME subset had more functional impairments, and more severe physical and cognitive symptoms than the subset not meeting ME criteria. When applied to a population meeting the 1994 CFS case definition, both ME/CFS and ME criteria appear to select a more severe subset of patients (http://ehp.sagepub.com/content/early/2011/10/18/0163278711424281.abstract]).
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hmm, I read quite a bit on the CFIDS self help website, and they suggest incremental steps in "exercise". I reailize that you suffer from this really badly, but perhaps they also want you to not become very deconditioned and/or maintain a basic level of fitness, so that if you recover, you will not be behind as much?

    GG

    PS I have talked to a couple of Drs about exercise, and 1 said to do a little every day and the ohter was fine with doing much more on some days than others!
     
  13. Nielk

    Nielk

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    When I have better days, I do try to go out and walk a bit. It is all a matter of staying within your envelope. My envelope right now is postage stamp size. I'm the only one who knows how much my body can take at different times. My doctor says that I should do half of what I think I can. I have learned the hard way the damage that overdoing does to me. I have had times, since I'm ill when I was able to go out cycling for a bit. I'm at my worst now and if I do too much, which might mean just doing a light supermarket shopping, I am in terrible pain and it takes days pr weeks to get over it.
    I think I have explained this to my sister-in-law a number of times but, she believes she knows better what's good for me.
    She is not a good listenere and everything is about her, If for example I tell her I have a terrible headache, she'll say: "don't talk to me about headaches, last week I had such a bad headache, I was late for work."
    She has one brother and I'm the brother's wife. We have known each other for 37 years. Live in the same neighborhood. I have been ill for 9 years and she works for my GP's office. Both the GP and her don't believe that CFS is a REAL disease. They think it's depression and neither knows or care to know any of the recenr studies or developments about CFS.
    The last time I went to that GP, I asked him if he heard of XMRV being linked to CFS and he said no. Didn't ask what it was. He was like "don't mix me up with facts".
    They don't know and don't want to know.
     
  14. biophile

    biophile Places I'd rather be.

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    I have wrestled with the question, did people who recover with GET ever have ME/CFS in the first, is it ever possible for gentle exercise to somehow help "genuine" ME/CFS in some cases? I don't know for certain, but it sounds suspicious. CFS is poorly defined, effectively a wastebasket in practice, and often bandied around without medical diagnosis even in research. Therefore it is highly improbable that all these people have the same condition or illness characteristics, even if they meet a medical diagnosis for CFS.

    Meeting vague CFS criteria known to have sensitivity/specificity issues and then experiencing benefit from GET is not identical to having the same condition as those who meet CFS criteria but do not experience benefit from exercise and are instead worsened by it. Patients and advocates are accused of the "no true Scotsman" fallacy when stating those who recovered from GET (and CBT) never had "real" ME/CFS in the first place. However, unlike what haggis is to being born in Scotland, becoming worse after exercise has been argued to be a fundamental criterion for ME/CFS (although not a requirement for most CFS criteria).

    A counter-argument to that would be, post-exertional symptoms are just from deconditioning and/or chronic stress and/or even people reporting "PEM" still gain benefit from GET regardless. However, these models have never been proven, and descriptions of post-exertional symptoms differ enough to influence reported prevalence. For example, in the revised Canadian definition by Jason et al (http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf) it states: "Within a group of individuals diagnosed with CFS, Jason et al. (1999a) found that post-exertional fatigue or malaise for individuals with CFS ranged from 93.8-40.6% depending on how the question was asked. There is certainly a need to standardize the questions used to reduce this source of unreliability. In addition, length of the period of post-exertional malaise may vary from activity to activity or by time period within the person."

    Although post-exertional symptoms and being unable to experience benefit from GET are not necessarily the same either, judging from many patients' experiences (outside the stranglehold of proponents publications) it effectively is the same because the activity ceiling is absolutely real and cannot be evaded by GET, the piper has to be paid eventually. If you can evade your limitations with GET, perhaps you're recovering anyway or your illness does not have the same characteristics of others who can't maintain GET. I can see how exercise could be useful for regaining fitness levels during underlying recovery, but otherwise is useless and dangerous. As we see in GET studies using a control group eg attempting GET coincides with natural improvements, most of the PACE GET group who reported improvements and being "within normal range" (cough) would have done so anyway. I guess it is also possible for a grey area to exist where some mildly affected genuine patients have over-compensated to their symptoms and are operating far below their activity ceiling?

    Considering patients' negative experiences including my own, I did not fully understand how "scientific" GET studies usually reported to be "safe" without adverse effects despite the presumed increase in activity until I realised that increases in activity during such studies was not actually mandatory. There is no convincing evidence that patients are generally increasing their overall activity levels after GET, it is merely presumed that they are. This presumption when combined with rigid real world applications of GET is dangerous. Peter White claims that reports of adverse effects in GET from patient surveys is probably due to rigid forms of GET rather than fundamental problems with the approach of GET. The irony though is that White's supposed caution makes it possible for patients to report improvements after GET for reasons other than exercise and without actually increasing activity level.

    It is highly suspicious that the king of all GET trials the PACE Trial that White lead decided to drop the main objective outcome measurements of physical activity! Another issue is with how an adverse effect in defined. In the PACE Trial is was possible to become bedridden for up to 4 weeks due to GET and for this to be considered a non-significant impact on function! I bet the people who reported adverse effects from GET in patient surveys have a different idea of what can be described as an adverse effect.

    Anyway, in my own experience over many years, I have tried different approaches to exercise and GET but all failed no matter how careful I was, there is something fundamentally wrong about the approach for me. At first I figured this is just one person's experience so perhaps other people experienced benefits just like GET studies indicate. But over time it became more clear that so many other patients have the same problem as me and the research into GET is flawed. So I have gone from totally accepting the notion that GET can help, to, wondering whether it is some delusional fad pushed inappropriately on people with CCC-ME/CFS. The main "expert" proponents of GET are still making n00b mistakes after 20 years like assuming PEM is just normal delayed onset muscle soreness that healthy people experience, yet these n00bs are influencing world opinion on ME/CFS!

    The state of knowledge on ME/CFS is currently not much beyond the same stage Parkinson's disease was at when psychiatrists were proposing that the tremors were due to the struggle to control the overwhelming urge to masturbate. Maybe in the future there will be lab tests to help distinguish between those ME/CFS patients who are helped and those who are harmed by increasing activity levels. It would be interesting if "cannot be overcome by GET" were to become an official ME/CFS criterion.
     
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  15. Nielk

    Nielk

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    biophile,

    You bring up excellent points and it's like you took my brain and put it in writing!
    I too was very perplexed and still am to a certain extent as far as graded excercise being a usueful treatment for some.
    PEM and PENE are not your usual "chalry horse" feeling when "normal" people who are deconditioned excercise.
    For me PENE means that ALL my symptoms become dangerously severe. My flu like symptoms are much worse. My headache becomes unbearable.
    My sinuses become infected. I can't dleep even with my mediaction. I can't bear ANY sound around me. I don't think that "normal" people who are sedentary and overdo it one day, experience these feelings. When I am in that condition, you can put a gun to my face and I still will not be able to get out of bed. How would I have fared in the PACE study?
    I would have never entered it to begin with, knowing how dangerous it would be for me which makes me question; who were the patients who willingly participated in this study) How badly were they experiencing PEM or PENE and if not, did they have ME/CFS to begin with?
    Just reiterting what biophile just wrote.
     
  16. Dreambirdie

    Dreambirdie work in progress

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    Yikes! Your sister-in-law sounds like a narcissist. And your GP sounds like an ignorant jerk. I am not sure why you are willing to spend time with either of them...? I mean if you did a COST/BENEFIT ANALYSIS of what you get from these people vs. what they take away from you in terms of your precious energy and time, I would bet that they leave you in the RED in more ways than one.

    When people don't believe that my illness is REAL, I choose to stay away from them. It has definitely narrowed down the degree of social contact I have, but I can handle that better than being with people who dismiss and trivialize my illness, and have no consideration for my day to day suffering.

    When I first became ill, more than 30 years ago, I was much too tolerant of inconsiderate people. It took me a long time to learn to set clear boundaries for myself, and to become comfortable rejecting those who were not in my best interest to associate with. At this point I am quite adept at rejecting. The word "NO" has become a very good friend.
     
  17. anciendaze

    anciendaze Senior Member

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    I'll tell you a secret known by many clinical psychologists and psychiatrists: one reason so many treatments are considered successful is that the patients don't come back, they go to someone else. Druggists and hospital admissions nurses recognize that psychiatric treatment is like a revolving door. You can adjust your calendar, (though not set your watch,) based on when particular patients return to the system. Thoughtful people are well aware the system is broken.

    People will compensate for illness as long as they are able. My own doctor didn't realize how bad off I was until I had a seizure. I was pushing myself that day. It marked the watershed where I finally admitted there were conditions which will power could not overcome. Before you reach this point you may have had several clueless doctors convinced they have solved your problems. Most will never learn.

    As an example of how clueless, there was an exchange with a friend who told me "I run a mile each morning; after that I feel good all day."
     
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  18. Dreambirdie

    Dreambirdie work in progress

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    This is true of medical treatments in general, not just psychiatric treatment. Our medical system is not geared for CHRONIC illness, and most doctors dislike (understatement) patients whose diseases linger... which makes us malingerers in their eyes.


    Most don't want to learn. They'd rather spend the afternoon playing golf.
     
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  19. alex3619

    alex3619 Senior Member

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    How many of us don't go back to a doctor whose advice is useless? We don't go back because we have no benefit, they probably think their advice solved our issues. So I agree with the comments on this.

    This is part of the issue with no proper epidemiological studies having been done on CFS or ME, at least not long term. We need an ongoing study involving large numbers of patients to track this, and then make sure its well publicised. This would benefit everyone, but I can't see it happening in my lifetime.

    The other issue is that when many doctors find out the patient is not improving, they either blame the patient (presumed noncompliance) or refer them to a psychiatrist. Failure of their medical model is somehow never examined.

    Bye
    Alex
     
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  20. svetoslav80

    svetoslav80 Senior Member

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    Nielk, being a chronic fatigue sufferor (not CFS), I sometimes cycle 3 hours a day, of which at least 1 hour is hard cycling. Could you ask your friend if I should increase the speed or the time, in order to cure, cause I'm sick 4 years already.
     
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