Re: the latest CDC definition of CFS

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Mar 16, 2009.

  1. AuntTammie

    AuntTammie New Member

    Warning....I am on a pretty good rant here....and I am feeling quite foggy, so the results could be a bit interesting! : ) I usually re-read what I post, but I am too tried, so I am just going to go ahead and post anyway.

    The results of the conference that just took place, as well as the fact of the CDC's recent redefining of CFS are so discouraging. The new definition is for a completely different malady than ME or CFIDS. Of course they are able to tie it to mental illness, becasue their new definition leaves out all the real, physical pathways and all the symptoms that are unique to ME. They are somehow getting away with ignoring anything they don't want to hear. Any research that doesn't fit with their financially beneficial psychological definition just gets thrown out the door. The sheer amount of research that they are just flat out denying is nothing short of outrageous. Their thought process seems to go as follows...

    Research has proven mitochondrial malfunction? Let's pretend it hasn't.

    Research has proven genetic changes? Let's ignore those.

    Research has shown neurological changes after exercise? We'll just pretend that research doesn't exist.

    Research has shown all sorts of immunological dysfunctions, viral, and environmental contributors to the illness? Pretend it hasn't.

    Research has shown that CBT doesn't work and GET makes people worse? Ignore that and keep pushing harmful treatments on people.

    Research has shown central nervous system dysfunctions that are not attributable to depression? Ignore that.

    Many patients were very active prior to getting ME, and many continued to try to push through their fatigue until they got so sick that was no longer possible. This completely contradicts the theory that ME patients are just out of shape and resistant to exercise? Ignore that, too. Keep saying that they are lazy and using this illness to avoid having to work and have real responsibilities. They just want to have an easy, fun life. (Oh yeah, and ignore the fact that most of them are not sitting back and having fun with their lives now that they got out of all their responsibilities, too, but are instead grieving the loss of their formerly fulfilling lives becasue they are unable to do much of anything.)

    I could keep going, but I will stop after bringing up the really big one. Research has proven quite conclusively that there are big differences between ME and depression? What can they do about that one? Oh yeah, don't just ignore research on that one. Effectively ignore the entire illness by changing the definition of it. As far as they're concerned, ME, with all its very real symptoms, no longer exists. They have replaced it with a mental illness they have conveniently given the name CFS. The sad thing is that people believe them when they try to discredit us this way.

    It's almost as bad as if they were to take something like a heart attack due to a blockage and redefine it to leave out the fact of the heart stopping and ignore the blockage. Then they could say that the chest pain, nausea, and shortness of breath were due to stress and a certain personality type, and redefine it as a mental illness, too. They could push CBT and exercise on the patient without doing anything to fix the blockage, and in the process the patient would get worse. They could then say that it is just that he/she is out of shape and resistant to exercise.

    I know that sounds crazy, but you could actually apply this logic to most proven physical illnesses out there if you leave out enough symptoms and ignore the research showing the physical causes. For many, many other illnesses you could find enough to tie the remaining symptoms to some form of mental illness, stress, depression, etc. becasue there are certain symptoms that apply to most illnesses to some degree or another, and they don't have real clear physical pathways. For that matter, most illnesses can cause some emotional symptoms, simply because being sick sucks, and most illnesses can also be exacerbated by stress. Yet they don't say that stress induced heart attacks are simply in the patients' heads and they don't say that about a lot of other illnesses where stress is a contributing factor.

    What's really crazy about all this is that they don't seem to understand why we are fighting them so much. Most of us are really bothered becasue they are preventing people from finding real treatments by continuing to push their erroneous psychological model. If we were really just creating this illness to get out of doing things, becasue we were depressed or unmotivated, like so many want to say, then you would think we would embrace the lack of effective treatments because they would enable us to continue on with our lazy lives. However, the opposite is true. I think most of us are so desperate for a cure, we would almost be happy to find out it was in our heads. Then we could actually have a chance of getting better. Even people with very serious mental illnesses have better chances of having normal lives than we do.
  2. simonedb

    simonedb Member

    hey aunttammie
    where did u read this?
    what do u think is at bottom of it, the fact they bungled it from the beginning?
    what to do?
    i find that i prefer to tell people i have fibromyalgia instead of cfs even though i relate more to cfs, due to the misunderstandings about what it is.
  3. TeaBisqit

    TeaBisqit Member

    It's like the friend of my mother's, who after my mother passed away, said to me, "I thought you would be out livin it up now that you are free." And I was like, excuse me, but the disease did not miraculously go away just because my mother passed away. This idiot had it in her head that my mother had been Munchausening me. It was a rotten thing to say to me to begin with, but it's the same attitude. This woman still doesn't get it that I'm really very sick.

    I don't know what to do anymore to fight. I don't think I have fight left in me. Not much. After eighteen years of this disease and losing everything in my life that has ever meant anything to me, my will to live really isn't there very much anymore.

    What life do we have? Those of us that are housebound with this or the ones that are bedbound, what life do we have? I struggle so much each day just to do a few things I have to do to live. Many days, I can't even get my mail, and all I have to do to get it is to get in the elevator and go to the lobby. Can't do it much. I have to get dressed for that and the light and sound and even trying to walk to the elevator are usually impossible for me. Foodshopping flares me up badly, and I'm not sure how much longer I can do it. I only leave my home twice a month to foodshop and if I have an odd errand to do like taking the car in to be inspected. Otherwise, I'm home. Doing laundry almost kills me and puts me down a few days. That's the extent of my happy life. I do the few things I have to do, then I pay for them in spades in pain and suffering. I can't socialize. I nearly die if I try it. I can't go on vacations or travel. There is NO happiness in my life. There is only pain, stiffness, and suffering. There are people missing limbs who have more of a life than me. There are people in wheelchairs with full lives. There are people with cancer with fuller lives than me. They all seem to have the energy to still have a life. I don't think there is any disease or disability that is more disabling than this. Well, maybe a rare few, but for the most part, this is the most disabling thing I've ever seen.

    I don't know why they are getting away with ignoring the fact that we are PHYSICALLY ill, not mentally ill. We need real medical treatments. We need a cure or a treatment that will give us even half our lives back. When do we get our day in the sun again???
  4. heapsreal

    heapsreal New Member

  5. outofstep

    outofstep Member

    There is an article disputing the CDCs new "definition" on here that may make you feel better if you haven't seen it yet- it's under "latest health news" called "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition – Source: Journal of Disability Policy Studies Online Oct 2008". Apparently the NIH is rejecting the definition as well, but I can't remember where I read that.

    Another really infuriating aspect is that CFS researchers waste their time and money refuting things like this-I wonder sometimes if people like Reeves are doing it on purpose in order to divert funds away from the research necessary to find the real cause of CFS.

    Reeves has been rewarded with a professorship at Emory, and may be getting paid off by drug companies, because of his "psychological approach" so I doubt that he'll change, but his days at the CDC may be numbered anyway.

    It's really difficult to tell what's going on with CFS. Obviously something happened in the 1980s that made people sick at the same time with the same illness, and the govt. dropped the ball. Is it that those people involved don't want to admit that they were wrong? And why is the govt. insisting that EBV and HHV-6 are not involved when clearly they are in a substantial number of cases? Are they trying to present viral-induced CFS as a new and separate disease in order to avoid liability for their handling of the original epidemic? (there is a lot of HHV-6 research going on right now) Is it that people have based their careers on CFS being a psychiatric disorder and don't want to lose their livelihoods? It's all very very fishy. And of course people with CFS are paying the price.

    IMHO they will eventually have to face the fact that CFS (or whatever they want to call it) is not a psychological illness because there is too much scientific evidence to the contrary and people are still becoming "infected". And the research keeps coming. My concern is that research could be discouraged because of healthcare policies that may be implemented, and it won't be considered worth the investment to find a treatment. But barring that scenario, I think that ultimately the truth will come out, just like it did with MS and other diseases that were once dismissed as mental illness. In the interim though I'd love to have just about any other disease but CFS.

  6. AuntTammie

    AuntTammie New Member

    I saw the abstract from that study...wish I could read the whole thing, but you have to pay for it to do that....I love that the CDC claims the new definition is in order to "bring more methodological rigor to the current case definition" when it actually does exactly the opposite by eliminating all the physical symptoms that are actually unique to ME......a big part of the problem with research has been defining the criteria for CFS, so that everyone researching it is studying the same illness....this says that it's fixing that problem when in fact it's going to make it worse

    I too share your concern about the impact of possible new healthcare policies...actually I find it really scary on one hand, but on the other, I think that most of the valid research being done is not getting any govt funding anyway, so maybe this won't change much.....another thing about all this that scares me is how it could wind up impacting SSDI.[This Message was Edited on 03/16/2009]
  7. AuntTammie

    AuntTammie New Member

    I've read stuff about this a few places.....if I am remembering rt, it was mentioned on pro health, and in the results of the latest CDC "studies" utilizing the new definition, and also on the ncf site....the journal article that outofstep mentioned on here is another place it came up

    I'm not completely sure of what is behind it, but from the stuff I have come across I am reasonably sure it has to do with money - one way or another.....the CDC, psychiatry, drug companies, etc all have ties to one another, and are all interested in making lots of money....and the CDC obviously has blown it for us all along, and blew 12.9 million that was supposed to go to real research on ME

    like you, a lot of the times I don't want to tell people what I have either, for the same reasons, but it really depends on who I am talking to.....if there's a chance I can educate the person about what ME really is, then I want to do that....and in general, I don't care that much what people think about me unless they are freinds or family......the main reason, though, why this whole thing bothers me is that we don't have much hope of getting any real help if people who can make a difference (Drs and researchers, etc) buy into the psychological cr*p
  8. luckyman

    luckyman New Member

    As my disease seems to be getting worse, I have really beeen hoping for at least a positive breakthough in the way the medical profession views this illness. There have been some breakthroughs in research, but without the funding it will be a long time before treatments will improve.
    I've been taking hydocodone, klonipin, and amytriptiline for 6-7 years. My first 20-25 years went untreated. Now my doctor is telling me that these drugs are inappropriate for treatment of FMS. I'm still getting the drugs, but continue to get worse, and may soon be looking for stronger painkillers. I feel that will be an uphill battle, yet necessary.

    All I want is to work a few hours a week and be a good parent to my child. When my daughter asks me about my disease, I told her the truth, but also asked her to never tell anyone what I have because of all the trouble the diognosis already caused. I tell her to say that her that her dad is often tired and sleeps a lot. (as I can no longer hide the symptoms.)

  9. AuntTammie

    AuntTammie New Member

    I can't believe that your mother's friend said awful! (And what kind of friend was she if she thought that of your mother?!)

    I am so sorry that you are doing so poorly. I often have a hard time finding a reason to keep hanging on, too. I am not completely housebound, and I can still even do some exercise, but I am usually struggling to get most of the things I need to do shopping is esp hard, and laundry....I have a really hard time with that....showering can be really tough, too - oddly more difficult for me than exercise.....I find that I skip showers fairly often these days & I HATE that - I used to frequently take two showers a day, sometimes even three depending on what I had been doing with my day, but then my days were considerably more active than now.....if I am actually going to be around people I always shower - if I can't manage a shower, I will cancel seeing anyone, bc I feel so gross....and that sucks, bc I feel so isolated so much of the time already....but it sounds like you are in quite a bit worse shape than you have anyone helping you? I really hope so.
  10. AuntTammie

    AuntTammie New Member

    I like your response : )
  11. outofstep

    outofstep Member

    It's maddening isn't it? The logical thing for the US to do is to adopt the Canadian definition, but instead they're going in the other direction-either they are just clueless, or they are very evil and purposeful and there is something else driving this...
  12. AuntTammie

    AuntTammie New Member

    I don't see how they could be clueless at this point....maybe when the research was just getting started, but not with all that has been proven.
  13. outofstep

    outofstep Member

    I know what you mean-I started telling people that I have Chronic Epstein Barr a couple of years ago and usually people are understanding and sympathetic. My favorite response to telling someone that I have CFS was "I thought that was fake, like a fake disease."
  14. AuntTammie

    AuntTammie New Member

    Did you see the post I started a day or two ago re: the drug situation? (supposed shortages, Drs not wanting to prescribe certain drugs, darvocet possibly to be taken off the market, etc) I really think that all of this is tied together. The drug companies exert a very big influence on the Drs, the govt, researchers, etc....I think the drug industry is the biggest money making industry in our country now and that money buys a lot of influence.

    I hope that you are able to find a solution to your med situation and to continue working. How old is your daughter?
  15. outofstep

    outofstep Member

    I totally know where you're coming from and it really sucks. Lately I've started feeling like I'm not "me" anymore because I can't do any of the things that gave me an identity, and I never feel well so I don't even act like myself anymore. What keeps me going is hope, and the fact that the cure could be announced ANY time, like tomorrow. Because one of these days (hopefully soon) it will be a reality and you will be able to kick CFS to the curb and get your life back. You have to hope for and live for that day. Keep hanging in there!!

    Apparently at the Reno conference they said some encouraging things re: Isoprinosine. And Ampligen *may* get approved in May. So reasons for hope...

  16. outofstep

    outofstep Member

    It sounds like you're due for an upgrade in drugs since many lose their efficacy after awhile. Do you have a fibro dr? If not they may be the best ones to see about it. Good luck!
  17. outofstep

    outofstep Member

    Yeah unfortunately they strike me more as the evil types :(
  18. TeaBisqit

    TeaBisqit Member

    I swear, I just keep picturing that scene from the Dawn of the Dead movie where the guy holds up the sign that says, "There is no help coming. We are on our own."

    I've been waiting eighteen years for help. I used to be the most optimistic person ever. I was always the one to say the sun will come out tomorrow and all that junk. So far, I don't see it.

    Ampligen was my only hope. Because the approval of it, whether or not it actually works, would legitimize us. It's an immune modulator, not one of the awful AD's they keep trying to push. Approval of an immune modulator, they would finally have to admit the disease is physical.

    But they never approve Ampligen. They keep saying they will and they never do.

    I can relate about the showers. I used to take two showers a day because I belonged to a gym and worked out alot. Now, I don't have the energy. Every other day or every few days is a shower. If I'm going somewhere or will be around someone, then I push for more often, but it saps my energy and a too warm shower triggers my NMH/POTS and I end up nearly blacking out.

    I have no one to help me now. I am on my own. I've been abandoned by my relatives who are incredibly evil and anyone who ever cared about me is dead. My support system died. I am alone with severely Advanced Lyme and CFIDS and overlapping Fibro and all they entail. I'm not doing well.
  19. Pansygirl

    Pansygirl New Member

    This is such frustrating news. I was diagnosed with CFS first and then Fibro .
    And my therapist says I have Myofascial pain .....but when someone actually asks
    and I feel comfortable telling them I say Fibro . Even then most people don't get it.

    very gentle hugs for all of you, Susan

    TeaBisqit very gentle hugs coming your way special just for you, Susan
  20. simonedb

    simonedb Member

    sorry to hear you are so discouraged right now. i am not going to blow smoke up your ass with some pollyanna stuff but I feel for ya. what helps me sometimes is there have been people marginalized and persecuted throughout all history in all kinds of ways so we are in good company, pretty common actually, its just sort of a mindfq with this one because its done in such a "civilized" way! and, you just never know.........