Discussion in 'Fibromyalgia Main Forum' started by Marta608, Nov 4, 2006.

  1. Marta608

    Marta608 Member

    More info on CFS, this time by Reuters News but once again they mention "therapies that can reduce pain and suffering". Where are they?? I agree with someone who wrote on another thread that people will now assume we can be cured. Also, by saying that 80% of people don't know they have it sounds as if it's a mild headache or a bit of bothersome weariness. Drat! Still, I guess it's a start.


    By Maggie Fox, Health and Science Editor
    Fri Nov 3, 6:22 PM ET

    Chronic fatigue syndrome, once thought by some doctors to be a psychological problem or even a excuse for malingerers, is a real disease that affects more than a million Americans, the U.S. Centers for Disease Control and Prevention said on Friday.

    Early diagnosis and treatment of the disease are important for recovery -- even though it is not clear what the best treatments are, CDC officials told a news conference.

    "CFS (chronic fatigue syndrome) is a terrible illness that prevents many people from taking part in everyday activities and participating in the things they enjoy," CDC Director Dr. Julie Gerberding said.

    "Fortunately, there are therapies for CFS that can reduce much of the pain and suffering," she said.

    The CDC launched an awareness campaign about chronic fatigue on Friday and published a dedicated Internet site at

    Up to 80 percent of people with chronic fatigue do not know they have it, the CDC said. Its causes are unknown but it can cause profound exhaustion, sleep difficulties, and problems concentrating and remembering.

    Flu-like symptoms, including pain in the joints and muscles, tender lymph nodes, sore throat and headaches are also common. "A distinctive characteristic of the illness is a worsening of symptoms following physical or mental exertion," the CDC said in a statement.

    "Diagnosis is primarily made by taking a patient's medical history, completing a physical exam and lab tests to rule out other conditions," it added.

    "The CDC considers chronic fatigue syndrome to be a significant public health concern, and we are committed to research that will lead to earlier diagnosis and better treatment of the illness," Gerberding said.

    Several other illnesses have symptoms that mimic chronic fatigue, including fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis, the CDC noted.

    "There are tens of millions of people with similar fatiguing illnesses who do not fully meet the strict research definition of CFS," the CDC added.

    No one therapy works but reducing stress, dietary restrictions, gentle stretching and nutritional supplementation have all been shown to help. Drugs are sometimes prescribed.

    "For instance, tricyclic antidepressants may not only improve mood, but may help with sleep and pain," the CDC said.

    "Patients should be advised to avoid herbal remedies like comfrey, ephedra, kava, germander, chaparral, bitter orange, licorice root, yohimbe and any other supplements that are potentially dangerous," it added.

    [This Message was Edited on 11/04/2006]
  2. maedaze

    maedaze New Member

    I suppose it's a start, but it's not very clear is it?
    And how much money exactly have they got for their commited research? Early treatment... but no one knows what treatment that is!!

    Well at least it's stopped being called the yuppie flu.
  3. Marta608

    Marta608 Member

    Exactly. Baby steps. We must be thankful for small favors, I guess, although I must stop myself from thinking about how far we could be if the CDC had shown us respect originally.

  4. Pianowoman

    Pianowoman New Member

    I agree that we have to try to think positive here. I think this is a big step forward. We are all so sick and frustrated that we want immediate answers. When a new disease comes along, it takes time for answers to come. Many things were said that should be very validating for us.

    There were 7 new studies listed as part of this announcement. At least money is going to where it should go now. I think a lot of people don't know they have it because they aren't being diagnosed. Either they are trying to tough it out and think they are 'just tired' or their doctor doesn't know enough to diagnose them. Hopefully, this announcement will begin to educate doctors as well as patients. It's likely going to take another generation of doctors to be really aware of this disease.

  5. Marta608

    Marta608 Member

    Kathy, you're absolutely right. Besides, what good does it do anyone if we're negative about it.

    Thanks for putting it in this light.

  6. Forebearance

    Forebearance Member

    I think that a big goal of the awareness campaign is to reach out to undiagnosed people.

    So when they say there are treatments, I think they are referring to things that we probably take for granted.

    Sleep meds, pain meds, vitamins and minerals, restricting activity, stretching, hormone supplements, antidepressants, etc.

    To us they may be a big yawn, but to an undiagnosed person they may seem like a revelation.

    It is agonizing how slowly medical research progresses, I know!

  7. TeaBisqit

    TeaBisqit Member

    I think they are sending mixed messages. I've never met anyone who had this disease, really had it, who has ever recovered a hundred percent. And they are still pushing the antidepressants and telling people to change their diet and stretch. There is nothing new. About the only new thing is they are now admitting the disease is real. And I think it's bad that they are saying 80 percent don't know they have it because it will encourage everyone who is tired from jogging all day to say they have it. I just don't think any of this has been well represented.
  8. Marta608

    Marta608 Member

    You represent two opposite sides of the discussion and I think you're both right.

    Forebearance, we do need to take heart (do they still say that? evidently) with this public admission of the illness and yet as teabiscuit says we still have a long way to go.

    I do wonder if it won't help those trying to get disability to have CFS a recognized, bonafide illness. That would be a worthy thing or as Martha says, a good thing. ;>)

  9. Mikie

    Mikie Moderator

    This is like "Good news/bad news." I wish they had not mentioned using an antidepressant for treating CFIDS (they didn't even get the name right).

    To acknowledge the illness is a step forward but there is so much more which could have been informative to those who know little about our illness.

    I see this as basically nothing lost, nothing gained.

    Love, Mikie
  10. Marta608

    Marta608 Member

    So good to see you back!

  11. julieisfree05

    julieisfree05 New Member

    Pardon my cynicism, but the CDC "defined" CFS TWENTY YEARS AGO and there is still not ONE medication that is FDA approved to treat it (or the other illnesses listed here)!

    Tricyclic Antidrepressants? Give me a break. My neurologist was prescribing TCAs for migraine prevention in the mid-80's and had been doing it for years way back then. This is the best "treatment" the CDC has to offer??

    I also have a problem with the list of herbal remedies to avoid. I know people who have experienced significant relief from Kava, Valerian Root, and Licorice Root - among many other "natural" therapies.

    MONEY TALKS, and neither the CDC or NIH have committed the kind of HARD funding to research or treatment that these illnesses deserve. If the government was serious about treating/curing these illnesses, the HARD funding would be appropriated.

    *steps off of soapbox*

    - julie (is free!)
    [This Message was Edited on 11/05/2006]
  12. Marta608

    Marta608 Member

    ...on CNN? Please know here that I am in no way criticizing Fox, CNN or in any way demeaning those with Parkinson's. But I couldn't help wonder how our illness can compare with the visible affects of something like that. Even someone famous wouldn't draw that kind of notice to our illness. The most we could do is sleep through an interview or say Huh?? a lot....

    Yeah..... I hear you, Julieisfree; I think it's still a long time away for us.

  13. julieisfree05

    julieisfree05 New Member

    One of the biggest problems with medical research in the US is that your illness is only as important as the celebrity who has it.

    Think Michael J. Fox (Parkinsons), Christopher Reeves (Spinal Cord Injuries), Mary Tyler Moore (Diabetes), and Liz Taylor (spokesperson for AIDS).

    Until we have a "Celebrity" with clout who is willing to step forward and advocte for us, I don't expect these illnesses to be taken seriously.

    It's sad, but true..

    - julie (is free!)
  14. shar6710

    shar6710 New Member

    I think a lot of us are upset because this press conference wasn't directed at us. Of course its old news to us we know all about CFS.

    If you read the transcript the main push in this campaign is to educate all those ignorant people we bitch about all the time. The Doctors who dismiss us and the people who tell us how tired they are. And also those who may be suffering and have been told it's all in their head.

    If you haven't read the "Tool Kit" for health workers on the CDC web site I would encourage you to do so.

    It encourages Doctors to guide patients to take NADH, Vit b12, Omega 3s, Vit C and CoQ10.

    It talks about how we are sensitive to meds so to start us on low doses. It talks about alternative tx: acupuncture, massage, yoga (for the more active), hydrotherapy and more.

    It tells doctors to be "willing participants in the disability process".

    Aren't these things we agree with?

    These "Tool Kits" are being distributed to health care professionals! How can this be a bad thing?

    I know the CDC has been negligent in the past but I think we should take the attitude of "what have you done for me lately" and let go of the past.

  15. Forebearance

    Forebearance Member

    I'll go look at the tool kit. Those are good suggestions they are making. I hope my doctor gets one.

    I also agree with you, Julie, that for someone to have mentioned tricyclic antidepressants at the press conference makes that person sound like s/he is from the dark ages. I mean, does anyone know ANYONE with CFS who uses those things any more??

    Yeah, I understand what you mean, Marta, about the invisibility of our illness. Maybe if we had hideous purple spots on our foreheads, we'd get more attention!

    Oh, wait, I just thought of something! We could force a celebrity with CFIDS to play cribbage on national television. That would show our disability.

    I still think cribbage should be used as a diagnostic test for CFS. (It requires you to quickly add up cards that equal 15) I am so slow at playing it that no one in my family will play with me!

    [This Message was Edited on 11/05/2006]
  16. shar6710

    shar6710 New Member

    I started another thread about the tool kit and it has the link. You don't have to wait for your dr to get it, you can print it off now and give it to him/her.

    [This Message was Edited on 11/05/2006]
  17. chloeuk

    chloeuk New Member

    Part of the criteria for being diagnosed is to be ill for at least 6 how can they diagnosis early...imagine having any other disease for that long before being diagnosed...and then when it is diagnosed they tell you ...well there is no regulated treatment...great..would like to know where they get their statistics particular the 80% of people who arent can they say that when the people who have dont see a dr??

    Seems like no one understands and noone cares...if you get a "proper" disease then you are offered is literally destroying millions of lives and no-one can give us any answers...except to say..."its very strange".
  18. Marta608

    Marta608 Member

    Shar, you're right, we do need to read the Tool Kit and then hope doctors will do the same. Anyone know when these packets hit the doctors offices? I'm usually a pretty optimistic person but I still suspect that doctors will give the illness little attention at this time. Doctors are taught that, if lab work is good, so is the patient. If I had a dollar for every lab report that shown as a shining star while I slumped wearily in a chair or worse yet, on the exam table, I'd be - well, not rich but certainly better off financially.

    My old doctor, the one I was seeing when I first presented with EBV (which his nurse diagnosed!), did try me on injections of B, CoQ10 and C but I was too ill to respond by that time. My body reacts weirdly to increased supplements so even the most diligent doctors have shaken their heads, patted me on mine and sent me on my way.

    I think what we really need is to teach behavior modification and other ways to manage stress beginning in middle school. I think we need to back genetic research. I think we need to put a bigger spotlight on diet and nutrition earlier in life. In other words, I think, in addition to scrambling to fix ours and other health problems in our country, we need to be more proactive. We need to learn and then teach our children how to achieve and maintain maximum health. Of course, that doesn't bode well for Big Pharma so it will take a lot of effort on someone's part - probably not ours.

    Forebearance: I love the idea of cribbage testing. That thought gave me my first laugh of the day.

    Chloeuk: I know. It seems like we're a bunch of Rodney Dangerfield's who get no respect. I suppose that offers us the opportunity to respect ourselves. Small comfort, aye?

  19. sweetpea48

    sweetpea48 New Member

    I think it's entirely possible that there are 80% undiagnosed, because in some people it comes on so gradually, and can be so vague, symptom-wise.

    I haven't felt well for 21 years, and off and on before that. It's been the last six years that I've gotten a good bit worse, and the last two years that I've begun thinking about what's wrong with me and the best way to go about trying to get diagnosed and treated.

    I also think it's possible that there are plenty of people who have it, but like everything else, there is a spectrum of symptoms and severity of symptoms, and many may have mild enough symptoms that they never go to the doctor for their fatique and aches and pains.

    JMO, of course! :)
  20. Marta608

    Marta608 Member

    You're opinion is very valid. Recently a friend asked me about my health in my early years. I recall never feeling well for very long, even in high school since I had chronic tonsilitis. I also had what I suspect now was FM after a hysterectomy but it was diagnosed and treated as arthritis. I later had thyroiditis, then eventually EBV and now CFS. My physical stamina has never been very great but I've always done stress very well.

    I guess that's why I think we need to become more proactive in this country about nutrition, exercise, good lifestyle habits and stress reduction. I think, more than a genetic prdisposition to illness, we have inadequate coping skills; I know I did. Stress was thought of as normal in my family, like having green eyes. As for nutrition, just look at how many of us, knowing we're ill, knowing our bodies need our help, continue to eat things we shouldn't.

    I simply can't fathom how this "new" information given to doctors is going to help us that much considering how long some of us have been sick. It will be helpful in getting SSD and other disabilty benefits, however. And it may encourage those of us with the illness to look more closely at our lifestyle.

    I may have to give up ice cream Drumsticks after all.....


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