Discussion in 'Fibromyalgia Main Forum' started by suzetal, Sep 27, 2006.

  1. suzetal

    suzetal New Member

    Fall 2001

    Treatment advisory
    Flu Shots: Weigh the Risks

    Physicians who treat patients with chronic fatigue syndrome (CFS) must balance the benefits of an annual influenza vaccination against concerns that the inoculation will exacerbate CFS symptoms.

    Here are two physicians' views on the use of flu vaccines in CFS patients:

    Charles Shepherd, MD
    On the plus side, the vaccine should provide a fairly high degree of protection against the particular strains of flu virus that seem likely to occur over the coming months. This is important because a bout of flu will almost certainly cause a relapse or marked worsening of symptoms in people with CFS. In addition, influenza can trigger life-threatening complications in patients with underlying conditions such as diabetes or heart, lung or kidney disease.

    However, physicians must be aware of concerns that the vaccine itself can cause problems in CFS patients. There are a number of anecdotal reports (but no firm evidence published in the scientific literature) of people with CFS experiencing a relapse in symptoms following the use of flu vaccines.

    In a survey I carried out a few years ago, a total of 21 people with CFS responded to a request for information about what happened following flu vaccination. Seven had no problems at all whereas 13 reported an exacerbation of symptoms that ranged from mild (3 of 13) to moderate (7 of 13) to severe (3 of 13). There also was an interesting report involving a teenager who noticed a considerable degree of improvement in symptoms following vaccination. These results are very similar to the general feedback I continue to receive on this subject.

    It is impossible to predict who is more likely to suffer an adverse reaction or relapse following use of the influenza vaccine. However, anecdotal reports suggest that this may be more likely to occur in people who have ongoing infective-type symptoms (sore throats, enlarged glands, problems with temperature control, etc.). In this situation, I would personally advise against having a flu vaccine unless there are very good reasons for doing so.

    I also would advise against flu vaccinations if a patient is in the very early stages of CFS, particularly when it obviously follows an infective episode. In addition, I would avoid administering the vaccine if the patient has previously experienced an adverse reaction to flu shots. Patients who have not shown adverse reactions to influenza vaccines in previous years will probably handle the latest vaccine without any real problems, even though the preparation varies annually.

    Charles Shepherd, MD, is medical director of the Myalgic Encephalopathy Association (MEA) in the United Kingdom.

    Stanley N. Schwartz, MD
    There is no good evidence-based medicine knowledge to support or refute the often-repeated notion that people with CFS should not have vaccinations. The theory is that people with CFS have certain overactive immune mechanisms that may be further stimulated by a vaccination, leading to worsening of symptoms. We now know that immune dysfunction is not a uniform part of the pathology of CFS.

    I have heard that theory repeated by many physicians with experience in treating CFS patients. However, I am unaware of any systematically collected observations to prove the point.

    During the past several years, I have observed a few patients with CFS who have developed a major influenza infection. In each case, a major exacerbation of the CFS occurred as a result of the infection. My experience has actually been different from other CFS doctors in that patients have seldom reported any significant problems after vaccination to me.

    So here is my bottom line: we know that for certain people in high-risk groups, influenza can be serious or deadly. This is well established in the medical literature. I advise my patients that the decision to receive influenza vaccine should be made based on whether they meet the current Public Health Service criteria for vaccination.

    If a person with CFS has any of those indications for the vaccine, I recommend it without hesitation. If a person with CFS is likely to be exposed to influenza and to pass it along to others (such as if he/she is a physician, nurse or other health care worker), I also recommend the vaccine.

    If a person does not have one of the standard indications for the vaccine, I tell them that the decision to receive it has to be a personal decision and that there is no research to confirm or reject the theory that patients with CFS have more problems with the vaccine.

    Stanley N. Schwartz, MD, is clinical professor of medicine at the University of Oklahoma College of Medicine-Tulsa, and sits on the board of directors of the American Association for Chronic Fatigue Syndrome.

    For more information
    The Centers for Disease Control and Prevention (CDC) offers treatment guidelines for physicians with questions about the use of influenza vaccinations. The CDC's Web site is http://www.cdc.gov/nip/flu.

    The CDC reports that delivery of annual influenza vaccinations has been delayed once again this fall, though the situation promises to be better than in recent years. Officials estimate that 64 percent of the 83.5 million projected vaccine doses will be available by early November. The rest will be distributed by the end of December. The vaccine prepared for the 2001-2002 season will include A/Moscow/10/99-like (H3N2), A/New Caledonia/20/99-like (H1N1) and B/Sichuan/379/99-like antigens.

    [This Message was Edited on 09/27/2006]
  2. mrdad

    mrdad New Member

    I printed out another one of your useful contributions
    of knowledge! I'm gonna' have to set up a SUZE file
    pretty soon to keep all your valuable and timely info.

    Grand kids are cute and look sweet and happy!
    [This Message was Edited on 09/27/2006]
  3. mbofov

    mbofov Active Member

    I asked my doctor last year if I should get a flu shot. He asked if I had been getting them over the years and I said no, and he said then that I should not get it. I think he probably didn't know either, but since he had no way of knowing how I would react to it, he said not to get it.

  4. Adl123

    Adl123 New Member

    Dear Suzetal,
    When I was first diagnosd in 1993, I asked my Dr. if I shoud take flu shots, and she said it was even chances if I did or didn't. I haven't had one since then, and let me tell you why.

    In the school where I worked we had 2 cases of Giann Barre Syndrome (An extremely rare disease). Both people suffered terribly and almost died. One was left in a wheelchair, and the other was left with so many unusual illness that she had to give up her job for a long time. I read that flu shots are not recommended for this syndrome, and since I have DFIDS, and Giann Barre is also involved with estreme weakness (So bad that people sometimes cannot even blink, yet they are conscious), I decided not to take the chance.

    I might be totally on the wrong path, but, there you are. That is what I've decided for myself.

  5. KelB

    KelB New Member

    My GP said he was 50/50 when I asked. A bout of flu could tip me into a CFS crash, but then again there's a risk that a flu jab could do the same.

    I asked him if he'd get a flu jab if he was in my place. He had to think about it, but he said probably not.

    I've never been particularly prone to flu anyway. I only seem to get it once every three or four times it goes round and fingers crossed, I haven't had it since the CFS started two years ago (and if that's not tempting fate, I dont know what is!).
  6. suzetal

    suzetal New Member

    My doctor also said 50/50 so we decided not to.

    The reason I posted this was so many had ???? that when I found this article i figured some may be interested.

    As for me it scares me.


  7. Cromwell

    Cromwell New Member

    I developed a mild but chronic guillene barre virus after my last flu shot.

    I am showing antibodies to it still.

    My current doctor has said no flu shots in future as he believes that I would get worse GB next time.

    I had a friend who got worse reactions each year until the 3rd or 4th shot and she got severe GB and was on life support and in a wheelchair for a year recovering.

    Recent reports carried out in nursing homes and residential care units have shown that the flu shot has made no difference at all except in some cases more deaths from the flu, as people were not washing their hands etc as they thought they were protected.

    Washing ones hands, using nasal spray and disinfecting solid surfaces apparently had a good effect on beating the flu.

    Love Anne
  8. Mikie

    Mikie Moderator

    I've always had trouble with the flu shots. Years before I was diagnosed, my doc told me to stop getting them. Every year, the WHO guesses at which strains might be prevalent and the vaccine is produced based on their guesses. A year or two ago, they missed the mark and people who got the shot caught the flu.

    Over the years here, we have discussed the vaccines and it seems some people have no problems with the vaccines and others, like me, have a strong reaction to them. It's a personal decision. The first doc in this article had some interesting informal case studies and I found that helpful.

    Love, Mikie
  9. mrsgroove

    mrsgroove New Member

    As I read the first article, or opinion, I was wondering to myself if any of the 13 people who reported worsening symptoms live in a cold and/or northern climate. I know that I always feel my worst in the winter as I live in the northeast.

    Also, it appears as though the opinion was written in 2001. Has anyone seen anything more current on the role of the flu shot and CF?

  10. sues1

    sues1 New Member

    But only in the fact that ever since I started getting the shots......I have not had one case of the flu. I do not dread winters like I used to as I seemed to get a bad flu a couple of times a year.

    I feel that I am lucky from what I have been reading. I have CFIDS and FIBRO......and it has me really disabled.

    So I guess it is a personal decision for sure.

    Blessings Susan
  11. Cromwell

    Cromwell New Member

    I live in the NOrth Esat too, though have also lived in UK where I first got sick (following a flu shot I now realize although I got farmers lung from mouldy hay then as well).

    What I do find interesting is how many people here have had mono or reemergent mono, then I wonder how many of us had mono and did not realize it.

    I think Mikie makes sense though. Ask your doc and check your own reactions.

    Love Anne
  12. spacee

    spacee Member

    My sis had a really good winter on Transfer Factor Essentials which is sold at this site.

    She, at the time, worked in a hospital medical lab. Very small area with several other people in the room. A couple of coworkers did get the flu but she did NOT even thought they handled the same equipment.

    Odd thing, is that another year when she DID get the flu shot, she got the flu anyway.



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