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Have any cfs/me patients gotten worse after they received a flu shot?

Discussion in 'General Treatment' started by Dr.Patient, Nov 13, 2014.

  1. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I know the advice is out there not to take flu shots once you get me/cfs. I'm trying to see if any patients received a flu shot, and had their cfs/me worsened. I have had cfs/me for 4 years now, and took killed flu shots for 4 years, and had no problems. I do take the flu shots because my illness started with a horrible flu.
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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  3. Martial

    Martial Senior Member

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    The main issues I hear with flu shots is not only the active ingredient for immunization but the additives. Methyl Mercury and Aluminum for one example. Generally the risk/reward profile is pretty abysmal in a flu shot unless you are on chemo, have an immune deficiency disorder, or are very elderly.
     
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  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    My primary doc wants me to get one, but I've declined and he hasn't pressed the point. I haven't had a flu shot now in over 20 years. If I was out in public a lot where people would be coughing on me I might consider it. When I go into the clinic I wear a face mask, thankfully provided to all patients at the door who want one.

    Here's one more person's experience with flu shots taken from the comments of a Medscape article about CFS:
     
  5. charles shepherd

    charles shepherd Senior Member

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    Info from MEA on flu vaccination:

    We have an MEA information leaflet that covers flu vaccination and ME/CFS in detail

    The key points are summarised below

    ME/CFS is classified as a neurological disease - so you should be able to have one on the NHS (in England) if you decide to do so

    Confirmation from Dame Sally Davies, Chief Medical Officer at DoH:


    "As you know, the risk of serious illness from flu and consequent hospitalisation and death is higher among those with underlying health conditions such as M.E.. We know that people with chronic neurological conditions are approximately 40 times more likely to die if they develop flu than individuals who have no other underlying health conditions.

    The best way for people at risk from flu to protect themselves and their families is to get the flu vaccine. People with clinical risk factors are eligible to receive the seasonal flu vaccine free each winter."

    SUMMARY OF MEA INFO ON FLU VACCINE AND ME/CFS:


    A dose of flu can easily cause a significant relapse of ME/CFS and if this has happened in the past then a vaccination is well worth considering - especially if you are in contact with people who may be infected.


    People with ME/CFS who have other chronic illnesses affecting the heart, kidney, immune or respiratory function, where a dose of flu could cause serious complications, should also discuss having a flu vaccination with their doctor.


    On the other hand, people with ME/CFS do sometimes report having a relapse or significant exacerbation of symptoms following a vaccination - especially when they are experiencing flu-like symptoms. This may be related to the fact that some research evidence indicates that there is low level activation of the immune system in ME/CFS - rather than immune system deficiency. But if you do have evidence of lowered immunity due to illness then this is another recognised indication for having a flu jab on the NHS.


    We have an MEA information leaflet that covers all aspects of flu vaccination as they apply to ME/CFS in more detail, including a summary of research findings.


    We also have an MEA leaflet covering the research that has examined the link between vaccines and ME/CFS


    The MEA website polls archive section (>> p3) of the MEA contains the results of feedback from people with ME/CFS who have had a flu vaccine in the past.


    Start Date: December 1, 2008 @ 2:09 pm
End Date: November 2, 2009 @ 2:09 pm

    How did your flu jab affect your ME/CFS symptoms?

    I felt the same (45%, 86 Votes)

    I felt much worse (27%, 52 Votes)

    I felt slightly worse (22%, 42 Votes)

    I felt slightly better (4%, 7 Votes)

    I felt much better (2%, 4 Votes)

    •
 
 
SEE ALSO:
 


    1 Flu vaccine causing ME/CFS-like side effects: http://www.dailymail.co.uk/health/article-2054160/300-000-doses-flu-vaccine-Preflucel-withdrawn-alert-effects.html
 


    2 Should influenza vaccination be mandatory for healthcare workers?We report two cases of Chronic Fatigue Syndrome (CFS) after Swine Flu vaccination. http://www.bmj.com/content/347/bmj.f6705/rr/687260
    3 Information from NHS Choices website:
 


    Under the guidelines drawn up by the Department of Health people living with CFS are entitled to the seasonal flu vaccine as they are defined as living with a serious long-term condition.

    Though there may be both pros and cons associated with vaccination. Catching the flu when you are already experiencing symptoms such as fatigue can be very debilitating so vaccination can protect against that.

    On the other hand some people with CFS who received a vaccine reported that the vaccine appeared to make the symptoms of CFS more severe.

    In a small survey carried out by the ME Association, just under half of people said vaccination made no difference to their symptoms, a fifth said it made it slightly worse and a quarter said it made it much worse. While a small minority of people surveyed (6%) said vaccination appeared to make their symptoms better.
     
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  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Thank you very much for this information, appreciate it!

    My thoughts are - for somebody who had cfs with a flu, it's hard to not get a flu shot.

    For someone who has had cfs after a flu shot, it's hard to get another shot.

    For all other types of cfs patients, is it appropriate assumption that they should never get a flu shot? In such patients, the flu infection would probably cause more damage than a flu shot.

    It's impossible to not come into contact with other people, or grocery bags, or your mail, all of these capable of carrying the virus.

    Cfs I think, is not as prevalent in tropical countries.

    For people with first degree relatives who have cfs or MS, as in the two nurses in the article above who got cfs after flu shots, it is still hard to make a decision either way. If the flu shot doesn't get them, the flu might.
     
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Not if you live alone and get your groceries from Amazon. I can go for weeks without coming into contact with another person. As far as I know, packages and mail aren't vectors for the flu.
     
    Last edited: Nov 15, 2014
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  8. CFS_Kristin

    CFS_Kristin Senior Member

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    I refuse to get another flu shot. My CFS started shortly after I received the Flu shot in November 2014. All of December I felt so run down, like I had come down with something and for months I would walk up with bad fatigue. Finally in March 2015 I got the flu, and my problems escalated when more, left me bedridden for 1 year and 1 1/2 years later I'm still not better.
     
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  9. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Were you completely healthy/normal before you got the flu shot? Were there any times in the past when you had fatigue on and off?
     
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  10. CFS_Kristin

    CFS_Kristin Senior Member

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    I was completely healthy, running a business, working out 4-5 days a week and traveling on weekends. The only other time I had fatigue in my life was when I was 18 I had Epstein Barr. But I was still able to go to college, I had to take it easy the first few months, but maybe because I was so young I was able to get over it.

    I got the flu shot I was 26, and that started my whole downwards spiral with CFS! I just turned 28, and I haven't been able to work for a year, had to let go of my company and my parents are taking care of me. It's hard to say if it's the sole reason why I'm so sick right now, but I just know everything got bad right after that. I'm so traumatized, and will definitely never be getting the flu shot ever again.
     
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  11. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    And this was a killed shot, an injection? And not a live nasal spray vaccine?
     
  12. Horizon

    Horizon Senior Member

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    I got one, inactive and preservative free. Dr Lapp's site says if you've tolerated it in the past its likely ok, if you are sensitive to vaccines discuss it with your CFS Dr.

    I think I haven't noticed a difference in years past.
     
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  13. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    I did not get a diagnosis for years. Since I knew my health problems had started with a terrible case of the flu, I got flu shots for years. I did not have any problem with then. I skip them now because I am no longer in daily contact with other people and don't want to spend the time and money.
     
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