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Adrienne Dellwo

Flu Shot "Justified" for Chronic Fatigue Syndrome

By January 18, 2013

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I came across a new study that's likely to ruffle a whole bunch of feathers in the chronic fatigue syndrome (ME/CFS) community. It's out of the Netherlands and used the Fukuda criteria, and it gives the OK for people with this illness to get a flu shot - and that it could also be recommended.

This is always a hot topic, with many people and not an insignificant number of doctors saying "no way!" In a recent poll on flu shots, 32% of respondents said they'd never get one. Seven percent said they'd gotten one and had a severe reaction.

Any time flu shots come up, you hear a variety of opinions. These comments are from a blog last month:

"Within hours [of getting a flu shot] ... I had flu-like symptoms and developed a very large fever blister.... [The doctor] said obviously I had 'some immune system problem' and never to take the flu shot again." -Cathy

"I took the flu shot in 1993 after speaking to the neurologist. Low and behold I got the flu from it and did not take it again until 2 years ago. The in between time I spent sick to near death at times every winter. In 2010 I had the flu so bad it threw me back into severe CFS/ME and took me almost two years to come out of it enough to return to part time work. I, for one, will always take the flu vaccine...." -Lady Sharlyne

"I have received flu shots every year for about the last six years (I'm 66) and have never had an adverse reaction. Nor have I gotten the flu." -Katie

The study giving the thumbs up says:

"The humoral and cellular immune responses upon influenza vaccination were comparable in CFS patients and healthy controls. Putative aberrations in immune responses in CFS patients were not evident for immunity towards influenza. Standard seasonal influenza vaccination is thus justified and, when indicated, should be recommended for patients suffering from CFS." -Prinsen H, et al. BMC Immunol. 2012 Dec 17;13:71.

Back in 2000, a Canadian study concluded that flu immunization is safe in ME/CFS, "not associated with any excess early reactions, and stimulates an immunizing response comparable with that of healthy volunteers."

It certainly doesn't appear that the earlier study swayed opinions much, and I doubt the new one will, either. However, it would be nice to have more research on this topic - especially from the doctors who say they've seen a lot of severe reactions in their patients.

Flu season generally peaks in January and February, so if you're considering a vaccine, you don't have long to get one. Here's more information to help you decide:

(If you're wondering what research shows about flu vaccines and fibromyalgia, don't bother - there isn't any.)

What's your stance on the flu shot? Have you had a bad experience with the vaccine, or with the flu itself? Will the new research sway you at all? Leave your comments below!

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Comments
January 18, 2013 at 10:25 am
(1) Rachael says:

Some people (like myself} have a very active immune response. I don’t require notification via flu vaccination that a virus has entered the body. I am quite capable of taking care of the flu virus with my very own robust immune system; no vaccine alert required. I haven’t had the flu, or even a cold in over twenty-five years. I have reactions to things, but I do not get infections.

For me, the flu vaccination is not something I require. The thought of injecting something into my body that is designed to cause an immune response sends shivers down my spine. My personal case of ME/CFS only improved after I learned how to dampen my hyped-up immune response.

January 18, 2013 at 10:44 am
(2) CF sufferer says:

This is insane.
The LAST thing CF sufferers need is a flu shot!
First of all you only have a 60% chance that it will even be effective
and then you have a 50% chance of an adverse reaction.
Just continue to wash hands and wear gloves when in the community.
It seems as if there is no vaccine doctors would NOT recommend under any circumstances.
The NIH is even during Anthrax vaccine trials on children.
We have lost all common sense. Let’s focus on treatment and causation, not endless (expensive and profitable) vaccines as the solution to our problems.

January 18, 2013 at 10:52 am
(3) Lois d'Annunzio says:

Since I came down with ME/CFS in Feb 2000 I have never had a cold nor flu. Why should I get a flu shot/? But the bigger Question is why don’t I come down with flu or colds. I used to get them about once a yr. before I got sick? Weird.

January 18, 2013 at 11:25 am
(4) agatha says:

It’s so confirming to see other people have had the same experience I’ve had: I developed CFS 8 years ago and have had two light colds and no other viral illnesses during that whole time. This is in spite of the fact that my children were 3 and 7 when I first got sick, bringing home multiple colds and bugs per year. I went from having 3 or 4 colds a year (at least), and an occasional flu, to nothing. In the past couple of years, as I’ve been learning to manage my CFS better and have been less incapacitated, I’ve had a couple of very light colds, when everyone else in the house is hacking their heads off. This strange immune response really should be a big clue for researchers! By the way, I get a flu vaccine every year, just in case, because I believe the extreme fatigue of a flu could destroy me, but I’ve never had a noticeable reaction to the vaccine.

January 18, 2013 at 12:34 pm
(5) Janice P. says:

I have not gotten a flu shot since I was diagnosed with CFS and FM in 1999. This year was no different – I did not get a shot. I was afraid a flu shot might mess up my immune system and I rarely leave the house. Anyway, I got the flu – symptoms started on December 16th and I just got done with the flu on Friday, January 11. A long-g-g-g-g time to be sick.

Needless to say, next year I WILL get a flu shot!

January 18, 2013 at 2:46 pm
(6) Dave says:

Just had a flu shot last week. I think it caused an increase in my normal “flu like symptoms” increased aches mostly. This started about two days after the shot and is gone as of today, eight days later. The last time I had the flu was at the onset of my CFS. This sounds mean but it sure is tempting to tell anyone suffering from the flu right now to “just get some exercise, you’re just depressed, you should cut out the carbs, you should increase your carbs, you’re just being lazy…………………..”

January 18, 2013 at 3:19 pm
(7) nancy hand says:

Seven hours after the flu shot, bright red rash all over, 102 fever, coughing, stopped up nose, headache, diarrhea, stomach pain, hard lump with swelling where I got shot, fever blisters all in mouth with a hugh cold. Sore on the outside lip, its been a week today since shot. I did not go outside my house for 2 weeks before shot, I went to walgreens where there was no one. To get shot, so I was not exposed to the flu, I will NOT get the flu shot ever again. If this does not prove that there is a issue with this shot and my having this then somebody just don’t know what is what.

January 18, 2013 at 4:29 pm
(8) Helena says:

I choose to not get flu shots. I have fibro with a strong tendency toward fatigue. It sometimes incapacitates me. When something throws my fibro into a big tizzy, it can take a couple of years until I’m able to do my own errands and chores regularly again. Years ago, I got the flu shot a time or two. Each time, my fibro got mad at me for a few months. Fortunately (knock on wood), I have not had the flu in 15 to 20 years. With the fibro, I often FEEL like I have the flu — lol — but people around me can get colds, flu, and stomach ailments…but I don’t (knock on wood). But, I do know from experience that the flu shot makes my fibro worse. My rheumatologist/fibro specialist has told me it’s best if I don’t take the shot. So, I don’t. However, I suspect that the wisdom of getting the flu shot differs from patient to patient and his/her health and immunity.

January 18, 2013 at 5:27 pm
(9) Andrea says:

I’ve had an adverse reaction to every flu shot I’ve ever had. My last one occurred about two weeks before I got mono at 32 and started my spiral into a relapse that is only getting worse in its 5th year. Sorry experience says flu shots are not good for people like me. As I live in a housebound slightly bedbound world, it’s really the people around me who need to be innoculated. I’m already isolated from the rest of the world.

January 18, 2013 at 5:57 pm
(10) LadyDi says:

As an infection control practitioner I am always concerned about all of the negative comments regarding the flu shot. As the flu shot vaccine is not a live virus it lacks the capability of causing disease. It is important not only to protect ourselves but others from the possibility of a debilitating lenghty illness which for some is fatal.
Everyday the news is filled with the major concerns regarding the great numbers of people requiring health care for the flu which could very likely have been prevented by a flu shot.
Many have realized the importance too late and now are having difficulty obtaining a flu shot. It will be interesting to see how many people remember this scare next year and get a flu shot at the appropriate time.
It is true that the flu shot may only provide 60% protection however the flu shot has been shown to decrease the severity and the duration of the flu in those who have had the flu shot.
In Canada, many health care agencies have made it mandatory for health care workers to receive the flu shot as a criteria of employment. Hopefully many employers other than health care will follow this practice.
For the naysayers, think of what our lives would be like if previous generations had not recognized the importance of immunization. Chicken pox, diptheria, tetanus and small pox to name a few would be illnesses that we would be dealing with on a daily basis. There are benefits to a society recognizing the importance of immunizations.

January 18, 2013 at 7:05 pm
(11) Diana says:

Had about a 4-5 day bout of feeling like I was fighting a bug (feverish,more fatigue & aches than usual – could barely function) right after my flu shot. Not certain whether it was the shot itself or the fact I might’ve been exposed prior to the shot (I’d been sitting at my doctors waiting room 2 days prior to the shot & again at a pharmacy waiting area where a lady next to me said she’d been sick w/the flu for the past 2 weeks) so its possible the shot actually buffered the symptoms from becoming worse. Note: I’ve fibro/CFS, psoriatic arthritis & am hypothyroid 26 yrs. now. Am battling a urinary tract infection too, & was stunned to just learn I’m HPV positive (I’m 56 yrs. old had been in a monogamous relationship 14 yrs w/no sex for over a year as we’d both been ill. Never had a positive Pap &/or HPV in the 40 yrs of being tested , even this Pap was negative (thankfully). Dr. said it could’ve been dormant (was raped by a psycho serial rapist at 16 so who knows).Only go out for necessities – food,medicine & doctors, trying to conserve my precious energy, plus the overstimulation is just too much on top of the fibro fog, its an exhausting struggle as I’m now alone to do everything.

January 18, 2013 at 7:13 pm
(12) Rachael says:

Here are some other reasons why I do not to get the flu shot:

What the Science Says About the Flu Vaccine

* A comprehensive of the flu research in healthy adults aged 18-65 from 1960 to the present including over 40 clinical trials with over 70,000 people found no evidence of benefit for the flu vaccine.

* They found cases of severe harm and inadequate reporting of adverse effects of the flu vaccine.

* There are different 200+ strains of flu and viruses that infect people every year. The vaccine covers only about 10 percent of the virus strains that make people sick.

* If the vaccine strain given in a particular vaccination happened to match the virus caught by the vaccinated person, the likelihood of getting sick from the flu was only reduced from 4 percent to 1 percent.

* There was NO evidence that the vaccine reduced transmission of the flu (a major rationale for mass vaccination) or complications such as pneumonia (another major justification).

Read more: http://www.huffingtonpost.com/dr-mark-hyman/flu-shots-panacea-or-prop_b_831696.html

January 18, 2013 at 7:25 pm
(13) Cont. says:

“Infectious Disease Specialist Dr. Kent Holtorf strongly recommended that people with mitrochondrial dysfunction, chronic neurological illnesses, fibromyalgia and ME/CFS not get the H1N1 vaccine because, to use his word, he has seen it “devastate” them.”

January 18, 2013 at 7:37 pm
(14) abot Bensussen says:

I do get a flu shot every year. I’m afraid of getting sicker. This year’s flu is supposed to be very bad. I got my shot two weeks ago. My dr. doesn’t believe in them, neither does my teacher.

Howver, I do what I can to be as healthy as possible. Without being a nut! This year’s vacine is supposed to be a very close dead virus to the live virus of this year’s flu. Hoping if I do get the flu, it will be light.

Right now I am battling a stupid cold. No idea where I picked it up, but cannot live alone. Am always somewhere for an hour or two a day. Classes, exercise, lectures, walks, errands. Something other than my home.

January 19, 2013 at 12:26 am
(15) Maria says:

I got a flu shot maybe 5 or 6 years ago. I have had CFIDS for 17 years. Within 2 days I became really ill with the flu. It lasted 2 weeks. I am one of those PWCs who hardly ever gets colds or the other typical winter illnesses that “well” people get. Why I got the flu shot that year I don’t know, but I will never get another one. Somehow I have this feeling that despite what we are told about people with low immune systems needing the flu shot, I think we may need better working immune systems to cope with them!

January 19, 2013 at 2:33 am
(16) C says:

Well, I was very leery about getting the flu shot a few years ago and decided I would try it and see what happened. The first time I got it I had a day and a half of reaction. A whole lot of pain especially in the side of the body I got the shot. I also experienced a great big red bump in the area I got the need and extra fatigue, etc. However, I did not get the flu which would have been worse and taken much more time to recover from. So I preceded to get the flu shot the 2 following years and the side effects have been less and the benefits good. However, this year I got the flu early. I caught it in August thus making me ill when before / when the flu shot came out for the season so I was unable to get it. I have now had the flu 3 or 4 times and it has been a horrible season for me getting ill and taking a long time to recover etc. So at this point in time I would say that it seems rather better that I get the flu shot. Yoy!!!! Not been a fun winter.

January 19, 2013 at 10:38 am
(17) Cindy says:

I have taken the flu shot before but have not had it for the last 3 years. I have found with my fibromyalgia any vaccines give me severe symptoms and I choose not to be vaccinated. I work in a field where they are going to be demanding me to get a flu shot and am wondering how I will be able to continue to work. I had to take another vaccine series when I became employed by the facility and spent about 8 months of pain and fatigue increasing my depression thus the reasoning for not taking the flu shot.

January 19, 2013 at 3:33 pm
(18) Penelope says:

I have CFS and have flu shots every year because I have asthma. I do find I have a couple of days of increased flu-like symptoms after the flu shot, but no worse than if I did too much activity or experienced too much stress. When people around me get the flu, I do still get some mild flu symptoms, but less than the people with the flu, whereas with CFS I would expect to have much more trouble experiencing and recovering from a flu than other people.

So for me, at least, I know I have a hyperactive immune system (asthma plus CFS) but the flu shot definitely helps when flu bugs are around. My reaction to the shot itself is such that I just plan to do very little in the two days following it – a very small price to pay for effective protection.

January 19, 2013 at 6:07 pm
(19) Cinda Crawford says:

Some people with these illnesses have an underactive immune system; others have an overactive one. That alone can answer many questions. For me, I choose to not get the flu shot and then watch all contact with possible germ sources. It works pretty well for me, especially if I’m not under too much stress. (Stress can change everything!)

I’ve been 95% healthy and Fibro and CFS-Free for years now. I would say my immune system is more like a normal person’s. Even so, I do not choose to stimulate it with the flu shot vaccine. The last time I did, I was darned sick for 3 months. When I returned to my doctor 6 months later, I complained to him that his advice had not been that good. He frankly told me that he didn’t want to hear it and then smiled… HE’D BEEN SICK FOR 6 MONTHS!

January 19, 2013 at 6:32 pm
(20) PacinginPA says:

I experience few illnesses as some others have mentioned – except CFS, of course. However, I choose to get the flu shot. Several years ago I got a particularly nasty flu that had me nearly dehydrated. I considered going to the hospital for help. Fortunately it subsided, and I was able to consume beverages again. I had CFS at the time. Having had the flu shot this year, I have experienced “the sniffles” which come and go.

January 21, 2013 at 7:56 am
(21) GILL says:

I believe my CFS and Fibromyalgia started after a very viscious flu from which I never seemed to recover.I have had flu shots for many years(proior to ME) due to asthma and being a teacher.Before M.E I was prone to every bug,virus going about ,then since I have had very few colds or flus- Did howver have near fatal Meningitis in 2008
I have always wondered about the risks of flu jabs and whether adding toxic preservatives like ( is it mercury,auminium?) is good for our already struggling bodies.However every year I have gone for one,especially since meningitis.

I have always had a flu like reaction lasting up to a week afterwards,but as I often feel like I have flu ,it doesnt worry me..

I think the strange immune responses we have should be an area of investigation for scientists?

I did read that with cfs/Me the immune system either over reacts and you are prone to allergies(my case) but rarely get common viruses or it underworks and you pick up everything thats going about.I have had a few periods of months where my symptoms have much improved,only to be landed in bed again with nasty colds,bugs etc.

January 23, 2013 at 3:30 pm
(22) Sandra says:

Since I was a child (I’m 68), every year there has been a flu epidemic, I’ve gotten the flu. It can take me up to three months to recover. So, every year, since they have been available, I’ve gotten a flu shot. I’m lucky and have no negative reaction to it. I’m sick enough without adding flu on top of fibromyalgia.

March 10, 2013 at 9:35 pm
(23) Louise says:

I’m glad I am not the only one to have suffered a long lasting adverse reaction to the 2013 flu shot. I have had the flu shot for at least a decade and no flu..several colds. I have not been diagnosed with CFS but know I feel like I have something like CFS. I have been so ill since I had the flu shot, Oct 2012. One minute I was working, working out, practicing yoga, running errands, reading etc. etc. and then three days after the flu shot, it was as if the plug was pulled. My Dr. hasn’t a clue except to acknowledge that I had some sort of weird adverse reaction. We are both hoping that whatever happened will fade over time. I do feel more like myself these last few weeks, but still fatigue so easily.

October 8, 2013 at 1:57 pm
(24) Andrew says:

I developed ME after contracting viral pneumonia but I also have obstructive sleep apnoea. I cannot afford to develop flu and be unable to breathe at night. The past few years I have had a flu jab. Although this does seem to develop a few days of badly increased fatigue it is nothing compared to contracting real flu on top of M.E.

If you need to avoid the flu for a reason eg. looking after a family, work etc., then a flu jab seems to me the lesser of two evils.

January 8, 2014 at 7:13 am
(25) Elaine says:

Some people believe every myth, and will avoid any excuse to be vaccinated. They prefer to rely on the immunity of others for their protection. I wonder how their approach would change if nobody was immunized for anything, and they were offered the vaccine?
I am a teacher, and am surrounded every day by 30 little germ factories. In the past year, I have had to re-immunize myself against mumps and measles, due to outbreaks in my region. Many parents choose not to vaccinate their children for religious reasons, or misguided beliefs that these shots cause Autism. Guess what? When most babies and toddlers begin receiving vaccines is the age at which autism most often appears. It is also bizarre to continually hear people state that the flu vaccine gave them the flu. First of all, the shot contains a killed virus. Secondly, this sort of thinking is what produced erroneous information that has survived for centuries, such as, “dress up warmly, or you’ll get a cold.” or, “You got sick because you stayed out in the rain too long.” These are mere coincidences. It takes infection with an actual * virus* to contract colds! the flu, or Noroviruses (which people insist on calling “stomach flu.”
There is actually no such thing.
True influenza (flu for short) is largely a respiratory illness, although it can be accompanied by chills, fever, and severe body and headaches. There may be some nausea or vomiting (usually in children), but it does not produce the total assault on your gastrointestinal system that Noroviruses create. And by the way, contrary to popular belief, hand sanitizers are completely ineffective against Noroviruses, which are actually the most prevalent and contagious virus after the common cold. The only thing that will kill a Norovirus is a bleach solution.
I have obviously digressed a bit here, but people truly need to begin educating themselves.

January 13, 2014 at 3:50 am
(26) Amy says:

I appreciate all the comments. Though those folks who don’t suffer from ME don’t seem to understand and speak only to the general public. Of course vaccines are generally a good idea but every body is different and it’s not irresponsible not to get a shot, especially if you rarely leave the house. For those folks who have ME but are still somehow able to work, then they are in contact with people much more so a shot might be a good idea. Myself, I feel like my immune system is overactive. I haven’t had flu since 5 years before my ME that started in 2003 (no flu shots) and get a mild cold every year or so, not too bad. Most important though is that I only leave the house to be in public twice a week at most! Otherwise it’s just a walk around the block, no close contact with anyone, maybe maybe a quick trip to the pharmacy. Lots of handwashing afterwards, no touching my face, etc. I live alone and have few visitors.

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