Treating Chronic Fatigue Syndrome (ME/CFS): Vaccinations

Vaccinations and Chronic Fatigue SyndromeIntroduction  - Whether to get vaccinated against the latest bug is a to difficult issue for many ME/CFS patients. Some patients report their illness was triggered by vaccination. Others have experienced symptom flares after vaccinations. Others are leery of injecting any viral element into their already fluey state. A Canadian study did not suggest that hepatitis B vaccinations were a cause of concern for chronic fatigue syndrome patients. That study was, however, criticized on methodological grounds. The CFIDS Association of America is applying for a grant to determine if some chronic fatigue syndrome patients develop an autoimmune response to prior vaccinations.

Most ME/CFS physicians do not appear to support vaccinations unless a patient is at high risk of developing a severe illness from the flu (eg has heart disease, bronchitis, asthma). Some physicians believe many ME/CFS patients immune system's are upregulated enough that they are at low risk for catching the flu. Others note evidence that vaccinations may not be as effective in ME/CFS. It's clear that some patients, perhaps up to 60% according to Dr. Shepherd, experienced symptom flares after vaccinations.  Other patients can tolerate them with little effect. Most of the evidence on one side or the other is anecdotal.

A consortium of Environmental Illness physicians in Germany recommended against EI patients getting vaccinated.

If you do choose to get a vaccination getting it in the form of a shot ( which does not contain live viruses) may be preferable to getting it in the form of a mist (which does contain live attenuated viruses)

To vaccinate or not vaccinate is an individual decision best made in conference with a knowledgeable chronic fatigue syndrome practitioner.

Dig Deeper! for best single resource on vaccinations check out  AFME's  2006 report "To Jab or Not to Jab".

Below are ME/CFS physicians takes on the vaccination question.

Dr. Charles Lapp

Many patients have been alarmed by reports of the seriousness and infectivity of this new flu, and have asked if vaccination is advisable. Our usual recommendations on influenza vaccinations are that:

  • That they have been known to trigger flares of CFS/ME/FM
  • That many PWCs to do not respond to vaccination anyway
  • And that viral infections are uncommon in most PWCs due to upregulation of the immune system.

Therefore, we would recommend seasonal flu vaccination only if you have tolerated these well in the past and if you are at high risk

 Charles Shepherd, Medical Director of ME Association (UK)

Dr. Charles Shepherd states that he has anecdotal reports on several hundred cases in which vaccinations either triggered chronic fatigue syndrome or exacerbated it.

".. anecdotal reports suggest that [an adverse reaction or relapse following use of the influenza vaccine] 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."

Influenza.If a patient has any medical condition that could be severely affected by an attack of the flu, such as heart disease, asthma, or bronchitis, influenza vaccine should certainly be considered.

My own data indicates approximately 60% of CFS patients experience some form of exacerbation in  their fatigue and flulike symptoms (sometimes quite marked) following an influenza vaccine."

Dr. Paul Cheney

"There is no way to generalize across the entire range. If these patients are working or marginally sick, exposed to the general population, I tend to immunize...If they are extremely sick, [with] very active immune systems [and] are not going into the public arena much, I think I tend to not immunize because of the fear I'm just going to make them worse." (1999)

Dr. Nancy Klimas

"The flu shot is an injection. The treatment for the flu this season that covers all of the expected bugs is the nasal spray zanamivir. Tamiflu (tablets) is another option it does cover H1N1. 

The CDC recommends doctors with at risk patients give the patients a prescription to fill if the need arises. The need arises if you have a flu like illness WITH FEVER. Thirty percent of those of us over 30 have some level of immunity from prior exposures. Younger people are having a rough time with this flu.

The seasonal flu vaccine, available now covers the usual flus, but the pandemic H1H1 will not be covered and requires the new vaccine, due out in November. It looks like a single shot will do, not the two shots they had been thinking would be necessary. 

I know a lot of my patients are nervous about the new vaccine, and if you have severe relapses after vaccines and don't want another, then you should get a prescription from your doctor to take should you become ill. 

The CDC is not recommending widespread prophylaxis (that is taking the medicine at half the treatment dose), but if someone is sick in your house you certainly should."

Dr. David Bell

Dr. Bell noted that "There is no doubt that inoculations can set off the process. These shots are designed to stimulate the immune system in a way that can prevent a future infection with something like a strain of the flu virus. Therefore it is just like getting that particular flu virus strain and thus can set off the process."

Q: Should we get the flu shot?

"Everyone you ask this question to will give you a different answer. The flu shot will act as an antigenic stimulus and thus can worsen symptoms. But getting the flu would be worse. In general I avoid it in my more seriously ill patients. "(Nov. 2, 2007)

Dig Deeper! for best single resource on vaccinations check out  AFME's  2006 report "To Jab or Not to Jab".

PREVENTION

Rich Carson - the creator of Prohealth recommends the following means to help prevent getting the flu in the first place

Whether or not you decide to get a flu shot, it’s especially important this time of year to take extra precautions to prevent not only the flu, but also colds and other bugs. The recommendations for preventing the flu are the same as for preventing a cold:

  1. Wash your hands frequently. The first thing you should do when you arrive home is wash your hands with soap and water, particularly if you have been out in public. This should become your ritual, and I think it is the single most important thing patients can do to improve their health. Ask family members and guests to do the same, and they will respect you for it. Your house is your sanctuary, and you need to keep it virus free.
  2. Cold and flu viruses enter your body through your eyes, nose and mouth, so never touch your hands to your face - unless they’re sparkling clean.
  3. Flu viruses make their way into your house by way of items that you have touched while you were out in public, including your cell phone and keys. Prevent this from happening by wiping these items down with a sanitizing hand wipe, such as those made by CloroxR and LysolR. It takes only 30 seconds, and this ounce of prevention is worth many pounds of cure.
  4. Central heating dries you out and makes you more susceptible to cold and flu viruses, so it’s important to drink lots of water and get plenty of fresh air to keep your body hydrated.

Treating The Flu

Dr Lapp recommends two antiviral medications (Tamiflu, Relenza).