ME (CFIDS): A Vaccination Link?

By Jane Affleck

Can a vaccination precipitate Myalgic Encephalomyelitis [CFIDS in the U.S.]? When I became ill the day after a flu jab 2 1/2 years ago, I thought at first I had flu. However, the flu-like symptoms persisted for 3 months, and I was told I had "post viral syndrome." After a brief remission a viral infection precipitated a relapse into chronic ME.

I wondered whether my own experience was unusual. I advertised in Interaction 14 for others who felt their ME, or a relapse, had been precipitated by a vaccination to contact me.

I had 14 replies; in some cases the onset of symptoms was within days, or even hours of a vaccination.

Rosalie, a home help from Falmouth, became ill the day after having a flu jab in 1988. Until then, she had led a very active life, and enjoyed sports.

"The next day I felt terrible, as if I'd got flu," she says. About three months later Rosalie was diagnosed as having ME by her GP. Blood tests were positive for both Coxsackie B and Epstein Barr virus.

Rosalie carried on working for about a year, trying to ignore it. "That's the sort of person I am," she says. "I found I was doing things for people of about 80, and they could do it better than I could. I was determined I wasn't going to be off sick. In the end, I could hardly walk, and when it got so bad I couldn't lift my head off the pillow one morning, I realised that perhaps I needed a week off. That was 5 years ago. I still feel just as ill as I did at the beginning, with mostly flu-like symptoms." Rosalie believes she has become more sensitive to certain drugs. "At a recent visit to the dentist, I was given a local anaesthetic to have a tooth out. I immediately started shaking, freezing and sweating. This wore off after a few minutes."

Hazel from Bristol was advised to have various vaccinations as a trainee nurse, and in August 1990 had a polio booster and the first hepatitis B vaccination (of a course of 3).

"After about 10 minutes I blacked out, and was unwell for 5 weeks," she remembers. "I had ME-like symptoms -- exhaustion, muscle fatigue, aches and pains, co-ordination and balance problems, and memory loss, but they were complicated by the fact that when I blacked out I banged my head and suffered concussion. My employers were not sympathetic."

After re-starting her course 2 months later, Hazel was encouraged to complete the course of hepatitis B vaccinations. "I was told that if I suffered any reaction to the second one they would let me off the third. I took advice from a GP, and was eventually persuaded to have it. I didn't pass out, but started feeling light-headed after a few hours. After 24 hours I developed balance problems, and soon all the symptoms I'd experienced after the first injection returned."

Hazel has since had the diagnosis of ME confirmed, but after more than 3 years is still unable to do any work, and reports no overall improvement.

The problem faced by health workers who have had hepatitis B vaccinations was raised by other respondents.

Until now, it has been voluntary for health care workers to have a course of hepatitis B vaccinations, although it is recommended that they do so for their own safety.

For some workers this could change with the introduction of new health service guidelines, "Protecting Health Care Workers and Patients from Hepatitis B", which come into force for most health care workers in 1995.

They state that all health care workers who perform "exposure prone procedures" should be immunised against hepatitis B, and their response to the vaccine subsequently checked.

The purpose is both to protect health care workers who may be at risk of acquiring hepatitis B from a patient, and to protect patients against the risk of acquiring hepatitis B from an infected health worker.

Strictly interpreted, it should not be compulsory for most GPs and nurses to be vaccinated, but under the guidelines, non-immunised staff would not be permitted to do certain "exposure prone procedures." These are defined as where there is a risk that injury to the worker may result in the exposure of the patient's open tissues to the blood of the worker. As it is impossible to predict when some of these procedures may need to be carried out, it is possible that staff may be requested to have a course o It remains to be seen how these guidelines will be implemented by the individual Health Authorities, Trusts and FHSAs, and those workers concerned about the implications for themselves could initially consult their Occupational Health Department or FHSA.

The guidelines have caused concern to a West Midlands GP, who prefers not to be identified. He initially developed ME, which lasted 2 years, after an attack of hepatitis.

"After the ME, I waited until I had been 100% fit for about a year before starting the hepatitis B course, as in my job I am at risk," he says. "Four days after the first injection all the symptoms returned. The vaccination appeared to bring about a complete relapse. I didn't have any time off to begin with, and struggled on for about 18 months, but in the end I had to take a month off, and after that things began to improve."

Three years after the vaccination, the GP believes that he has almost recovered from ME, but is concerned that he may be requested to complete a course of hepatitis B vaccinations by next year.

He says "I have no intention of having a further hepatitis B vaccination and going through another 3 years of that. I've had it twice already."

He believes that the risk of a GP giving hepatitis B to a patient is very remote, and is prepared to run the risk, which he believes is small, of acquiring it from a patient.

Dr. Charles Shepherd, medical adviser to the ME Association, is convinced of the connection between vaccinations and ME. "I consider that in a small minority of cases a vaccination can be a triggering factor, as can viral infections and possibly some neurotoxins," he says. He believes a vaccination alone can precipitate the illness. "A vaccination mimics the effects of a viral infection, so it is not surprising that it can have the same effect. It is stress on the immune system."

From personal experience with patients, he believes tetanus, typhoid and possibly hepatitis B are particularly implicated. "There may be a particular problem with hepatitis B. Many health workers are under enormous pressure to have it. Although anyone who has contact with blood products would be foolish not to have it, I would advise people with ME, or who have recently recovered, to be extremely cautious about having hepatitis B."

Dr. Shepherd has been concerned by cases where people have been given hepatitis B soon after having glandular fever. "Vaccinations shouldn't be given when people are recovering from an infective episode."

Dr. Shepherd stresses that he is not anti-vaccination. "However, there appears to be a small but significant link, which needs to be looked at."

He is also concerned that adverse reactions are not being reported to the Committee on Safety of Medicines. "These sort of reactions should be going down on yellow cards and being sent in by GPs, and this is not happening."

Dr. Elizabeth Dowsett, Honorary Consultant Microbiologist to the Basildon and Thurrock NHS Health Trust, and President of the ME Association, agrees that an immunisation can precipitate a relapse.

"Your first attack can be after a vaccine, but it's not the vaccine that causes it. You have got to have the causal agent of ME in you, an enterovirus. In my experience, any type of vaccine can cause this problem; anything that knocks or disturbs your immune system even temporarily can cause a relapse; any trauma such as an infection or immunisation, an accident or certain drugs. Also physical or mental over-exertion; cold or malnutrition, or any chemical substance active in the brain, such as alcohol."

Dr. Dowsett advises extreme caution to ME sufferers who may be considering an immunisation for any reason. "Any immunisation has to be considered very carefully in ME. In fact, I would advise no immunisations at all unless it is absolutely necessary and you are in the best possible health. However, I would make an exception for polio if you are in contact with young children who have recently been immunised against polio, because of the small risk of contracting paralytic polio after exposure."

Dr. Dowsett says people with ME should take advice before any immunisation. "For some people it may be safer to alter a holiday destination or change job rather than have repeated immunisations."

She is particularly concerned about the position of health workers and the hepatitis B vaccine. "Many health care workers have ME, it is one of the highest categories," she says. "We are already discussing the matter with the Occupational Health Service, and it should be taken up with the Dept of Health."

"First of all it may be possible to postpone it - although you never know at what point it would be safe. Secondly, many health workers may not actually need it. For example, GPs have been pressurised to have the hepatitis B vaccine, but don't actually need it."

Dr. Dowsett believes the relatively high rate of ME among teachers is primarily explained by their greater exposure to childhood infections, particularly strains of enterovirus. "These can be spread by the respiratory route - coughing and sneezing - and younger, primary school children tend to be more infectious. Immunisation of teachers may be a secondary factor."

Dr. Dowsett also included a general anaesthetic as one of many possible causes of a relapse.

Doris Jones has conducted a study of ME for her MSc thesis at the University of East London. Her research suggests that a vaccination can trigger the illness, or precipitate a relapse.

"About 13% of 225 subjects had been vaccinated in the month before ME onset," she says. She found certain types of vaccine more frequently associated with ME onset, particularly tetanus, and, in younger people, BCG.

Although a prior viral or bacterial infection was normally involved, other factors, or combinations of factors, were often implicated. These included the frequent use of antibiotics for recurring infections, stress, and exposure to toxic chemical or environmental pollutants.

She agrees that being vaccinated before fully recovering from a viral or other infection may increase the risk of developing a post viral illness or ME. "My research suggests that there could be an interaction between a viral or other infection and a vaccination. This can occur if someone is vaccinated when they either have a subclinical infection, or are incubating an infection they are not aware of."

"Occasionally it is possible that a vaccination alone can precipitate ME, but it depends on a number of things. Also, certain people may be more at risk of having an adverse reaction, including those who have had a previous reaction to a vaccine, and people with allergies or a suppressed immune system."

In conclusion, the evidence suggests that any vaccine may precipitate ME or a relapse, particularly if other factors are present, such as a viral infection, around the time of the vaccination.

People who have ME, or have recently recovered, should be cautious about having any vaccine because of the possibility of a relapse.

Health workers face a particular problem, because they are encouraged to have hepatitis B jabs for their own safety, and the new guidelines will mean certain categories of workers may be required to complete a course of vaccinations.

A vaccine is only one of many factors which may contribute to the development ME, and it would be difficult to prove in any particular case how great a role a vaccination played, if any. However, there is sufficient evidence to suggest that the issue deserves more publicity and research, and it is hoped that this article may give rise to further debate on the subject.

If your CFIDS or ME started after receiving a flu shot or vaccination of some other sort, please contact Jane Affleck at and share your experience. We can't count on the medical establishment to make this possible vaccination/CFIDS link, so we need to track down the information ourselves.

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