The ME Association is continually updating its website information and guidance for people with ME/CFS in relation to swine flu, Tamiflu and swine flu vaccination.
We are also asking for feedback from people who have been given swine flu vaccine. Feedback so far has been limited due to the fact that some doctors do not accept that ME/CFS could be a high priority illness for vaccination purposes. Consequently, most of the feedback has been from people who have had the vaccine for employment purposes (eg health service staff) or they have another illness that is clearly in the NHS high priority list (eg asthma).
We have had 38 replies so far.
Overall, most people have reported one or more ‘minor problems' with the vaccine.
Four people (one with severe ME) have had no problems at all.
One or more ‘minor' adverse reactions, in particular local soreness and sometimes swelling at the injection site, have been frequently reported. Other ‘minor' adverse reactions include feeling feverish, headaches, sore throat, nausea and wanting to sleep more than normal. A significant number have also had what appears to be a temporary exacerbation of their ME/CFS fatigue +/- joint or muscle pain.
However, six people (6/38) have reported a more prolonged and serious exacerbation/relapse of their ME/CFS. In one case the vaccination has been linked to an attack of shingles, which resulted in hospitalisation.
Of particular concern is a single report of a previously fit adolescent who has developed a number of ME/CFS type symptoms four days after his vaccination. Whilst this link to the vaccination may be pure co-incidence, we do know that ME/CFS can occasionally be triggered by vaccinations, including the normal flu vaccine. This case is being reported to the Medicines and Healthcare products Regulatory Authority (MHRA) by The MEA on the Yellow Card reporting system. And it is very important to make sure that doctors in the UK report all suspected adverse events to swine flu vaccination to the MHRA.
One person has reported an improvement in their ME/CFS symptoms – something that is occasionally reported with ordinary flu vaccine and some other vaccinations.
The MEA will continue to monitor the response of people with ME/CFS to swine flu vaccine.
If you have been vaccinated against swine flu, please let us know what happened afterwards and (if possible) the brand of vaccine used. Please use this email.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
9 December 2009