Question

I have had ME for 5 years and haven’t managed to make any real improvement. I have been trying to find out if there is a private doctor or clinic somewhere in the world that treats people using antiviral medication because both my NHS GP and a doctor I have seen at an ME/CFS referral service say they are not willing to do so – even if I am prepared to take a risk. I know there was a clinic in America but this appears to have closed down. So where would you recommend I go to obtain antiviral treatment?

Answer

As you are probably already aware, viral infections are the commonest trigger factor for the development of ME/CFS and it appears that any type of viral infection can trigger ME/CFS. However, non-viral infections – e.g. giardia, Q fever, salmonella – can also occasionally trigger an ME/CFS-like illness, as can other types of immune system stressor such as immunisations.

There is also some sound research evidence to indicate that previous viral infections, which then remain dormant in the body, can be reactivated as a result of the immune-system disturbance that occurs in ME/CFS.

Over the years, a great deal of research has been carried out to try and establish whether there is any evidence to show that the various viral infections which trigger ME/CFS also go on to persist in the body and play a role in symptom causation – as they do in conditions linked to hepatitis C and HIV/AIDS. This research has failed to find any convincing evidence of persisting viral infection in people with ME/CFS – although there may be an exception in the case of post Covid/Long Covid ME/CFS where there is some preliminary evidence to indicate that small reservoirs of Covid-19 infection may persist in the gastrointestinal tract or in the brain.

There is therefore no sound research evidence to recommend the use of antiviral drug treatment for post-viral ME/CFS and I am not aware of any doctors who are prescribing antiviral treatment for people with ME/CFS in the UK.

Having said that, there are clinical trials in progress to assess the use of antiviral drug treatment (i.e. Paxlovid) in Long Covid but the results so far are conflicting and not very convincing. And there is certainly a case to investigate whether antiviral treatment could be useful in people who have both clinical and laboratory evidence of reactivation of viral infections such as Epstein Barr virus/EBV or human herpes viruses.

More Information:

• ME Association Booklet: Causation – What Causes ME/CFS?