Website survey

Website Survey: Do you know what might have triggered your ME/CFS? 

March 7, 2022

Recent talk about the role of Epstein Barr Virus (Glandular Fever) in Long Covid and Multiple Sclerosis (below), and the Covid pandemic itself, got me thinking about how infections are the most common trigger for Post-Viral Fatigue Syndrome (PVFS) and ME/CFS. 

Not everyone recovers their full health after an infection. Research that has followed people with many different infections has determined that perhaps around 5-10% do not recover in the expected timeframe and could have met the diagnostic criteria for ME/CFS at 6 months.  

It would seem a similar percentage can be applied to people who were infected with Covid-19, resulting in the 1.3 million people in the UK self-reporting Long Covid symptoms more than 4 weeks after the initial infection. Research has also determined the risk of Long Covid is reduced if both vaccinations were received prior to infection. But we’re hearing that an increasing number of people who had Long Covid symptoms are now being diagnosed with ME/CFS 3 months or more after the initial infection. 

I thought it would be helpful to revisit the topic of what triggers ME/CFS. While the most common trigger is believed to be an infection, and some people were told what that infection was when they first became ill, not everyone will have had a confirmatory test, and there might be other factors involved in the development of ME/CFS. 

Survey Results

What do you believe is primarily responsible for triggering your ME/CFS?

  • Bacterial infection4.95%
  • Genetic susceptibility4.37%
  • Hormonal imbalance1.66%
  • Mental health2.61%
  • Parasitic infection0.43%
  • Pregnancy0.62%
  • Stress11.56%
  • Surgery2.28%
  • Toxin exposure (pesticides etc.)1.54%
  • Trauma (childhood trauma etc.)4.74%
  • Vaccination (e.g., Hepatitis B)15.19%
  • Viral infection20.48%
  • It was something else entirely1.69%
  • I don’t know what might have been the trigger4.06%
  • Coronaviruses (e.g., Covid-19, SARS or MERS)1.17%
  • Dengue Fever0.06%
  • Ebola virus0%
  • Enterovirus (e.g., coxsackie B)0.83%
  • Epstein Barr Virus (e.g., mono, or glandular fever)11.62%
  • Giardia (parasite)0.09%
  • Hepatitis A or B virus0.09%
  • Human herpes virus (cytomegalovirus or herpes zoster)1.08%
  • Human herpes 6 Virus (HHV6)0.34%
  • Herpes simplex virus 1 (HSV1)0.62%
  • Human Parvovirus B190.22%
  • Influenza virus A or B (The ‘Flu’)2.95%
  • Meningitis (viral or bacterial)0.77%
  • Pneumonia (streptococcus pneumoniae) (bacterial)0.49%
  • Q Fever (Coxiella burnetii) (bacterial)0.03%
  • Rhinoviruses (the ‘common cold’ viruses)0.46%
  • Ross River Virus0%
  • The infection is not listed above3.01%

Thank you.

Additional Information: Epstein Barr Virus

There have been some interesting developments regarding Epstein Barr Virus (EBV) – Human Herpesvirus 4 – in recent weeks. It is colloquially referred to as Glandular Fever or the ‘kissing disease’ (infectious mononucleosis or mono) and is one of the more recognised triggers to Post-Viral Fatigue Syndrome and ME/CFS. 
EBV replicates in the epithelial cells of the tonsils and is secreted in saliva. It is an extremely common infection, with 95% of the world’s population infected by their 40s. Once infected, you carry the virus – usually in a dormant state – for the rest of your life. 
Sometimes, however, the virus may reactivate. Reactivation does not always cause symptoms, but people with weakened immune systems – including perhaps certain people with ME/CFS – are more likely to develop symptoms similar to the original infection. Other factors suspected of reactivating the virus are other infections, stress, taking immunosuppressants, and hormonal changes such as menopause. 
Reactivated EBV has now been recognised as one of four risk factors for Long Covid, and the virus has recently been revealed as a leading cause of Multiple Sclerosis (here and here). It has been associated with several other autoimmune disorders and implicated in the development of several cancers, including Burkitt and Hodgkin’s lymphomas. 
Moderna has now embarked on the first phase of a clinical trial – The Eclipse Trial – that aims to develop an effective vaccine to EBV, and both Dr Shepherd (ME Association) and Dr Harper (Cambridge ME Support), welcomed the news.  

This renewed focus on EBV might help determine how it triggers PVFS/ME/CFS and if the reactivated virus has a role to play in perpetuating the symptoms we associate with this disease. Hopefully, a successful vaccine can remove the risk for future generations – but it's early days yet. 

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