ME/CFS/PVFS – Your Questions Answered

In this leaflet, we explain some of the terminology you are likely to encounter and help address some of the more commonly asked questions about ME/CFS, the likely course of the illness, about management, and the chance of recovery.

What do the terms mean?

Post-viral fatigue syndrome is what most people experience when an infection has passed but the symptoms and disability remains. It is the parent term used by the World Health Organisation and is often the precursor to M.E. or ME/CFS.

M.E. stands for myalgic encephalopathy or myalgic encephalomyelitis and are the names preferred by most expert clinicians, researchers, and patients. Myalgic Encephalopathy was proposed as a less contentious term because it provides a more accurate description of the abnormalities involving blood flow, brain chemicals and hormones that are known to be present.

Chronic Fatigue Syndrome, is not a name we support as it diminishes the extent of this condition and is rather like calling dementia, chronic forgetfulness syndrome. Unfortunately, many doctors in the UK still favour its use, although the compromise term, ME/CFS, is now more common and is likely to remain until we are better able to understand the pathology of this disease.

Topics discussed in this leaflet, include:

  • Who gets ME/CFS/PVFS?
  • How does ME/CFS start?
  • What marks ME/CFS out from other causes of chronic fatigue?
  • What are the other main symptoms of ME/CFS?
  • How common is depression in ME/CFS?
  • Is there a diagnostic test or cure for ME/CFS?
  • What are the chances of recovering?
  • How can recovery be helped?
  • Stabilising the illness
  • Maintaining recovery
  • If recovery slows or stops
  • Relapses
  • Medical management and complementary therapies
  • What about benefit entitlement?
  • Additional sources of information

Telephone Helpline

The ME Association telephone helpline – ME Connect – is available every day of the year, during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm. Please phone: 0344 576 5326 if you have any questions or would simply like to talk to someone who is there to listen.

Please note this leaflet is a download. You can read it on-screen and save to your computer, phone or other device and can attach it to any email you might need to send. But you will need access to a printer if you wish it printed.

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