ME/CFS/PVFS – Your Questions Answered

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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 M.E., the likely course of the illness, management, and the chances of recovery.

Description

M.E., CFS, and, PVFS – What’s the difference?

“M.E. stands for myalgic encephalopathy or myalgic encephalomyelitis and is the name preferred by most expert clinicians, researchers, and patients.

“While there is no argument about the use of the word ‘myalgic’ as a description of the muscle pain involved, ‘encephalomyelitis’ – meaning inflammation in the brain and spinal cord – causes problems in the absence of good quality research evidence to support its use.

“Encephalopathy was therefore 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 (CFS) is a name favoured by the medical profession because it makes no firm assumptions about cause. Two major criticisms of CFS as a name are that it fails to reflect the severity and extent of the illness, and is often used as a convenient label for anyone with unexplained fatigue.

“Post Viral Fatigue Syndrome (PVFS) was introduced in the 1980s as a description of an illness which can clearly be traced back to a viral infection and is still the parent term – listed in the neurology section – used by the World Health Organisation in the International Classification of Diseases.

“M.E., CFS, and PVFS, are terms recognised by the World Health Organisation, the National Institute of Health and Care Excellence (NICE), and by the NHS in its SNOMED CT clinical classification symptom.”

The leaflet features answers to the following:

  • 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

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 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.

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.