Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Week 2024

In this blog, our ME/CFS team talks about Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). The team explains how ME can effect people who live with it and the support that is available. 

ME/CFS awareness week falls on 11-17 May 2024, so we thought it would be a good idea to highlight this often misunderstood long term health condition.

  • ME/CFS is a complex, chronic, fluctuating, neurological condition that effects the whole body, including the nervous, immune, and hormonal systems.
  • It is not a mental health condition but it often affects a person's mental health.
  • ME/CFS has been estimated to affect more than 250,000 people in England and Wales (0.4% of the population) and around 17 million people worldwide.
  • ME/CFS affects people of all ages and it affects more women than men.
  • ME/CFS is not a lifelong condition, and there is no clear cause. Triggers for onset may include: physiological stress (e.g viral infection), physical stress (e.g traffic accident or surgery), excessive or prolonged physical or mental demands and emotional stress, past or present emotional trauma.

The key symptoms that must be present for a diagnosis of ME/CFS are:

  1. Debilitating fatigue which is worsened by activity but is not caused by excessive cognitive, physical, emotional or social exertion and is not significantly relieved by rest.
  2. Post-exertional Malaise (PEM) - even minor physical or mental activity causes worsening symptoms which is often delayed, it is disproportionate to the activity and has a prolonged recovery time.
  3. Unrefreshed and/or disturbed sleep.
  4. Cognitive difficulties - for example concentration, short-term memory problems, difficulties with word finding or processing information.

For a diagnosis to be confirmed, these symptoms must not be explained by another condition (we request a number of blood/urine tests before accepting a referral). The person must have all the key symptoms for at least three months and these must impact on their ability to engage in everyday activities which is significantly reduced from pre-illness levels.

All referrals to the ME/CFS service must be completed by the person's GP. A copy of our referral form can be found on our website here

After a diagnosis of ME/CFS is confirmed, we then offer a range of treatment options including virtual groupwork programmes or individual sessions. We adopt a biopsychosocial approach - this means biological, psychological, and social factors are considered - based on acceptance and commitment therapy. The focus is on influencing rather than controlling or fixing symptoms as unfortunately there is no cure for this condition. 

However, it is important to note that many people do improve their quality of life and live well with this condition. If you have any further questions about our service please contact us on 0114 2263232

We are also having a stand at the Hallamshire hospital canteen on Monday 13 May, please come and talk to us if you are there on that day. The local ME/CFS Support group will also be joining us.

What our service users say:

‘I just felt very supported and that the service wanted me to feel better, it felt very genuine, that meant a lot. I felt understood’.

‘I understand more about ME/CFS - and how to live with it a bit easier.’

‘I learnt to relax through mindfulness techniques. I have also learnt about self care and how to say ‘no’. I now give myself permission to take mini breaks and rests throughout the day’

‘For the first time I felt really listened too, by someone who understands the condition, thank you’.

You can find more information about the ME/CFS service here.