This article was written by GP – Dr Nirja Joshi
Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) are names that refer to the same syndrome which encompasses many symptoms, most commonly characterised by extreme tiredness (1). This condition can affect anyone, including children, but is more common in women in their 20s to 40s (1).
There is no clear cause for ME, but some theories suggest it may be related to a past infection, such as glandular fever or pneumonia, immune system dysfunction , and also evidence there may be a genetic component (2).
What are the symptoms of ME? (1)
- Extreme tiredness [which can impact the ability to perform daily tasks]
- Fatigue which persists despite sleep or rest
- Prolonged recovery after physical exertion
- Difficulties with sleep
- Difficulties with memory and concentration
- Physical symptoms such as headaches, muscle aches, dizziness
What are the barriers faced by those with ME?
If you type “Chronic Fatigue Syndrome” into google, some of the top results have the headline “Is Chronic Fatigue Syndrome real?”. This demonstrates the stigma faced by sufferers of this condition as many are unaware of the disease, which is not helped by the lack of scientific understanding as to the exact cause or why fatigue lasts so long and also lack of understanding within the medical profession (2). Employment can be an issue for those with ME due to energy levels being low, which may mean that some patients may struggle with working patterns, and in turn could find themselves in financial difficulty (3). If you have ME and have questions about work, or returning to work, here is a useful guide.
What treatment is available?
There is no cure for ME, however, there are different areas which can be addressed to help to manage symptoms (1). The National Institute for Health and Care Excellence (NICE) says you should be offered a treatment plan tailored to your symptoms. Treatment options include; energy management (pacing), lifestyle advice including sleep and nutrition), ,cognitive behavioural therapy (CBT), and sometimes medication (such as painkillers and anti-depressants).
What is pacing? (4)
Pacing is a tool which can be used by those with ME. Pacing involves using your energy sparingly to allow your batteries to recharge. What this means is that rest and relaxation have to be scheduled into activity. Rest and relaxation has to involve fully relaxing your body and mind. This can be difficult for those who use active past times to relax.
When you set a pacing routine, it is important to establish your baseline activity level, and when you are able to increase your energy expenditure, not to increase it by more than 10% each time. Pacing has variable results, so it is important to note this will not work for everyone, but can be used for ‘energy management’. A more detailed guide on pacing can be found here.
The role of sleep (5)
In ME, it is common for patients to notice issues with their sleep. Sometimes hypersomnia (sleeping too much) or insomnia (inability to sleep). Hypersomnia is more common earlier in the illness. NICE guidelines recommend sleep hygiene measures such as:
- Creating a bed time routine
- Ensuring that you wind down before going to bed
- Avoiding the use of technology before trying to sleep
- Use relaxation exercises or a warm bath before bed
People with ME often comment that they feel “tired but wired”. This is due to the physical tiredness and exhaustion combined with the mind continuing to be fully alert.
Nutrition for ME (6)
Overall, the advice for people with ME is to maintain a balanced and nutritious diet. There is particular risk of low vitamin d due to people having less activity and people may be more housebound. In this case, it is important to take a vitamin d supplement. You can speak to your doctor about this. There is a lot of conflicting information about diets for ME/CFS online, as a trusted resource please see advice from the British Dietetic Association.
Medications for ME (7)
There are no specific ‘cures’ or treatments for ME. Some medications can be helpful to alleviate symptoms such as antidepressants which can be used to help with pain and mood and medications to help with sleep.
There are ongoing clinical trials for medications to help with ME, however, it is important to note that medications in trials generally require a lot of process before they can be given to the general public.
Where can you get help for ME?
In the first instance, it is important to speak to your GP. Your GP will be able to help and support you with symptom management. If you require help with regards to support groups or where to apply for financial help, a Social Prescriber is a member of some General Practice teams who could help with these types of issues. If you would like more information about ME specific to your age and symptoms Action for ME have contact details for support here.
- NHS. Myalgic Encephalopathy [Internet]. 2021 [cited 2022 Nov 10]. Available from: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
- Niloofar Afari,. Chronic Fatigue Syndrome: A Review. American Journal of Psychiatry [Internet]. 2003 Feb 1 [cited 2022 Nov 10]; Available from: https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.160.2.221
- Action for ME. ME and Work [Internet]. [cited 2022 Nov 11]. Available from: https://www.actionforme.org.uk/uploads/me-and-work.pdf
- Action for ME. Pacing and energy managment [Internet]. 2021 [cited 2022 Oct 11]. Available from: https://www.actionforme.org.uk/get-information/managing-your-symptoms/pacing-and-energy-management/
- Action for ME. Sleep and Rest [Internet]. 2021 [cited 2022 Nov 10]. Available from: https://www.actionforme.org.uk/get-information/managing-your-symptoms/sleep-and-rest/
- Action for ME. Diet and nutrition [Internet]. 2021 [cited 2022 Nov 10]. Available from: https://www.actionforme.org.uk/get-information/managing-your-symptoms/diet-and-nutrition/
- Action for ME. Medication for symptoms [Internet]. [cited 2022 Nov 10]. Available from: https://www.actionforme.org.uk/get-information/managing-your-symptoms/medication-for-symptoms/
Chronic Fatigue Syndrome was last modified: November 21st, 2022 by