ME Association Guide to ME/CFS Symptom Management – Part Three | 17 July 2017

July 17, 2017


This is the third and final part in our short series on symptom management. Part 1 of this guide covered symptoms A to F, while Part 2 covered symptoms H to P. The complete guide has also be reflected in a newly updated leaflet available from our online shop.

The medical information contained in these blogs is not intended to be a substitute for medical advice or treatment from your own doctor. We recommend that you should always consult your doctor or dentist about any specific medical problem or approach to treatment. And we suggest that any medical information provided by the ME Association is, where appropriate, shown to and discussed with your own doctor or dentist at the next available opportunity.

The 2017 edition of ‘ME/CFS An Exploration of the Key Clinical Issues’ remains our preeminent guide to all aspects of this disease including symptom management, and we are happy to send a free copy to your nominated GP or consultant.

A further source of useful information on symptom relief can be found in the 2010 ME Association ‘Managing My M.E’ report which contains feedback from over 4,000 people on treatments that were found useful, and those that were not.

Sensory symptoms

People with ME/CFS may experience a variety of sensory symptoms.

Dislike of bright lights (photophobia) and loud noise (hyperacusis) have already been covered. Sensory disturbances can also be felt in the skin as patches of numbness, increased sensitivity to touch or pain, or abnormal sensations such as ‘pins and needles’.

Once again, this is a symptom that needs to be discussed with your doctor because conditions such as diabetes and vitamin B12 deficiency/pernicious anaemia can cause this type of sensory disturbance in the nerves that feed information back to the brain.

When it comes to treatment, vitamins are often recommended but this approach is unlikely to help unless there is an obvious vitamin deficiency – which does not appear to be the case in ME/CFS. Some types of prescription-only medication (e.g. amitriptyline) may help if symptoms are more severe.

Sleep disturbance

In the very early stages of ME/CFS people often require excessive amounts of sleep – something known as hypersomnia. Later on, this type of sleep disturbance tends to be replaced with problems in getting off to sleep and frequent waking during the night. Sleep disturbance can also be accompanied by restless legs and jerking movements (= myoclonic jerks).

Whatever type of sleep disturbance occurs, people with ME/CFS nearly always report that they wake up feeling unrefreshed – even after what appears to have been a good night’s sleep. We all need at least five to six hours of uninterrupted sleep each night and there are several strategies that can help to achieve this.

A short course of rapid-acting sleeping tablets may be useful if getting off to sleep is a problem. A small dose of amitriptyline is an option when sleep is interrupted or erratic, especially if pain is also a problem.

Early morning wakening suggests that there may be a depressive component that probably needs treating with antidepressants. Simple self-help measures can also be very effective – these are summarised in the MEA information leaflet on sleep management.  Although not licensed for use in ME/CFS, melatonin (the drug that is used to reduce jet lag) could be considered where sleep disturbance is more severe or there is a reversal of normal sleeping and waking times.

There are specific sleep disorders like narcolepsy (sudden episodes of daytime sleepiness) and sleep apnoea (a breathing disorder) that can produce an ME/CFS-like illness. These are described in more detail in the clinical assessment section of the ME Association ‘Exploration of the Key Clinical Issues‘ book.

If there is any doubt over the diagnosis, or a sleep problem is more severe, you can ask your doctor for a referral to a hospital based sleep clinic.

  • The MEA has an information leaflet covering all aspects of sleep and sleep disturbance management in ME/CFS. This includes information on restless legs and melatonin (Circadin).

Sore throats and enlarged glands

Some people with ME/CFS have frequent sore throats and enlarged glands in the neck – possibly due to on-going immune system activation.

Acute sore throats are normally caused by viral infections – so antibiotics are not usually prescribed. Simple self-help approaches such as drinking plenty of warm fluids (eg a glycerine, honey and lemon mixture), sucking soft pastilles, and using a throat spray if this helps, are often the most effective forms of treatment.

When sore throats are more frequent and involve tonsillitis as well, removal of the tonsils may need to be considered. Any persistent swelling of a lymph gland, or group of lymph glands, needs to be checked by your doctor.

The three parts in this ME Association symptom management guide can be found at the following links:


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