Medication for individual symptoms
While there is no single pharmacological cure for M.E., despite the efforts of dedicated scientists and clinicians around the world, there are a number of medications that your doctor can prescribe that may help with individual symptoms. In some cases, this may include those licensed primarily for other health conditions.
Different drugs have different effects on symptoms and they also differ in their side effects. If you find that a drug is ineffective or cannot be tolerated, it may be worth systematically trying others, as directed by your GP. People with M.E. often have a limited tolerance to drugs, so starting lower doses than usual may be needed, then slowly increasing if appropriate, and only with support from your health professional, who should also be aware of potential issues around polypharmacy.
NICE guideline advice
The 2021 NICE guideline for M.E. advises the following regarding medication:
"1.12.16 Offer people with ME/CFS a medication review in line with the NICE guidelines on medicines adherence and medicines optimisation.
"1.12.17 Take into account when prescribing that people with ME/CFS may be more intolerant of drug treatment. Consider:
- starting medicines at a lower dose than in usual clinical practice
- gradually increasing the dose if the medicine is tolerated.
"1.12.18 Drug treatment for the symptoms associated with ME/CFS for children and young people should only be started under guidance or supervision from a medical professional trained and experienced in paediatric prescribing."
Did you know that if you take prescription medication regularly, you can ask for a review at your local pharmacy? Find out more about the potential benefits of this in our medication review article by pharmacist and Action for M.E. volunteer Emily Beardall.
A word about anti-depressants
Some tricyclic antidepressants are prescribed in low-doses to help with sleep (see below). It has also become increasingly recognised that they can help in the management of chronic pain.
Using antidepressants does NOT mean that M.E. is the same as depression, or that it is a mental illness. The doses used to help with sleep and pain are much lower than the doses used to help manage depression.
If you are experiencing depression as a consequence of coping with M.E., or other conditions, then please consult a health professional about this.
Medication for pain
It can be challenging to tell the difference between what is muscle pain, pain from the joints or pain related to nerves. Often people can feel pain in their legs which is actually related to arthritis or the trapping of nerves in their back. So, sometimes it can take a bit of investigation by your GP in order to determine the site of origin of the pain, and how to treat it.
Action for M.E.’s previous Medical Advisor, Dr Gregor Purdie, says:
"It is central to the consultation that your GP gets the complete story of your symptoms. The first thing that I would ask would be for the patient to describe their pains in detail. A physical examination is also very important. Once the area afflicted by the pain has been identified, the GP should examine joints in the affected area. There are also simple blood tests that can aid diagnosis. A C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) are tests of inflammation in the body and are raised in conditions such as rheumatoid arthritis. A creatine kinase (CK) is a test of muscle pain and muscle inflammation. If there are neurological signs found on examination that require further investigation then referral to a neurologist would be appropriate. I always keep in my mind that it is important to consider all causes of the pain and not fall into the trap of ‘it’s just your M.E.’”
With regards to pain in the muscles, this is sometimes there at rest but can frequently occur after activity (ie. post-exertional malaise).
Pain when you wake from sleep is quite unusual and may be indicative of something like restless leg syndrome, which is a condition that seems to be more common in people with fatigue-associated conditions.
A variety of painkilling drugs act in different ways to control different types of pain. These include paracetamol, non-steroidal anti-inflammatory drugs (NSAIDs, such as ibuprofen), opiate based painkillers, tricyclic antidepressants and others.
Please note that not all these interventions are of proven benefit and some may have side effects. We advise that you consult a medically qualified practitioner before trying any new medications, or changing any dose of existing medication.
Our 2019 Big Survey of more than 4,000 people with M.E. found that 68% of people use medication for individual symptoms.
Medication for sleep
Medication should be treated to kick-start the process of improving sleep. Using medication long term can lead to dependency, though each individual is different, and you should always seek advice from a health professional if you have any concerns.
There are three main types of prescription medication for helping with sleep.
1. Hypnotics. These are the traditional sleeping tablets. The shorter-acting ones, such as Zopiclone, tend to be less addictive, but should still only be used in short courses (around two weeks) and beyond that, only used intermittently. They are helpful if you have difficulty getting off to sleep. All sedatives can impair concentration and some can lead to excessive sedation the following day.
2. Tricyclic antidepressants and Trazodone. Amitriptyline is the most often prescribed of these medications. That and Trazodone were developed many years ago as antidepressants; it was noted, however, that they also helped promote a better sleep pattern. Furthermore, it has become increasingly recognised that they can help in the management of chronic pain. As pain can be a major factor for people with M.E. in reducing quality of sleep, these medications may prove useful. Using antidepressants does NOT mean that M.E. is the same as depression, or that it is a mental illness. The doses used to help with sleep and pain are much lower than the doses used to help manage depression.
3. Melatonin. This is a naturally occurring hormone produced in the body. It is produced in the pineal gland, and its function is to regulate sleep. It is now available as a medication, and can be prescribed on the NHS (it is currently licenced for people over 55). Again, it is recommended that it be used short-term to help promote a better sleep pattern. Some people with M.E. have reported benefits from taking it. It has been noted, though, that it can adversely affect diseases of the immune system.
It’s important to start with the lowest possible dose and monitor effects on sleep and daytime tiredness before making any increase in the dose.
Medication for orthostatic intolerance
In the Christmas 2016 edition of our membership magazine, InterAction, our previous Medical Advisor, Prof Julia Newton, responded to a reader on the subject of orthostatic intolerance, which refers to the development of symptoms when upright that are relieved by lying down.
Prof Newton said:
"This is a really common sensation that people with M.E. will report. When I see somebody in the clinic who describes dizziness on standing up, or, at the very extreme end of things, dizziness followed by a blackout, it always makes me wonder whether they are experiencing either a drop in their blood pressure or an increase in their heart rate. If people are dropping their blood pressure when they stand up this is a condition called orthostatic hypotension; if they are increasing their heart rate then they may have a condition call postural tachycardia syndrome (POTS). Symptoms when standing up such as dizziness or light headedness are described as orthostatic intolerance (with orthostasis being the process of standing upright). POTS has been shown in studies from the UK and in Australia to be a condition found in up to one third of those with a diagnosis of M.E./CFS, if it is looked for.”
Orthostatic intolerance may be managed with medications that increase blood volume, inhibit acetylcholinesterase, or improve vasoconstriction.
The 2021 NICE guideline for M.E./CFS says:
- 1.12.9 Be aware that people with ME/CFS may experience orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).
- 1.12.10 Medicine for orthostatic intolerance in people with ME/CFS should only be prescribed or overseen by a healthcare professional with expertise in orthostatic intolerance.
- 1.12.11 Refer people with orthostatic intolerance to secondary care if their symptoms are severe or worsening, or there are concerns that another condition may be the cause.
Clinical trials for new treatments
Sometimes a small study will find that a particular medication seems to relieve the symptoms of M.E. Larger clinical trials, with many more people taking part, are then needed to confirm these findings.
What are clinical trials? They test whether particular treatments are safe on people, whether they work better than other treatments, or have any side effects. Often trials include a quality of life study which looks at the effect a treatment or procedure has on a person and their life. Clinical trials are not always about testing a new medication; for example, they might test whether a screening programme can detect a disease or condition.
Until a well-designed trial has been carried out we cannot know if a treatment is effective and safe. Not all trials will result in a new or better treatment. Sometimes results show the treatment being tested does not work, or has side effects worse than existing treatments. This is sometimes called a "negative" finding. A new treatment may drastically outperform the standard treatment with no, or limited, side effects, or it might cause serious health problems.
In these cases a trial might be stopped early if the results are so overwhelming that it would be unethical to continue.
Who pays for clinical trials? Trials are expensive to run, although the results can save money in the long run. It can take a long time to get enough people and enough data to draw reliable conclusions. As well as the research staff needed to run the trial, collect the data and analyse the results, the treatments or procedures and associated testing or hospital visits needs to be paid for. People are often paid to take part in the research and there are administrative costs for computers, software, paperwork, data collections and production of the results. Funding for trials in the UK can come from a range of sources, including
- the NHS and the National Institute for Health Research
- government-funded research councils such as the Medical Research Council
- major research charities such as Cancer Research UK
- commercial companies Innovation and progress is not possible without funding, and it can take many years between funding and outcomes.
Why do trials take so long to produce results? The length of a trial can depend on how long it takes to find enough people to take part and how long the treatment lasts. The timing of the results is also important – often it can take years to see clear differences in the number of people who are affected one way or another. Side effects and quality of life impacts may also need to be followed up over long periods.
You can watch people share their experience of taking part in a clinical trial on the Healthtalk website.
