Free to Download: The A-Z Symptom Management in ME/CFS.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
For ME Awareness Week, we are talking about M.E. Symptoms, the extent that they affect people, and how they can best be managed.
We also hope that by sharing our blogs, graphics, posters and video, you can help us reach people outside of the patient community who might not yet have a diagnosis.
This 8-page leaflet provides a handy overview of all the key and other symptoms associated with the condition. We provide hints and tips about management and direct you to more detailed resources that can all be found in the website shop.
- The A-Z of Symptom Management is free to download until the end of May.
Key Symptoms of ME/CFS
- Post-exertional malaise,
- Activity-induced muscle fatigue,
- Cognitive dysfunction,
- Sleep problems,
- Ongoing flu-like symptoms incl. muscle aches, sore throats, and tender glands,
- Orthostatic intolerance.
Other common symptoms include:
- Pain – muscles, joints, and nerves,
- Problems with balance and temperature control,
- Gastro-intestinal symptoms,
- Sensitivity to light and sound,
- Alcohol intolerance,
- Headaches.
Introduction
With no effective drug treatment for the underlying causes of ME/CFS currently available, the medical management of this illness is very much aimed at trying to relieve the various disabling symptoms.
This can involve the use of prescription-only and over-the-counter drugs, self-help strategies, and alternative and complementary therapies (ACMs) – sometimes involving all three.
The main purpose of this guidance is to summarise how these three approaches can be used to help manage some of the most common symptoms.
It also includes symptoms that are not already covered in our symptom specific information leaflets.
In the case of children and adolescents the symptom profile can be slightly different to adults in that gastrointestinal symptoms (i.e. nausea, abdominal pain, changes in appetite leading to weight loss or weight gain) and headaches are more common.
However, the basic principles of management are the same – although drug treatment will involve lower doses and some of the drugs that are used in adults may not be suitable or licensed for use in this age group.
People with severe ME/CFS often have more significant problems with cognitive dysfunction, pain, light, and noise sensitivity. They may also have additional neurological symptoms including atypical seizures along with speech and swallowing problems.
ME/CFS can involve a wide range of symptoms. When a new symptom develops, don’t assume that it’s ‘just another part of the illness’ – check with your doctor as there may be another explanation.
The same advice applies when an existing symptom is obviously getting worse, or changes in character, for no obvious reason.
Medications
When it comes to using prescription only drugs, people with ME/CFS are often very sensitive to certain types of medication – especially those that act on chemical transmitter systems in the brain.
It’s sensible to start with a low dose and gradually increase this over a period of time. If one drug isn’t helping after a reasonable trial period, it may be worth trying a similar type of medication before concluding that this approach isn’t going to help.
An additional and very useful source of information on symptom relief is our Management Report. This contains ‘patient evidence’ from over 4,000 people with ME/CFS and covers all three approaches to symptom management – along with information on which treatments help, and which ones do not.
The report can be downloaded free from the ME Association website. Paper copies can be ordered using our literature order form (once the lockdown has lifted and head office is open again).
Leaflet Extracts:
Cognitive dysfunction (‘brain fog’)
Cognitive dysfunction refers to problems with short-term ‘working’ memory, concentration, processing new information, retrieving information and attention span. For some people, cognitive dysfunction is one of the most disabling aspects of having ME/CFS.
Various explanations have been put forward as to why cognitive dysfunction occurs in ME/CFS. These include changes in the level of chemical transmitters that help to pass messages around the brain and alterations in blood flow to key parts of the brain.
Symptoms such as sleep disturbance and depression, where these occur, will also have a significant adverse effect on normal mental functioning and make cognitive dysfunction worse.
Equally, a number of other medical conditions that cause disabling fatigue (low thyroid gland function, for example) often cause cognitive dysfunction – so these need to be checked if cognitive dysfunction is deteriorating.
Cognitive dysfunction can improve over time as it does not seem to be caused by permanent damage to brain cells. A simple way to understand what may be going wrong is to compare the brain in someone with ME/CFS to a computer where the circuits are misbehaving and don’t work properly all the time.
Unfortunately, none of the drugs that affect brain chemical transmitters or increase blood flow to the brain – sometimes prescribed for other conditions where there are significant problems with mental functioning – appear to be of any value in treating cognitive dysfunction in ME/CFS.
One possible exception is the use of antidepressants, which may help where a depressive component is clearly contributing to problems with memory and concentration.
In relation to supplements there is a fatty acid supplement known as eicosapentaenoic acid (EPA) where some positive findings have been reported in ME/CFS from a very small preliminary study.
Cold hands and feet
Problems with temperature control are an extremely common part of ME/CFS. At one end of the spectrum this can involve an inability to tolerate high temperatures and hot environments. At the other end is an increased sensitivity to low temperatures – something that often produces cold hands and feet.
One possible explanation for poor temperature control is malfunction of a small thermostat-like gland in the brain called the hypothalamus. Reduced activity levels can also play a role in causing these type of circulation problems.
In the case of cold hands and feet, a part of the nervous system that controls the size of tiny blood vessels (the autonomic nervous system) also becomes super-sensitive to changes in temperature and causes over-constriction when the temperature falls.
There are various self- help and practical measures that can help here, such as warming pads and the use of thermal clothing. If symptoms become more persistent or unpleasant, or there are symptoms such as marked redness or swelling, check with your doctor because there are a number of drug treatments that help to open up the tiny blood vessels that may be worth trying.
- The MEA has a leaflet that provides detailed information on all aspects of the management of cold hands and feet
- The Raynaud’s and Scleroderma Association is a useful source of practical advice on management: Website: www.raynauds.org.uk Tel: 01270 872776.
Fatigue, activity management and post-exertional malaise
Activity-induced fatigue and postexertional malaise/symptom exacerbation are the cardinal symptoms of ME/CFS.
Post-exertional malaise and symptom exacerbation, whereby undertaking activity beyond one’s physical or mental limitations leads to an exacerbation of ME/CFS symptoms, is a highly characteristic and diagnostic feature.
The best way of preventing post-exertional malaise is through careful pacing of physical, mental and emotional activities. The basics of pacing include:
- Aiming to establish a baseline of activities – physical, mental, and emotional – that you are comfortable with and can cope with for most of the time
- Carrying out activities in small ‘bite size’ amounts with periods of rest or relaxation in between
- Alternating physical and mental activities throughout the day
- Gradually increasing activities in a very flexible manner when you feel capable of doing so
- Decreasing activity levels when symptom exacerbation or postexertional malaise is occurring
The cause of fatigue in ME/CFS remains uncertain and probably involves complex factors affecting both the brain and muscle. Unfortunately, we don’t yet have any drug treatment that has been shown to be effective in reducing fatigue levels, although a number of possible approaches are now being assessed.
The most important way of dealing with fatigue is taking the right approach to all aspects of energy management – in other words striking the right balance between activity and rest through the use of pacing.
The ME Association does not recommend the use of graded exercise therapy (GET) – which is based on the idea that symptoms and reduced mobility are largely maintained by inactivity and deconditioning.
Some people claim that supplements which are claimed to increase muscle energy performance, such as carnitine, NADH/Enada and Co-enzyme Q10 are helpful. They may be worth a try if you can afford the expense but there is no sound evidence of benefit from clinical trials.
Co-enzyme Q10
CoQ10 is known as a coenzyme because it helps other enzymes in the body to carry out their normal functions.
In relation to muscle fatigue, it is involved in energy producing chemical pathways inside the mitochondria – parts of the cell where energy in the form of a chemical called ATP is produced. It also has antioxidant activity.
So, there are some theoretical reasons why CoQ10 might be helpful in ME/CFS. However, despite all the claims being made for CoQ10, there is very little scientific evidence linking deficiency with disease.
Neither is there much evidence of benefit in diseases where it is sometimes recommended such as heart failure, mitochondrial muscle diseases, and Parkinson’s disease (where decreased levels have been found in the spinal fluid). The same situation currently applies to ME/CFS.
- We have a single leaflet covering energy and activity management and pacing. There are also separate leaflets on the Management of Relapses, Exacerbations and Flare-Ups, the special nature of fatigue in ME/CFS and the use of muscle energy supplements.
- Patient evidence on the use of pacing and graded exercise therapy can be found in our report on the safety and efficacy of these approaches to management. This report also carries an MEA position statement on the use of pacing and GET. Report Summary.
Flu-like symptoms
Most people with ME/CFS will continue to feel as though they have an on-going infection and experience flu-like feelings – which can include sore throats, tender glands, and temperature control problems.
The reason why this occurs remains uncertain. But it may be due to changes in immune system function – including what is called ‘low level immune system activation’ when the body still thinks it is fighting an infection and produces chemicals called cytokines.
These are responsible for the flu-like symptoms that accompany any infection. Unfortunately, there is no form of drug treatment that has been found to be effective at dampening down these symptoms in ME/CFS.
Management here has to be based on carefully pacing your activities and reducing activity levels when flu-like symptoms are prominent.
Sleep disturbance
In the very early stages of ME/CFS people often require excessive amounts of sleep – this is 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.
A minority of people develop a reversal of normal sleep patterns – being awake at night and asleep during the day. 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 a rapid-acting non-benzodiazepine sleeping tablet (e.g. zopiclone) 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.
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 a number of specific sleep disorders like narcolepsy (sudden episodes of daytime sleepiness) and sleep apnoea (an obstructive breathing disorder) that can produce an ME/CFS-like illness.
These are described in more detail in the clinical assessment section of the MEA clinical and research guide.
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.
Self-help measures are a very important form of management for most types of sleep disturbance. These include:
- Avoiding caffeine containing stimulants in the evening,
- Avoiding heavy meals in the mid to late evening,
- Having a warm bath an hour or so before going to bed,
- Making sure that the bedroom is relaxing and not too hot or cold,
- Trying to establish a regular routine for waking up, getting up, and going to bed at roughly the same times.
These self-help strategies are summarised in more detail in our leaflet on sleep management, which also covers restless legs syndrome and melatonin.
- The A-Z of Symptom Management is free to download until the end of May.
ME Awareness Week Monday 11th – Sunday 17th May 2020
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Check out the MEA Media Toolkit for video, free factsheets, posters and graphics.
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The post ME Awareness: Free Leaflet – A-Z Symptom Management by Dr Charles Shepherd | 14 May 2020 appeared first on ME Association.
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