Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
What is ME/CFS?
ME/CFS is a long term neuroimmune disorder that can have a wide range of symptoms and affect many different systems in the body. The primary symptoms are significant fatigue that interferes with basic day-to-day activities, that does not improve with rest, and worsens significantly following activity. There are however a wide range of symptoms that can occur with ME/CFS and not everyone will have the same type or severity of symptoms.
What are the symptoms of ME/CFS?
The symptoms of ME/CFS are similar to many other illnesses, and there is no specific test to confirm that you have ME/CFS. This can make diagnosing this condition difficult - the current clinical guidelines require that you have the following three symptoms for a diagnosis:
Significant reduction in the ability to perform activities that were usual before symptoms started. This drop in activity level occurs with severe fatigue that is not relieved by rest, and must last 6 months or more.
Worsening of symptoms after physical or mental activity that was usual before the illness started - this is known as “post exertional malaise” or PEM. It can take anywhere from days to weeks to rebound from a crash.
Sleep problems - people with ME/CFS do not usually feel better or less tired even after sleeping for an entire night or resting from activity. Problems with falling asleep or staying asleep can also be common.
A diagnosis also requires at least one of the following secondary symptoms:
Problems with thinking and memory, brain fog
AND/OR
Worsening of symptoms while sitting or standing upright - known as “orthostatic intolerance”
Other symptoms that might occur with ME/CFS include:
Muscle and joint pain
Headaches
Tender lymph nodes in the neck or arm pits
Recurrent sore throat
Digestive upset/IBS
Chills/night sweats
Allergies and sensitivities to foods, odors, chemicals, light or noise
Muscle weakness and deconditioning
Shortness of breath
Irregular heart beat
What causes ME/CFS?
Currently, we do not fully understand the mechanisms or exact biological causes of this condition. We do know that ME/CFS can have a wide range of effects on almost all of the systems in the body, including our immune, neurological, endocrine (hormonal), digestive and cardiac system. Research suggests that there are certain triggers that may lead to the onset of ME - for example, following a bacterial or viral infection. Genetics and environmental factors have also been linked to ME/CFS though these are not well understood. Some researchers suspect that there are actually several subtypes or different illnesses that are grouped under the label of ME/CFS, though this needs more study.
How is ME/CFS treated, and will it get better?
The prognosis or expected recovery varies largely from person to person. In some cases, people can improve their symptoms to the point of full recovery (this is more common in younger people). Most people find they can manage their symptoms over time and see improvements in their symptoms, function and quality of life. Unfortunately in a small subset of patients, they may remain quite ill and struggle to make progress. It is hoped that further research into the subtypes of ME/CFS reveal options for more specific and effective treatment.
Medical management usually depends on your symptoms, as there is no specific drug treatment for ME/CFS. This may include:
Various analgesic (pain-relieving) medications
Antidepressant medications for helping with mental health and/or improving sleep
Other medication to manage concurrent health conditions
Your GP may also refer you for additional treatment from other health professionals, including:
Physiotherapy - for lifestyle modification advice, graded exercise and improving function
Psychology - to help improve mental health and coping strategies
Dietician - to guide food choices and manage GI symptoms/sensitivities
Occupational Therapy - for assistive devices, or advice on daily activities
What about non-drug treatments?
In general, the following non-drug treatments are commonly recommended for ME/CFS depending on your symptoms.
Graded Exercise Therapy
Looking after your mental health - including but not limited to relaxation/mindfulness techniques, or cognitive behavioural therapy delivered by a psychologist
Pacing/activity modification
Strategies to improve sleep quality
Maintaining a healthy diet
Changes to your work or living space
Assistive equipment as required to aid with difficult day-to-day tasks
Developing a flare-up or set-back plan
While fatigue and pain can make activity very difficult, there is no evidence to suggest that complete rest helps symptoms, and in fact may make them worse long term due to progressive deconditioning of the muscles and cardiovascular system.
How can a physiotherapist help me?
Physiotherapy (especially when delivered by a therapist experienced in ME/CFS) has been found to improve function, quality of life and reported symptoms in many people. Graded Exercise Therapy (GET) is the most commonly recommended treatment for people with this condition. Unfortunately fatigue, pain and orthostatic intolerance can make exercising very difficult. This is why having a thorough history taken and undergoing a physical assessment by a physiotherapist can ensure that you are provided with an appropriate program that suits your current level of function. Physiotherapists can also assess your pain symptoms and help with appropriate management of this, as well as providing you with additional advice and resources including pacing, activity modification, and sleep strategies.
How do I make an appointment?
If you have a diagnosis of ME/CFS or are suffering any of the above symptoms, we recommend touching base with your GP who can advise you on appropriate management. If you wish to see a physiotherapist for assistance with pain, activity modifications and exercise, this can be done with or without a doctor’s referral. For appointments, our clinic can be contacted on 69257734
Post written by Soph Shephard (Physiotherapist) - Soph has a keen interest in treating persistent musculoskeletal pain, specific pain conditions, and other chronic conditions including fibromyalgia and ME/CFS. She is actively involved in continuing professional development and coordination of the Murrumbidgee Pain Hub (a regular gathering of health professionals who work with clients with persistent pain). She has also been selected to undertake the Local Pain Educator Program through Pain Revolution, and is enrolled in post-graduate studies in Pain Science through University of South Australia.
References:
Smith, M. B., Haney, E., McDonagh, M., Pappas, M., Daeges, M., Wasson, N., ... & Nelson, H. D. (2015). Treatment of myalgic encephalomyelitis/chronic fatigue syndrome: a systematic review for a National Institutes of Health Pathways to Prevention Workshop. Annals of internal medicine, 162(12), 841-850.
https://www.cdc.gov/me-cfs/about/index.html
https://www.emerge.org.au/what-is-mecfs
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