While pacing and rest are self-management approaches, doctors and healthcare practitioners can help with stepwise symptom management. This involves:
- ranking symptoms from most to least problematic
- exploring options to help reduce symptoms, starting with the most problematic.
This approach to management isn’t treating the underlying cause of ME/CFS or Long COVID, but it can help to improve overall quality of life. In undertaking this approach, doctors should also take into account that many people with ME/CFS are sensitive to medications, so they should take a ‘start-low, go-slow’ approach.
Using the symptoms severity and severity hierarchy profile
For people who live with ME/CFS or Long COVID recording symptoms can feel like a huge task and can be an overwhelming process. Emerge Australia recommends using the Symptom Severity and Severity Hierarchy Profile to help provide an overview of your symptoms to your doctor in a simple and straightforward way.
This may help you to get the most out of your appointment, ensure that your doctor can see how many symptoms you have, how severe your symptoms are and how by helping you manage as many symptoms as possible, you can improve your quality of life. If you find completing the symptoms profile takes a lot of energy, complete it over a few days or weeks or ask for help from family or friends.
When completing the symptoms severity and severity hierarchy profile:
- think about the severity of your symptoms over the last two to four weeks
- you may like to fill in one profile for an average day and one profile for your worst day
- also note how many average days you have had in the past two weeks and how many days at your worst
- this is your personal profile and should represent how you view the severity of your symptoms; it is not about comparing yourself to others nor what would happen if your condition deteriorated
- if your doctor is willing, ask then to sign the document and upload it to your medical file. This may help support you in the future if you need a document outlining how long you have been managing your symptoms with medical support. You may also decide to complete a new symptoms profile in six to twelve months to compare treatment outcomes or health status.
Over time this will help you find your functional baseline. A functional baseline is level of physical, cognitive, and emotional energy you can use without triggering PEM or a decline in overall health. Understanding your functional baselines may take time but will become your reference point if illness severity.
Filling in your profile
Rate severity of symptoms by putting a check mark (X) in the appropriate column to the right of symptoms. Rank your symptoms in order of severity (1 being your most severe symptom) in the left column – please note, if you find this step too hard, place the number 1 next to the symptoms you would like to focus on during your doctor’s appointment.
|Symptom severity and severity hierarchy profile
|Post-exertional fatigue: loss of physical and mental stamina, fatigue made worse by physical exertion
|Long recovery period from exertion: takes more than 24 hours to recover to pre-exertion activity level
|Fatigue: persistent, marked fatigue that substantially reduces activity level
|Sleep disturbance: non-restorative sleep, insomnia, hypersomnia
|Pain: in muscles, joints, headaches
|Memory disturbance: poor short-term memory
|Confusion and difficulty concentrating
|Difficulty retrieving words or saying the wrong word
|Gastrointestinal disturbance: diarrhoea, IBS
|Recurrent sore throat
|Recurrent flu-like symptoms
|Dizziness or weakness on standing
|Change in body temperature, erratic body temperature, cold hands and feet
|Hot flushes, sweating episodes
|Marked weight change
|Breathless with exertion
|Tender lymph nodes: especially at sides of neck and under arms
|Sensitive to light, noise or odours
|New sensitivities to food/medications/chemicals
|Total check marks in column
Total score: 28 Overall symptom severity: mild moderate:18 severe:0
Other symptoms: Vertigo, lower back pain, tingling in hands
Change in symptoms: Nil in symptoms in the past three months
How good is your sleep on a scale of 1 to 5? (5 = good restorative sleep, 1 = no sleep): 3
How do you feel today on a scale of 1 to 10? (10 = terrific, 1 = totally bedridden): 4
Adapted from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners. An Overview of the Canadian Consensus Document, Carruthers BM, van de Sande MI.
Get support to complete the profile
Our Telehealth Nurse Service provides free consultations where you can get assistance with symptom management and guidance on how to complete the symptoms severity and severity hierarchy profile.Book a consultation here