Managing CFS/ME in general practice: new ideas
Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), is a complex, multi-system condition that affects 2-4 per 1,000 New Zealanders.1
This MedCase describes a typical case of CFS/ME encountered in general practice with a focus on management ideas around caring for these complex patients.
Miss C is a 17 year old girl who comes to see you with a two-day history of worsening tiredness, pelvic pain and difficulty sleeping. She has run out of tramadol, which she uses in addition to paracetamol for pain exacerbations.
Miss C feels extremely tired and tells you she has been bedbound for the past few days, since she attended three full days of school in a row. Her sleep is poor with multiple night-time waking. She has tried zopiclone and melatonin with little improvement. At other times, she sleeps for over 12 hours but wakes feeling unrefreshed, requiring naps during the daytime. Usually her tiredness means that she can’t manage full days at school, but she attempted to go this week as they are preparing for exams.
The pelvic pain is a chronic problem that started around 12 months ago and is present most days, usually at a manageable level but with occasional exacerbations that are only partially relieved by tramadol. The exacerbations often occur after she has been busy or stressed.
Miss C has been seen multiple times over the past 18 months. Things began after an infection with likely infectious mononucleosis; subsequent blood testing showed Epstein-Barr virus (EBV) seropositivity. The fatigue persisted and the pelvic pain and sleep problems became gradually worse. Miss C has also experienced other intermittent symptoms including low mood, weight gain, intermittent loose bowels, and abdominal pain.
Previous notes document repeated normal examination findings, and no significantly abnormal blood test results. Miss C has seen several secondary care services, including:
- Gynaecology for pelvic pain, with no evidence of polycystic ovarian syndrome (PCOS) and no abnormalities on pelvic ulstrasound. The combined oral contraceptive pill (COCP) was started, with no effect on the pain.
- Gastroenterology for abdominal pain and irregular bowel habit. Endoscopy was normal and a diagnosis of irritable bowel syndrome (IBS) was suggested.
- Rheumatology for intermittent neck and abdominal plus a positive antinuclear antibody (ANA) result, with no evidence of inflammatory arthritis. Fibromyalgia was considered but the diagnostic criteria were not met.
Today, Miss C is here with her mother. They are both frustrated at the ongoing impact of Miss C’s symptoms on her life. Miss C was previously an enthusiastic and high-achieving student at the local high school. However, this year she has missed a lot of school and will be unable to sit her year-end exams. She has also had to stop her dance lessons and quit the netball team.
How do you approach this consultation?
Could this be CFS/ME?
Yes. Miss C has described several of the neuroendocrine, cognitive, autonomic, immune, and metabolic changes that characterise CFS/ME (Figure 1).1,2
Figure 1. Multisystem Dysregulation in ME/CFS
Diagnosis requires careful analysis of the patient’s history and pattern of symptoms, plus exclusion of other fatiguing illnesses.1 The key symptoms that distinguish CFS/ME from other fatiguing illnesses are:
- post-exertional malaise (PEM), and
- symptom exacerbation in response to stressors.
There are no specific examination findings, though some subtle signs may assist diagnosis (ref Figure 1).
Basic laboratory testing is indicated initially to look for other causes (e.g. chest x-ray for cough). More specific testing should be guided by symptoms, but again there are no specific diagnostic findings.
The CFS/ME Healthcare professionals site provides guidance on the appropriate work-up when considering a diagnosis of CFS/ME, including specific guidance for diagnosis in young people.1
- Consider CFS/ME in patients with prolonged fatigue and other typical symptoms following an acute initial illness (though gradual onset is also possible).
- Exclude other fatiguing illnesses by investigating based on symptoms as appropriate; an alternative diagnosis can be found in up to 1/3 of likely CFS/ME cases.
- The key features that usually distinguish CFS/ME from other fatiguing illnesses are:
- post-exertional malaise (PEM) (immediately or delayed 24 hours or more)
- symptom exacerbations in response to stressors (physical or mental overexertion, new infections, sleep deprivation, immunisations, or other medical comorbidities)
- Resources such as the Clinical Diagnostic Criteria Worksheet or the Institute of Medicine diagnostic algorithm may assist diagnosis of CFS/ME
- If there is diagnostic uncertainty, consider seeking further advice from peers with experience in treating CFS/ME, such as Dr Rosamund Vallings
You raise the idea of CFS/ME and explain to Miss C you would like to assess her symptoms using the Clinical Diagnostic Criteria worksheet.
The results suggest that she meets the diagnostic criteria. You agree that this seems likely in view of her other results and negative findings on previous investigations.
What do you do next?
Establish a collaborative therapeutic relationship
Making the diagnosis can provide relief for patients, who have often been living with difficult and unexplained symptoms for some time.1
Offering information about the biological changes underpinning the symptoms can help patients and their families understand and accept the diagnosis.
Useful patient resources:
Treatment approach and goals
There are no curative therapies for CFS/ME. Treatment aims to reduce symptoms and improve quality of life, with a focus on patient self-management, which is why establishing a collaborative therapeutic relationship is essential.
An important step is to acknowledge the impact of CFS/ME on the individual’s ability to work, to maintain relationships, to undertake basic self-care and to maintain self-identity. Frustration and anxiety can arise if there is scepticism towards CFS/ME patients - who may not appear ill - from their family, friends and medical practitioners.
Miss C and her mother feel the diagnosis makes sense. You explain that you would like to work with Miss C to find ways of managing her symptoms to allow her to participate as much as possible in school and social life.
You arrange an extended follow-up consultation next week with Miss C and her mother to discuss treatment strategies, offering them information to consider before you meet again.
This section describes strategies for managing some of the symptom groups of CFS/ME in ambulatory patients; a complete guide for management, including ideas for managing non-mobile patients, can be found in the CCFS/ME Primer for Clinical Practitioners.
Tips for optimising patient care1
- Use written materials and ask patients to bring a support person to appointments (many patients have short term memory problems).
- Ask the patient to write down their most troubling symptoms and agree which ones to focus on (avoid overloading the patient).
- Plan ongoing assessment over multiple visits.
- Start low and go slow with medications; rotating medications can be useful.
Managing PEM: pacing & the energy envelope
Post-exertional malaise (PEM) is thought to arise from altered aerobic metabolism in CFS/ME patients, which creates an inappropriate reliance on anaerobic metabolism.1 PEM can last up to weeks after minimal physical or mental exertion.
An important management strategy is to avoid PEM by finding an appropriate amount of activity for the individual patient.
Some useful concepts are:
- The energy envelope. This is the energy available to accomplish tasks, and it is reduced in CFS/ME. In some patients, the activities of daily living will use up all of their available energy. In others, adding an appropriate exercise programme can improve function and quality of life.
- Pacing. This means staying within the patients’ individual energy envelope. The optimal amount of activity allows the patient to remain as active as possible while avoiding PEM.
Fatigue severity declines when patients stay within energy envelope.
Diet and supplements
There is no evidence-based diet for CFS/ME and patients should eat a balanced range of foods.
Some useful treatment suggestions are:
- Small frequent meals may be helpful to minimise energy expenditure.
- Patients with orthostatic symptoms or low blood pressure can benefit from increasing salt intake (a pinch every 2-3 hours).
- A bedtime carbohydrate snack can help with fatigue.
- Magnesium at bedtime may help with relaxation and pain.
- Co-enzyme Q10 may help with myalgia.
- Vitamin B12 injections may improve symptoms in some patients, as shown in a Finnish study. (Note B12 use should be guided by clinical response rather than blood results. Try a course of weekly injections for six weeks then assess the effect).
As with other symptoms, treatments for pain must be individualised and non-pharmacological methods should be considered alongside medications. A general rule is to start low and go slow, as CFS/ME patients can be hypersensitive to medications. Opiates are generally discouraged (though may be necessary and beneficial for some patients). The agents most likely to be effective are tricyclics, and gapapentin or pregabalin, though beware of exacerbating daytime sedation.1
Low-dose naltrexone has gained recent attention and may be a useful non-addictive option. It is thought to reduce pain sensitivity over time via opioid antagonist activity, plus there is evidence of an anti-inflammatory effect at microglial cells.3
A suggested strategy is to start at a low dose, for example 1.5mg daily for one week, then titrate up according to effect; see here for a summary of evidence and suggested dosing strategies.
In addition to standard sleep hygiene measures, patients with CFS/ME may benefit from targeted sleep advice, including:
- Consider a bedtime carbohydrate snack.
- Targeted use of medications, taken early enough that sedation takes effect around bedtime. For example, taking tricyclics five hours before bedtime.
- Rotating medications may be more effective than using a single agent.
Miss C and her mother return to see you with a list of the most concerning symptoms, which are tiredness and poor sleep. The pain is troublesome but Miss C feels this would improve if her sleep and energy were better.
You discuss a programme of activity pacing to avoid PEM and suggest a bedtime snack. Miss C will try 5mg amitriptyline taken five hours before bedtime to help with sleep.
You stop the tramadol for pain, and agree to review the symptoms (particularly pain) again in four weeks.
You also suggest B12 injections and book these in weekly for six weeks. You agree a plan for monthly reviews to titrate treatment, with more frequent reviews if required.
Miss C is happy with this approach and her mother thanks you for your support.
This MedCase was written by Dr Vicki Mount, General Practitioner, MBChB, DipPaeds, with expert review by Dr Rosamund Vallings, MNZM, MB BS (Lond), MRCS LRCP, Dip Clin Hyp, BA (Massey).