*Diet*


## *Support measures*


#### *A professional view on symptom management and relief*

*"Periods of rest and "pacing" are important components of all management strategies for ME/CFS patients. Physicians should advise people with ME/CFS on the role of adequate rest, how to introduce breaks into their daily routine, and their frequency and length which may be appropriate for each patient. Excessive rest may be counterproductive, except in the initial stages of disease, in the very severe cases, or in cases of acute exacerbation; so it is important to introduce 'low level' physical and cognitive activities within the patient's capacity, according to the severity of symptoms.*

*Sleep management is tailored to the individual, the role and effect of disordered sleep is explained, common changes in sleep dysfunction that may exacerbate fatigue symptoms are identified; common manifestations include insomnia, hypersomnia, sleep reversal, altered sleep-awake cycle and non-refreshing sleep. The professional provides general advice on good sleep hygiene and encourages gradual changes in sleep pattern, though of course there is no implication that poor sleep hygiene is the cause of non-refreshing sleep. Relaxation techniques appropriate for ME/CFS should be offered for the management of pain, sleep problems and comorbid stress or anxiety. Examples include guided visualisation and breathing techniques, which can be incorporated into daily routines and rest periods", while mindfulness ma be of value as a sympathetic nervous system modulator. Although exclusion diets are not generally recommended for managing ME/CFS, many people find them helpful for some symptoms, including bowel symptoms. The patient may attempt an exclusion diet or dietary manipulation under professional guidance and supervision, e.g., from a dietitian. For those with nausea, advice includes eating small portions and snacking on dry starchy food and sipping fluids. The use of anti-emetic drugs should be considered if the nausea is severe."* Dr. L. Lorusso (personal communication)

#### *4.7. Symptoms Relief and Management Using Available Pharmacological Drugs*

Treatment of pain and sleep dysfunction are key, as they may have an indirect impact on other symptoms. Options for the pharmacological treatment of fatigue, including mental fatigue are more restricted. A balance between benefits and side effects, and significant individual variability in treatment response, call for individualised treatment. Costs are also a consideration, especially in settings where patients pay for medications out of pocket or where there are restrictions in prescribing medications.

Evidence of the effects of various drugs or supplements is scarce and often based on their use for related conditions or on reported use in ME/CFS and clinicians experience. It is important to observe legislations in different countries and to ensure that prescription of any drugs not specifically approved or licensed for ME/CFS is discussed with the patient and an informed choice is made. In some settings, it may be appropriate to obtain formal signed consent from the patient before introduction of a drug that has not been approved for use in ME/CFS. Regulations on supplements and over the counter medications are usually much less strict, but again, use by patients should be based on informed decision. Finally, it is important to note that many patients have already been taking a range of medications and supplements before reaching the ME/CFS specialist; again, in these cases, it is important to discuss continuation or otherwise with the patient; evidence of benefit on the individual patient, costs, potential side effects, or interactions with other medicines are important considerations. Some examples of pharmacological drugs that could be considered, where appropriate, are listed in Box 12. The use of medications that may address multiple symptoms may be considered.

#### *4.8. Following the Consultation and Clinical Monitoring*

Regular follow-ups are opportunities for education, including on self-management, assessment of usefulness of medications and other treatments and side-effects. Follow-up should include monitoring of symptoms, using similar instruments to those used at or before the initial consultation. Examples of instruments that may be used in monitoring patients include hand grip strength measurement, standing test, serum CK, severity assessment using specific instruments or scales (such as analogue scales for pain, fatigue, sleep, and other symptoms), and specific questionnaires for assessing symptom severity.

#### *4.9. Needs of Patients with Different Severities*

People who have severe ME/CFS may be unable to carry out activities of daily living and may spend a significant proportion, or all, of the day in bed. The symptoms experienced by patients with severe ME/CFS are diverse and debilitating, and these may fluctuate and change, both in type and in severity. It is therefore important that the managemen<sup>t</sup> and care plan is flexible and reviewed regularly. People may have severe ME/CFS for years, and recovery is uncertain. Health services need to be prepared to attend to the specific needs of the severely affected, including home visits or virtual health consultations.

#### **5. Concluding Remarks and Recommendations for Developing and Organising ME/CFS Services**

The following are general recommendations for fully implemented services, but we appreciate that they are not achievable in the short term in many places, especially where knowledge and training in the field are limited or other resources are scarce. We encourage countries and regions to plan for their services, training, and educational needs according to the specific needs and characteristics of their population and patients and their organizational structures and resources. A national champion for each country or regions within countries would be highly desirable, especially in places with no or very scarce provision of services for ME/CFS.

**Box 12.** Examples of pharmacological approaches for relieving/managing ME/CFS symptoms\*.

*Pain*

