Key things to consider
Patients and professionals have told us that the following information is key:
- The National Institute for Health and Care Excellence (NICE) guideline for M.E. was updated in 2021 and makes it clear that people with M.E. must not be offered any therapy based on physical activity or exercise as a cure; or any programme that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET). It also highlights that "CBT has sometimes been assumed to be a cure for M.E./CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness."
- People with severe M.E. experience symptoms that significantly affect their lives, including their mobility, emotional wellbeing and ability to interact with others and care for themselves. The NICE guideline section on severe M.E. recommends that healthcare professionals risk assess each interaction with a person with severe or very severe M.E. to ensure its benefits will outweigh the risks (for example, worsening symptoms).
- Surveys by Action for M.E. and other M.E. charities have consistently shown that the majority of people with M.E. find that pacing (ie. managing physical, mental and emotional activity and rest) helps them to manage their illness.
- People with M.E. have low stamina for activities. Do not assume that if a patient appears better (or worse) at a given moment that this indicates a change in their overall condition.
- Generally, people with M.E. will need to space out their activities, including medical appointments, to avoid exacerbating their symptoms and may find that their capacity is generally greater at a specific time of day.
- Treatment and symptom management approaches should be regularly reviewed, including home visits for those who are too severely affected to attend surgery.
- Patients with M.E. often require longer appointment slots, or a series of appointments focusing on complex specific symptoms.
- Encourage patients to record symptoms in a diary, which may help to overcome barriers to effective communication during their appointment.
- Do not assume that dizziness, palpitations, chest pains or breathlessness are symptoms of anxiety. These are likely to be symptoms of autonomic dysfunction in at least a sub-set of M.E. patients.
- People with M.E. often take a range of supplements. It is recommended to ask about these causing side-effects or interacting with prescribed medication.
- Patients should not be encouraged to undertake any form of vigorous exercise. Any attempt to increase activity should be cautious and gradual. For some this will be limited to gentle stretches. Others who are more mobile may be able to undertake very gentle yoga, pilates or short walks.
- Rest and relaxation are important aspects of managing M.E. Some patients may benefit from advice around taking full, lying-down rest breaks, breathing exercises or mindfulness practice.
- General advice for M.E. patients includes drinking plenty of water to avoid dehydration, eating regular, small and well-balanced meals, and keeping caffeine and alcohol intake to a minimum (many people with M.E. experience alcohol intolerance so will generally self-regulate).
- Driving some or all of the time may be hazardous for patients with a high degree of cognitive or visual (eg. focusing) impairment.
- Pregnancy, childbirth and parenthood are concerns for many women with M.E. and their partners.
- People with M.E. may be eligible for a number of welfare benefits. Claimants are increasingly expected to obtain their own supporting medical evidence, which can make a crucial difference to the success of a claim or appeal.
- As a long-term, fluctuating condition, M.E. is categorised as a disability by the Equality Act 2010. M.E. can have a significant impact upon a person’s ability to work. For some, their symptoms are so they can’t consider working at all, while others may be able to work or volunteer when fluctuating symptoms allow. Patients can information on our M.E. and work pages.
- Our Information and Support team welcome calls and emails from any professionals working with people with M.E. We can share resources and signpost to support for your patients and/or clients.