NICE says ME/CFS is a complex, chronic medical condition affecting multiple body systems

The draft of the revised NICE guideline has been published on November 10th 2020. It will be open for consultation until December 22nd.

As a stakeholder WAMES will be responding to this consultation and we invite Welsh residents to let us know what you think so we can include your thoughts in our response. Contact the helpline or use the contact form on this website

You can read the draft guideline here

Read excerpts from the guideline here on our blog. We will take our time to consider the implications of this important document. The draft guideline says this about the nature of ME/CFS:

Be aware that ME/CFS (p4):

• is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is unclear
• can have a significant impact on people’s (and their families and carers’) quality of life, including their activities of daily living, family life, social life, emotional wellbeing, work and education affects each person differently and varies widely in severity – in its most severe form it can lead to substantial incapacity (see recommendations 12 1.1.8 and 1.1.9)
• is a fluctuating condition in which symptoms can change unpredictably in nature and severity over days, weeks or longer – ranging from being able to carry out most daily activities to severe debilitation.

Symptoms for suspecting ME/CFS:

• Debilitating fatigability (1) that is not caused by excessive cognitive, physical,
  emotional or social exertion and is not significantly relieved by rest and
• Post-exertional symptom exacerbation (2) after activity that:
  − is delayed in onset by hours or days
  − is disproportionate to the activity
  − has a prolonged recovery time lasting hours, days, weeks or longer and
• Unrefreshing sleep (3), which may include:
  − feeling exhausted, flu-like and stiff on waking
  − broken or shallow sleep, altered sleep pattern or hypersomnia and
• Cognitive difficulties (sometimes described as ‘brain fog’), including problems
  finding words, temporary dyslexia or dyscalculia, slurred speech, slowed
  responsiveness, short-term memory problems, confusion, disorientation and
  difficulty concentrating or multitasking.

Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:

• orthostatic intolerance (4) and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
• temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
• neuromuscular symptoms, including twitching and myoclonic jerks
• flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
• intolerance to alcohol, or to certain foods, and chemicals
• heightened sensory sensitivities, including to light, noise, touch and smell
• pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

1. Fatigability (p42)

Fatigability in ME/CFS has the following features:

• sick or ‘flu-like’ fatigue, especially in the early days of the illness
• ‘wired but tired’ fatigue, or restless fatigue (it may also include hypervigilance during sleep)
• low energy or a lack of physical energy to start or finish activities of daily living and the sensation of being ‘physically drained’
• cognitive fatigue that worsens existing cognitive difficulties
• rapid muscle fatigue in which strength or stamina are lost quickly after starting an activity, causing sudden weakness, clumsiness, lack of coordination, and being unable to repeat physical effort consistently.

2. Post-exertional symptom exacerbation (p44)

The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms typically worsen 12 to 48 hours after activity and can last for days or even weeks. This is also referred to as post-exertional malaise.

3. Unrefreshing sleep (p45)

Unrefreshing sleep is described as a light sleep. Even after a full night’s sleep people do not feel rested. People with ME/CFS often report waking up exhausted and feeling as if they have not slept at all, no matter how long they were asleep.

4. Orthostatic intolerance (p43)

The inability to regulate blood pressure and cerebral blood flow when upright, usually when standing, but it can also occur when sitting. It may lead to postural tachycardia, hypotension and alterations in consciousness (such as fainting). This may include postural orthostatic tachycardia syndrome (a significant rise in pulse rate when moving from lying to standing) and postural hypotension (a significant fall in blood pressure when moving from lying to standing)

Reason for the above description of ME:

Page 49: Based on both the evidence and their experience, the committee agreed that the Institute of Medicine’s 2015 criteria had the best balance of inclusion and exclusion of all the reviewed criteria, but it needed to be adapted for optimal use.

Page 52: There are concerns that many of the existing criteria do not accurately identify people with or without ME/CFS. Currently there is no validated diagnostic criteria for ME/CFS, and this leads to confusion about which criteria to use. The committee agreed to make a recommendation for research on diagnostic criteria to inform future guidance.

[NB Additional symptoms are listed for severe ME/CFS on p6 and will be featured in a separate blog.]