Question

Please can you provide tips on how to cope with the heat with ME/CFS?

Answer

Many parts of the UK are going to be experiencing very high heat levels over the next few days.

Firstly, some quick notes on temperature control and ME/CFS:

People with ME/CFS almost always have problems with temperature control.

This is probably related to a problem with a tiny ’thermostat’ gland in the brain called the hypothalamus – which plays a key role in temperature regulation and control.In addition, the autonomic nervous system, that controls the size of tiny blood vessels, becomes more sensitive to changes in temperature.
So having ME/CFS makes people more sensitive to both hot (including things like hot baths) and cold weather.

Top tips for dealing with hot weather – day and night

• Wear lightweight and loose fitting cotton clothes and a wide brimmed hat if you have to go outside
• Drink plenty of fluids to stay hydrated – but avoid too many caffeine containing drinks
• Eat small regular meals
• Reduce activity levels and stay indoors between 10am and 6pm – unless you really need to go out
• Be aware of warning signs of heat related illness/heat stroke – nausea, headache, confusion, muscle cramps, feeling faint
• Close the curtains and windows during the day in any room you want to stay cool, especially those that face the sun
• Buy a fan for use if it’s really hot
• A lot of people with ME/CFS find cooling pillows and blankets helpful. These can be purchased on-line and one brand that appears to have a good reputation is OEX.
• Take a cold ‘hot water bottle’ to bed at night. Alternatively, cool socks in the fridge and put those on. Cooling your feet lowers the overall temperature of your skin and body
• Have a bowl of cold water and a flannel or a water spray handy to cool down with
• Be aware that some drugs (eg antidepressants, antihistamines) can also affect temperature control mechanisms

Further Information

• NHS: Heatwave: how to cope in hot weather
• NHS: Heat exhaustion and heatstroke