Question

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

Answer

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 in the skin, 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. And as we grow older we also become more sensitive to the excessive heat.

Secondly, here are some top tips for dealing with hot weather – day and night

1. Wear lightweight and loose fitting cotton clothes and a wide brimmed hat if you have to go outside
2. Drink plenty of fluids to stay hydrated and avoid too many caffeine containing drinks
3. Eat small regular meals
4. Reduce activity levels and stay indoors between 10am and 6pm – unless you really need to go out
5. Close the curtains and windows during the day in any room you want to stay cool, especially those that face the sun
6. Use an indoor fan if it’s really hot. 
   • Electric fans are a cheaper option than air conditioning and are usually relatively cheap to run. Whether you opt for a desk fan or a tower/pedestal fan, remember that a fan doesn’t actually cool the air, it just moves it around. You feel cooler because the breeze helps to evaporate moisture off your skin. So don’t bother leaving a fan on in a room with nobody in it, as you’re just wasting energy.
   • When setting your fan up, try to position it at the same height or lower than you, such as on the floor or a low table, with the unit pointing up. That will blow the cooler air up, rather than pushing warmer air (which rises to the top of a room) down on to you.
   • Choose a desk fan for personal cooling, or a tower or pedestal fan if you want to cool a larger shared room. A portable air conditioner can cool more effectively, but it takes up much more space, costs more and can be awkward to move around, especially in smaller homes.
7. Portable air conditioners are one of the most effective ways to cool a room during a heatwave because they remove heat from the air, rather than just circulating it like a fan.
   • These devices are another option for home cooling, particularly renters, as they don’t need permanent installation. When buying, check the BTU rating suits your room size, look for features like a timer, and remember you will need to vent hot air outside.
   • Cooling pillows and blankets can be helpful at night.
8. 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. You can also buy reusable gel cold packs that you keep in the freezer. Wrap them in a tea towel or pillowcase before applying them to your skin – it’s more comfortable that way.
9. Have a bowl of cold water and a flannel or a water spray handy to cool down with.
10. Be aware that some medications (e.g. antidepressants, antihistamines) can also affect temperature control mechanisms.

And do watch out for the symptoms of overheating and dehydration:

• Muscle cramps in your arms, legs or stomach
• Confusion
• Headaches
• Dizziness
• Extreme thirst
• Nausea or vomiting
• Heavy sweating
• Fast pulse.

Further Information

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