Cooling Tips 101

How to breeze through a heat wave with ME & Long Covid

Heat can significantly worsen symptoms for people with ME and Long Covid, particularly for those with a strong dysautonomia (autonomic dysfunction) presentation. And preparation can make all the difference. It can very much feel as comfortable as a goth in summer - very unfun!

This is not “just being bad with heat.” For many disabled people, heat increases physiological stress, symptom burden, and risk of deterioration. It’s a disability access and political issue, especially for those in the workplace or in rented accommodation.

We’ve had an Instagram carousel and social media thread on top cooling tips for the last few years, but thought it would be helpful to cross-pollinate this into our 101 series.

Why heat hits harder

Many people with ME and Long Covid struggle to regulate body temperature effectively due to dysautonomia. Heat can worsen a multitude of symptoms, especially fatigue and post-exertional malaise, headaches, dizziness and sleep disturbance.

Some common medications, including some beta blockers and antihistamines, can also impair sweating or temperature regulation. So it is worth checking before a heat wave hits if you need to adjust medication.

People especially on the severe spectrum can struggle to adapt to the mitigations needed to reduce heat. The greatest impact can be on the most vulnerable.

Cool from the outside

External cooling can reduce symptom load and help prevent overheating.

Helpful tools include:

• cooling vests

• cooling neck wraps

• migraine caps

• gel packs

• flannels

• cooling mats

• soaked microfibre towels

• ice bricks wrapped in cloth

• feet in cold water

• spraying skin and clothes with water

Some people freeze hot water bottles and use them as cold packs.

If you are bedbound or severe, keeping cooling items in a cool box beside the bed can help conserve energy. If possible, ask someone else to refresh ice packs and prepare cooling supplies for you.

Cool from the inside

Hydration and internal cooling matter too.

Some ideas:

• suck ice cubes

• frozen grapes

• ice lollies

• cold fruit

• chilled drinks kept beside the bed

• homemade electrolyte ice lollies

Cold water can be easier to tolerate with:

• mint

• lemon or fruit

• electrolyte powder

• oral rehydration salts

Sip rather than gulp if nausea or dysautonomia worsens with fluids.

Many people also find:

• salty snacks

• electrolytes

helpful for orthostatic intolerance and heat-related symptom worsening.

Caffeine and alcohol can worsen dehydration and tachycardia for some people.

Airflow and cooling the room

Creating a “cool zone” in one room can make a huge difference.

Possible options:

• portable AC units

• evaporative coolers

• desk fans

• wearable fans

• cross-ventilation when outdoor temperatures drop

• fans positioned to blow hot air out of windows

Some people mist the room lightly while using fans for evaporative cooling.

Quiet desk fans can help people with sensory sensitivities or migraine. (Meaco are good - no affiliation!)

One of the most effective ways to cool airflow is to place ice packs, frozen water bottles, or a bowl of ice cubes in front of a fan. This can cool you and the room down fast. If the sensation or noise of a fan is too much, even propping up flat ice packs near you can make a difference.

Cooling the house

A lot of heat management is actually about preventing heat build-up.

Strategies include:

• opening windows early in the morning

• using fans before the house heats up

• closing blinds and curtains before peak heat

• blackout &/or heat reflective blinds

• blocking sunlight from outside where possible

External shading works better than internal blinds. If available:

• shutters

• awnings

• reflective window film

• shade from trees and plants

can significantly reduce indoor temperatures.

Other tips:

• avoid using the oven

• cold food prep where possible

• sleep downstairs if upstairs retains heat

• keep loft hatches or high windows open to vent hot air

• wet sheets near windows can sometimes help cool airflow

If you are severe, asking others for practical help with cooling the environment is a legitimate access need.

Pacing in hot weather

Heat itself increases energy demand.

That means many people need to reduce activity during hot weather, even if they were previously stable.

You may need to:

• rest more

• pace more strictly

• stay horizontal more often

• reduce sensory load

• postpone non-essential tasks

• shift activity to early morning or late evening

This is not laziness or “deconditioning.” It is adaptation to physiological stress.

Sensory regulation and heat

Heat can intensify sensory sensitivity, particularly to light, noise, screens, touch, movement and social interaction.

For many people, overheating and sensory overload interact and can rapidly increase the risk of deteroration and post-exertional malaise.

Helpful adjustments may include:

• sunglasses indoors or outdoors

• blackout curtains

• darkened rooms

• dim lamps instead of overhead lighting

• reducing screen brightness and red light blockers

• eye masks

• noise-cancelling headphones or earplugs

• lightweight soft clothing

• cool, low-stimulation environments

Some people also find that reducing sensory input lowers overall energy demand during heatwaves.

If you live with others, it can help to communicate that sensory adjustments are an access need, not a preference or overreaction.

Work, school, and accommodations

Heat can become an accessibility barrier.

In the UK, there is currently no legal maximum workplace temperature, but employers still have legal duties to provide a “reasonable” working environment and manage heat-related risks. (HSE)

For disabled workers and pupils, ME and Long Covid may also fall under protections in the Equality Act 2010 if symptoms have a substantial and long-term impact on daily life.

Reasonable adjustments during heatwaves may include:

• remote working

• flexible hours

• additional rest breaks

• fans or cooling equipment

• relaxed dress codes

• reduced workload

• moving desks away from heat sources

• sickness absence flexibility

• access to cooler rooms

Employers have duties to assess workplace risks, including heat stress, so do ask or write if these are not in place. (HSE)

Heat vulnerability should not be treated as a personal failing but rather as an institutional responsibility that benefits all.

Community care during heatwaves

People who are severe or housebound may need additional support during extreme heat.

That can include:

• bringing cold drinks

• replacing ice packs

• preparing cold meals

• helping cool rooms

• checking in regularly

• helping access medications or electrolytes

If you are able-bodied and know someone with ME or Long Covid, heatwaves are a good time to ask what support would actually help. A good policy is to let them know you are available and can be called on in a heatwave.

Needs are individual, so flexibility matters and awareness that social interaction and timing may need to accomodated for the person’s safety.

Final thoughts

There is no single “correct” way to manage heat with ME or Long Covid. Bodies, access and severity differ. So adapt and use what works for you and do ask for help if needed. A personal plan or action from this guide can help you be prepared like every good Brownie!

The goal is not to stay as productive as we can during heatwaves. We need to be kind to ourselves and rest as much as we need too. Awareness that ‘small’ acts can reduce harm from those around people with Long Covid and ME is vital too, and can prevent deterioration for loved ones.

These tips have made a significant difference to us. With the climate only getting hotter in the UK and in many parts of the world, it also shows how interconnected climate justice, disability and chronic illness are.

If you have any cooling tips that work for you, do let us know in the comments. We are more than happy to add to this resource.

Stay cool peeps! If in doubt become as cat-like as possible - sleep, rest, find a cool spot and don’t care what anyone around you thinks.

Note: We are thinking of putting our 101 series into PDFs that can be downloaded on our website. Do let us know if you think this would be useful! Biopsychosocial 101 is going through final edits and should be out next week. So watch this space!

We also have a livestream (X, YouTube, Facebook) with Elinor Cleghorn on May 28th discussing Medical Misogyny and the recording will be available here. Excited is not the word!