Published in InterAction 64, Summer 2008
We regret that our medical advisers cannot respond to individual enquiries
Dear Doctor: Temperature control
I would like some advice about coping in hot and humid conditions and how those affected can prevent a relapse, especially as now we are experiencing hotter summers. My last relapse, due to temperature problems, lasted up to a year and now I have to keep out of the sun, even if it is only 18°C.
Enquiry received via our Reader survey
Professor Anthony Pinching replied:
Thank you for this. As well as responding to your specific question, I will broaden my reply to wider issues about temperature control in M.E./CFS.
Many people with M.E. have problems with external temperature. This can be through effects on symptoms and functioning in different weather conditions, as in your situation. Or it may be a sense of not being able to control body temperature – sometimes feeling hot when it is cold, at others feeling cold when it is hot, and often varying from one to the other for no obvious reason. Most people with M.E. also find it very hard to adjust to extremes in external temperature, whether it is very hot or very cold. This may reflect a general difficulty in adjusting to change in this illness.
(87% of the 2,000+ respondents to our 2006 ‘M.E. – More Than You Know’ survey reported problems with body temperature control; 66% reported these as severe; 85% reported wildly fluctuating body temperature – Ed).
However, apart from such extremes, people with M.E. frequently seem to have their own preferred external temperature for optimal function and comfort with their illness. In fact, most often, people seem to prefer warmer (and preferably drier) climatic conditions. But for others, like you, cooler conditions are better. Some seem more affected by humidity than by heat. Patients with other chronic neurological disorders (eg. multiple sclerosis) also show variation in symptoms or function at different external temperatures – the usual preference being for warmer conditions. We are not sure of the biological basis for this, but it is perhaps not surprising that the complexity of the nervous system will be sensitive to ambient conditions.
The regulation of our body temperature depends mainly on the fine control of the autonomic (inner) nervous system. We know that this part of the nervous system may be affected by M.E., for example with the control of blood pressure leading to a tendency to faintness on standing up quickly. It is probably because the fine control of this system is disrupted in M.E. that so many people find it hard to get to a comfortable temperature. Obviously, this can lead to a lot of extra energy consumption, quite apart from the discomfort.
Most patients with M.E. do not however seem to have an actual increase in body temperature from their illness. But a few do have persistent slight low-grade fever, for no apparent other cause. This may be because of the increased levels of pro-inflammatory cytokines (immune chemicals involved in inflammation) that have been found in research studies.
You ask how to prevent a relapse due to such changes. A lot of this depends on your exact circumstances, but I can outline some general ideas. By the way, the Department of Health does offer useful public health advice during hot spells, and this should be checked for ideas that may help you.
In a hot summer, it is a good idea to shut south-facing curtains in the daytime, to reduce the effect on room temperature of sunlight coming through windows. If you are able to stay in north-facing rooms, or in areas that are more shaded externally, there will be less extra warming of the walls. Keep windows shut when the outside temperature rises, and open them in the cool evenings and at night time. Reduce to a minimum the use of all indoor power-emitting sources, especially in the rooms you usually use (don’t forget that freezers emit a lot of heat). If you can afford even simple airconditioning, it could help if you are very much affected.
It is obviously advisable to keep out of the sun, but also to avoid going out in the heat of the day. Take plenty of water to replace what you lose. If you put some water on the skin and leave it to evaporate, that can cool you down a bit. Cool showers during the day can also help, if you can manage them. Wear light and loose clothing. Fans can help too.
If your own housing limits your options, you may want to approach social services to assess whether there are any modifications that could be made which could assist in your specific circumstances.
Overall, there are no easy solutions, but knowing why there is an issue can help quite a lot. Common sense solutions are worth remembering, adapting them to your own needs.
Heatwave: looking after yourself and others during hot weather is available to download as a pdf from the Department of Health, or you can telephone the DH publications orderline on 0300 123 1002. Quote 301454.
View a pdf of this article.