Tory Majority Day 46: Heatwave & Inner Temperature Problems In People With MECFS

Yesterday was the hottest July day on record. Many people with ME or CFS will have suffered acutely. This is because our inner temperature controls are broken, like a thermostat that has gone on the blink.

I have to have hot weather or a hot environment to feel well and since it’s become summer my overall MECFS symptoms have improved. However that is not the same for everyone and once it becomes colder again I will decline. 

This post is dedicated to my fellow MECFS sufferers for whom the summer makes their symptoms so much worse, feeling as if they are being boiled in the depths of hell in the heat…

Temperature Disregulation 

The inability to control ones inner response to outer temperature conditions. Cause unknown. 

An abnormal physiological response unique to people with ME or CFS, characterized by a disconnect between the external temperature and the internal temperature of the patient.

1. The sensation of being on fire, overheating or inability to cool down despite external conditions.

2. The sensation of being cold or having an inability to warm one’s body despite external conditions.

This symptom is a component of a cluster of concurrent additional symptoms that can include: 

1. Muscle pain

2. Migraine

3. Chronic and pervasive mental and physical fatigue

4. Nausea

5. Digestive distress

6. Post exertional malaise

7. Brain fog 

8. Emotional fluctuation

9. Hyperacausia

10. Postural Orthostatic Tachycardia Syndrome

There is no targeted treatment for this symptom given in the NHS NICE Guidelines.

Advice given in ME clinics suggests it may be related to the neurological aspects of ME or hypo-adrenal-pituitary-axis disregulation however the cause is not known.

Medical advice suggests adopting conventional strategies that are offered to the average non-ill population.

People with ME are acutely sensitive to their environments, tuned into them like weather vanes. The difference between a reasonable day with manageable symptoms and a terrible day of unmanageable symptoms can turn on something as apparently simple as the temperature increasing or decreasing.

Spare a thought for those who are really suffering at the moment and for whom no amount of drinking water, keeping fans on, wearing loose clothing, eating ice creams or drinking cold drinks make one jot of difference to how they are feeling on the inside.

We need a cure for this illness, fast. My heart is going out to those who at the moment are truly suffering.

© Lindy 2015 

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