I am a sun worshipper, probably because I live in the wettest place in England and we don’t see much of it, so the second the sun does come out I’m there basking like a lizard on a stone. However, although it reduces my pain levels and makes me feel mentally good it kills me physically. I can’t sit directly in the sun because I start to sweat, then my heart has to start pumping harder to cool me down and very shortly I feel like I’ve been hit by an express train – weak, brain fogged, fluey, achey and just generally ill. When I was severely affected with M.E. I couldn’t go outside in hot weather at all. After just half an hour I felt so poorly I would have to crawl my way back to bed and it would take hours for me to recover.
There’s been lots of research which has looked at energy metabolism and muscle dysfunction in M.E., but just lying reclining on a sun lounger doesn’t require mental or physical exertion or muscle energy expenditure. Sweating, however, requires an increase in cardiac function.
I don’t know why in all these years I haven’t thought about that before. It just came to me the other day when I was outside in the little mini heatwave we’re having, wanting to lie with my head in the lovely sunshine but knowing I couldn’t because if I did I would get too hot and feel like I’d been run over by a bus and I’m not alone. The majority of my friends with M.E. find hot weather makes them worse and none of my severely affected friends are able to sunbathe. The same goes for hot baths, which are hugely beneficial for my muscle spasms and pain levels but make me feel absolutely rubbish in every other way.
When I’ve given it thought before I always assumed it was a dysautonomia problem. Heat causes your blood vessels to widen, which causes more blood pooling in the feet and less blood reaches the brain, and while I’m sure that’s still part of the issue it’s not the full picture. I get ill lying down in the sun so the POTS theory doesn’t really fit. It suddenly dawned on me that the only thing having to working extra hard when I’m hot is my heart.
M.E. is a disease of exercise intolerance. Having a shower, for me, is like climbing the north face of th Eiger and leaves me absolutely and utterly knackered. I haven’t run in over two decades and doing any activity which elevates my heart rate flaws me. You would think there absolutely has to be a cardiac problem involved in M.E.
Several small scale studies have been done on heart function, mainly by the CFS research team at Newcastle University in the UK, and although they’ve found some abnormalities in short QT waves and output nothing major which affects all patients has ever shown up. Something catastrophic is happening inside our bodies but no matter how hard researchers look so far they haven’t been able to figure out what’s going on, which is the main reason the disease has always provoked such controversy.
Decades of research has now been carried but IMHO we’re realistically no further forward in finding out the cause of M.E. Little clues here and there but nothing concrete or definitive. I wonder when, or if, that’s ever going to change?