Ahhh. Spring has arrived. The temperature is rising. The days are getting longer. The smell of jasmine is in the air. The sunsets are intense thanks to people burning off ready for summer. The migratory birds from Asia and India have announced their arrival.
Well that's what it means to me anyway.
I am very conscious however that it means different things to different people. While this marks the end of the cold weather related symptoms for some sufferers of ME/CFS it also marks the beginning of the warm weather related symptoms for other sufferers.
It highlights how variable ME/CFS is.
The impact of temperature is so pronounced for some, that I have met people that have moved regions to avoid the extremities of weather and thus symptoms.
I know some people whose body was such an incredibly accurate temperature guage. At a precise temperature symptoms started. Without ever needing to look at the thermometer some people will know the temperature has passed a marker by the presense of symptoms. To me this highlights how this is a very physical condition and should silence those who see ME/CFS as a psychological condition. Equally people with food intolerances or cat allergies won’t know of the presence of the allergen, except by the bodily response.
The temperatures we are talking about of course are not extremes that should cause the body to respond like this. And that’s the frustrating thing.
The expereince of temperature is a subjective experience. A hot day in Antartica is different to a hot day in Hawaii. When I lived in London I smiled when at 20 degree people would be out in the park sun baking in the ‘warmth’. The Aussies would still be rugging up. So there is a cultural (or learnt) aspect to how we experience temperature.
But this alone couldn't explain the symptom based temperature issues I see.
What else is going on and is it possible to retrain ourselves to respond differently to temperature. My experience would suggest that we can.
So how can a physiological process like the thermoregulation of skin be retrained? Quite simply it seems, as Russian Scientist Ivan Pavlov showed in his classic conditioning expereiments.
Dogs gets food and hears a bell at the same time over and over. Then merely hearing a bell they begin to salivate.
Pavlov showed that an external stimulus (bell) could set off an physiological response in the dog’s Autonomic Nervous system (saliva). Fascinating stuff. Neurologists explain this with the saying ‘what fires together wires together’. Everything we do, think, experience changes the connections in our brains. So when two things happen at the same time regularly, those two things become physically linked in our brain. These dogs had neurologically linked the sound of the bell with the production of saliva through nothing more than occurring at the same time! Or put another way, something outside the body was now controlling their Autonomic Nervous System's responses.
Now that they are linked, you experience one (hear a bell) and the other starts (saliva response). This is known as Pavlovian Conditioning. Interestingly, a term that was used for a while was 'Reflex at a distance'. It says that external stimulus (outside of 'us') can directly turn off or on biological functioning. While many of us may have heard of Pavlov and his dogs, we may not have really thought too much about the implications of this. The implications are huge.
These types of experiments and understandings have created a field of science known as Psychoneuroimmunolgy (PNI).
For example we now know that if you drop an animal's immune system (artificially with a drug) and at the same time give the animal sugar, the animal links the drop in immune response with sugar. Now we have a 'learned response' to sugar. Just give the animal sugar and the immune system drops. So food or things we digest can set off a biological response. Interesting for those with food intolerances?
Other studies show that if a smell and a production of histamines occur at the same time they can become linked. Then just the smell will set off the histamine response. Interesting for those with chemical/mould sensitivities or hay fever?
How does this link to CFS?
Think back to the experiment with a lowered immune system and sugar. What happens when the immune system is lowered without a drug. We know prolonged stress lowers the immune system. Then with a lowered immune system any common stimuli that are present at the time can become linked to it. What stimuli might be linked - light, sound, smell, chemicals, movement, touch, foods, standing upright, an increase in heart rate?
The presence of the stimuli can then set off the Physical Emergency Response in the body.
If this connection occurs, I would suggest that you then have two options – avoid the stimuli (which drastically reduces life quality as the triggers are likely to be the common things around) or retrain the physical responses so you normalize your repsonses in the presence of the stimulus. ("What fires apart wires apart" is the other mantra of neurologists).
But breaking out of CFS and the automated Physical Emergency Response is more than just relaxing and slowing down. Most have tried it and it doesn't work. Our approach is to retrain the body and the brain to respond more appropriately.
I would say that it is an important part of the ME/CFS puzzle that must be addressed if full success is to be achieved.
Now getting back to how we experience temperature. Can we do anything about it. That is the question. Here is a link to a study done on
Hot Flushes (experienced by women after menopause and after breast cancer). We can use our brain to influence them so......Biological? Yes. Hormonal? Yes. Can we do something about it? Yes.
So with ME/CFS, I think avoiding the stimuli is a great way to stop the crashes but does nothing to stop the ME/CFS.
PS. Pavlovs’s dogs didn’t have a psychological condition for all those who still see CFS as a physchological problem.
PPS I wonder after Pavlov’s experiment finished, the dogs thought of bells when they ate. J If only dogs could talk.
