There are many research programmes under way by people far cleverer than I am to try to pin down the cause of ME. However, when you suffer with it on a daily basis, I feel that you need to hang your hat on something, just to give you at least a little bit of hope. Therefore having read many a paper, listened to plenty of doctors and researchers, my view is that ME is caused by a virus. This can come into the body by being ingested and affecting the gut, or breathed in or whatever.
Once in your system, the immune system fights the virus by releasing immune mediators like interferons, cytokines (cell killers) etc. These substances, our own toxins, are thought to be the substances which make ME/CFS sufferers feel ill. It is thought that part of the problem is that even after the virus has gone, or gone ‘gone into hiding’, the immune system has become switched on and can’t turn off. The immune system is in effect attacking healthy organs, tissues and cells causing damage to the nervous system which controls the running of our bodies.
The effects are numerous and the difficulty for the medical profession is that each patient can present with different problems. A big emphasis is put on fatigue. Although this can be a major effect, I find that it’s the elements that lead to my fatigue that need to be the highlight or focus. Background noise or conversations cause me major issues. I can’t tune out of background conversations meaning I can’t then hear the one I’m involved in. The effort to do so drains me in such a way that my whole body stops functioning properly. This can be through not being able to come up with simple words, or indeed slurring words when I speak. This effort leads to major fatigue. When I’m in this state, if somebody speaks to me it’s as if they’re throwing a bucket of words at me and they’re just bouncing off, meaning nothing, with my mind not knowing what they’re for or how to deal with them.
Light coming through a crack in the curtains can have similar effects. There are many other things that can cause issues, leading to fatigue. A fatigue that totally stops you being able to function, think, speak, or move. Not just being a bit tired ! ME affects me in many other ways too, but my symptoms might be different to the next person you ask, that is the nature of ME !! Generally it affects sleep, some need lots, others can’t sleep, mostly sleep is unrefreshing as you never get into a deep sleep. Leg and body tremors and spasms, all over body pain, migraines, brain fog, memory loss, nausea, balance issues, affected by smells, light and sound, movement, loss of concentration, breathlessness / the feeling that you haven’t taken a breath and so continue to try and inflate your lungs, restless leg syndrome, thyroid issues, colds and sore throats that don’t go away, did I say memory loss? (joke) etc., etc….. As for the fatigue? It’s like three rugby players sitting on my shoulders and driving me down into the ground. Showering is no longer a refreshing activity. Gone are the days of a quick shower and dash out the door ! The effects, sounds and sensations of having a shower leaves me in such a weakened state that I can need an hour for my system to settle afterwards.
I’ve also had situations where I couldn’t make a simple choice between a tin of peas and carrots in a shop and stood there for a full five minutes with my head pounding, not being able to decide. Having to be taken out of a supermarket as I was overcome with the lights and background noise to such an extent that my legs stopped working and the staff had to take me out in a wheelchair. I also had so little brain function that I couldn’t find the words to explain what was wrong with me. That’s ME.
Although self funded research is working to look at the effects on various parts of our bodies, I believe that efforts should also be concentrated at the source as well as what it later affects as without fixing the source problem, it will continue to affect the various organs and systems in our bodies. The trouble is that we can’t just ignore these other areas as they do cause so much pain and distress.
My view is simply that the government should be funding research into all areas of ME instead of the funds being raised by sufferers, families and friends, but concentrating on what is causing the damage to the immune system which in turn is leading to so many other issues. I am very open to other views and opinions and will readily change my mind if something else more believable and understandable is put forward.