I also reside in the UK Katyw and for the most part the doctors just run through the routine tests to eliminate the things they know about. That is of course positive because then we are left with less to find out about however when they cannot really give a proper diagnosis it's somewhat hard because we have something which is physically and emotionally distressing and yet we cannot explain it to others or else get proper help for it; hence you became your own doctor.
Most of the doctors thereafter are not too interested because they have a budget and a hard to diagnose person can drain that budget and thus not leave to much for the other patients, who of course equally deserve their treatment.
My take on ME and from objectively monitoring myself from many years ago when I had a first slight muscle cramp was that it is initially caused by a virus and which the body never completely shakes off, so to speak. Yes of course high stress is going to affect people and lower resistance to things but the fact remains that many people have gut issues, high stress, viruses, etc., but do not go onto develop ME.
I often read stories about people who, for example, have had their leg amputated but still get pains in their foot and yet their brain quite clearly knows there is no leg or foot in one part of it but still thinks there is a leg and foot in another part of it.
The brain is one complicated and finely tuned piece of whateve we wish to call it. The brain mainly evolved to control muscles and that is it's main job and which it does subconsciously for the most part, involved in that of course is operating all those muscles in the right time and ensuring they have the energy etc., to do it at the right time.
This is a heck of a lot of coordination which needs to be done; it's a complicated system. The system may not be damaged enough to be detected by the usual tests but I tend to feel those tests are looking for damage rather than interference and that is the issue. It's rather like looking at society and running a test to find out of 10,000 people have died in a town and then saying 'oh yes 10,000 people have died there is a problem', it's easy. However it could be that those 10,000 people were not all functioning as well as they could do and so overall developed symptoms such as more local fights, shops ran out of some products, more car crashes, one of the schools started performing badly etc., and instead of it being because they were all dead, which of course is nonsense, it was instead because actually their communications, daily routines, connections, etc., were slightly disturbed and over a period of time.
Now what test would we do to be able to detect this interference, I ask myself, because that would be one complicated and expensive test. From my own observations I believe the body has a virus and this causes the immune system to go slightly off balance and this starts to interfere with the brains normal processes, not causing significant damage which can be easly detected but just increasingly interfering with them. Interfere with any complex system for long enough and eventually other things will start to show up, but then diagnosing the cause becomes increasingly difficult because now we are in a mess of things with many variables.
We all tend to carry a range of other things and so of course people start to say well it could be this and it could be that and we all add in our different this's and that's and before we know it we have introduced our own 1000's of variables and which makes it more confusing. I personally had a two week period where everyone of my symptoms switched off so to speak, I went to bed one evening feeling sh$te and then the next day I woke up like a different person and two weeks later I picked up a significant cold and then it switched on again, and significantly worse.
People in these forums are really all looking for the same thing, a fix, and/or hope of a fix. We are all trying different things and sharing our experiences in the hope one of us finds something which works and can then be applied for all of us. Doctors cannot put the immune system back into sync, if they could then of course they could cure a range of other illnesses.
In my opinion most of the other stuff they are doing is also just trying various things and in my opinion if we see enough people then we are going to have some success. I do however tend to think we the people are going to find the solution rather than medical science who for the most part do not have the resources for it.
I know people with gut problems who do not have ME and I know people who pick up colds and flu with ease and no ME and I know people with high stress jobs with no ME and I know people who have had more sexual diseases than I care to mention who have no ME, in fact I know some people.
In my opinion and unless a person has a specific detectable condition then we have to concentrate on trying different things in order to disturb the complex system and hope that we find a way to kick it back into sync, but in doing this we need to be careful not to do so many things at once we did then do not know which one worked.
I also think that pleasure, laughter, positivity, etc., need to be in there as well because these are things we either neglect when we are ill or else we find extremely difficult to do. One thing I do remember is that the day before my issue switched off I went out for an Italian meal with a very attractive young lady and with whom I was very fond of and we had a brilliant meal and talk etc., and it's hard to explain how good that evening was. I did not go out and pretend to be happy etc., I just was.
I have since thought about the meal I had etc., and other things I was doing days before to see if there was something else which may have been different to what I was normally doing, but no nothing. May have been just luck and not in anyway connected to that evening out, who knows, but unfortunately I do not have the same fondness of her today and so cannot really get to that emotional zone again to retry the experience and see if it would help.
I personally am not a doctor but I am a complex systems person and so I think we have to try to find a way to fix one or two of the key parts of the system such that the rest of our complex self healing system can fix the rest, because no doctor is ever going to clever enough to address all the issues. Keep talking and hopefully one of us will one day find the solution. Regards.
