By Lady Gwynneth Bain
When I first met my friend some twelve years ago he was full of energy, with great intellectual curiosity, and a finger in every pie. He had a wicked sense of fun, enlivened every party with his singing and guitar playing, and could never do enough to help a friend. He was the social glue which held together a disparate group of local people who came together mainly because of him. Some twelve years later, after suffering throughout most of that time from what is now recognised as ME, he is changed. He still has flashes of his old self on good days, but he no longer chivvies us all down to the pub on Friday nights, nor organises us to get out on the boat or go for a walk with the dogs. He cannot take alcohol any more, does not like crowds and is often totally enervated by the evening.
We all miss the person that he was. He became very self-absorbed and conversations with him increasingly revolved almost totally around his problems. As we watched his condition starting to overwhelm him, we felt confusion and sometimes even scepticism. It was very difficult for him to get a firm diagnosis of what was amiss, let alone appropriate treatment. Consequently, this lack of an official label led us sometimes to wonder – quite unfairly – whether it was all in his mind. There were a range of different identifiable physical problems, but the exhaustion which he experienced sometimes seemed to some of us amateur psychiatrists to proceed from psychological rather than physical causes. There was a temptation to want to tell him to pull himself together!
In the early days, before he found the therapy which now keeps his condition under control – a therapy he discovered through his own efforts rather than those of the medical establishment whose orthodoxies did not allow for ME – his decline was disconcerting to his friends. We did not understand what was happening and we did not really know how to help and support him. His physical pain was at times almost unbearable and his withdrawal into himself hard to comprehend. It came to a point where, after adverse reactions to inappropriately prescribed medication, he could no longer be left on his own. Luckily for him, one very good and caring friend decided to take charge and looked after him until he was able to function by himself again. The wear and tear on that good friend was tremendous and her contribution to his current partial recovery cannot be underestimated.
The reluctance of the medical establishment to engage with ME sufferers and get to the bottom of what causes the condition is most concerning. Until the condition is fully recognised and appropriate therapies are developed, the scepticism which is exhibited by the professionals will continue to influence the attitudes of society, making it all the harder for friends who want to help to understand what it is they are dealing with. That is the lesson I have learned from watching the travails of my much changed friend.