One thing that has caught my attention of late is the news coverage of M.E./CFS in the wake of the Kay Gilderdale trial. If you don’t know about it, this is an article giving the details.
Basically, the mother of a woman with M.E. assisted in her daughter’s suicide and her trial was to establish whether she was guilty of criminal charges herself.
I believe that I have CFS/M.E., although I am nowhere near as impaired as Lynn Gilderdale obviously was. I have found it very difficult to deal with and until very recently have not had the opportunity to meet other people with the condition.
I’m currently in a group which is tailored to helping those with M.E./CFS. I am really enjoying the group because I’ve never met other sufferers before. I have had depression and anxiety issues that have come and gone, but the fatigue has been a persistent little bugger.
I don’t know why research into this condition has been so lacking, but I’m relieved that CFS has had this media attention, though it’s a crying shame it had to come on the back of this tragic case.
I do ‘get’ some of why the condition has been overlooked. It’s really hard to pin it down because, although lots of people suffer from it, the variety of symptoms that are experienced are quite startling. Sleep disturbance, muscle pain, joint pain, extreme tiredness that isn’t relieved by sleep, mood disturbance, cognitive impairment and flu-like symptoms are just a few of the symptoms observed in CFS/M.E. patients.
If there is no observable trajectory, with defined symptoms, through the course of an illness, then, obviously, scientists and doctors are going to disagree over many things. There is no test for CFS so it’s an easy target for claims that it should not be registered as a physical illness; rather, according to some, it should be considered a psychological disorder and treated as such. People who have muscle and joint pain as part of the CFS spectrum are, understandably, loathe to have their intensely real pain dismissed as having a psychosomatic basis.
I have my own personal feelings about this condition. I don’t strongly object to theories that CFS may have a psychological basis, except where those theories seek to reduce research into the possible physical causes. Not enough research has been done. That’s an understatement. More is needed to try to unpick the confusing array of symptoms and possible causes of CFS. I don’t care if that research finds that there’s a psychological element, just as I don’t care if research proves a physical cause. As long as the research is being done that’s all that matters.
Perhaps it will be shown that, within the symptom dumping-ground that currently exists, there is actually more than one disease at play. That would be my uneducated guess.
As far as the individual Gilderdale case goes, I’m much relieved to hear that Lynn’s mother has been cleared of all criminal charges. I feel desperately sorry for that girl, bedridden for 17 years, she must have gone through enormous suffering. Extracts from her diary have been published that give an indication of what she was dealing with.
I wanted to say something about this case, firstly because of my own history with fatigue symptoms and, secondly, because CFS/M.E. presents us with an interesting example of how the physical and mental are interlinked. Body and mind are entwined, like a married couple, for better or worse. People with CFS/M.E. are more likely to have mental health issues, such as depression and anxiety, than the general population. This could be because there’s a chemical change in the brain that comes with the illness, or it could be because having any chronic illness just is depressing and anxiety-provoking (financially, emotionally, practically). As is normally the case when we don’t have definitive proof, the rote answer is it’s probably a bit of both (chemical and psychological).
From things I’ve read it appears that there is a proportion of M.E. sufferers who rail against the notion that the illness has a psychological basis. This isn’t surprising I suppose, because physical illnesses do get more serious attention and probably more money thrown at them. I have a foot in both camps because I have had a depressive breakdown as well as anxiety. I wouldn’t be surprised if the stress of my breakdowns were a partial trigger for my CFS/M.E. because depression and anxiety don’t just hit your mental health, they seep through to every part of your system. Stress on the body and its immune system, whether from a physical or psychological illness, all takes the same toll.
Anyway, the issue of assisted suicide and creating a set of laws to allow for it, while not providing loopholes where it could be abused, is not a subject I want to get into. Yes, I am getting splinters from sitting on this fence, but at least at the fence I have access to both camps’ opinions and can hear people out when they come bounding over to me to tell me their new ideas from either side.
Religion isn’t an issue for me, personally, as I’m a lapsed Catholic. So, I don’t object to assisting death from that point of view.
My Dad told me a story about a guy he’d known a long time ago – a rugby player – who had an injury and ended up in a wheelchair. He took his own life within a year of becoming disabled. I had a think about this and found myself wavering about my own views.
On the one hand I feel strongly that he, as an individual, should have a right to decide that his quality of life is not good enough to stay alive (the link, above, to Lynn Gilderdale’s diary, illustrates poignantly that deciding when one’s quality of life is too low to continue is a very personal journey). On the other hand, this guy had gone from having his identity bound up in rugby, to having his identity fall away. The likelihood that he would be suffering from Post Traumatic Stress Disorder, Depression and Anxiety, is fairly high. So, in his case, I’d be uncomfortable helping him to kill himself. I’d wonder if he would see things differently given the right support and time to discover what other things he might find fulfillment from after grieving for his lost rugby career. Lynn Gilderdale, on the other hand, had had 17 years of CFS/M.E. I can understand why she did it and why her Mum helped her.
Footnote: This was in the news a few weeks back, but, owing to my own fatigue issues, I’m only just editing it for posting now. Ironic, huh? 😉