Apologies for not being more specific in my first post. Thank you to everyone, I am very pleased to have received so much interest and informative relevant comments so quickly. I am an undergraduate student doing my dissertation with a medical anthropologist at the University of Durham, United Kingdom. It is only a small project and I was intending to transcribe interviews from about 10 interviewees. My model of M.E. is a multiple stress model where infections and mental stresses cause persistent symptoms of fatigue and post-exertional malaise, as well as other complaints such as brain fog and poor temperature control. As an M.E. sufferer myself I can appreciate the reality of these symptoms.
The focus of my project is on well-being and how CFS sufferers realise it in their own particular ways. A lot of the social science literature I have come across focuses on the delegitimating experience sufferers have where their perceptions and definitions of illness are disconfirmed by others around them; M.E. being a hidden disability of unknown eitology and questionable authenticity in the eyes of others. Also, I have read about how a reduced capacity for activity in Western society which values meritocratic individualism and self-reliance can lead to reduced self-esteem for CFS sufferers. Whilst these factors are often key parts of the illness experience of CFS, my focus is more on areas to do with subjective wellbeing. How CFS changes people’s motives in life, how they assess their quality of life making allowances for their illness?
The idea of M.E. being a modern malady due to the stresses of 21st century living is debatable. This idea was born out of reading into the ‘lost Eden myth’ amongst the anthropological literature; the idea that humanity was healthier and happier before the rise of agriculture and industrial capitalism. This theory that civilisation has ushered in a loss of authentic happiness dates back to thinkers such as Rousseau. I wondered if conversations to do with environmental toxicity, processed foods and perfectionist personality types relate to a larger discourse suggesting that stress-induced illnesses such as CFS are a product of an ‘unnatural’ society and an ‘unnatural’ way of living.
I was intending to use life history interview techniques to understand how sufferers make sense of their illness. One means that sufferers can do this is through creative hobbies such as painting. How do such activities help them come to term with their illness? The role of acceptance has been shown to have important impacts on subjective well-being with CFS. This can involve stopping searching for a definite solution to physical complaints, devoting more time to positive everyday activities, and re-evaluating personal goals, values and priorities. This has been shown to lead to less depression and anxiety and more emotional stability.
This forum is obviously very lively and knowledgeable and I would love for my project to be of real relevance and benefit for CFS sufferers. So any suggestions or relevant pieces of literature you could provide would be much appreciated. It would also be helpful to know whether there are any other projects being undertaken by Phoenix Rising which members have the opportunity to participate in? Or how my research might be used to benefit the interests of the forum?
Thanks again
Alex
The line about "seek first to understand, then to be understood" applies to your situation. There are a many intelligent people on this forum, including people with research/ clinical backgrounds, graduate degrees, etc. which is partly why you are also getting some pushback. If you're going to do serious research (and I did a thesis as an undergrad which was published), you need to present a coherent overview to your potential audience and I hope you have talked to your advisor about getting informed consent.
Any research should start with a good literature review. That is one time-tested way to learn about the topic, find out where the gaps are, and then do work to fill in those gaps.
How much reading have you done about the science and biology of ME/CFS? Have you looked beyond the humanities databases into the databases like PubMed or Medline? Have you tried looking beyond PubMed or Medline ? Do you realize that some journals are biased against publishing biology-based studies of ME/CFS? I'm in the US but as I understand, the UK tends to concentrate on psychological or psychiatric reasons for ME/CFS more than this side of the pond even. If you need a quick read, look at the IACFS/ME Primer or seek out info from the ME Association/ ME Research UK:
http://www.iacfsme.org/LinkClick.aspx?fileticket=iD3JkZAZhts=&tabid=509
http://www.meassociation.org.uk/about/what-is-mecfs/
http://www.meresearch.org.uk/what-is-me/
The UK orgs may also help you connect to scientists and clinicians who do research into ME/CFS. While you're not doing a biology-based paper, if you're going to do something in the field of medical humanities, it makes sense to know at least the basics of the illness.
If you're talking about how people live/ cope with a chronic illness, there is a rich literature on this topic and it goes beyond ME/CFS to cover people with a host of other conditions. Have you looked at that literature? I can tell you, as a sick person and someone who took care of sick people pre-CFS, I never judge how people cope with their illness then or now. Acceptance is not the only way; for some folks that helps, for others, fighting all the way is what helps. Personally, "painting" is not how I cope; research and advocacy is. So if anything, I would urge you to keep an open mind about how people cope. Here are some lay sources about coping:
http://www.alpineguild.com/COPING WITH CHRONIC ILLNESS.html
http://www.amazon.com/Life-Disrupted-Getting-Twenties-Thirties/dp/0802716490
http://www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264
(written by someone with ME/CFS)
Recognize that depression is not one flavor. The depression one gets say from losing one's job may be different from the depression after a heart attack. Research shows that the former may be mostly circumstantial/ psychological while the latter might be more cause by biological factors, like inflammation. In the case of ME/CFS, depending on the individual, it might be one factor or both. There's even a study showing that people with inflammation did not benefit from anti-depressants or talk therapy but only improved when given anti-inflammation meds.
And a "malady of the 21st century"? There were outbreaks and cases of ME/CFS in the 20th and even 19th century. It is not solely a recent phenomenon. Not to mention that there are people who live a healthy relatively stress-free life (and I'm talking eating organic, meditating, etc.) and still get ME/CFS. I'd also challenge the idea that people were "happier" or "healthier" in the past. Maybe if you were the lord of the manor but certainly not if you were the Dickens-type factory worker or serf on a farm subjected to the poor air/ water/ diet and with hardly any restrictions on your work hours. You could even look at life expectancy -- from 1900 to now, your average person in a 1st world country gained several more decades of life.
. I also wrote a masters thesis (nothing to do with this topic whatsoever) in the late 90's and really relate to everything that you said.
