NewsSo what is M.E. / Chronic Fatigue Syndrome?01 March 2010
What’s in a name? With a range of triggers for the illness, and with the cause of it’s chronic nature as yet uncertain, there are several names by which the illness - that affects 250,000 people in Britain - is known, and which are listed on the M.E. Association’s website (along with a raft of helpful information) (link to - www.meassociation.org.uk) as follows:- • “Myalgic Encephalopathy or "ME" “All types of people at all ages are affected. Commonplace symptoms are severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset.” Some people with M.E. / C.F.S. are unable to get out of bed, others, like myself are luckier, we can function … just! I manage to work four days per week, but the process of doing this is complicated and leaves very little energy for anything else in my life apart from resting. One analogy I find useful is the way we are trying to reduce our carbon emissions. Try to imagine that you have a limited supply of electricity in a battery, instead of a continuous supply of energy every time you turn on a switch. This battery must last the entire day. If you exceed this amount, you will be given even less the following day and so on. The decisions about where to use this valuable energy structure my days. So for example, if I drive to work, I can manage 4 hours at a computer. If I walk, I can manage 2 hours. If I work for 2 hours at a computer, I can cook a meal when I get home, if I work for 4 hours at a computer I will need someone to cook for me. Everything is in a state of flux, and it takes quite a lot of organisation to work out what is essential and where the energy can be found. So how might this impact on your work as an employer or Social Inclusion worker? It’s always useful to keep an eye out for a member of staff or volunteer who may be experiencing the ‘slow, insidious onset’ described above. It’s often the case that someone’s decline is so slow that it’s not noticeable to the person themselves. They may feel that they are under the weather, or just a bit run down – one’s perception of ‘tired’ is relative to the day before, and the day before that etc. In addition to this, the more tired we get, that harder it is to get perspective on how we feel. The slow insidious onset can be likened to the boiling frog syndrome (http://en.wikipedia.org/wiki/Boiling_frog), we just keep trying to push on even though we are gradually losing strength. Several professionals who know me have mentioned that they had concerns at least a year before I was diagnosed. So what should I be aware of if I’m working with someone with M.E. / C.F.S.? The main thing, as with all aspects of social inclusion, is to ask the individual. Everyone is different and will have different needs. In the course of my working life, these are the 6 basic adjustments I would ask people to be aware of: 1) Times of meetings – some people are better at certain times of day, some people have to rest at intervals throughout the day. Make sure your meeting doesn’t eat into someone’s ‘rest’ period or ‘crash’ period. 2) Sensitivity to light – some people are very sensitive to bright lights or can find it hard to function in gloom because of the extra effort required to focus. Make sure you pick a room where the light is adjustable. 3) Sensitivity to caffeine, alcohol, sugar etc. Stimulants can be very hard work for people with M.E. / C.F.S. as they force the body to release reserves of energy. If you’re providing refreshments (Tea Coffee and Biscuits etc) make sure there is a herbal option and a no sugar option. One cup of tea can knock me sideways for 3 days! 4) Be aware of ‘brain fog’ – One symptom of M.E. / C.F.S. can be the inability to process information, respond or think quickly or even get words in the right order. Be conscious that a person’s ability to respond does not necessarily reflect their understanding of the situation – it might just be that they can’t process it at the moment. If possible allow several days or weeks for someone to get back to you, so that they can choose to do the work when they are able to think clearly. 5) Be aware of joint pain and physical arrangements – Some people with M.E. / C.F.S won’t feel comfortable walking more than a few metres. Always check that there is parking at your venue and that there is level access to the meeting room if you are expecting someone with M.E. / C.F.S. to arrive. They may not be a wheelchair user but their mobility may be low. Additionally, some M.E. / C.F.S sufferers experience back, joint and muscle pain, so they may require alternative seating arrangements. One woman I spoke to when researching this article said that she can only concentrate if she is reclining. It may also be useful to make sure there is a ‘chill out’ space available if the person needs to rest before, during or after the meeting. 6) Climbing Everest! - Remember that your friend or colleague with M.E. / C.F.S. lives on a different level of energy to most people. It can mean a walk to the post office is like swimming the channel or a bus trip into town is like climbing Everest. Think back to your most exhausted experience, it might be the lack of sleep from living with a new born baby, or it might be a physical challenge like running a marathon. The heightened emotions, stress levels and lack of short term memory you may have experienced in those times are continuous for people living with M.E. Don’t be alarmed if the person is overwhelmed, emotional or stressed! I hope that you find this useful. I will of course have left out many things which other M.E. / C.F.S. sufferers would include, the best advice (as always with social inclusion!) is just to ask the individual. For more information about the illness and support groups in Devon, visit the ME Association website: http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=969:devon&catid=106:find-a-local-support-group&Itemid=204
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A Devon Professional talks to Open Hearts Open Minds readers about her own experience of living with M.E. and describes 6 key things you can do when working with colleagues and clients who have the illness.