Wednesday, 2 June 2010

Views from Shoshi's Settee - M.E.

I haven't been able to do much on my blog for a day or so because I was totally exhausted after my birthday. I had major pay-back yesterday and lounged around on the settee all day in one of my new kaftans and my hubby had to do all the meals etc.

One of the major symptoms of this disease (M.E.) is "post-exertional malaise" - an exacerbation of some or all of one's symptoms and an overwhelming exhaustion, not while you are doing things, but delayed until the next day or even later. It can go on for any length of time; some people, after overdoing things even a little on one day, can be put in bed for a month as a result.

It is absolutely wrong for people to believe that we are "just a bit tired" all the time. I read somewhere that "fatigue is to M.E. what being a bit forgetful is to Alzheimer's." Unless one has experienced this degree of exhaustion it is hard to understand. I describe it as "having my plug pulled out" - just like when the plug is pulled out of the bath, and the water all runs away, so my energy drains away until there is nothing left.

For this reason, the current trend to rename this illness as "Chronic Fatigue Syndrome" shows a complete lack of understanding. A "syndrome" is merely a collection of symptoms, after all, so it does not describe a specific disease, and the name also emphasises "tiredness" to the exclusion of the many other and varied symptoms to which we are all prone. In my opinion, the term "CFS" trivialises this severe, chronic and extremely debilitating disease for the benefit only of those who wish to politicise the illness, re-brand it as psychological, and save themselves the money which we need in order to make ends meet because we are quite unable to work. Medical insurance payouts are considerably less for psychiatric illness than for organic disease.

With the ongoing research and the recent breakthrough in the discovery of the involvement of the XMRV Retrovirus in M.E. patients, let us hope that M.E. will soon achieve the status of "respectable" illness in the same way as M.S., which was once known as "the faker's disease." Meanwhile, we in the M.E. community continue to press for public money to be spent on real, biomedical research into this devastating illness, and the abandonment of the psychiatric paradigm.

1 comment:

  1. Hi, I was just looking through your lovely world when I spotted the 'Labels' section and this is at the top. My son, who is almost 29, has had M.E for two years. It has meant him moving back here to live with me, my husband and little boy, saying goodbye (for now) to his independence, his further education and any employment. He has to 'live' in a corner of my living room as we only have a two bed house and he sleeps on a fold-away bed, which is far from ideal. We bought him a soft leather computer chair to help ease the aching whilst he sits, but he says (woohoo) that it is very comfy for lengthy naps too. He seems to be on a recovery path at the moment, but, as I'm sure you know, 'been there, done that' before. However, I'm staying optimistic for him. I wish you well in your own fight against this awful disease. Thanks for listening. Mo x


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