Today, Monday, is exactly a week since I went to do those few hours of typing work for Sean.
I am still relapsed and spending most of my time in bed. I haven't been able to read or do much more on the computer than check my emails. I only read one or two, then have to shut the computer down. Today I was up for about 3 hours. I took Brakkie out on the scooter because he is unbearable when he hasn't been out. I had to buy black bags and bread anyway. Walking wasn't fun with pain in the hips and knees and the legs feeling as responsive as wood.
This delayed response is the defining symptom of ME/CFS and is called Post Exertional Malaise. An ME sufferer may look perfectly well when out and about, but they are not seen when suffering a 'payback' relapse because they are in a darkened, silent room feeling toxic and terrible.
Today, the newspapers announced that the Conservative Party wants to get people off Incapacity Benefit and put them on Jobseekers Allowance. This quote is from the Daily Telegraph, 5 October 2009
"The Conservatives predict that about 400,000 of the 2.6 million people on incapacity benefit are incorrectly claiming the payments.
People fit for work will be able to claim only the unemployment benefit of £64 a week – rather than £89 in incapacity benefit. They will be ordered to look for a job.
It is estimated that the move would save the Treasury £1 billion over five years."
They have a point. Taxpayers rightly resent slogging their guts out to support people who are no longer ill or who are claiming Incapacity Benefit under false pretences. In some completely economically depressed areas such as Mining Villages where all the mines have been closed down and there is no new industry to take its place, most people had to claim Benefits. Many had bought houses they could not sell and the house tied them to an area with no prospects of paid employment. Also, in the early days of the Labour government, Job Centre staff was encouraged to put people on Incapacity Benefit so the statistics for unemployed people on Jobseekers Allowance would go down, and the Labour government could use the statistic to their advantage.
I am not on Incapacity Benefit, but I am worried about the new proposals. Many ME patients look perfectly well, and would pass a medical examination, which would force them to work, risking a major relapse that could last decades. A severely relapsed ME patient is often tube fed because they can no longer eat. Many lose the ability to speak or sit up and have to live in a dark silent room, in pain, for years. They have to be washed and toileted as if they were babies. People can and do die of ME, which the World Health Organisation classifies as a Neurological illness.
I believe that a 'snapshot' medical examination of a standard, moderately affected ME sufferer is grossly unfair, given that its defining symptom which separates it from other fatiguing conditions is Post Exertional Malaise. To be fair, a few hours of activity should be done over 3 days, then the patient should be examined again on the 4th day, so that an accurate conclusion regarding the true state of someone's health can be drawn. Otherwise, it's just Bureaucratic Abuse and Bullying.
This site shows you what a severely affected ME sufferer looks like http://www.25megroup.org/ The young girl in the picture is dead now.
And this is probably the best single collection of information about ME on the net http://www.ahummingbirdsguide.com/
Please inform yourself about this horrible illness and write to your MP asking for a fair deal for ME sufferers.
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