KICKBACK 35 ...21/7/00

part of MEWL Newsletter SUMMER 2000

 

NEWSLETTER CONTENTS

  1. List of BBS Information Articles. 2) Letter to my MP. 3) In the News Emily Wilcox
  1. M.E is not a middle-class disease. 5). Mycoplasmal Infections 6). Members Profile Nadia Amara.
  1. CFS awareness in Europe/recognised in Belgium. 8) Chronic Fatigue Syndrome (CFS) Research Review. view
  1. An international perspective on M.E. 10) Members views.

Greetings,
If you blinked you might have missed summer (the same applied to M.E awareness week!) Apart from that hot week in June, it's been a very wet affair. But like the rain our suffering has to stop. Everybody seems to have been particularly poorly just lately, in fact for the first time no one managed to make it to Helen's meeting in May. One of the regulars had a hospital appointment and John recently changed address and didn’t get his newsletter in time (to know about the venue). We will certainly look forward to the next get together.

I've been wracking what's left of my brain, and, think we have to get more ACTIVE. We have to stand-up and be counted. We have to let those in power see that we are a large group of intelligent people who want to get back our former health and lifestyles. Not suffering from Depression, although sometimes depressed at having a long-term illness. We certainly don't lack motivation just the energy to carryout our aspirations. Long-term illnesses move the goalposts, you accept your limitations, which then become the norm. If one-day walking is very difficult, and the next day it's slightly easier, you feel thankful.

Why should we be treated as second class individuals. Why can't we have sympathetic GPs, educated about M.E. Why can't we be referred to specialist clinics. Why can't we have proper research into the physical causes of M.E. Not reports from Psychiatrists who know nothing about the illness, and come out with cock and bull stories of sufferers perpetuating their ill health by dropping-out, abstaining from taking alcohol*, becoming de-conditioned etc. Why should we be denigrated when applying for benefits. Having to bow and grovel for a meagre handout and treated like malingerers. No one would choose to exist on sickness benefit in preference to a decent salary? No Child would lie in bed all day in preference to playing with their friends, its ridicules.

The Government soon finds money to waste on Missiles and for Millennium projects. Why not M.E. research.

What if we all (those able to) held a mass demonstration on the green outside the House of Commons. Just imagine all the M.E. groups that exist. We would at least be noticed! We couldn't be ignored. And they would see the size of the problem. I've recently sent a letter to my MP (see page 2 ). She said she would try to attend the All Parliamentary Group's next meeting. If anyone needs any help, typing a letter to his or her MP or ideas on what one might include etc. just ask me. If anyone has any ideas of how we could become more active please let me know. I think its time we stopped being a passive group, watching the trickle of theories and research that appear, mainly from outside the UK,which although are of interest, are getting us nowhere fast. I believe we should use our best asset, our numbers.We have to become a nuisance, a problem that won't go away.

* I've heard that intolerance to alcohol is a classic M.E symptom. And that if one doesn't have intolerance to alcohol one probably doesn't have M.E. (this being in complete contrast to a person suffering from depression) but I think this applies more to the earlier stages of the disease. Anyway having M.E you don't need to have a drink to experience a hangover, or feel out of your head. But I would say that not all sufferers are tea total, by any means.

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