• KICKBACK 38...18/07/01
  • part of MEWL Newsletter Summer 2001



    1. CFS and FMS Reclining club. 2) My CFS Story by Simon B Franklin. 3) Our cocktail of hope (story update)
    1. Book review by E M Goudsmit. 5) CMO Report on CFS/ME "Expectations were unrealistically high" view
    1. Computerised test for injury and disability. 7) Last Aprils Meeting. 8) BBS information articles.

    I hope you haven't got the summertime blues, (sometime in May - feeling pretty rough) L

    A bit of sunshine doesn’t help much, does it. Unfortunately one is reminded of the things we can't do that others take for granted. Yes, summer was designed for the able bodied. Let's go over the park and mess about with a Frisbee or go for a swim. Now such pursuits seem totally reckless, energy management or conservation more appropriate. It’s also a time to show off that tightly honed body (not), these days it takes a lot of courage for me to go out sleeveless or in shorts, it doesn't bother me but I feel people are sometimes embarrassed. (I've seen more meat on a sparrow). Just this evening I walked to the local shop to get a newspaper, I try to walk whenever I can, even if the exercise does me in. Some chap stopped to ask me where he could get a certain bus. Whilst trying to help with his requests, he then stared at me and politely asked, "are you on smack" or perhaps "methadone". He said my eyes suggested such. I said NO, but explained I am suffering from ME/CFS and when I'm in a relapse (my usual state) walking messes me up big time.

    I knew I felt rough but didn't realise it would be so obvious to a complete stranger. A lot of the time we look OK but feel awful, but some times we feel rough and it really shows. I've had neighbours say "my god what's happened you look awful", which is true, I was feeling awful at the time, but for us that's kind of normal, read the diary "felt awful, felt awful", it becomes very repetitive.

    Yes, it does help to see a blue sky, but the benefits are outweighed by the frustration of not being able to partake in its riches, and if you are fatigued the heat doesn't help. Given the choice most people, sufferers included would prefer summer to winter, but the "you are probably feeling better because it’s a nice day", has little substance.

    Since writing the above I've had a remission.J It has lasted over10 days although it is beginning to fade.K

    *Our Web Site*

    Yes, it had to happen, we now have a presence on the Internet. Our address is: web.onetel.net.uk/~kickback

    Our home page describes us, inviting membership and has an excerpt from the latest newsletter. Links to past kickbacks, and the contents description of each edition are included with links to the more important articles that appeared in them. The site will be updated with the latest kickback a few weeks after its publication.

    For those of us who aren’t online or not interested in being so, don't worry you are not missing anything as the web information is only extracts and not meant to replace the full printed copy of the newsletter. Also note that members details or references are not included, and would only be so after full consent from the particular member.

    Our contact email address is: kickback@onetel.net.uk note copies of newsletters or articles can always be emailed to members.


    Monday 10th September 2pm c/o Helen Lyons, ........(address withheld)


    Sunday 2nd September 3-5pm c/o Tony Golding, ......(address withheld)

    Please telephone first if you are going to any of the above meetings