Welcome to MEWL, which stands for ME in West London. ............Kickback 46 10 May 2004

See below an extract and contents of Kickback 37 ...Urgent.*May 12th 2004 ME Awareness day Demonstration*

We are a group of ME sufferers, mainly in west and south west London but not exclusively so, and welcome members from any location. The problems that ME/CFS sufferers face are the same wherever they live.

Our main purpose is to provide mutual support to fellow members, circulate the latest research on ME, and campaigning for the fair treatment of sufferers, to provide a true representation of the effects of the illness, and also to inform non-sufferers and less knowledgeable doctors, through real life articles, that M.E is a devastating physical condition suffered by hither-to bright active members of the community.

Kickback, our newsletter is sent out 4 times a year. Spring, summer, autumn and winter. Our Yearly subscription is 4 which covers printing and UK postage. We periodically hold informal meetings for those able to travel.

If you are interested in joining our group, or exchanging views/information or just keeping in contact, please email me,

Kevin Tripp the Editor at ......kickback@onetel.net.uk.. ...Kevin's Story.. ..Kickback 45/44. 43 42 41 40 39 38 36 35 ..... .............................................................................................. .......................................................34 33.32 31

An extract from the front page of our Spring Newsletter 'Kickback 37'............... Current Kickback 46

I had thought Kickback 36 was a bit dire, much taken up by those CMO articles. But you can't separate Politics and ME. I think most would agree the next most important thing to finding a cure/treatment/cause of this awful illness, would be to be universally accepted as having a "real" illness, to be given the respect that is given to sufferers of other illnesses. In this illness you suffer twice. You lose your career, your social life, and your ability to do anything physical. (as well as the discomfort of the symptoms). But on top of this you have to fight to be accepted as being legitimately ill. As if you would want to make it up! "That it, I'll just throw away the best part of my life, do naff-all for 10 years, that will be great I can laze around",
I don't think so. You try it, or just think it through..... Most of the sufferers I've ever met appear to be 'doers' and leopards seldom change their spots.

MS and ME (spot the difference)

When comparing ME with MS, I'm struck by the similarities of the two illnesses. There are two big differences. Firstly, a certain number of MS sufferers sadly die from their condition. Whereas in ME those that do die are mainly as a result of suicide, an even sadder situation, and a result of their desperation. The second big difference is that MS is much more accepted than ME. Of course this wasn't always the case, and even now a diagnosis of MS is made upon clinical examination (as with ME). There are no simple tests to confirm whether a person has MS.

In MS demyelination (destruction of the myelin sheath that surrounds and insulates nerve fibres in the central nervous system) can be observed using MRI scans. Demyelination can also be seen in ME sufferers (I've read many times). And the opposite of this process remyelination occurs in MS (*I assume also in ME), where the body is attempting to heal the damage. I believe this accounts for the variability of the symptoms in both illnesses. This variability makes it hard for non-sufferers and some doctors to understand our illness, where our condition is so changeable, but if this variability occurs and is understandable in MS why not in ME? .......................................*otherwise we'd all be dead

The cause of MS (like that of ME) remains a mystery. MS is believed to involve an autoimmune process, amongst many other things the virus HHV-6 (as in ME) has been implicated, but not proven to be a causal agent.

Contents of Kickback 37 (12/4/01)

1 Hi, my name is ME. 2) Letter to my MP by Monica Marks. 3) The downside of Cannabis. 4 Did you see? ME in the media. 5) The Pinching papers. 6) Phil's story and bits from his web page 7) ME Mother and Son's suicide. 8) Book review by E M Goudsmit. 9) ME's severely Neglected. 10) BBS M.E articles information List..... and lots more

Next Newsletter end of Jan 2002

Disclaimer: views expressed on this web site and in the newsletter are not necessary those of the Group or the Editor.

Note this site is a first attempt and will hopefully be up upgraded in the near future. The current Newsletter will be shown with links to back numbers added.

back numbers:....Kickback 44/45 43 42 41 40 39.38 36 35 34 33 32 31 .full copies back to kickback 4 are available

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copyright 2001 Kevin E. Tripp ................... ..... ...............aspen associates ... .......................calculations for donations!

Aspen Associates (not ME...