KICKBACK 44/45 3/5/03

MEWL Newsletter Winter/Spring 2002/3

*Urgent May 12th Demonstration and Rally*

Apologies for the lateness of this newsletter (normally out in January then April) but I've recently been snowed under. Hope you had a pleasant Christmas. I seem to relapse every year at Christmas. 'Normals' will at this point think, ah, can't stand the stress. Well I must admit I've got to the stage, being a vegetarian and an atheist that the festive period doesn't have that much to offer me. Too much overindulgence and hypocrisy. Uh humbug! I've got to the stage where 'It's just another day'. Which it is. Dr Cheney spoke of the three phases in ME. I think there is many more. The illness seems to evolve or mutate where you loose some symptoms and gain new ones, which can vary throughout the day. For me Ciara MacLaverty's article from the Scotsman and her term "poisoned heavy fatigue" strikes a chord. (See page 3). Well for the last month I've had a complete remission, could do anything without repercussion. Sadly almost predictably it came to an end and after thinking once again I'm fixed, the wretched thing returned legs like lead achy and fatigued. Yes 'poisoned heavy fatigue' is a good description. But I've got some wonderful news (see page 4) many will say ah 'this is why you now feel so rough'. I have to admit I've pushed the boat out a bit but I don't believe it makes any difference at all. If we feel good we do things, if we feel wretched we don't because we cant! It's as simple as that.

Recent ME news was dominated by the publication of the MRC's Draft report, and once again criticism of the main ME charities, do they truly represent people with ICD10 ME or mainly those suffering from a somatic functional disorder. The latter would respond to Graded Exercise or Behavioural Therapy the former would surely not. Then Charles Shepherd muddied the waters by mentioning that secondary mental disorders within ME are often neglected. But to me I see this as 'ME sufferers as having depression' most don't 75% of the worlds population do.

The other item is ME Awareness Day, and the May 12th demonstration being arranged by Trevor Wainwright from Castleford Aid for ME, see page 2 for details. Trevor's Daughter suffers from ME and he is very active in championing the plight of ME sufferers. Below is an extract of something he recently wrote about his daughter.

'I am not a patient but for the last 10 years I have had to watch my 20 year old daughter suffer, both from the ME and disbelieving docs, how I would love to trade places with her. I have seen ME destroy her hopes of a social life, a full education, the chance of a career, the chance of relationships. In short she is 10 years into a prison sentence with no release date, and I little more than a prison visitor.'

'I have also seen in the past 10 years the devastating effects it as had on others, listened to people on the telephone asking tearfully "others appear to get well, why can't I?" what does one say. I have seen young people come to meetings and leave early having had a relapse, I have seen the despair in their eyes as this has happened.' I've not met Trevor but know he's a real champion. Please get involved in any way you can with the demonstration. If you can't go, perhaps you could write a letter to your MP. Mahboob had a great idea, she photocopied the details of the event and left them on display in her local library and hospital. Brilliant.

MEWL Meeting Thursday 15th May 2pm. Network Mesh Meeting Summer Tea Party Sunday 22nd June 3-5pm

CONTENTS

1) May 12th ME Demonstration and Rally. 2) The Scotsman: Tired of being me. 3) A child is born.

4) Breaking free of ME the prison without bars 5) Paul Davis's (RiME) open letter to Tony Wright.

6) RiME response to MRC Draft Document. 7) My Thyroid test by Joy Anthony.

8) More similarities with MS and ME. 9) Diagnostic test for ME.. 10) Research kills theory ME is psychosomatic

11) Shirley Conran - Tymes magazine interview. 12) ME accommodation and care homes

13) Sinead O'Connor and Barbara Windsor's illnesses. 14) CFS researcher Jos van der Meer knighted.