# The Report Of M.E. Day - May 12



## M&M (Jan 20, 2002)

MAY 12TH INTERNATIONAL AWARENESS DAY FOR M.E./CFSThe Myalgic Encephalomyelitis Association of Ontario is pleased to havearranged the following: ONTARIO LEGISLATIVE ASSEMBLYMPP Tony Ruprecht, has agreed to give a Member's Statement on M.E./CFSand Fibromyalgia in the Legislative Assembly - exact date is unknownCITY OF TORONTO, ONTARIO, CANADA, DECLARES MAY 12TH AS M.E./CFS AWARENESS DAYMayor David Miller, on behalf of City Council, has declared May 12th, 2006 as M.E./CFS Awareness Day in the City of Toronto. MONDAY, JUNE 5TH TV STATION: CABLE PULSE CP24 Channel 24 on Toronto Rogers Cable Please check your local satellite number for CP24DATE: MONDAY, JUNE 5THTIME: 5 PM TO 6 PM. THE HEALTH SHOW CP24'S PHONE-IN TELEPHONE NUMBERS FOR YOUR QUESTIONS: 416-872-2724 1-877-863-2724GUESTS: ALISON BESTED MD F.R.C.P. (C ) Hematologist Pathologist Lecturer, Department of Family and Community Medicine, University of Toronto A member of the Expert Review Panel for the Canadian M.E./CFS Definition, Diagnostic and Treatment Protocols. Environmental Health Clinic Physician, in Private practice.Dr. Bested has had over 15 years experience in treating patients with M.E./CFS, FM and Multiple Chemical Sensitivities. LYNN MARSHALL, MD, FAAEM FRSM(Fellow of the American Academy of Environmental Medicine) F.R.S.M.(Fellow of the Royal Society of Medicine), Co-Director of the Environmental Health Clinic, Toronto, Lecturer, Department of Family and Community Medicine, University of Toronto, Assistant Professor of Family and Community Medicine, Northern Ontario School of Medicine Please phone- in lots of questions!The program will air again in the evening but you will not be able to phone-in questions. Please check the time on your local cable time-table.


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## M&M (Jan 20, 2002)

Posted to Co-Cure:*****************************************************The Report of The M.E. People's Day 12 May 2006Apologies for the rather delayed report on The M.E. People's Day 12May Rally - 2006 due to a 15-day M.E. Awareness Week and a recentfamily celebration.The morning started with a hearty breakfast of (organic) salmon andvegtables, before meeting members of The M.E. People's Presentationteam at 7.00 AM. With my 'trusted steed' (mobility scooter







bundled in the boot, we set off for Whitehall, arriving in Londonby 9.30 AM. I made my way to the formidable buildings of Whitehall byscooter and noticed a few people gathered already outside the Department ofHealth (DoH) relaxed in chairs in the fresh morning air. Wegreeted one another and new arrivals - Maggie Wallace from Co-Cureand husband, two people from London MESH, small group from Essexand a few new faces. Our "M.E. People's team," dedicatedvolunteers, mostly neurologically-challenged by M.E., Epilepsy and Dystonia,members of our Self-Help Group in Peterborough (the younger members)designed and made the M.E. People's Day banner, which simply read "The M.E.People's Day 12 May Rally" with great effort put into the largebanner (8'x3').Responses regarding Presentation for 10 Downing Street werereceived from all M.E. charities (except for two) approached, were confirmedand listed below:* MERGE (large thick envelope of research, letter to PM and MERGE DVD) presented by Barry Jones* Co-Cure (large envelope) presented by Maggie Wallace and husband* 25% M.E. Group (large thick envelope) delievered by Doris Jones and presented by Lesley Jones (not related)* BRAME (large thick envelope) presented by Tanya and Christine Harrison from BRAME* CHROME (large envelope) presented by Di Newman* MEACH (large envelope of papers and heart-rendering stories of those severely affected by M.E.) presented by Maggie Wallace and husband.* An excellent paper on Plecondril by Dr Betty Dowsett, presented by Di Newman* Tymes Trust (large thick envelope) presented by Di NewmanI briefly visited the Invest In M.E. Conference (IiME) in nearbyBirdcage Walk and heard Professor Malcolm Hooper's speech based onthe sciences of M.E. and GWS and managed a glimpse of the many inattandence. On leaving the venue to return to the Rally, NeilRiley (MEA Chairman) called out, saying he was going along to seethe Rally - in his personal capacity and handed me a small whiteenvelope (one-page hand-written letter) to be handed into 10 Downing Street.Back at the Rally, others had arrived, including Gus, Paula, Phil,Cirian and John. Tanya and Christine joined us from the InMEconference for the 12.30 PM Presentation team. On arriving atthe gates of Downing Street, we were greeted by heavily armedpolice. As Maggie and Tanya were in wheelchairs with theirassistants and I, with a scooter, 8 of us, including Colin Parratt wereescorted through.The Presentation session was great fun! Christine knocked on thegreat door of No.10, where an officer kindly accepted ourpresentations one by one, listening to each brief description onwhy they were being presented. A further 20 minutes was allowed atthe steps of No.10 for a 'photo-session' (included on the M.E.People's website, shortly).We re-joined the others outside the DoH, where Cirian said to me aDoH security officer commented to him that several "complaints"were received and that we risked being "arrested". naturally, Iimmediately investigated this with the DoH security. Ittranspired no "complaint/s" were received. With everything according toschedule and pre-arranged with the police and DoH, at 1.15 PM, delegatesmoved on to the House of Commons Lobby Queue (disabled andable-bodied through their designated entrances). Those inattendance, mostly knew the Committee Room areas, where Ijoined them (after finding a lift to accommodate my scooter!) inCommittee Room Six, where Cirian and Gus appeared to leaddiscussion (ME conference funding and ME charity matters).Discussion quickly turned to the M.E. People's Day event and Maggieand husband joined us following the only lobby with their MP. OurPeterborough MP who was very helpful at last year's MP lobby wasunable to attend this year. Discussion followed that the 2007No.10 Presentations and House of Commons Lobby should be onWednesday or Thursday in M.E. Awareness Week, as 12 May fellon a Saturday. The consensus was the M.E. People's Day shouldremain on 12 May. Cirian attemped to lead discussion on votingfor the 2007 team. One or two limited negative remarks regardingthe M.E. People's Day and the IiME Conference were made.However, the overall feeling was that M.E. was presented to No.10and House of Commons on M.E. Day!Subject to later being informed that Cirian had taped the entiresession, including several personal comments from delegates. Ifeel concern raised, over voting a 2007 team was justified andtrust Cirian will exercise due respect over confidentiality issues inrelation to the personal nature of some participants commentsand not make these public in any form, without their expressed consent.The high-light of this year's event was the 10 Downing Streetpresentations, meeting up with Tanya and Christine, Maggie andhusband, those from IiME conference and the many passerbys fromvarious parts of the world, who signed the Peition launched thatday calling "For Science & Research Based Healthcare Policy forMyalgic Encephalomyeitis (M.E.). Although down in numbers, with theGood & the Great at the IiME conference and MPs generally not Sitting ofa Friday - it was a great day to be remembered!I fedback a summary to Trev with later discussions on the 2007event. We both share the view that the M.E. event should be heldon M.E. Day, 12 May and where dates are not practical, there couldbe two events held, one as a social event and one for the No.10Presentations and House of Commons MP Lobby. Possibilities arefor No.10 Presentations and House of Commons MP Lobby on the Thursdayduring M.E. Awareness Week followed by a 'M.E.-In-The-Park' socialevent Saturday 12 May in a central London Park, including a possible'M.E.-Picnic.' So watch this space........!The online Petition is gathering in number and paper copies arepicking up momentum (No fileds are mandatory. Personal informationwill be kept strictly confidential under the terms and principlesof the Data Protection Act 1998)The petition, incidentally, has a deadline for mid November 2006for submission to Parliament on 3 December 2006.With kind regardsDiDi Newman, Organiser The M.E. People's Day 12 May Rally01733 55287207742 615 952MEpeoplesDay###Petition.ME.ukwww.Petition.ME.uk


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