M.E. Our priority is reliable independent research | This is BristolOur priority is reliable independent research | This is Bristol
Our priority is reliable independent research
Monday, January 30, 2012
Bristol Evening Post
STARTING this year people who are affected by the illness ME (Myalgic Encephalomyelitis) are invited to become members of an ME Community Trust local support group corresponding to their parliamentary constituency.
For the first time, instead of relying exclusively on volunteers, we are inviting applications for paid positions for administrators, to work remotely from home, for a flexible 16-20 hours (for example, disability claimants who are permitted to earn up to £95 a week, or unemployed people, £120 a week, while still claiming benefit or seeking work) to be paid for, on a non profit basis, from membership subscriptions.
Unlike most organisations, we do not take the view that ME is the same as Chronic Fatigue Syndrome (CFS) but that it is much more than mere tiredness, certainly not laziness, malingering, or some kind of psychological weakness. It is a genuine, seriously disabling illness, with a physiological origin.
We do not accept that conclusions drawn from CFS studies can be applied to people with ME.
We do not, therefore, recommend behavioural techniques or graded exercise, nor do we suggest any other treatment, whether defined as alternative, complementary, radical, or any supplements.
We only advise good primary care from a sympathetic GP for symptom relief and will help members find such a doctor if they have been unable, or feel neglected.
Our priority is reliable, independent, research, designed to seek a universally agreed diagnostic test – such as a blood test or scan – with the aim of suggesting effective treatment in the hope of a cure, or significant recovery, which would be funded by the Trust. In the meantime, members will be given support with benefits claims, practical help with shopping, cleaning and gardening, provided with the latest news and information and given the opportunity to make new friends and contact others in the same boat, by Skype and instant messaging, when they wish and turn it off when they are not able.
Members will pay £2 a week by direct debit, subject to a minimum membership of 100 per constituency area.
This is to cover the salary of the administrator, funding for research and to meet the overheads required to produce a newsletter and cover administrative costs.
We shall still depend on volunteers to keep the subscription at this affordable level.
Exemptions will apply to those for whom cost would bring hardship. Provision will be made for ME sufferers without internet connection to receive information by post or be visited by members who are more able if they wish.
Applications should be made by e-mail, to firstname.lastname@example.org
In the subject line Local Support Group, name of your constituency or postcode and in the body of the e-mail your contact details
In the subject line Local Support Group, name of your constituency or postcode and in the body of the e-mail, your CV and contact details
Or you may apply by post to Dr John H Greensmith at the address below.
Dr John H Greensmith
ME Community Trust.org