1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Re: M.E. Community Trust.org Local Support Groups

Discussion in 'Action Alerts and Advocacy' started by drjohn, Jan 31, 2012.

  1. drjohn

    drjohn Senior Member

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    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    This letter, which appeared in my own local newspaper, yesterday (Our priority is reliable independent research, Bristol Evening Post, 30 January 2012 -- http://www.thisisbristol.co.uk/prio...ent-research/story-15079118-detail/story.html), has also been published in several others around the UK, including Blackpool, Southampton, Lincoln and Newquay, in England, Paisley in Scotland and I expect all areas to be covered eventually.

    We have already had at least one application for the paid administrator's post in every constituency area so far advertised and we have set up a test page on Facebook to establish best practices for providing information and support to people with M.E. (not the nebulous Chronic Fatigues Syndrome(s), or contaminated CFS/ME hybrid, which is impeding progress for all patients, not only those who have M.E.), who are mostly unable to travel to attend groups, which usually don't serve them well if they ever do get there. Advice given to M.E. sufferers - especially about treatments - can be disappointingly ineffective and, in some cases, even harmful. Our immediate aim is to get at least a few of these M.E. Community Trust.org Local Support Groups and specialist groups we are planning, up and running to use as models for others to follow.

    Administrators will coordinate the efforts of willing members, who agree to keep local information about M.E. friendly doctors (and the other sort!), contact details for their MP and local newspapers, will try to write at least 3 or 4 letters a year and perhaps be case studies or subjects for research, in order to improve knowledge and increase awareness. In return for the best efforts that they can manage, without setting themselves back, members can expect to receive the latest information and research news, have the best help and advice with benefits - form filling, someone to accompany them to medicals and speak for them at appeals - get practical help with shopping, cleaning and gardening and meet others in the same boat, not only in the UK but all over the world, any time day or night, "virtually" by Skype and instant messaging, whenever they are up to it and switch it off when they are unable. The most severely affected people, often housebound or bedridden and those who who do not have Internet access, may be visited at home if and when they wish to have company. It is important to stress that members pay only one subscription of 2 a week by direct debit, no matter how frequently they visit, nor how many facilities or services offered by the M.E. Community Trust.org they use.

    You may wish to do the sums yourself (calculators and backs of envelopes ready?) to check that, if we cover all 650 political constituencies and attract a minimum of 100 members in each area (decide for yourself whether you believe that is a realistic proportion of the total estimated sufferers), we should create at least 650 new jobs for people to work flexibly from home and, apart from paying wages to those people and any administrative costs, have the best part of 2m for biomedical research - more than the Government puts in - all for a couple of quid a week each. Oh, we know that there is a big difference between the theory on paper and putting it into practice but Why didn't anybody think of trying it before now?

    No one will be pushed beyond their limits (we know how catastrophic that can be) and anyone who is so ill or poor that they would experience hardship by contributing effort or money, must not do so and will be exempt and freely supported by those with a bit more energy than they have. M.E. sufferers from all over the world are very welcome to join the M.E. Community Trust.org. You may not have a political constituency system, medical service or welfare system exactly like ours in your country but you will have equivalents and M.E. knows no geographical boundaries. We shall all profit by sharing our experiences of this awful illness. You will be very welcome wherever in the world you are.

    Comments are invited online under my letter.

    Best wishes
    John
    drjohngreensmith@mecommunitytrust. org
    Dr John H Greensmith
    ME Community Trust. org
     

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