Re: M.E. Community Trust.org Local Support Groups

[Guest guest]

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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/priority-reliable-independent-research/story-1507\

9118-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

drjohngreensmithmecommunitytrust (DOT) org

Dr H Greensmith

ME Community Trust. org