A Place for M.E.
I received the following email from a new charity based in Norfolk. I think it is a fabulous idea and wish them every success.
Our purpose is to provide adapted housing and specialist care to those with M.E. This is a world first! The Chief Medical Officer has stated that the “improvement of their (Severe ME sufferers) care is an urgent challenge”. This is because of their great suffering, poor quality of life, and social invisibility.
We hope to set up households of 4 people with severe ME to support one another and share resources. A Housing Association will provide a house with sound-proofed bed-sitting rooms, air-conditioning and wheelchair adaptions. 2 live-in carers, from the ME Care agency, will supply 10 hours of care to the household each day. We have also allocated 1 room in the household for respite care visits, for those with moderate ME to rest and recuperate.
We have made good progress with our plans: We have developed a relationship with a Housing Association and will put in an application to the Housing Corporation in 2008; we will also apply for grants to support our “Stay Home” respite care provision that we are working on – to allow families a break from the heavy duties of caring for those with severe M.E.
www.aplaceforme.info
DGME Network AGM
On Wednesday the 29th of August we held our AGM. Steve Richards, who I’m sorry to say is struggling with his health just now stepped down as treasurer (but remains on the committee). We are very grateful to Zoe Little who has replaced him in this role. Otherwise your committee members were re-elected unchanged. Dr Purdie attended and gave us an update on developments following ME Research UK’s conference. It seems that ME is moving up the political agenda and there is a recognized need for a service to be provided by the NHS. Alex Fergusson, our patron and former chair of the Cross Party Group on ME, who is now the speaker in the Scottish Parliament also attended and shared news of the future of this important group.
  
ME Petition
The following is from an email I received. Please read it, sign the petition and then tell all your friends and family about it. Make your voice heard!
As a long-term ME sufferer I have gone through the entire scope of
disbelief, difficulties in getting benefits, doctors suggesting GET and CBT
(in the same sentence as assuring me that they believe me when I say I have
a neurological disorder, thus not only insulting my intelligence but their
own as well). I have read literally thousands of pages on ME, the
biological research carried out in many countries and the intransigence of
the British medical profession of classifying this neurological disorder as
a syndrome "purely in the patients' minds" (Wessely School of Thoughts).
In the end, knowing that I as an individual can do little to change these
injustices I decided that there is one way to make my voice count. My
husband and I have started a petition to the Prime Minister to force NICE
and other concerned bodies to accept the WHO classification of ME as a
biomedical disorder. The address is http://petitions.pm.gov.uk/ME-is-real/
and I would kindly ask you to spread the news about this petition to
everyone you can reach. It may only be a small thing but over 200,000
patients, their families and carers DO have a voice. Ask them to use it.
I am also getting in touch with other UK organisations to ask them to at
least inform ME patients of this opportunity to do something.
Yours sincerely
Konstanze Allsopp
Recent ME Articles
There have recently been a couple of interesting articles about ME in the national papers.
The first one was from the Daily Mail and takes an unbiased look at the Lightening Process. Click here to read the article on the Daily Mail's website. Esther Rantzen also has written a follow-up article, on how her daughter has been cured by the Lightening Process. Also worth reading are the comments - both for and against this controversial treatment, including one by Dr Neil Abbot of ME Research UK. Click here for Esther's article.
The next article is a roundup of the latest biological research from The Times. Click here for this interesting and hopeful article.
If you have seen any recent interesting ME articles then please get in touch with Craig and I'll post them here.
September 06 GardenWise gathering
The first Saturday of September saw the largest social gathering yet at GardenWise in Dumfries. Several new members attended to add to usual suspects! The Network took over most of the conservatory and we all enjoyed a wide ranging discussion on everything from state of health, latest research, mobile phone radiation, photography and holiday plans. Thanks to Chris Butterfield for the photographs.
   
Greg Lake Gig, Glasgow
Search M.E. is involved in fund raising through rock and pop events and their latest gig will take place on 25 Sept 2006 at The Royal Concert Hall, Glasgow. They have in the past donated to MERGE to assist in their research and hope to support other worthwhile projects should they be successful in Glasgow.
Please note the above gig has now been cancelled.
Fundraising Event for MERGE
Doggie Doddle Fun Walk
Which was held at
Dalbeattie Forest, Town Wood car park
Sunday 4th of June 1:30pm - 4:30pm
This event was arranged to raise some funding for ME Research UK's biomedical research into ME. You can find out more about the group formerly known as MERGE by clicking here. The event was a short sponsored dog walk through Dalbeattie Forest from the Town Wood car park and picnic area. Our fitter members and their family, friends and carers took take part and those that were not able helped by arranging sponsorship for a dog. Please telephone Norma on 01576 204129 or click here to email her for more information.
ME Reseasrch UK has updated us with the total raised for them from this event. £1,189.01 is the very grand total. Thank you to all who donated and were sponsored.
|
Cara loves walkies
Molly and Daisy have already tried the route 
Sammy is hitching a lift! |
Please sponsor me, says Murphy |
Mac, heather and Ailsa are raring to go |
Meridian TV's ME report
Meridian TV in the south of England has broadcast a series of reports on ME. The latest report features the harrowing case of a woman who had been badly mishandled by the medical profession and tragically lost her life. It also offers a great deal of hope for a future treatment and maybe even a cure using the immunomodulatory drug Interferon Beta. You can view the video clip by following this link: http://www.investinme.org/Mediatelevision2.htm
Meeting With Our Patron and Medical Advisor for ME Awareness Day
Friday 12th of May 2:30 - 4:00pm at Lochthorn Library, Dumfries.
For ME Awareness week the Network held a reception to enable our members to meet our patron, Alex Fergusson MSP and our contact with the Dumfries and Galloway NHS Trust, Dr Gregor Purdie.
 
The following is a message from Jan Poustie. It sounds like she has an interesting concept.
We are conducting a number of online surveys relating to CFS/ME and education. Our first survey is now on our website (www.falconacademy.org.uk )
Falcon Academy is a newly established not-for-profit organisation. It has been created to provide an education (including social well-being development) for those who have CFS/ME. It has a special focus on those with moderate to severe forms of the condition. Initially we will be looking at providing education for those in the 17-25 age group. We are seeking funding from the Learning Skills Council (LSC) so that the education is free. The LSC has told us that we need to provide them with more data as to the need for education for this group of learners.
We need as many people as possible to fill in the survey so that we can make the world a much better place for those who have moderate to severe forms of this condition. The Chief Medical Officer in his CFS/ME working party report 4 years ago described those with severe CFS/ME as being 'invisible and ignored'. As a parent of a 19 year old who has had a severe form of it for over 10 years I am only too aware of just how true that statement is. Falcon Academy has been created to change that.
|
