Our voices are being heard

The 14th of October 2013, I published the first pages and the first post on the ME-moms’ blog.  This is actually less than four months ago.  I had a feeling that the voices of the ME-moms could matter to improve our children’s situation – perhaps even for all the people suffering from ME in Norway.

What has happened since we started?

Norwegian version

Together we can do so much

In Norway
It didn’t take long before several mothers volunteered to share their texts; to help finding resources; to help editing; to proof read (thank you, it is so easy to become blind in reading your own text), and from the start of January 2014, even translating the texts from Norwegian to English.

The «newsroom» now consists of eight ladies with tons of enthusiasm, all coming from different fields of interest, different professional backgrounds and education; you can read more about us here.

Seven different writers have so far published their works on the blog, and all of them agree that the writing is meaningful.  We all write in our own voices.  We have a more personal approach than the established ME-associations but we differ somewhat from the personal blogs.  We are personal, but not too private – the reason being that we have to shield our children. In addition to being sick they are mostly minors and need to be protected.  This is the reason why we must stay anonymous.

In addition we get help in sharing our work on Twitter and Facebook by even more ME-moms, ME-dads, other ME-patients and their families.  Some of the more established Norwegian bloggers have mentioned us in their blogs; here is an example, where the blogger SerendipityCat writes about the interview in which pediatrician Dr. Nigel Speight talks about how the health care systems fail to help children and adolescents suffering from ME.

The texts on ME-mom’s confessions are being read and commented on in different types of media, and the comments are almost exclusively positive. ME-patients and their families alike recognize our stories and some tells us that these texts have been important in meetings with different agencies.  School officials and teachers as well as people in the social services, health services and special education professionals have read some of our texts. Several of these people actually now understand and accept more because of the stories we tell them.  Even more people tell us that the blog has contributed to family and friends starting to listen more.  And we have only just begun!

Internationally
Could we contribute to the communities outside of Norway as well?  So far it looks good.  The 14th of January we posted the first few pages translated to English. Three weeks later we have achieved quite a bit:

We have established contact with the British organization TYMES Trust, which works to help children and youth with ME. Both TYMES Trust and several individuals in the English speaking world – and then some, now follow @fryvil on Twitter. Every time we publish a text in English they read, comment and share it with their followers.

We are also happy to tell you that the new international magazine «ME Global Chronicle» had an abbreviated version of our text on the fundraising on behalf of a very sick 14-year old who is in need of legal aid.  We did not even know this magazine existed until recently.  Our English-speaking helpers had spread the word for us. The magazine can be downloaded from this page and the next issues can be subscribed to at subscribe@let-me.be.
We have established contact with two of the editors this week, and we have committed ourselves to sending them one or two texts every month.  They have read some of our English pages and they like what they read.

Yesterday we even had a tweet from a lady who hoped we would publish a book.  In English.

In other words: Sharing is caring! By sharing we get access to knowledge and experiences from all over the world.  This can prove to be useful in the hard work of blasting this mountain of ignorance and arrogance to pieces.

And I, @fryvil, I am very proud to have started this project and even more proud to work with this wonderful group behind the blog. I could never have started this project without the support of the ME-community.  Together we have acquired an enormous amount of knowledge and experience

I  repeat: all of this has happened in less than four months!  Makes you wonder what we will achieve if you give us a year?!

@fryvil, 6.2.2014

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6 svar til Our voices are being heard

  1. Øistein Jansen sier:

    Herlig!
    Stå på videre!

  2. salkeela sier:

    Well done! I have enjoyed these posts and think that the GLOBAL ME community can really work together to raise awareness and produce change.

  3. Thanks for contacting me via twitter. Well done for sharing awarness and helping mum’s not feel so alone. As a parent myself, I know there is no greater pain than seeing your own children suffer. I believe that the first step for people to recover from M.E. is a deeper understanding of how the symptoms are created. That’s how I recovered after being sick with M.E. for over 6 years. You can see my video explanation & keys to recovery here if you wish: http://cfsunravelled.com/video-explanation/

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