Monday, 21 April 2014

May 12 Blog Bomb?

An idea for all ME, CFS, Fibro, MCS & Lyme BLOGGERS.

Edit: Links to the blog posts written in 2014 for this initiative
2015: This is the 2015 Call to All Bloggers!

What about a mass release of blog posts - a sort of "blog bomb" to coincide with May 12th - International ME/CFS & FM Awareness Day?

If each participant did a short post describing their own story, and how illness has impacted on their ability to function in society (or, if preferred, another illness related topic)......

...and if these were all written in good time and scheduled to be released on May 12th then we could make a huge impact on the day.

I'm suggesting the hashtag #May12BlogBomb for sharing, so that these posts can then be found and shared widely on FB, Twitter, Google etc. (Just add the tag to your FB and Twitter posts promoting your blog post so that others can find it more easily.)

This image created by @Fibromodem is for promoting the event.  Feel free to use it to share the idea forwards.

If you would like to write a post but don't have a blog, I will happily publish here (subject to approval of course).  Just send your contribution (max 800 words please) to (by May 10th) along with a picture or two if you can, and I will post if for you and also email you a link to share.

Please state at the end of your post that it was written for #May12BlogBomb 

I have now created a Blog Bomb Links post, which is scheduled for release on May12th
If you want to include this link on your blog, feel free to do so.

I will add links to posts tagged with #May12BlogBomb as I find them.
Perhaps, if you already know the address of your post you could email it to me at so that I can start compiling the links in advance. Thank you.

So now, I really hope other ME and Fibro Bloggers will dive in and write even a short piece for mass release on the day.

Who's in?


PS  Please also check out these two Blogs Events for May 2014 and support them however you can:

Get Up and Go Guru is running a Blog Chain event.  Louise has suggested a standard set of questions to be answered by bloggers. These should be shared using the #ThisisME tag.  She has already answered these herself, and her responses and more information can be found here:

My own post for #ThisisME
Just ME: A Post for #ThisisME

Kealie Mardell has offered to host posts throughout ME Awareness month. This seems to be a lively blog, written by a young ME sufferer.  The blog is not just about ME, but Kealie is intending to focus on ME #SeeME for the month of May to raise awareness.
You can check up on the action at this link:

And my contribution here:
The Power of Blogging for Awareness

Thursday, 17 April 2014

When will ME be taken seriously? And what can we DO?

ME is a bit of a political hot potato.

As you probably know, psychiatrists want ME and CFS labelled primarily as problems of the mind.  NICE guidelines here in UK recommend Cognitive Behaviour Therapy and Graded Exercise Therapy as treatments towards "recovery"!  (Heavily influenced by psychiatry.)

There is growing evidence that GET is actually harmful to ME patients.

In the USA, there is a move to redefine the illness using a panel of mostly non-experts.
This is the IOM contract.  It will not be a good thing.

50 ME experts have called for that IOM contract to be halted and the CCC to be adopted instead.

Here in N.Ireland we are also pushing for the CCC to be adopted.
(I am actively involved in this via the Newry and Mourne ME and Fibromyalgia Support Group)

Here is a link to our "Adopt CCC for ME in N.Ireland" petition, which I would urge you all to support (global support is welcomed).
We have almost 600 signatures in less than a month!
Adopt CCC for ME in N.Ireland petition

There is also a petition asking that the IOM contract be halted and the CCC immediately adopted. It has almost 6000 signatures collected in 7 months.  All support for this is also welcomed.
USA Adopt CCC for ME petition

For more information:

The letter from the ME 50 experts urging the adoption of the CCC:
Link to letter in Dropbox

An over view of the CCC - Canadian Concensus Criteria
Link to Overview on Invest in ME website

Finally there is a "Thunderclap" happening on 5th May (date the IOM panel next meets) to show disapproval for the IOM process.  Please consider supporting this with any FB or Twitter accounts you may have:
Link to Thunderclap sign on page

PS  Now also #May12BlogBomb happening right here on Just ME: May 12 Blog Bomb  Please join in by writing or sharing the many blog posts I hope will be published on the day!

Thanks to all who help.  It's hard to fight when we are all so ill.  At least we have computers to help get our voices heard!!