Thursday, 1 January 2015

2015 - Year of Hope for ME?

I'm feeling optimistic for ME as 2015 begins.

Much seems to be changing in the world of ME, and I feel that 2014 was a year in which the ME community really started to get noticed.

Here are just a few of the things that hit my radar:

January 2014:

IOM panel objections
: The ME community launched renewed objections to the USA National Institute of Health's initiative to redefine ME.   The first meeting of the commissioned Institute of Medicine (IOM) Panel convened in early January.  I objected by letter, as did many others.  Some ME folk also used up valuable energy to speak in person: Jeannette Burmister's objection here.

February 2014: 

Dr Mark VanNess spoke to medics and health professionals in Stormont, Belfast.
 The Newry and Mourne ME Fibromyalgia Support Group, who organised the event also arranged a silent protest outside Stormont and asked that the Canadian Consensus Guidelines (known as the CCC) be adopted for ME in Northern Ireland.  Report here. A video of Dr VanNess's Bristol talk a few days later is available here.

March 2014: 

Adopt CCC for ME in N.Ireland campaign: Inspired by the letters from ME experts and Patient Advocates, and also by the online petition to the USA NIH, the Newry & Mourne Group launched their own Adopt CCC for ME in N.Ireland petition in an effort to persuade the Local Assembly at Stormont to take this decisive and forward thinking step.

May 2014:

#May12BlogBomb An amazing outpouring of blog posts were released for May 12th Awareness Day, and those that used the #May12BlogBomb hashtag were collated here.

Light Up the Night for ME This endeavour started as a friendly challenge to light up as many building as possible, and ended up with - "a total of 54 pictures submitted & 36 public buildings and landmarks and 18 homes from: Australia, Canada, Germany, Japan, Northern Ireland, Puerto Rica, USA and UK." Photos here.

June 2014:

Ireland End to End Cycle for Invest in ME. My husband and a group of his friends raised just over £2700 with a non stop relay cycle the length of Ireland.  I am aware there were many other fundraisers, and am continually amazed at the amount that can be raised by dedicated patients and their families. More on Tim's cycle here, and on other Invest in ME initiatives here.

July 2014:

The Adopt CCC for ME in Northern Ireland petition was presented to the Local Assembly, at Stormont, by MLA Dominic Bradley. Update here.

August 2014:

Severe ME Awareness Day. A huge flurry of awareness activities took place.  Greg Crowhurst's Stop the ME Cover-Up campaign produced some haunting images from patients, whilst The Black Dress Selfie images provided a more light-hearted approach.   Many folk were once again drawn to write about Severe ME- my post is here.

November 2014:

Karina Hansen's Birthday: The plight of Severe ME patients taken into psychiatric care continues to be of grave concern. A small gesture of solidarity led ME patients from around the world to send Birthday cards to Karina Hansen: she is currently under enforced psychiatric "treatment"  in Denmark.  A Facebook page here gives updates.  My post here. 

December 2014:

Jeannette Burmeister continues to tackle the NIH over the IOM.
Having sought documents under Freedom of Information, she then had to take legal action to have those documents released, and to have her legal fees paid.  Despite winning this action, the NIH have neither paid nor released the material requested.  Jeannette is herself substantially ill with ME, and both the stress, and the financing, of this action have been at her own personal cost.  The ME community world wide should be thankful she is on our side.  Please take time to read more of her blog here.

2014 - Newry and Mourne ME Fibromyalgia Support Group
 continues to push for change in N.Ireland.  Led by the dynamic Joan McParland, this group has achieved much in 2014:
  • Charitable status has now been achieved. (I am both a committee member and a trustee for the group.)
  • The motion to Adopt CCC for ME in Northern Ireland will be debated in our Local Assembly in the New Year (date to be confirmed).
  • The Patient Client Council has taken up the case of ME patients and the lack of specialist ME services and has promised to liaise with the Health and Social Care Board in N.Ireland for change. Funding for an awareness campaign in 2015 has also been promised.
  • Joan's Freedom of Information request regarding a local Condition Management Programme advertised for ME, has resulted in TWO responses - the second contradicting the first! No doubt there will be further developments. 
  •  Facebook page here & website here

I know this is just tiny glimpse at a very busy ME world.

There are big and bold campaigners out there who will hopefully make radical changes to the way ME is perceived and treated.

However there are also a plethora of ordinary individuals who run groups, write blogs, give friendly advice, and continually reach out to the newly afflicted.  It never ceases to amaze me the amount of care we all receive through social media... and Facebook in particular!

I believe if each of us continues to create our own small ripples, in our uniquely personal ways, and that if we back the campaigns of those brave enough to tackle the system, that the tide must eventually turn in our direction.

I wonder will 2015 be the year that ME finally gets rid of the psychiatric / psycho-social stigma, and so be the year that real biomedical change starts to happen?

Let's see if we can MAKE it happen in 2015!

I'm aware that so much more than this has happened.... please feel free to add the moments that were important to you in the comments section.  :-)


  1. Thanks Sally,

    I would put the Japanese study (Riken institute) which proves brain inflamation, high up there

  2. I believe there is much reason for optimism too Sally! I love the way you have summarised all these wonderful efforts by patients. Our ripples will hopefully soon turn into a tidal wave which the governments will no longer be able to ignore and they will be forced to accept the seriousness of the disease.
    Thank you for your never ending hard work, for your blogs and the VITAL role you now play in being aTrustee for our support group. 2015 will certainly be interesting to say the least, heart rate monitors to the ready with lots of strict pacing and I truly believe we can change our ME world for the better!!!

  3. Hi Sally I'm so glad to have found your blog. I was looking on-line for a support group for M.E/Chronic fatigue syndrome. I live in Lisburn N.Ireland & I was just wondering if you knew of any round my area. Thank you & I hope 2015 is a good year for you.

    1. If you are on Facebook please join the Newry and Mourne page there (link in article above) - you can do that without actually being a paid up member.

      There are other groups also - I think ME Support NI meet near Finaghy which might be closest for you. They also have a Facebook page.

  4. Would you like an info pack Juanita, it will give you a better idea of the work we do as well as the group face book page?

  5. After 3 years of illness and just at the point of giving up fighting I find this! It has inspired me to save some energy for my fight with social services regarding inappropriate care and reduced hours!

    1. Thank you Tracey. It's lovely to feel I've made a bit of a difference. It does seem we all have a bit of an uphill struggle with the system. Here's hoping for change. :D

      Also check out the support groups on Facebook.