Monday, 27 April 2015

ACT UP for ME? Proxy Marchers will give us a Voice!

Chronically ill patients are often hidden by the very nature of their health conditions.  Unable to take to the streets in protest marches, their situations are often overlooked.

Certainly this is true for ME.  The most severely ill patients - who are of course the ones most needing change - are the least able to protest!  So what can be done?

ME Advocacy is a grass-roots organisation set up to try and give a voice to the most severely ill ME patients. Tomorrow, Tuesday, they will have student proxies marching in Washington DC appealing for more funding to address the issue of ME.

Indeed, one of those proxy individuals marching on the White House tomorrow will be doing so for me!

I sent the organisers of this event my photo and a short bio about my illness, which may seem an unusual move considering I live in N.Ireland!  However this problem of ME neglect is not a local one, and in my view patients worldwide should enthusiastically support one another's efforts towards change.

It is my view that what happens in USA can have far reaching effects on the treatment of ME patients everywhere.

So this is just a brief blog post to wish the organisers of this event every success. I may not be with them physically but my heart is hoping for the same changes that they seek.

Colleen Steckel, Susan Kreutzer, Gabby Klein, Mary Ann Kindel, Tracey Tempel Smith, Polly Gilreath, Kathryn Stephens and Joni Comstock have all put a huge amount of effort into the organisation of this event.

Thank you all for this brave move.


The press release shown in the image above is also available here:
Act Up for M.E. - Boots On The Ground In DC

You can contribute to the cost of this event here:

Donation Page: "Act Up for ME Funding" Demonstration

10 Things ME Patients Need Now  A post I wrote recently with N.Ireland in mind, but in truth I think these things are needed everywhere.

Monday, 13 April 2015

Calling All Bloggers!

#May12BlogBomb is back!!

May 12th is Awareness Day
for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity.

2015 Link List 

Every year bloggers use this opportunity to express their views and to raise the profile of these much misunderstood and often maligned conditions.

Last year I called for bloggers to promote their blogs using the hashtag #May12BlogBomb.  

I'm not sure we managed to get the #May12BlogBomb tag trending for the day (wouldn't THAT be an achievement) but it was certainly popular.

Hashtags are useful because they become hyperlinks, and clicking on one in a tweet or Facebook post, lets you see who else has posted something using the same hashtag.  This works both on Twitter and Facebook.

Following the #May12BlogBomb tag allows social media peeps to discover new blogs, read new points of view, connect with other bloggers, and generally to explore the subject further.

This year, like last year, I hope to collate a page of links to the blog posts written for the 2015 #May12BlogBomb.

It will become live on the morning of 12th May, get updated throughout the day, and if it takes off the way it did last year, it might take a week to gather all the links together.

Last year's list of links can be found here: May 12 Blog Bomb Link List  I have to admit, the response was phenomenal last year.  I had set out thinking I might collate a dozen or so links and was totally blown away by the number of blog posts I received!

So let's get this year's Blog Bomb EXPLODING  for 2015!


I've just been asked if there is to be a theme this year.  Last year I suggested one and whilst there were many posts on that theme there were also many other topics explored.

I think were I to suggest a theme this year it would be on looking towards the future . So maybe "A Vision for the Future!" might be a suggestion.  In my view the aim of these posts is to reach out to the wider community and help them understand our lives, hopes and dreams...

Perhaps the angle of how your future would look if you were free of illness from tomorrow, would be good?

It's up to you!  I look forward to reading everyone's thoughts... 

List of links from 2014 can be found here: 
May 12 Blog Bomb Link List  

My Awareness Posts from 2014:
Ability for Agility: Why do I use Wheels?

Just ME: Why NOT Exercise?

Tuesday, 7 April 2015

Cargo Cult Cures!

To be "cured" of ME is every ME patient's dream.  Why then, do I cringe at some of the recovery stories online?

Perhaps it is the inevitable "recovery advice" that these individuals seem keen to offer. The message seems to be "Do just what I did, and you too will be cured!" Or at least that is how the media like to spin these stories.

Yet for those of us hoping to follow in the recovery path of these fortunate folk, we can end up finding the "cures" remarkably ineffectual.

Indeed it is my suspicion that a large portion of recovery is akin to rolling six sixes simultaneously on a set of dice.  In this context questioning the recovered individuals about how they achieved recovery, is about as useful as asking a person exactly how they rolled all those sixes!

Imagine if I got my six sixes (or my miracle cure) today - and then tried to work out why it was that I got my lucky break. Perhaps it was the fact that I ate a gluten-free diet, or that I'd been undergoing a new programme of therapy, or perhaps I might attribute my good fortune to something as surreal as wearing my lucky red socks!

The truth? In hind-sight it's very difficult to say which factor worked, or indeed if any of them had any effect whatsoever.

Yet for a good story, I'd be likely to pick my current favourite, and offer it up as "the thing" that helped me, and I'd hope that my strategy might provide the key for some-one else.

To be honest, I'm not critical of folk discussing strategies that have helped them. As many people know, I monitor my activity and heart rate daily, and am convinced that this strategy, along with a gluten-free diet is somehow helping me.

Nor am I being critical of patients trying to find something new that works for them.   Not at all, but I am cautious of individuals on the internet who promote their programmes and imply that if you do exactly as they did, then you too will be well! (And I really dislike the flipside of these programmes, where the patient is blamed for not fully adhering to the protocol when the programme fails.)

Which brings me to the title of this post.  Cargo Cult Cures
- I wonder if some ME cures on offer, are a bit like the "Cargo Cults" that apparently sprung up after the Second World War.
The Cargo Cult story goes something like this: Villagers in isolated areas saw soldiers arrive and build airstrips and control towers, and soon after aeroplanes full of supplies arrived.  Later, after the soldiers departed, the villagers tried to employ the same techniques to attract further bounty from the skies.  It is said they built replica airstrips, replica control towers and even replica wooden radios.  When the supplies failed to arrive, they thought they must still be missing some vital detail, and so the replicas became more elaborate and detailed.  
I just wonder, in the absence of any real medical advances for ME, do we sometimes get caught up in creating our own Cargo Cult Cures? 

I admit I have various routines, and practices that I follow, in the hope that they will help me recover. I am in no position to be critical of anyone doing this.

I'm just urging caution, because until our condition is more fully understood, we really can't know if all our efforts are likely to pay off.
Cargo Cult Epilogue: Apparently much later, visitors to some of these areas arrived by aeroplane, giving rise  in the villages to the belief  that the Cargo Cult activities had succeeded.

So perhaps, until more is known, we need to be gentle with ourselves, and if a protocol is becoming more effort than it seems to be worth, we should not be too harsh on ourselves if we decide to let it go.