Tuesday, 12 May 2015

Le Re-tour

Today is ME Awareness Day.  How do things look for us? In comparison to five years ago when I last wrote things are much much better. Then I really had no hope of any treatments nor decent research. Today, we are getting more mainstream media attention, it's often far from correct with its facts but at least we're more in sight. We are still misunderstood as to how the illness affects us but slow, steady steps forward are being made.

Research is really coming along and I do now have hope for the next few years.  However, we are still woefully under funded to really make the huge breakthroughs we need.  As a community we are stronger than ever with some incredible advocates who have made this all possible and to them I send my humble gratitude. But to get a huge groundswell of activism going is hard due to the nature of our illness and the worst of us are house and bed bound. We need as many 'well' people as possible to do it for us, so if you'd like to help out in any capacity, I can definitely point you in the right direction.

So there is at least some sparkling lights of positivity for the future, the question is can they help the sickest and those who have had this illness for a long time. Those who have had it for a shorter time have a far greater chance of recovery if intervention happens quickly. This is so encouraging for those being diagnosed now, and it is great news for all those to come. Hopefully soon no parents will have to watch the illness ravage their children & then have them taken away by child services or psychiatrists. Hopefully no one will need to take their lives due to not being able to stand the pain and utter discomfort any more. And hopefully no one will have to die slow, horrible deaths with years of wasting away forgotten and untreated. But for now, this is still happening.

If you feel moved to help us here are a couple of great charities to give a small donation to or just spare a thought for us and share details of the illness with someone today.

http://www.ukrituximabtrial.org/iimeukrt%20donate.htm

http://www.microbediscovery.org/donate.html

http://www.meresearch.org.uk/



1 comments :

  1. Lacey Stritton said...

    Happy May 12th friends,

    It is with great pleasure today that we announce the creation of "Advocating4ME", a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future. :)

    https://www.facebook.com/pages/Advocating4ME/1606524889591699