October is International Dysautonima Awareness Month.
On 13th Sept (2012) the Federal Drug Administration (FDA of America) held a web conference with ME/Cfs patient groups. The outcomes look very promising (at last) READ an article from someone who was there.
The FDA have said;
CFS is a serious life-threatening condition– As they have finally acknowledged this drug trials can now go through the AcceleratedApproval Process!
Ampligen will be considered for approval on Dec 20th 2012.
UK Potsies provide to excellent Youtube videos to help raise awareness and help those of us with the symtoms whether awaiting dx or already dx get to grips with some of the questions we have.
Dysautonomia Prison is an excellent resource for all sorts of aspects of Dysautomic illness. THESE INFO SLIDES are quick ways to get an overview of what it entails- and there’s a still version here. There is also this enormous list of research articles covering Dysautonmia, POTS, FM and ME among other stuff.
The CFIDS/ME Patient Memorial List. This is a place to remember all those who have died as a result of this truly hideous disease. It was compiled, not just to remember the dead and show them the respect they so often hadn’t received in life, but as a type of proof to the ignorant and unethical “powers that be” that this is a disease that needs research, treatment and care for those who suffer. It is to my mind, deeply shameful, that we need a list of the dead before this debilitating illness can be treated properly.
National Cfids Foundation; Cfids stands for Chronic Fatigue Immune Deficiency Syndrome. It’s a more accurate ‘label’ than chronic fatigue syndrome.
Phoenix Rising – a hub for research and advocacy for ME/cfs Fibromyalgia and Dysautonimic syndromes such as POTS – with a great forum.
As dysautonomia effects so much, including immunity and autoimune systems it’s not surprising there is a link with diabetes. This is a short paper on dysautonomia and peripheral neuropathy in type 1 diabetes. I haven’t found anything specific yet on genetics and autonomic disorder but I bet there will be some at some point.