Info for ME/Cfs Fibromyalgia, POTS, Dysautonomia.

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.

Got fog?  Perhaps the grey and white matter changes in your brain explains that.

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.

POTS UK – has some good resources including a simple handout for good GPs.

STOP POTS and Dysautonomia

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.

List of UK Specialists for POTS

National Dysautonomia Research Foundation

Invest in ME has an excellent library of documents and gives a good overview of the medical research and the appalling politics that strangles so much of it.

The Hummingbird Foundation for ME

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.

Cardiac Insufficiancy Hypothesis from ME Soc of America.

Research paper on ME with OI  and cardio probs (pubmed)

Research paper on how Fibromyalgia is probably a form of Dystautonomia! WOW! And THIS PAPER continues on the same theme (pdf)

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.

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