* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Friday, August 31, 2012

Why PHANU need our support and reasons to hope for ME/CFS/Fibro:

It's been a while since my last blog, over a month I think.

I've been doing a lot of 'extreme resting' since my health has been worse than the usual.  Despite that lots has happened, there has been doctors appointments, a mould invasion and family dramas to deal with, but all that will have to wait for now.  I have something to share that I think is important, maybe not as entertaining as LargeDad's take on brazilian waxing, but, well, important.

There has been some great research coming out of PHANU, Population Health and Neuroimmunology Unit on the Gold Coast, Australia, (basically an ME/CFS lab) lead by Dr Marshall-Gradisnik and Dr Staines.

Dr Marshall-Gradisnik and her team have set a cracking pace, doing 15 papers on ME/CFS in the last two years.  They are now busy working on biomarkers, organising rituximab trials, slaying the 'graded exercise theory' myth and setting up a diagnostic lab.  PHANU certainly have a lot going on. 

One of their key areas of interest is testing Dr Staines's hypothesis on what causes ME/CFS.    His theory, while very promising, doesn’t seem to be very well known by the me/cfs community, so I’m hoping that by getting the word out I can turn some attention to his work and the recent urgent call for funds. 


My interest in Donald Staines’s work started a few months ago, when he kindly took some time to talk to my mum about PHANU, their ME/CFS research and hopes for the future.  After talking to Dr Staines,  she came into my room, her face beaming and full of hope.  Anyone who can make Mum smile like that about ME/CFS has got my attention. 

So what did he say?

He said, that he thinks ME/CFS is a vasoactive neuropeptide autoimmune disease. (I know...a what?)

A peptide autoimmune disease that you may of heard of is Diabetes Type 1.  Peptides are little chains of amino acids that are in everything, blood, organs your brain etc.  They have only started to be understood in the last 15-30 years and are responsible for regulating many systems in the body, including the immune system.

What gives me hope, is that, Staines is interested in a few specific types,

-           VIP's  vasoactive intestinal peptides, named such because they were found in the intestine first, they get around everywhere.

-           PACAP’s, These ones have a lot to do with a vital messenger, AC (Adenylate cyclase) which is involved with cAMP and mitochondrial function.

 When I look up the lists of things these little buggers are responsible for, well, the list correlates with a lot of my weird and wacky ME symptoms.  Staines thinks that these VN’s may be what’s missing, low or damaged in people with ME/CFS/FIBRO possibly due to an attack or dysregulation of the immune system.   

Staines has written a book on the subject called ‘Chronic Fatigue Syndromes and Vasoactive Neuropeptide autoimmunity’.  By Donald R. Staines. 2005.  It's a simplified version of some pretty complex stuff but it's still very technical.  (Ie intense brain fog alert).

 One of the potential therapies that is mentioned in this book, is b-cell depletors, eg. Rituximab, which fits in with the positive Norwegian trial results. 

So, in the short term , I hope that Staines's theory gets a chance to be proven (or disproven).

And in the long term, I hope, that they can figure out the missing peptide/ingredient and one day, treat us, a bit like insulin for diabetics.

But research into this, is being held up by the need for a new flow cytometer, a machine that counts tiny things, like peptides, in blood. 

This is where the Alison Hunter Memorial Foundation, have really risen to the task and are asking for donations specifically for the new cytometer. 

Already, they have raised $24 000 of the $200 000 needed.

The AHMF was set up in 1998 by a Christine Hunter, who lost her 19 year old daughter, Alison to ME/CFS after a courageous ten year battle.  In the years since, Christine has dedicated herself to raising funds to support promising biomedical research into ME/CFS.  An inspiring woman, to say the least.

Donations for the flow cytometer can be made on their donate page by printing out the form and posting or faxing it to the AHMF.  

Or online in the UK:

Donate now at Invest in ME, a UK based charity, dedicated to funding biomedical research into ME, using their online button.

Or online in Australia:

Donate now on the Australian site for ME/CFS (Vic/Tas/NT).  Simply follow the link to their homepage and press the red donate button, then tag your donation 'flow cytometer'. 100% of your donation is then guaranteed to go directly to the flow cytometer.  Any problems, phone 03 9791 3100 or email admin@mecfs-vic.org.au. Thanks to Alison for making this possible. 

So there are now three charities around the world working together to raise funds for this worthy cause, let's hope their teamwork pays off.  

In the meantime, while we wait for (and make our own) donations,  it’s nice to know that there are people quietly and persistently doing decent research into this disease.

I'd just like to add, that any mistakes about the above, specifically about Dr Don Staines's theory are my fault.  I hope I haven't confused any of the details by oversimplifying what I've understood in his book but I am very ill at the moment and don't come from a medical background. 


For More Information:

About PHANU:

1) ‘Phanu Rising : Australian Chronic Fatigue Syndrome Research Lab Making Waves: Pt 1 ‘

2) ‘Phanu rising II” Dr Marshall-Gradisnik talk on Rituximab, Biomarkers and Chronic Fatigues Syndrome.


About Dr Staines’s theory:

1) His book, ‘Chronic Fatigue Syndromes and Vasoactive Neuropeptide autoimmunity’.  By Donald R. Staines. 2005

2) Or in his online hypothesis:
‘Is chronic fatigue syndrome an autoimmune disorder of endogenous neuropeptiedes, exogenous infection.

(Thanks to Rachel.M. for this link.)


About the Alison Hunter Memorial Foundation: 
Fundraising for Flow Cytometer

Alison Hunter Memorial Foundation announces Fundraising for Flow Cytometer Cost 
Funds raised to date

Aus $24,000

Griffith University
 School of Medical Science

Griffith Health Institute

 Population Health and Neuroimmunology Unit (PHANU)

Steering Committee
 Chair Ross Humphreys

Professor Sonya Marshall Gradisnik PhD

Associate Professor (Adjunct) Don Staines MBBS MPH

Professor (Adjunct) Daniel Peterson MD

Christine Hunter AM

The focus of PHANU is to investigate the pathomechanism of myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) as well as to develop novel biomarkers for the early diagnosis of the illness.

Under the leadership of Professors Marshall-Gradisnik and Staines, PHANU 
works in close collaboration with Daniel Peterson MD Chief Investigator/Clinician of Simmaron Neuroimmune Research Foundation Nevada USA.

PHANU is seeking to obtain a new flow cytometer to continue their immunological and genetic investigations. 

This equipment upgrade is critical for their ongoing ME/CFS research programme examining spinal fluid and blood and will allow more advanced analyisis of possible pathomechanisms.

A Donation Form can be accessed at www.ahmf.org via Donation tab.

Donations can be posted to

Alison Hunter Memorial Foundation
PO BOX 6132
North Sydney 
NSW 2059


or alternatively faxed to +61 2 9958 6285 

Your help to fast track this purchase would be greatly appreciated.

Chris Hunter AM

About Alison Hunter:

Alison Hunter's beautiful and poignant story - Forget Me Not - can be found in the journal of Invest in ME, volume 3, issue 1 (page 11)

And also on the AHMF website

 About Invest in ME (IiME): 

IiME is an independent UK charity which campaigns for bio-medical research into Myalgic Encephalomyelitis.  Apart from raising funds, they have done many other wonderful things, like founding the European ME Alliance and hosting an annual conference with the worlds top ME/CFS researchers. The results from the 2012 conference can be found here.

About ME/CFS Australia (Victoria):

ME/CFS Australia (Victoria) is a not for profit charitable organisation dedicated to providing information, support and advocacy for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome community in Victoria, Tasmania and the Northern Territory.  They have some handy resources on their website, including self-management courses and fact sheets for friends, family and doctors.