* 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 
AUS$200,000 
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

Australia
 

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. 

*****





Saturday, July 7, 2012

Speed, setting and frequency does matter – update on saline IV’s

2014 Update:  I became unable to tolerate saline, either by picc line, cannula or port - I'm pretty sure I developed a mast cell allergy to the plastic in the bag/ giving set.  I get a massive headache and symptoms of mast cell degranulation when trying to have more than one saline infusion a month.   So no more saline for me...a real shame because it still gave me the other improvements.  

If you are prone to developing intolerances, watch out for any worsening in symptoms .

*****

It’s been about nine months since my first saline IV and I’ve learnt a few things along the way. Fun things, like Mum's reaction to blood.  And three very important things, that I need to maximise the benefit from saline IVs.  

 Speed – 1 litre over 1hour.  In other words, gravity fed with the inline valve wide open.  Slow IV’s do not have the same effects.

 Setting/environment – a quiet dark room. It's very important to minimise noise, light and movement as they all trigger a worsening of symptoms which reduces the efficacy of the saline treatment.     

 Frequency – daily.  I now have one litre of IV every morning and experience some relief every day.  As soon as I miss one, I get worse. 

(for information on how and why I started on saline you can learn more here Me, Myself and Saline and here The Nitty Gritty On Saline IV's and POTS)

It was a long process of trial and error to learn what my body needs in terms of saline.  I don't know why or how these things do or don't work, all I can do is share my experience and hope it helps someone else. 

I've broken it up into subheadings to try and make it easier to read. 

1. Subcutaneous saline infusions - didn't help.
2. Frequency - A longer term solution  – Port a cath installation
3. Speed matters - A slow  IV didn’t work.
4.  Links - Medscape article.


1. Subcutaneous saline infusions - didn’t help.

After getting 3x 1L IV’s a week for months my veins were getting pretty scarred and scratchy so I started looking for other ways to get saline in. I started with subcutaneous saline infusions.  This is where the saline is inserted under the skin into your fat layer, making a “saline baby”, and from there slowly absorbed away into the bloodstream via capillaries.   

It took a while, and there were a few tricks to getting the subcut going right. But even once I had got the saline going in 500mls a day or more, it still didn’t have the same positive effects as the IV’s.  In fact for the whole two months we tried this I kept up with the IV’s.

So for me, subcutaneous saline didn’t work to alleviate any symptoms,  and I’ve since spoken to other severe ME patients who have also had the same reaction.

2. Frequency - A longer term solution  – Port a cath installation

I was so frustrated that the subcut saline didn’t work.  I’d really hoped that this would be a good long term solution around the vein damage. I was scared my veins would collapse and I’d have to stop getting the IV’s.

Just as that started to happen (one vein did collapse) the cardiologist and endocrinologist  at our local hospital agreed to insert a port a cath into my chest.

A port a cath
 is basically a little pincushion installed just under the skin in your chest with a line straight to a blood vessel.   

Port a cath: (the actual drum is about the size of a 10 cent piece). 



Now I can administer saline myself and I only see a nurse once a week, who comes to my home, to change the needle into the port a cath.

Every morning I wake up feeling a bit Dracula-ish, nauseous, headachey, brain foggy and ropey.  Then Mum comes in, sets up the saline IV, wipes the end of the port with an alcho- wipe, does a quick 10ml flush with a syringe and then connects the IV.  Twenty minutes later and I start to feel human again.  How human I get, depends on how bad I was to start with, but it’s always a little better.  

So I know that frequency matters for me, it helps every morning.  For some reason it seems to help more in the morning than in the afternoon.

Being treated at home in my own bed is so much better than going to the doctors.  By removing the sensory strain of travel and upping the IV frequency I've experienced small improvements.  I’ve been able to do more things for myself.  Like listen to music have short conversations and sit up a little.  I’m now sitting up for 30 minutes a day in bed, most days.  I still have backward slides and crashes but overall the trend seems to be going slowly upwards.  (incredibly slowly).

Another positive, that Mum loves, about the port a cath, is that there is no blood.


3. Speed Matters – A slow IV didn’t help.

Last week I unwittingly tested the ‘speed matters’ theory.  When the nurse changed the Port’s needle, it went in at a bit of a funny angle, into the side of the drum and must have been a little obstructed because the saline ran very slowly.  Four and a half hours later I finally got all the saline in, but didn’t experience the usual positive effect from it.  

One litre in one hour, gravity fed, seems to give the best result.  


4. Link to Medscape article:

After agreeing to administer saline for me, one of my doctors went and did her own research and found a medscape article referencing saline therapy.  It mentions one of Dr Bell’s patients,  a woman who experienced measurable improvements after being given daily saline IV’s for 417 days.

You have to sign into the Medscape site to read this, but it is available as a consumer, you don’t have to be a doctor to access it or pay anything. 

An extract:  (Found in the article under the heading Treatment, and subheading, Medications for Orthostatic Intolerance)

"A case report in the literature cites improved performance during graded exercise testing in a woman with CFS after daily treatment with 1L of 0.9% saline via a central venous line over a period of 417 days. Improvement in a variety of cardiopulmonary measures as well as subjective report by the study participant of improved activity tolerance, reduced muscle fatigue and pain, and improved orthostatic tolerance were cited."


In my opinion, why and how saline IV’s work isn’t important but what does matter is how saline IV’s are administered.   

Speed, Setting and Frequency. 



Wednesday, June 27, 2012

LargeDad’s PMS solution.


It’s that time of the month. 

I’m sure my symptoms actually do get worse, not just my perception of them.  This is something Mum agrees with me about.  Every month we have a little ‘oh no, she’s sliding backwards’ freak out, and then we remember, it was like this 28 days ago.  

So I get sicker. 

And I get grumpy.

But not to worry LargeDad has the solution..

*******

Me: (about my doctor) She doesn’t want me go on the pill for PMS because of the increased risk of thrombosis being bedbound makes it too risky.

(Noisy sigh).

Thrombosis? How bad can that be? 

LargeDad:  Oh no, Sarah it’s serious it’s not a risk you can take.

Me: but PMS and ME, It’s just too much. 

LargeDad:  Oh your PMS isn’t that much of a problem.

Me: ummm that’s nice of you to say, but yes, yes it is.

LargeDad: No really it’s fine, we just do a food drop and shut the door.  

Me: oh.

LargeDad: That’s what the double insulation on the door is for, OUR noise sensitivity.




Wednesday, May 2, 2012

The Birds, The Bees and LargeDad.


The room is dark and warm for a change.   Usually it’s cold and I’m bundled up in all my winter woolies.  I think the air-con has broken down.  Bliss.

It’s very restful laying here, waiting for the doctor to come and put in the cannula.  But it’s been ages and she still hasn’t come.  I’m bored and while it’s nice that Large Dad is waiting to keep me company, he keeps falling asleep and snoring.  

Sgnooogh uggggg sgnooogh uggg uggg uggg

So I’ve started throwing all my spare winter woolies at him.  It’s a bit hit and miss in the dark, but to my under-stimulated mind, very amusing.

Bulls-eye, got him. 
He snorts and wakes up.

Large Dad: ‘what’s this?’  

He is draped in half a blanket, a scarf and has just copped a ski glove to the head.

Me: 'I’m feeling rested, do you want to chat?'

LargeDad: 'I suppose so.'

We both fall silent for a while.  Apparently the effort of throwing things has left me a little zonked.
The room seems darker and quieter. (well it would without the snoring)

LargeDad:  ‘So Sarah, I’ve got a question for you. What’s a brazilian?’

Suddenly I’m grinning like an idiot.  Oh, this is a good question.  You see, I have a very clearly defined opinion about brazilians.  

I take a deep breath.

Me: ‘Well it’s a modern day torture technique, which started in Brazil and has spread to all developed countries under the guise of beauty therapy.  It’s very sad, young girls are tricked into doing it by modern societal pressures.   Personally, I blame the porn industry for objectifying women.  And fashion magazines for pretending it’s normal.’

LargeDad is nonplussed:  ‘oh.... well, apparently your Mum wants one.'

Me: ‘Oh no, I’m pretty sure she doesn’t.  What makes you say that?’

LargeDad: ‘Or maybe she wants me to get one?  I’m not sure.  What is it really?’

Me: ‘Removing all your pubic hair with wax.’

LargeDad: ‘Really you mean like, really, like pulling ALL the hair out?  With HOT wax?’

I imagine him scratching his head in the dark, trying to work out why anyone would do that.

Me: ‘yeah, every last hair. Totally insane isn’t it.’

LargeDad:  ‘She wants me to do that!’

Me:  ‘errr I don’t think so.  (too much information!)  Usually it’s just for girls.  There is a different name for boys.’

LargeDad:  ‘What? A Frenchman?’ 

And then the doctor comes in and saves me from having to explain a sack, crack and back wax to my Dad, in the dark.

*****

Later on at home, with Mum.

Me: ‘So, what did you mean when you told LargeDad that you want him to get a Brazilian’

Mum: 'What, a Brazilian, LargeDad?  Now where did he get that idea?'

She looks incredulous.  I breath a sigh of relief.
I can keep pretending that the stuff I don't want to know about my parents, doesn't happen.

Me: 'Well first he said you wanted one and I knew that wasn’t right so then he thought maybe you wanted him to get one.'

Mum: 'No way, what…oh wait.' 

She doubles over laughing.   It's a while before she can speak clearly.

***

It turns out that, somehow, at dinner with friends, the husbands started talking about how disobedient Australian women are (lets face it, we are) and decided that they should have got mail order brides. 

So naturally, the women tried to work out their own preferences for mail order spouses and the vote was unanimous.  They all wanted Brazilians.

As in Brazilian men.  With a capital B.

Like these ones.














Not the modern day torture technique by the same name.