Leaving Diaspora Action Australia

DAA Donor Drive "thank you" messages; photo: Dinesh Liyanage

Today was my last day of work at Diaspora Action Australia. It's been an amazing and rewarding three and a half years. A couple of weeks ago I was interviewed by one of our writers, Amy Rashap (photo below right), and the piece below is hers. It will be published on the DAA website in the near future. Interspersed photos (photographer: Nick Chiarizia) are just a few of the wonderful people I've been working with during my time at DAA.

Amy Rashap. Photo: Nick Chiarizia

Nicky Reiss: Nothing is Permanent (but the important things remain the same)

Nicky Reiss is usually the first person any Diaspora Action Australia (DAA) volunteer will meet. Her green eyes look at you searchingly, yet her face is friendly and open. Once you start speaking with her, she makes it clear that she is listening—really listening—to you. This combination of cool-headed analysis and friendly intuition are just two of the reasons why she has been such an asset as volunteer coordinator for DAA. There is an even greater number of reasons why we are all very sad to see her go.

Nicky comes from a cosmopolitan family that exposed her to global issues. Her father was born in Germany, but was raised in the U.K. Nicky’s mother, a U.S. citizen, met her future husband while both were students in the U.S. As the owner of a wool business, Nicky’s father often entertained international visitors at home. She also became interested in international affairs due to her paternal grandmother, Franziska Simonis. Born in Germany in 1899 into a Jewish family, Franziska and some family members were able to escape to the U.K., avoiding internment in concentration camps. After WWII, Franziska worked as a volunteer in the British Council for Aid to Refugees (now called the Refugee Council). ‘She helped refugees settle in the U.K.,’ Nicky recounts. ‘Hearing about this experience had a huge effect on me—I think it’s one of the reasons why I chose a career path involving travel and working with people around the world.’

Travel? She’s done it. After university (where she spent time in both Austria and France), Nicky’s wanderlust took her to Indonesia for two years, as a VSO (Voluntary Service Overseas) volunteer. While she had wanted to be placed in China, the VSO decided Indonesia was the place for her. ‘I had visited a friend in Indonesia for a week,’ Nicky laughs, ‘and when the VSO asked if I had any experience in that country, I said, “Yes, I have been in Indonesia for seven days,” and that was enough for them.’

Nicky has lived in the UK, Australia, the US (including Hawaii), Austria, France, Indonesia, Malta, New Zealand, Timor Leste, DR Congo, and Rwanda. She has worked for universities, INGOs, and on the UN mission in East Timor (UNTAET).

 Then, Nicky’s life took an unexpected twist. ‘On 26 December 2005 I woke up; I was in Rwanda, and just was not well,’ Nicky narrates. Suffering from debilitating exhaustion, plus noise and food sensitivities, she spent the next eight years trying to get a handle on her complex disease. After numerous misdiagnoses (including myalgic encephalomyelitis, aka ’chronic fatigue syndrome’), she came to live with her family in Melbourne. ‘I thought I would never be able to work again,’ she recollects. ‘And once you’re diagnosed with chronic fatigue syndrome, that’s it: most doctors just give up on you.’

If you look up Nicky on Google, you will see that she is a tireless blogger and tweeter. ‘I began doing online advocacy because of my illness,’ she said. ‘I was constantly doing research on the internet. I began contacting people with the same symptoms as me on Facebook. We are all given this wastebasket diagnosis; we knew research had to be done, and no one was doing it.’ As a result of these efforts she firmly believes in the value of social media. ‘For people with disabilities, Facebook is a lifesaver. We created networks and a wonderfully supportive environment. Through Facebook I learned about advocacy and it was something that helped me get this job at DAA.’

(Nicky finally found a good doctor in Melbourne, and avows that her health is now 85 to 90% restored.)

Being volunteer coordinator at DAA is the first job Nicky has held since 2008, and the organisation has been lucky to have her for more than three and a half years. ‘What have I loved about this job? The volunteers,’ Nicky states immediately. ‘I get to meet interesting, amazing people, especially young people, full of energy and enthusiasm. We’ve had volunteers from Africa, the Middle East, Europe, the Americas, as well as Australia—and I’ve learnt so much from each of them. It’s especially exciting to see what each person can contribute to DAA.’ Nicky proudly relates that several DAA volunteers have parleyed their skills into careers in international development, finding placements in Oxfam and Plan International.

Nicky is especially proud of having developed the DAA communications team from a unit of one individual to a group of writers, web editors, photographers, social media specialists, and graphic designers. She is also pleased with how DAA itself has matured: the organisation developed a new strategic plan in late 2012, and following on from that a communications plan, an income generation plan, an operational plan and a program logic model.

 ‘I also believe in this organisation’s mission: to support diaspora community initiatives; provide resources, information and training; facilitate dialogue and shared learning,’ she observes. Nicky narrates several examples of well-meaning Western organisations who have attempted to effect change in developing countries without having a solid grasp of the local scene. ‘So often, these great-sounding projects just disintegrate because there is no understanding of how local people live every day,’ she says. ‘It makes more sense to train people from developing countries—as DAA does—and these people can then bring back that knowledge to their countries. They know the territory.’

‘I would also like to see Australia recognise that diaspora groups can play a key role in international development. When we have this recognition, we might be able to get more funding, work with more groups, and then we can grow,’ she says optimistically.

 Nicky will be leaving DAA in July to return to her house in Hawaii. (She had worked there for almost ten years, in the 1990s.) ‘What’s in store for me?’ Nicky muses. ‘Perhaps I’ll get part-time work in Hilo, teaching ESL; I have contacts at the university there. I’m thinking of doing consulting for individuals who wish to contribute to non-profits. I’m excited about the possibilities!’

 Everything does, indeed, change. And, for Nicky, changes—even tough ones—are to be met with courage and grace. ‘My mantra is, “Change is good,” so it doesn’t frighten me,’ Nicky says, and smiles her wonderful smile. ‘I’m willing to do things on my own, and to accept the challenges as they’re given to me.’

Amy Rashap - writer.

If you would like to support the work of Diaspora Action Australia, please click here. 

On the move

Fresh news coming soon as I head off overseas again. After three and a half terrific, rewarding, and inspirational years working at Diaspora Action Australia, my itchy feet are itching!

Going Private (nothing to do with health care!)

To all regular readers of this blog - I've decided, with reluctance and after much thought, to "hide" this blog and make it available only to pre-approved people with a password.

In the past, as I've written about my own health situation and the politics surrounding Myalgic Encephalomyelitis, I never expected my health to improve to the extent that I would work again. I'm now well enough to begin looking for part-time work. Unfortunately I'm in a country and an economic climate where discrimination of all kinds appears to be rife. Here in Australia I've been advised by many that I will face discrimination for having no local work experience, no local qualifications, for my age, for having been out of the work force for several years... all of this on top of having been diagnosed with an illness that still goes unrecognized and derided by the majority of health professionals. Thus I've decided not to prejudice my job hunt any further - any intelligent recruiter these days will look me up on the internet and find this blog without difficulty.

If you would like to have access to this blog in the future, please leave a comment below with your email address, or write me directly on: nicolareiss@gmail.com, and I'll send you the password (as soon as I've thought one up!).

Myalgic Encephalomyelitis: International Consensus Criteria

The Journal of Internal Medicine has just published the ME: International Consensus Criteria. This document, prepared by a group of practicing physicians with a long history of treating patients with ME, is a practical tool to aid doctors in the diagnosis of ME.

The document can be accessed here.

Out and About

A participant on one of the ME forums commented a while back that those who recovered no longer hung out on the forums to share what they'd learned about getting well. Now I understand why: after four years with no social life and unable to enjoy every day activities, I now have no inclination to stay indoors tapping away on the laptop. I feel like I want to be out meeting people, going to every concert, seeing every art exhibit, taking every class, walking every path, shopping in every store, sitting in every café... the urge to get out and enjoy life is strong! So here are a few photos taken in the past few weeks as I get out and about here in Melbourne. Click on any photo to see a larger version of it.

My local train station. 

A foggy morning in North Fitzroy. Melbourne and Sydney are well-known for the cast iron decorations on many of the older houses. 

     

Carlisle Street: click on the photo to see the "Texas Milk Bar" lettering; the old milk bars are close to extinction. 

Sandringham Beach (no, not Norfolk!)

Sunset over Carlisle Street. 

             

Looking out over Port Philip Bay.

A different person

My older brother dropped by the house this morning. We hadn’t seen each other in over two months and he was taken by surprise:  “You’ve really lost weight – you’re almost a different person!”

I’m gradually getting used to my new body, which is both much slimmer and much healthier than last year’s model. Sometimes I think that I’ve been trapped in the wrong body for most of my life and getting diagnosed as fructose intolerant has been the answer to many previous problems.

After this long battle everything is getting easier. I now function at around 80% of where I think I should be for my age – compared to about 40% this time last year. I’m three months into my “gut healing” diet and a week into the pill-popping regime prescribed by my doctor. The only items of clothing that still fit are my socks. Not having worked for over three years my funds are a little low, so I can’t go out and replace my entire wardrobe as I’d love to. But I live in a swish part of town generously apportioned with charity (“opportunity”) shops where some careful searching finds me well-made and barely-worn clothes from up-market stores for just a few dollars. Clothes shopping for a size 10 “small” is so much fun – suddenly I look good in almost everything!

Federation Square, Melbourne: with Krispin Fernandes, visiting from Timor Leste.

Lyme Disease

I'm re-posting a post from Facebook because so many people with ME ("CFS") actually have something else, and very often that "something else" is Lyme Disease. Here's the post:

"I was dx'd with ME/CFS for 17 years before finding out I had Lyme, Bartonella and Babesia last November. Since being on treatment for the last 7 months, my life is returning! I am getting my life back after 17 years. My passion now is to ask all of my ME/CFS friends to consider getting retested for Lyme Disease. Even if you had tests and they were negative (mine was three times from 1993-2004), and/or even if you cannot recall being bit by a tick, or think you cant have it because you don't live in a "Lyme" state.


The usual test given (the ELISA test) to test for Lyme is 50-59% wrong Always. You need to get a western blot test at a reputable Lyme lab to accurately test you. I can help you with this with resource on Push Pin Angels.

This is my story that starts when I first found out I was Lyme positive till this week. I pray you all consider getting re-tested. There is a page on the web site above entitled "first things first..." that describes the process of getting retested, and answers your immediate questions.

Remember that Dr. Mikovits reported that of the ME/CFS patients she tested for XMRV, 40% had Lyme as well. And there are two other studies now reporting that so many ME/CFS sufferers are testing positive for Lyme.

Please consider getting retested? Thank you for reading this!"

Doing Well

I’ve now had my third visit to the “CFS Discovery” clinic here in Melbourne – an odd name, but a fortunate discovery for me. Three months into my “detox” diet, initiated following a diagnosis of fructose intolerance by the clinic, I am doing well. In fact I’m doing far better than I ever expected, and I’m enormously grateful that this clinic exists. The doctors, nurses, and other clinic staff are terrific – professional, competent, thorough, and friendly. Following additional tests my diagnosis of “ME/CFS” has been confirmed using the Canadian Consensus Criteria. (A word here: the clinic uses the CCC and not the stricter Nightingale definition of ME; the clinic also uses the term “CFS”, however they treat the disease on a strictly biological/physical basis.) I will give further details of my diagnosis and test results in a later post. At the moment I’m still reading through the results and information given me by the clinic, and organizing all the medicines and supplements that have been prescribed.

Physically I’m now able to go out most days. I can attend meetings and classes (I’m taking a Spanish evening class), and can once again enjoy sitting in a restaurant or café (I can’t actually consume anything they offer, but my extreme noise sensitivity is gone) talking to friends. I can go for a walk or wander around the shops for one to two hours. I frequently skip my afternoon rest, and I sleep 7 – 8 hours a night. I must still stay within my limits – when I try to do too much (a yoga class, too much socializing) then I need more rest and the brain fog/general malaise returns. I am still sick, but the difference between now and a year ago is huge.  I have added a range of vitamins and supplements to my diet, but haven’t yet begun taking prescription medication (soon to begin). It is clear that in my case at least, the fructose intolerance (and possibly also celiac disease) is a key factor in my illness. I advise anyone and everyone with any kind of “mystery” ailment to get tested for food intolerances, fructose and lactose malabsorption, and to test for celiac disease. These problems remain unrecognized and under-diagnosed. 

Melbourne city center: after losing another 3kg since April, my once too-tight clothes are now looking decidedly baggy!

Birds in the Bush

Some weeks ago I drove up to Tanjil Bren in the mountains to the east of Melbourne - not exactly the Alps, but there is skiing at Mt Baw Baw in the winter (i.e. now!). There's even a wiki for Tanjil: http://en.wikipedia.org/wiki/Tanjil_Bren although I think calling it a "town" is rather stretching things; I'm not even sure it would count as a village in the UK, as there's no pub!

Here's the view on the drive up. It takes a little over two hours to get there. It used to take longer. The last time I did the drive, the last section of the road was still unpaved.

And here's a mailbox that sits at the end of a long drive, where we stopped to pick Spanish chestnuts.

The birds are what I enjoy most about Tanjil. Here's a flock enjoying breakfast on the terrace of the forest cottage owned by my brother, where we stayed. The birds most commonly seen near the feeder are king parrots, crimson rosella, kookaburra, and currawong.

You can click on any photo to enlarge it. In this photo on the left you'll see three different birds sitting in a row on the fence - a rosella, a kookaburra, and a king parrot.

This was the view from my bedroom window - although I didn't actually sleep in the bedroom. It was too cold! I slept on the lumpy sofa in the main room with the wood heater, which we kept burning all night. At 838m above sea level (2,749ft) it was very cold, staying just above freezing at night while we were there (it will certainly be colder now). The elevation also had a direct impact on my body. When I stepped out of the car on arrival my legs turned to lead and I moved with difficulty, heart pounding. By the second day I was able to walk around a little, but taking it very, very slowly. In contrast, a few weeks later here in the city I can now sustain a good clip for ten minutes or so when I need to dash for the train, or a normal pace for an hour of walking around the shops. I couldn't do that a few months ago.

More notes on healing

I've now been on my leaky gut healing diet for 3 weeks (no fructose, no gluten, no processed carbs, no grains, no sugar/sweetener of any kind, no legumes, no nightshades, no nuts, no dairy, no fruit, no spices) and I was on a less limited but still strict diet for about a month before that. I find it easy to stick to - my cravings have all disappeared, and I don't feel particularly hungry. I eat 3 meals and a couple of snacks a day. It's easy to manage as long as I eat at home. In fact, it makes my life much simpler and easier. I eat a lot of protein (chicken, beef) which makes it satisfying, along with plenty of fresh vegetables cooked with olive oil. My snack food is a cooked mixture of quinoa with sunflower, pumpkin, sesame and chia seeds. I drink decaf tea with rice milk, and plenty of water.

I've been gradually feeling better, but the big difference kicked in about 5 days ago - and it's a huge difference. My brain fog is almost entirely gone - not totally, but close to it. I feel like I have my brain back - I can think clearly again, and that's wonderful! My dizziness and orthostatic intolerance have gone, the lethargy has gone. The 'general malaise' - just feeling sick so much of the time - has gone. My energy is up about 15% - 20% - I hope this will improve, but I'm not yet taking any kind of supplements at all, so I'm happy with what I have so far.

My noise sensitivity has improved, though not entirely disappeared. I’m still sensitive to sun. My stomach issues are much improved - no more bloating and gas, regular BM. Still have slight indigestion at times. Mouth ulcers have gone. Generally better able to deal with stress (still some work to be done, but it's improved). My mood has noticeably improved since I stopped eating fructose. I lost 8kg (17 lbs) between Nov-Feb, and have lost a further 5kg (11 lbs) since Feb – the weight loss was needed and is welcome. I feel much better for it.

I still feel very stiff and achy when I get up in the morning – no, it’s not age! My 86-year old mother doesn’t feel this. I still get some brain fog when tired, when talking to people or in a noisy environment. I still have some noise sensitivity, and can still get quickly unnerved in certain situations with only a little more stress than usual. I’m still resting in the afternoons, and still limiting my exercise. I still have some concentration problems, especially when reading; I still have an issue with temperature control – either feeling too hot or too cold very quickly.

I have tested positive for fructose malabsorption. My serological test for celiac disease was negative, but since doing the test my sister was diagnosed positive using the genetic test, so I am now having that done. It is possible to have both ME and celiac disease.

I tested negative on lactose malabsorption and IgG food antibodies – however I have heard that many people with ME (“CFS”) test positive on these. I’ve been diagnosed with ME/CFS according to the Canadian Consensus Criteria, and have been sick for four and a half years. It is generally acknowledged that there are different types of ME, so that what works for one person may not make any difference to another. On the other hand, it would make sense for anyone with symptoms similar to those of ME to get tested for celiac disease, fructose and lactose malabsorption, and IgG food antibodies. In most places your GP (primary care physician) should be able to order these tests.

 Had lunch out with family members today - first time to enjoy eating in a restaurant for several years.