Showing posts with label myalgic encephalomyelitis. Show all posts
Showing posts with label myalgic encephalomyelitis. Show all posts

Wednesday, July 08, 2015

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. 




Friday, February 18, 2011

UK PACE Study Highly Misleading

I've sent the message below to some journalists. Please feel free to send this message on to anyone else you know, journalists, doctors, whomever. It is extremely important that we do our best to counteract this highly misleading study that has just been published in the UK. It will have a negative impact on us all.

Dear -------,

Today the Lancet has published a study regarding "Chronic Fatigue Syndrome" which is highly misleading. I would very much appreciate your taking the time to read the following press releases and publishing a piece in ------- that gives accurate information about the problems with the PACE study.

Patient groups all over the world are aghast at this new study - we all know from personal experience (as I assure you I do) that exercise makes the condition far worse. This study will literally endanger the lives of millions - especially vulnerable children who are unable to speak up for themselves if forced to exercise beyond their capacity.

This is the link to the Lancet publication: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

It is crucial to note that the participants in the study were: "patients meeting Oxford criteria for chronic fatigue syndrome".
However the Oxford criteria are so vague as to include almost anyone who feels "tired" and do NOT account for people with the neurological illness M.E. as identified by the WHO and the more commonly accepted Canadian Consensus Criteria (available here: http://sacfs.asn.au/news/2010/08/08_13_canadian_consensus_case_definition_revisited.htm)

Please see the statement from the ME Association in response to the study:
http://www.meassociation.org.uk/?p=4607

And the statement by Professor Malcolm Hooper:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm

This press release from the ME/CFS Worldwide Patient Alliance also came out today:
http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf

This is how the NY Times has reported on the study:
http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=3


I also recommend watching this trailer for an upcoming film about M.E.:

http://www.youtube.com/watch?v=JzcjVVQk5UM&feature=youtu.be

Please let me know if you have any questions. Thank you very much indeed.

Friday, January 21, 2011

XMRV and me

I have not yet had the opportunity to get tested for the XMRV virus – the third human retrovirus discovered following HIV (AIDS) and HTLV (leukemia/lymphoma). There are no labs here in Australia capable of testing for this virus, and – so I’ve been told – no plans to set one up. So anyone here who would like to be tested has to figure out how to get their blood samples sent off to a lab in the USA or Belgium. I will eventually get tested – one of the leading world specialists, Dr Kenny de Meirleir, comes to Melbourne regularly to see patients and arrange for tests. The advantage of getting tested is to enable a decision about taking anti-retrovirals. These are the drugs currently accepted for treating people with HIV/AIDS. In the USA some people with ME (“CFS”) are already taking anti-retrovirals, even though no large-scale drug trials have been carried out (see, for example, this blog written by a medical doctor who tested positive for XMRV: http://treatingxmrv.blogspot.com/).

On the political side of things, the battle rages on – especially in the UK. Studies carried out in the US by government agencies as well as the leading private research institution for research into neuroimmune diseases, the Whittemore Peterson Institute (WPI), have shown undeniable links between people sick with ME (“CFS”) and the XMRV retrovirus. However the WPI is still not winning the government research grants that ought to be coming its way given its excellent record in this area. In the UK both the media (including, disappointingly, The Guardian) and government health authorities are in complete denial (to be kind – the truth is more likely “steeped in corruption or willful ignorance”) over the importance of recognizing and dealing with this health catastrophe that affects around 250,000 people in the UK and is estimated to cost the government billions of pounds annually in lost tax revenues, disability payments, and health care. Estimated ME sufferers worldwide are around 17 million.

If you would like to help make a difference in my life, and the lives of millions around the world suffering from devastating neuroimmune diseases, please consider donating to the WPI on a regular basis (I do!): http://www.wpinstitute.org/help/help_donation.html

For anyone interested in the research and the key documents related to XMRV, please follow these links:

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html


The New York Times has been especially good about covering the issues. Here are some of their articles:

A Big Splash From an Upstart Medical Center New York Times http://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

The Lingering Mystery of Chronic Fatigue Syndrome http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts http://www.nytimes.com/2011/01/04/health/04fatigue.html

Gearing Up for the Big Search for XMRV http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

Friday, January 29, 2010

Corruption


I'm posting a comment written by someone else today because I couldn't find a way to say it any better myself - and the more I allow the reality of what this means to sink in, the more stunned I am. People with ME in the UK have literally been sacrificed by those who have more power - and they have enough power to ensure that the way in which their decisions have been made are to be kept secret from the public. OK, here's the post by Andrea Pring; more from me below. 


"M.E. is all over the news today. So glad to see that the subject matter is being given the serious reporting it deserves. However, instead of discussing the niceties and legalities of assisted suicide, what they should be asking is why a young woman was allowed to lie and rot in that bed for17 years with no proper medical care. Perhaps now the country will see how medically neglected sufferers of M.E. are. The psychiatric element has claimed this illness for their own vested interests and as such those who are suspected of having the illness in the UK are DELIBERATELY given inappropriate testing and treatment. Doctors are advised NOT to test for the very things that will show the biological damage that exists. Damage to the heart, brain, spine and nervous system. A simple tilt table test would show how our heart and circulation is impaired but this is one of the very tests doctors are advised NOT to administer.

The corruption goes very deep so deep that in fact there are secret MRC files on M.E. held at the UK Government National Archives at Kew. These files contain records and correspondence dating back to at least 1988 (which is the period when M.E was given psychiatric status in the UK, despite the fact that it was and is classified by the WORLD HEALTH ORGANISATION (WHO) as a NEUROLOGICAL disesase and has been seen as a distinct illness since the 1930's). Initally closed until 2023, this period has now been extended to 2071. The normal closure period is 30 years. Curious?"



You can find the original post here:
http://dancingwiththesandman.blogspot.com/2010/01/corruption.html




The records that have been closed to public view can be found here:
http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=-5475665&CATLN=7&Highlight=&FullDetails=True&j=1


The file is: 



FD 23/4553   Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS) : papers and journal articles; correspondence and enquiries with MRC replies

.... and these files have been closed until 2071. Why? Who are they trying to protect? What is going on here? Why is it in the public interest to close these files? I would like to encourage anyone reading this who lives in the UK to contact their MP and the national press about this. 

Monday, August 31, 2009

Relapses are made of this…

Anyone with ME knows that relapses are a fact of life. I should have seen it coming, the gradual increase of fuzziness in my head a warning sign, but optimism always wins and two weeks of feeling better (if not exactly ‘normal’) had led me astray.

Yesterday began almost as usual, except for feeling tired as I unzipped the mosquito net. The dizziness began unperceived, until at a certain moment I felt as if I’d tried walking around wearing a pair of half-inch thick glasses belonging to a myopic friend. From there I began to wonder if I’d been practicing my whirling dervish act for too long, and after a short phone call at around 10 am I had to give in and lie down.

I call these “lost days” – the days when I remain horizontal the whole day. If I’m lucky I can read a little. Mostly I sleep until the feeling of two bottles of wine too many along with a blow to the back of the head with a blunt instrument has begun to wear off, leaving me with a simple headache and low-grade fever.