tag:blogger.com,1999:blog-158901112024-03-14T15:40:02.044+11:00Nicky's Itchy Feet blogAfter four years in Rwanda and DR Congo I was diagnosed with myalgic encephalomyelitis in Oct ‘08. Following two years in Malta, I moved to Melbourne, Australia where I found a doctor who diagnosed fructose intolerance and - eventually - Lyme Disease. My health improved, I returned to work, and next week I'm going back to my former life on the Big Island of Hawaii. Take a look at older posts (2004-2008) for stories & photos from Africa. Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.comBlogger234125tag:blogger.com,1999:blog-15890111.post-85413632773545386972015-07-08T21:54:00.000+10:002015-07-08T21:54:12.598+10:00Leaving Diaspora Action Australia<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: xx-small;">DAA Donor Drive "thank you" messages; photo: Dinesh Liyanage</span></td></tr>
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<span style="font-family: Verdana, sans-serif;">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.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">Amy Rashap. Photo: Nick Chiarizia</span></td></tr>
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<b style="mso-bidi-font-weight: normal;"><span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">Nicky Reiss: Nothing is Permanent (but the
important things remain the same)<o:p></o:p></span></span></b></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">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.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">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, </span><span style="background: white; line-height: 107%; mso-ascii-font-family: Calibri; mso-bidi-font-size: 11.5pt; mso-hansi-font-family: Calibri;">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.’<o:p></o:p></span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">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.’<o:p></o:p></span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">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). <b style="mso-bidi-font-weight: normal;"><o:p></o:p></b></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><o:p><span style="font-family: Verdana, sans-serif;"> </span></o:p></span></b><span style="font-family: Verdana, sans-serif;">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.’</span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">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.’ <o:p></o:p></span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">(Nicky finally found a good doctor in Melbourne, and avows that her
health is now 85 to 90% restored.)<o:p></o:p></span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">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. <o:p></o:p></span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">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. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>‘I also believe in this
organisation’s mission: to support diaspora community initiatives; </span><span style="background: white; color: #333333; line-height: 107%;">provide resources, information and
training; facilitate dialogue and shared learning</span><span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">,’ 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.’<o:p></o:p></span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">‘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.<o:p></o:p></span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><o:p><span style="font-family: Verdana, sans-serif;"> </span></o:p></span><span style="font-family: Verdana, sans-serif;">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!’</span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><o:p><span style="font-family: Verdana, sans-serif;"> </span></o:p></span><span style="font-family: Verdana, sans-serif;">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.’</span></div>
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<span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Verdana, sans-serif;">Amy Rashap - writer.</span></span></div>
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<span style="font-family: Verdana, sans-serif;">If you would like to support the work of Diaspora Action Australia, please <a href="http://diasporaaction.org.au/donate" target="_blank">click here. </a></span></div>
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Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com2tag:blogger.com,1999:blog-15890111.post-62847464184436621532015-06-04T20:36:00.000+10:002015-06-04T20:36:56.854+10:00On the moveFresh 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!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDBo4EN69BYQ9dmKihk6TxLR0y8F-iObXsHfgq8mrYYe1WNvhlPwyMJqgCaxyLCVITZZfe4kUg1V4zGz9TWXgungSuNDkvxvt1Rh6gNhTBx1fWWtMPvWfxn7xbjYBsEJ_ZnPFF1w/s1600/Nicky%2526BehnamThankYou.24.04.15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDBo4EN69BYQ9dmKihk6TxLR0y8F-iObXsHfgq8mrYYe1WNvhlPwyMJqgCaxyLCVITZZfe4kUg1V4zGz9TWXgungSuNDkvxvt1Rh6gNhTBx1fWWtMPvWfxn7xbjYBsEJ_ZnPFF1w/s320/Nicky%2526BehnamThankYou.24.04.15.jpg" width="320" /></a></div>
<br />Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com2tag:blogger.com,1999:blog-15890111.post-43599744622619205262011-10-24T11:59:00.000+11:002011-10-24T11:59:22.472+11:00<b>Going Private (nothing to do with health care!)</b><br />
<br />
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.<br />
<br />
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.<br />
<br />
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!).Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com5tag:blogger.com,1999:blog-15890111.post-34941008364537501522011-07-24T10:34:00.000+10:002011-07-24T10:34:01.700+10:00<b>Myalgic Encephalomyelitis: International Consensus Criteria</b><br />
<br />
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.<br />
<br />
The document can be accessed <a href="http://www.hetalternatief.org/ME%20Carruthers%202011.pdf">here</a>.Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-23787461230117993982011-07-23T21:05:00.000+10:002011-07-23T21:05:54.147+10:00<b>Out and About</b><br />
<br />
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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Ct5dNYEx9zCgEQYI3YNXP3HfCGVyy5ihB1eUrfwxDuF4HD1-N5d-HdmFoaOhjLc-hJGwSzjJYt-o8VOoOs_EWGdqTksIog94DxvToaaI6C-cWTzhz6twfn-O_3oa9JTu0zRalw/s1600/Brighton+Station.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Ct5dNYEx9zCgEQYI3YNXP3HfCGVyy5ihB1eUrfwxDuF4HD1-N5d-HdmFoaOhjLc-hJGwSzjJYt-o8VOoOs_EWGdqTksIog94DxvToaaI6C-cWTzhz6twfn-O_3oa9JTu0zRalw/s200/Brighton+Station.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My local train station. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJl-MGwi35Iy3R-gkNwA5PaZ7DWYAS1-2FdGMCio72H668sj9kzKpZXQWrOxA3B77YTpG7PyqlJIDuCU-L6O3sAzJWk7aDAhO0hEJ9VYrvtxITLwP6pbKp1s4YF-oyhUFvUP6kYQ/s1600/Fitzroy+Fog+June+2011.JPG" imageanchor="1" style="clear: right; display: inline !important; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJl-MGwi35Iy3R-gkNwA5PaZ7DWYAS1-2FdGMCio72H668sj9kzKpZXQWrOxA3B77YTpG7PyqlJIDuCU-L6O3sAzJWk7aDAhO0hEJ9VYrvtxITLwP6pbKp1s4YF-oyhUFvUP6kYQ/s200/Fitzroy+Fog+June+2011.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A foggy morning in North Fitzroy. Melbourne and Sydney are well-known for the cast iron decorations on many of the older houses. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpx1rmbPEd-4nVlmsoi3GeOZIyvZ10Vc4L1uHHNC3CkMWdKRleWQnAqkr8Xyk0Ms4uYctJmnXgty4XH6llWzew5Cxp_vehoCJargeYUVyDckx0p7bJgd60wIx9-zHrSLd9JTUw8w/s1600/Texas+Milk+Bar.jpg" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="173" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpx1rmbPEd-4nVlmsoi3GeOZIyvZ10Vc4L1uHHNC3CkMWdKRleWQnAqkr8Xyk0Ms4uYctJmnXgty4XH6llWzew5Cxp_vehoCJargeYUVyDckx0p7bJgd60wIx9-zHrSLd9JTUw8w/s200/Texas+Milk+Bar.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-size: small;">Carlisle Street: click on the photo to see the "Texas Milk Bar" lettering; the old milk bars are close to extinction. </span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwjp8vPa-MGVSVFbwGDABtNJA2LstFTJeFVoMjmao_1QNGxvX98aeiptULRD61s6mwqPKu_M6EieAgGOvqS6GoifMpmXLbcTYBpCnnIPmD1pByz9e2vWVmifyD-eJ56StP3Bk6tQ/s1600/Sandringham+beach1+July+2011.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwjp8vPa-MGVSVFbwGDABtNJA2LstFTJeFVoMjmao_1QNGxvX98aeiptULRD61s6mwqPKu_M6EieAgGOvqS6GoifMpmXLbcTYBpCnnIPmD1pByz9e2vWVmifyD-eJ56StP3Bk6tQ/s200/Sandringham+beach1+July+2011.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sandringham Beach (no, not Norfolk!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4CwN3cOV2-Ol3zRNpGUYF77CRzpwfaaLcJgQ4i7cXY2YO6vvE1_GIixi4TFlZvuKh0JVphAs4YfpV7aBy1XdxrquqAGeDXDfwscMB0n0iU8lnsnJqrJn9vr1K85VoBfxosWpy5w/s1600/IMG_0457.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4CwN3cOV2-Ol3zRNpGUYF77CRzpwfaaLcJgQ4i7cXY2YO6vvE1_GIixi4TFlZvuKh0JVphAs4YfpV7aBy1XdxrquqAGeDXDfwscMB0n0iU8lnsnJqrJn9vr1K85VoBfxosWpy5w/s200/IMG_0457.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunset over Carlisle Street. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Looking out over Port Philip Bay.</td></tr>
</tbody></table>Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com3tag:blogger.com,1999:blog-15890111.post-77327013231418365162011-07-14T20:36:00.000+10:002011-07-14T20:36:54.215+10:00<div class="MsoNormal"><b>A different person</b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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:<span style="mso-spacerun: yes;"> </span>“You’ve really lost weight – you’re almost a different person!”</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcKDBWWtz6pvHSux5PGdM8wMYkbhi4iPZHrGHR-Cf5WlWdmRFju_2ovUn6P8GpP4iI88LhbGsFC1JiYYRwfxiPUsrNsbmYpj-NA7typBqaXrYKH5k6C_mu6nF-gPwsYS7tEEN6VQ/s1600/FedSq3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcKDBWWtz6pvHSux5PGdM8wMYkbhi4iPZHrGHR-Cf5WlWdmRFju_2ovUn6P8GpP4iI88LhbGsFC1JiYYRwfxiPUsrNsbmYpj-NA7typBqaXrYKH5k6C_mu6nF-gPwsYS7tEEN6VQ/s320/FedSq3.jpg" width="320" /></a></div><div class="MsoNormal"><br />
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</div><div class="MsoNormal">Federation Square, Melbourne: with Krispin Fernandes, visiting from Timor Leste.</div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com5tag:blogger.com,1999:blog-15890111.post-29065851134431217982011-07-11T12:10:00.000+10:002011-07-11T12:10:57.358+10:00<b>Lyme Disease</b><br />
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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:<br />
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<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">"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.</span><br />
<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;"><br />
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<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;"><span class="Apple-style-span" style="color: #333333; line-height: normal;">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 <a href="http://pushpinangels.blogspot.com/">Push Pin Angels</a><span class="text_exposed_show" style="display: inline;">.<br />
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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.<br />
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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.<br />
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Please consider getting retested? Thank you for reading this!"</span></span></span>Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com1tag:blogger.com,1999:blog-15890111.post-42872179192304958402011-07-07T12:26:00.000+10:002011-07-07T12:26:14.174+10:00<div class="MsoNormal"><b>Doing Well</b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I’ve now had my third visit to the “<a href="http://www.cfsdiscovery.com.au/index.html">CFS Discovery</a>” 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 <a href="http://www.name-us.org/DefintionsPages/DefCCC.htm">Canadian Consensus Criteria</a>. (A word here: the clinic uses the CCC and not the stricter <a href="http://www.nightingale.ca/index.php?target=def_ME_splash">Nightingale</a> 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. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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.<span style="mso-spacerun: yes;"> </span>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. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaODhhZ9DtgFd-QMV1SvUWHmsvwJicF41cJuobdpEb_OtFW7TTnWjXpJts1GSWZROhN-2JilAdIwkKtDwNfFsuyi2hyphenhyphens53_vXWoMizIWJY8CNZwgpQSpzTyACARU9GF9fEpHNQ4w/s1600/crop+of+me.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaODhhZ9DtgFd-QMV1SvUWHmsvwJicF41cJuobdpEb_OtFW7TTnWjXpJts1GSWZROhN-2JilAdIwkKtDwNfFsuyi2hyphenhyphens53_vXWoMizIWJY8CNZwgpQSpzTyACARU9GF9fEpHNQ4w/s200/crop+of+me.jpg" width="140" /></a></div><div class="MsoNormal"><br />
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</div><div class="MsoNormal">Melbourne city center: after losing another 3kg since April, my once too-tight clothes are now looking decidedly baggy!</div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com5Melbourne VIC, Australia-37.8131869 144.96297960000004-38.213623899999995 144.27785560000004 -37.4127499 145.64810360000004tag:blogger.com,1999:blog-15890111.post-31650536628384575542011-06-19T11:39:00.001+10:002011-06-19T22:17:24.795+10:00<b>Birds in the Bush</b><br />
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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: <a href="http://en.wikipedia.org/wiki/Tanjil_Bren">http://en.wikipedia.org/wiki/Tanjil_Bren</a> 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!<br />
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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.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEyom0qgdtdnYmeAHp-AE6tOhUV5XrUDaxHkQJ8vq9GyOGX-otZxpLn448n6vISDoyOxHDRE1FjWeDKL-oyyO29XC-IRD7Op1J4zU5mHe-W9syQnr6yp2ANSyBQOwaE9cFwhXNZQ/s1600/bedroom+view.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEyom0qgdtdnYmeAHp-AE6tOhUV5XrUDaxHkQJ8vq9GyOGX-otZxpLn448n6vISDoyOxHDRE1FjWeDKL-oyyO29XC-IRD7Op1J4zU5mHe-W9syQnr6yp2ANSyBQOwaE9cFwhXNZQ/s200/bedroom+view.jpg" width="150" /></a></div>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.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS01qUf17iwT_ekiAjDDdtFXd5rDt56ODiQ_8VwX2q-19g0pPo8HQ0D_BRxooyTit_O-V3jLbTbeqpE2trmMH-niezpLGJNfozQqRla9B0GBeMjiYGsEpU__atEN07uuhcttZrFg/s1600/Rosella+front.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS01qUf17iwT_ekiAjDDdtFXd5rDt56ODiQ_8VwX2q-19g0pPo8HQ0D_BRxooyTit_O-V3jLbTbeqpE2trmMH-niezpLGJNfozQqRla9B0GBeMjiYGsEpU__atEN07uuhcttZrFg/s200/Rosella+front.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS01qUf17iwT_ekiAjDDdtFXd5rDt56ODiQ_8VwX2q-19g0pPo8HQ0D_BRxooyTit_O-V3jLbTbeqpE2trmMH-niezpLGJNfozQqRla9B0GBeMjiYGsEpU__atEN07uuhcttZrFg/s1600/Rosella+front.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"></span></a></div>Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com2tag:blogger.com,1999:blog-15890111.post-61372770996177703132011-04-29T22:43:00.000+10:002011-04-29T22:43:00.931+10:00<div class="MsoNormal"><b>More notes on healing<o:p></o:p></b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">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. </div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip7gudfd7lvoasDA0xzCTlDcaE4QwileZnZRETvxEhaNhemuM3U1jIZU-ngGzpX1KFBRSj-xNhpcSirSMFDGCKlI7WwOK1tyItLMMUPY5mYBLVxKO-oRM0OXFvgo-DThx4MM4Mtw/s1600/IMG_0345.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip7gudfd7lvoasDA0xzCTlDcaE4QwileZnZRETvxEhaNhemuM3U1jIZU-ngGzpX1KFBRSj-xNhpcSirSMFDGCKlI7WwOK1tyItLMMUPY5mYBLVxKO-oRM0OXFvgo-DThx4MM4Mtw/s200/IMG_0345.jpg" width="150" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><!--[if !supportEmptyParas]--> Had lunch out with family members today - first time to enjoy eating in a restaurant for several years. <o:p></o:p></div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com10tag:blogger.com,1999:blog-15890111.post-75316710916338214542011-04-24T07:56:00.000+10:002011-04-24T07:56:54.480+10:00<span class="Apple-style-span" style="color: #262323; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18px;"><b>Chase Community Giving</b></span><br />
<span class="Apple-style-span" style="color: #262323; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18px;"><br />
</span><br />
<span class="Apple-style-span" style="color: #262323; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18px;">Chase (the bank people) have set up an interesting system for deciding who gets some of their money. Instead of figuring out for themselves who is most deserving, they leave it up to the public to vote. So an institution doing serious research that could, in the end, save hundreds of thousands of lives (not to mention saving the US national economy billions of dollars on medical bills and disability payments) is left using up precious time to scramble for votes among patients, many of whom are bed-bound without the energy to use a computer. I guess I'll pass on social commentary and the questions surrounding corporate social responsibility and how it is managed. Let me just say, if you're reading this, please join Facebook and then 'like' Chase Community Giving, and then vote for the Whittemore Peterson Institute - they are working hard to find a cause and a cure for myalgic encephalomyelitis (aka "CFS") and I am enormously grateful to them. And I've copied the next bit from someone who writes far better than I do, Laurel, who writes the <a href="http://dreamsatstake.blogspot.com/">Dreams at Stake</a> blog:</span><br />
<span class="Apple-style-span" style="color: #262323; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18px;"><br />
</span><br />
<span class="Apple-style-span" style="color: #262323; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18px;">"In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.<br />
<br />
It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.<br />
<br />
To vote for them, all you need to do is the following:<br />
(Note: Facebook account required)<br />
<br />
1. Go to: <a href="http://www.facebook.com/ChaseCommunityGiving?ref=ts" style="color: #2c7c94; text-decoration: none;" target="_blank">http://www.facebook.com/ChaseCommunityGiving?ref=ts</a><br />
2. Click "like" on top of the page<br />
3. Go to: <a href="http://apps.facebook.com/chasecommunitygiving/" rel="nofollow" style="color: #2c7c94; text-decoration: none;" target="_blank">http://apps.facebook.com/c<wbr></wbr><span class="ecxword_break"></span>hasecommunitygiving/</a><br />
4. Type "Whittemore Peterson Institute" in the search box<br />
5. Click on the WPI and then click VOTE!<br />
<br />
And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease."</span>Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-2228555356722029392011-04-20T08:17:00.000+10:002011-04-20T08:17:17.698+10:00<b>Vic Market</b><br />
<br />
I'm off to the <a href="http://www.qvm.com.au/qvm/qvm_home.aspx">Queen Victoria Market</a> tomorrow morning. A trip to the market used to be a priority on any Melbourne visit. When I arrived back early last November I couldn't imagine ever having the strength to get to the market again. It involves a short walk (10 - 15 minutes) to the local train station, a shorter walk (5 mins) from Flinders Street station to the tram, and then a quick hop from the tram into the market - and then the hubub and size of the market itself. I used to wander around for hours, the Sunday morning extended version with entertainment being a special treat. But tomorrow will be a well-planned affair. Arrive at 10:30 am, a brief visit to the food hall (a mecca for foodies!) and then out to the 'shed' to look for a pair of sheepskin boots to keep my tootsies warm over winter. Leave by noon. Back home by 1 pm, lunch (cooked in advance), and ready to lie down before I turn into a pumpkin at 2 pm. No plans whatsoever for Friday - recovery time.<br />
<br />
My disgust at how people with M.E. continue to be treated by those in authority in the U.K. is so deep that I am left without words. Fortunately others are not so bereft. One of my favourite bloggers is Nasim Marie Jaffry and you can read what she has to say about the editor of The Lancet <a href="http://velo-gubbed-legs.blogspot.com/2011/04/ignorance-about-me-is-unacceptable-when_4937.html">here</a>.<br />
<br />
And for those of you who have a few pennies to spare (even one pound or one dollar a month will be put to good use) I urge you to join the <a href="http://countmeincampaign.blogspot.com/">Count Me in Campaign</a> to raise funds for research into neuro-immune disease at the <a href="http://www.wpinstitute.org/">Whittemore Peterson Institute</a>. Thank you.Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com3tag:blogger.com,1999:blog-15890111.post-33621117506627900342011-04-03T12:21:00.000+10:002011-04-03T12:21:40.329+10:00<div class="MsoNormal"><b>Random Thoughts on Healing</b></div><div class="MsoNormal">"Nothing herein should be construed as medical advice"</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">There is almost nothing more certain of bringing about a relapse than writing about feeling better. Four weeks of eating foods I normally avoid, in order to get tested for various food intolerances, left me with a noticeable worsening of symptoms: fuzzy brain, lethargy, stiff and achy limbs, and stomach problems. Now that the tests are over and I'm reverting to a wheat-free, dairy-free diet I'm picking up speed again. And I'm now more convinced than ever of the role of diet in treating this disease in some patients.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I'll admit I'm a little slow to catch on. Partly that's because I've tried avoiding different foods in the past with limited effectiveness; partly because there's so much information out there on the internet that I find it overwhelming, confusing, and frequently contradictory. Aside from the merest handful of doctors taking an interest in this disease, patients are left to scrabble around on their own in search of answers. This makes for a very large group of vulnerable people (estimated 17 million worldwide). Many are simply far too sick to use the internet or libraries; many are too sick to make it out of bed and into a clinic; many are just clinging on, burdened with other responsibilities such as taking care of equally sick children; most don't have the scientific background that would enable them to understand the published research papers that shed light on the illness.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">A couple of recent readings are driving me forward at present. One is a recent blog entry written by a doctor who has ME, as do her daughter and husband. Dr Jamie Deckoff-Jones is read and appreciated by thousands of patients for her openness and willingness to discuss the disease and treatment that she is trying out on herself. It is worth reading as much of her blog as you are able:</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">http://treatingxmrv.blogspot.com/2011/03/treatment.html</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I look in on the patient forum "Phoenix Rising" from time to time (with thanks to a good friend who encourages my participation). I avoid most of the patient forums, but this thread was brought to my attention and I found it interesting enough to copy and re-read:</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">http://phoenixrising.me/forums/showthread.php?1346-what-you-need-to-do-and-why</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The tests that I've had to date show that I have a "leaky gut" problem (aka "gut mucosal barrier dysfunction") and a problem with fructose malabsorption. Unfortunately I have another 3 months to wait for further test results and my next appointment with the doctor. In the meantime I am adjusting my diet in line with the test results. The more I read the more convinced I am that diet underlies many health concerns. I would encourage everyone with any health problems at all (including mental health) to get tested for food intolerances and allergies, lactose and fructose malabsorption using the hydrogen breath test, to try and figure out if you have a sensitivity to salicylates, and to test for coeliac (celiac) disease – one of the most commonly undiagnosed health problems (it can be asymptomatic but still cause internal damage). Work with a recognized, qualified medical practitioner whenever possible. And read widely!</div><div class="MsoNormal"><br />
</div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com1tag:blogger.com,1999:blog-15890111.post-71426707269690437082011-03-06T12:53:00.000+11:002011-03-06T12:53:57.150+11:00<div class="MsoNormal"><b>Feeling Better?<o:p></o:p></b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">At one time I thought: “if it doesn’t get me back to work then I don’t want to know” when considering a “cure” or treatment for M.E. But in the past two months I’ve picked up around 10% in my overall health – and that 10% makes a big difference. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I can now drive short distances. This means I can go to the library, do some grocery shopping, get a hair cut, and go for some medical appointments without needing to ask for help. The sense of independence this provides is liberating – I am so dependent on others for many crucial aspects of life – and lifts my mood on days I go out. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The question I’m asking myself now – and if you have M.E. you may be thinking it too – is what have I done to feel better? Following are the main variables that have changed in my life in the past four months since moving to Melbourne from Malta:</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><u>Less exercise</u>: I no longer need to carry my groceries – either someone else is doing the shopping, or I go by car; I no longer need to do all the cleaning myself; I no longer use stairs on a daily basis; I no longer have cats to clean up after and entertain (I miss them, but that’s a different matter). </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><u>Diet</u>: I have been careful about diet for a long time, but have recently made further changes: cutting out sugar and sweet things entirely; cutting out wheat and gluten almost entirely; greatly reducing the amount of carbohydrates (rice, oats, bread, pasta, etc) eaten; reducing the amount of food I eat and eating smaller portions for all meals; limiting fruit to 1 piece a day (or less). I am in the process of getting tested for a wide range of food intolerances, including testing for celiac disease, so expect more adjustments to come. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><u>Climate</u>: Melbourne has a significantly drier climate than Malta, where humidity causes a lot of discomfort for people with ME and MS, in both summer and winter. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><u>Noise</u>: I now live in a relatively quiet suburb where I’m exposed to far less noise from neighbours, traffic, and local construction projects. The level of noise pollution in Malta has reached intolerable levels, and caused me a lot of stress. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">There are other differences, but I think these are the most significant. Or it is just in the nature of this disease with its fluctuating symptoms that I happen to feel somewhat better at present. I must still be on my guard: a couple of hours away from home, spending time with another person, will still leave me feeling brain-fogged and drained. Ready to return to work I am not. </div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5uga0cZc_QtIVN9CPYOEKMuO_OnbesmPezKQdZAKvS1GPK4ABJAnZLlRFU1peMGtcsirq8LkJcxFLuc7jZXJKVJdhhnT6jH5K9XxjSIOQm9Vd_ljS0Z-DlsQNw3RQ2gYsu82WRA/s1600/Jan+30+2011+MGA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="248" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5uga0cZc_QtIVN9CPYOEKMuO_OnbesmPezKQdZAKvS1GPK4ABJAnZLlRFU1peMGtcsirq8LkJcxFLuc7jZXJKVJdhhnT6jH5K9XxjSIOQm9Vd_ljS0Z-DlsQNw3RQ2gYsu82WRA/s320/Jan+30+2011+MGA.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Visiting my father's photographic exhibit at the Monash Gallery of Art on one of the hottest days of the summer. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com12tag:blogger.com,1999:blog-15890111.post-5822778954964442302011-02-18T17:56:00.000+11:002011-02-18T17:56:49.530+11:00<b>UK PACE Study Highly Misleading</b><br />
<br />
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. <br />
<br />
Dear -------,<br />
<br />
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.<br />
<br />
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.<br />
<br />
This is the link to the Lancet publication: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract<br />
<br />
It is crucial to note that the participants in the study were: "patients meeting Oxford criteria for chronic fatigue syndrome".<br />
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)<br />
<br />
Please see the statement from the ME Association in response to the study:<br />
http://www.meassociation.org.uk/?p=4607<br />
<br />
And the statement by Professor Malcolm Hooper:<br />
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm<br />
<br />
This press release from the ME/CFS Worldwide Patient Alliance also came out today:<br />
http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf<br />
<br />
This is how the NY Times has reported on the study:<br />
http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=3<br />
<br />
<br />
I also recommend watching this trailer for an upcoming film about M.E.:<br />
<br />
http://www.youtube.com/watch?v=JzcjVVQk5UM&feature=youtu.be<br />
<br />
Please let me know if you have any questions. Thank you very much indeed.Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com5tag:blogger.com,1999:blog-15890111.post-10777036555929899772011-01-21T21:11:00.000+11:002011-01-21T21:11:51.213+11:00<b>XMRV and me<br />
</b><br />
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: <a href="http://treatingxmrv.blogspot.com/">http://treatingxmrv.blogspot.com/</a>).<br />
<br />
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. <br />
<br />
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!): <a href="http://www.wpinstitute.org/help/help_donation.html">http://www.wpinstitute.org/help/help_donation.html</a><br />
<br />
For anyone interested in the research and the key documents related to XMRV, please follow these links:<br />
<br />
<a href="http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf">http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf</a><br />
<br />
<a href="http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk">http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk</a><br />
<br />
<a href="http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html">http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html</a><br />
<br />
<a href="http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html">http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html</a><br />
<br />
<a href="http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html">http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html</a><br />
<br />
<br />
The New York Times has been especially good about covering the issues. Here are some of their articles:<br />
<br />
A Big Splash From an Upstart Medical Center New York Times <a href="http://www.nytimes.com/2009/11/12/giving/12SICK.html">http://www.nytimes.com/2009/11/12/giving/12SICK.html</a><br />
<br />
New Hope in Fatigue Fight Wall Street Journal <a href="http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html">http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html</a><br />
<br />
The Lingering Mystery of Chronic Fatigue Syndrome <a href="http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health">http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health</a><br />
<br />
Exhausted by Illness, and Doubts <a href="http://www.nytimes.com/2011/01/04/health/04fatigue.html">http://www.nytimes.com/2011/01/04/health/04fatigue.html</a><br />
<br />
Gearing Up for the Big Search for XMRV <a href="http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/">http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/</a>Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com13tag:blogger.com,1999:blog-15890111.post-71686545296913956832011-01-01T21:23:00.000+11:002011-01-01T21:23:01.706+11:00<div class="MsoNormal"><b>Happy New Year Everyone!</b></div><div class="MsoNormal"><br />
<div class="MsoNormal">Huge changes in my life – I am now living in Melbourne, Australia. Last year I applied for, and after many months was granted, residence in Australia. I arrived here on the 6<sup>th</sup> November. I came on an immigrant visa category known as “last remaining relative”. At the time of application I was the only member of my immediate family who did not live in Australia. My parents, brothers and sister, and a growing collection of in-laws are all either Australian residents or citizens. I had held out for as long as I could. </div><div class="MsoNormal"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsfZzHc5qDAPYw50CwXBOC58qXfBRDvnXBMrLh8y-Tv4T-KMhzvwybRY8pZQUpvj2fRsTtsxpyHskn26qrlsLTdtnIVF517LhNSP3xFbA6LOoC5ZaD3_vEgdrw4wHJSzUpCHQUIQ/s1600/Garden+to+back+of+house.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsfZzHc5qDAPYw50CwXBOC58qXfBRDvnXBMrLh8y-Tv4T-KMhzvwybRY8pZQUpvj2fRsTtsxpyHskn26qrlsLTdtnIVF517LhNSP3xFbA6LOoC5ZaD3_vEgdrw4wHJSzUpCHQUIQ/s320/Garden+to+back+of+house.jpg" width="320" /></a></div>Lemon Tree and Bottle Brush<br />
</div><div class="MsoNormal">Melbourne is a city of close to 4 million inhabitants. Aside from an academic year in London a long time ago, I’ve never lived in a big city. I’m a small-town gal at heart, and feel lost in the sprawling, anonymous suburbs of this place. Only the unusual warbling calls of the indigenous birds and the occasional scent of eucalyptus on a warm day hint that this is a very different continent. The suburbs of Melbourne feel just as far from the more evocative Alice or Darwin, Kakadu or the Great Barrier Reef as a suburb of London or L.A. </div><div class="MsoNormal"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicnyRQxk-Ihk5nTwtRYUSkQdzOPbUHO3i8QSNypEvYThzxCJxkFxnKonWkGu39mo1Hyk3DPEIyv6aJJkyWCevOFeAD6DWWHhFhViMLKPX-DOHWAQwO3WRtNCLuQHDRE4If5DzQaw/s1600/Oakwood+Ave+towards+Nepean+Hwy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicnyRQxk-Ihk5nTwtRYUSkQdzOPbUHO3i8QSNypEvYThzxCJxkFxnKonWkGu39mo1Hyk3DPEIyv6aJJkyWCevOFeAD6DWWHhFhViMLKPX-DOHWAQwO3WRtNCLuQHDRE4If5DzQaw/s320/Oakwood+Ave+towards+Nepean+Hwy.jpg" width="320" /></a></div>White picket fence in the suburbs<br />
</div><div class="MsoNormal">Next on the agenda: doing the rounds of doctors in the hope of finding answers. At least here there are a few doctors who are willing and interested in treating ME – even if they do not yet appear to distinguish between those with neurological ME, and others with a variety of illnesses that are mistakenly diagnosed as “CFS”. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I have not made any New Year’s resolution to keep the blog going. Either I will or I won’t. To find out, keep checking back!<span style="mso-spacerun: yes;"> </span></div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com4tag:blogger.com,1999:blog-15890111.post-65468405263776039292010-07-25T05:51:00.000+10:002010-07-25T05:51:50.073+10:00The very best site right now for information regarding the failure of the CDC to act is this one:<br />
<br />
http://www.cfscentral.com/<br />
<br />
The older posts are all well worth reading. The writer is an excellent science journalist. We are indebted to her for the research she has done and the contacts she has made in order to bring us accurate and up to date information.Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-66905821445591547072010-05-28T03:25:00.000+10:002010-05-28T03:25:43.658+10:00<b>Addicted to Facebook</b><br />
<br />
I'm embarrassed to admit that FB takes up far too much of my time. Even worse, I've just become one of the moderators of a group: ME Sufferers Malta. I post a lot of ME-related articles and links on the group page. If you know any Maltese with ME, please let them know about our new group. There's also a website: <a href="http://www.mesufferersmalta.org/">http://www.mesufferersmalta.org/</a> which is run by Rebecca Sultana, who does an amazing job in spite of the debilitating illness.Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-68230509155017001732010-05-12T03:29:00.000+10:002010-05-12T03:29:20.188+10:00<!--StartFragment--> <br />
<div class="MsoNormal"><b>Why is it important to raise awareness about Myalgic Encephalomyelitis (ME)?<o:p></o:p></b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Why am I making such a fuss about this disease and why should you listen to me? The first reason is that this is an illness, most likely caused by either by an enterovirus (like polio) or possibly by a retrovirus (like HIV), which anybody can get – you, your child, your partner, your friend, your lover. From research and experience we know that exercise of any kind makes the illness worse. Your doctor doesn’t know this. Doctors around the world are trained neither to recognize the symptoms of ME, nor how to treat it. There is no cure. Your government is spending no money on bio-medical research into prevention or treatment of this devastating neurological illness that affects more people than MS. The suicide rate for people with ME is unacceptably high; people have died of ME in epidemics, but most deaths from ME go unrecorded as they are (like deaths from AIDS) due to related conditions such as cancer and heart disease. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The second reason to listen is to protect children and young people with ME from dangerous treatment, from an unnecessary worsening of their condition, and from possible forced removal from their families (yes, it happens). Children are particularly vulnerable with this illness, and children as young as five have been known to get it. Because there are as yet no easy tools for diagnosis, such as a simple blood test, children are frequently not believed when they complain of feeling unwell. In both the UK and the USA there are cases of social services forcibly removing children from their families and placing them in psychiatric units, as if they were mentally ill. Having just given away kittens I am living with an upset and bereaved mother cat – I cannot begin to imagine the anguish of caring parents whose sick child has been forcibly removed from their care; yet this is happening in our societies, to children sick with Myalgic Encephalomyelitis. ME is (like MS) a neurological illness, identified and classified as such by the World Health Organization (WHO ICD- 10 G93.3), yet misinformation and obstruction by psychiatrists and insurance companies has blocked bio-medical research into the condition, and has ensured that medical doctors remain in ignorance, or are unable to treat ME patients appropriately. If you are in any doubt about these statements I encourage you to read the Professor Malcolm Hooper report (http://www.meactionuk.org.uk/magical-medicine.pdf) or the book <i>Osler’s Web</i><span style="font-style: normal;"> by Hillary Johnson (available from Amazon). Look up the names of Sophie Mirza and Lynn Gilderdale, young women both dead from ME, both mistreated by the health authorities in the UK. Read about Alison Hunter who died of ME aged 19 in Australia, or read about teenager Ryan Baldwin, forcibly removed from his family by social services in North Carolina on 1/23/2009 (now back home and doing well). <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">ME may not kill you straight away; it is not as scary as ebola or malaria or dengue fever; but it will take away your life as you know it. Although some people only suffer from mild symptoms and are able to continue working and enjoy some kind of (usually restricted) social life, approximately 25% of people with ME are completely bedridden, living in darkened rooms, unable to feed or clean themselves, totally dependent on family members. These are the people with ME whom you don’t see. Others, like myself, are visible in the street once in a while (I have the energy, on average, to leave my flat twice a week), but we have no social life – we can no longer visit cafés or restaurants, we cannot enjoy a walk on the beach or a day out shopping or a family meal. These simple activities are too painful.<span style="mso-spacerun: yes;"> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">What can you do?</div><div class="MsoNormal">Learn to recognize the symptoms of ME – early diagnosis may prevent the illness from becoming severe. Understand that exercise makes the illness significantly worse. If you suspect that you, or someone you know, might have ME, stop all exercise and do whatever it takes to get a correct diagnosis. Symptoms of ME include (but are not limited to): dizziness, brain fog (a fuzzy feeling in your head to varying degrees), orthostatic intolerance (you find it uncomfortable to remain standing for more than a few minutes), difficulties with concentration and memory, lack of energy, a heavy feeling or pain in muscles, post-exertional malaise (i.e. exercise makes you feel worse, not better), a general feeling of being unwell (similar to flu or a bad hangover), headaches, extreme fatigue that is not relieved by sleep, difficulties sleeping, digestive problems, extreme sensitivity to light and noise.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Push for government funding into bio-medical causes of, and treatment for, ME. Contact your MP, your senator, your congressman or woman and ask them to ensure that government funds go into the right kind of research. In the UK vast sums of money have been wasted on research into trials of counseling and exercise for people with ME. Would you expect counseling and exercise to help people with MS, lupus or AIDS? No! Nor will they make any difference to people with Myalgic Encephalomyelitis. Government funds should be spent on research into ME in the same proportion as they are spent on MS, lupus, AIDS, or similar diseases. All we ask for is equal treatment – in provision of research funds, medical care, and social services. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">One last word – what on earth is “chronic fatigue syndrome”? “CFS” is an idea constructed by psychiatrists and insurance companies to belittle the serious illness Myalgic Encephalomyelitis in order to avoid expensive insurance payments or disability support payments. The correct name for the disease, as listed by the WHO, is Myalgic Encephalomyelitis. Fatigue is a common symptom of many illnesses – cancer, MS, AIDS, lupus, flu, and so on. It is no more a defining feature of ME than it is of MS. Unfortunately many people have been misdiagnosed with “CFS” by badly informed doctors when in reality they have other illnesses that are difficult to diagnose, such as cancer, lupus, MS, etc. For this reason it is urgent that doctors learn how to correctly diagnose ME. For more information the work by Dr Byron Hyde is particularly useful (see: http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf)</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">ME is not limited to Europe, Australasia and North America. I became ill while working in East Africa; cases have been reported in India, and there are support groups for people with ME (PWME) on Chinese social networking sites.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">If you would like to learn more, I recommend these websites: </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Nightingale Research Foundation (Dr Byron Hyde) <a href="http://www.nightingale.ca/index.php?target=home">http://www.nightingale.ca/index.php?target=home</a></div><div class="MsoNormal">The Hummingbirds’ Foundation for M.E. </div><div class="MsoNormal"><a href="http://www.hfme.org/">http://www.hfme.org/</a></div><div class="MsoNormal">ME Action UK</div><div class="MsoNormal"><a href="http://www.meactionuk.org.uk/">http://www.meactionuk.org.uk/</a></div><div class="MsoNormal">Invest in ME</div><div class="MsoNormal"><a href="http://www.investinme.org/index.htm">http://www.investinme.org/index.htm</a></div><div class="MsoNormal">Whittemore Peterson Institute for Neuro-Immune Disease</div><div class="MsoNormal"><a href="http://www.wpinstitute.org/">http://www.wpinstitute.org/</a></div><div class="MsoNormal">National Alliance for Myalgic Encephalomyelitis</div><div class="MsoNormal"><a href="http://www.name-us.org/">http://www.name-us.org/</a></div><div class="MsoNormal">The Young ME Sufferers Trust <o:p></o:p></div><div class="MsoNormal"><a href="http://www.tymestrust.org/">http://www.tymestrust.org/</a><o:p></o:p></div><div class="MsoNormal">The Grace Charity for M.E.<o:p></o:p></div><div class="MsoNormal"><a href="http://www.thegracecharityforme.org/index.asp">http://www.thegracecharityforme.org/index.asp</a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Please repost freely (without changes) and pass this message on to friends and family! </div><div class="MsoNormal"><br />
</div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com1tag:blogger.com,1999:blog-15890111.post-25779083855009445882010-03-29T02:34:00.000+11:002010-03-29T02:34:44.555+11:00<b>Sabra Zoo</b><br />
<br />
With thanks to <a href="http://velo-gubbed-legs.blogspot.com/">Nasim</a> I've just read <a href="http://www.sabrazoo.com/news/review-interview-a-common-r.html">a review of Sabra Zoo</a> which looks like a really good read and will be added to my list of books to get my hands on. Mischa Hiller, the author, also has ME, and towards the end of this interview he discusses its impact on his life. At a time when not so few well-known people with ME are keeping the fact hidden (as if they had AIDS in 1983!), I would like to thank Mischa for being open and honest about the illness.<br />
<br />
Buying a copy of Sabra Zoo? Please consider doing so via one of my Amazon links at the bottom of the page - thank you!Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-15524030463436214972010-03-20T06:24:00.000+11:002010-03-20T06:24:24.369+11:00<!--StartFragment--> <br />
<div class="MsoNormal"><span style="font-family: LucidaGrande; font-size: 11.0pt;"><b>I'd like to alert you to something serious:</b></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: LucidaGrande; font-size: 11.0pt;">The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association (APA) and is known as DSM-5. The creation of a new category called “Complex Somatic Symptom Disorder” could impact ME/CFS/FM significantly. Here's link to Mary Schweitzer's response (reposted on ME agenda). The APA will accept public comments until <b>20 April 2010</b>. <o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: LucidaGrande; font-size: 11.0pt;"><a href="http://dsm5watch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-3/">http://dsm5watch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-3/</a><o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: LucidaGrande; font-size: 11.0pt;">Here's the main page to register with DSM-5.<o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal"><span style="font-family: LucidaGrande; font-size: 11.0pt;"><a href="http://www.dsm5.org/Pages/Default.aspx">http://www.dsm5.org/Pages/Default.aspx</a><o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: LucidaGrande; font-size: 11.0pt;">And here's the page specifically for CSSM. There's a 'Register Now' link (for comments, etc.) at the bottom.<o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal"><span style="font-family: LucidaGrande; font-size: 11.0pt;"><a href="http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368">http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368</a><o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: LucidaGrande; font-size: 11.0pt;">The majority of people diagnosed with ME/CFS are women. Children are also frequently diagnosed. Mary Schweitzer's response (see above) explains it all. This will severely impact women in many different ways - women with other serious illnesses (i.e. cancer, MS, lupus, etc) are often mistakenly diagnosed with ME/CFS, and if they are then diagnosed with "CSSD" then they will never receive the medical treatment they need. This is one more way in which women are denied rights to health care and social security. It will impact women and men in many different countries, not only in the US. <o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: LucidaGrande; font-size: 11.0pt;">People with ME/CFS are frequently too unwell to fight their case - many have already given up, many are simply too unwell to use a computer. We need help from those who are well to join the fight to get this illness fully recognized - this is an infectious, communicable disease: never assume that you won't get it! (I was a fit, active, healthy professional in my early 50's when I suddenly became ill). <o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: LucidaGrande; font-size: 11.0pt;">Thank you!<o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span class="Apple-style-span" style="font-family: LucidaGrande; font-size: medium;"><span class="Apple-style-span" style="font-size: 15px;"><br />
</span></span></div><div class="MsoNormal"><br />
</div><!--EndFragment-->Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-58232942528063896492010-03-15T17:38:00.001+11:002010-03-15T17:39:55.794+11:00<b>Would you accept a blood donation from someone with ME?</b><br />
<br />
<span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family: geneva, verdana, arial, sans-serif; font-size: 11px;"><span style="font-size: medium;"></span></span><br />
<span style="font-size: medium;"></span><br />
<span style="font-size: medium;"><div align="center" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="font-family: Georgia;"><b>Letter to UK Secretary of State for Health</b></span></div></span><i><span style="color: #000055; font-family: Georgia; font-size: 14pt;"></span></i><span style="font-size: x-small;"><span style="font-family: Verdana;"><span style="background-position: 0pt 0pt;"></span><span style="background-position: 0pt 0pt;"></span><span style="background-position: 0pt 0pt;"></span><span style="background-position: 0pt 0pt;"></span></span></span><span style="font-size: x-small;"><span style="font-family: Verdana;"><span style="background-position: 0pt 0pt;"></span><span style="background-position: 0pt 0pt;"></span></span></span><span style="color: grey; font-family: Georgia; font-size: 22pt;"></span><br />
<span style="color: grey; font-family: Georgia; font-size: 22pt;"><div style="float: right;"></div><div align="center"><table border="0" id="table1" style="color: black; font: normal normal normal 11px/normal geneva, verdana, arial, sans-serif; height: 934px; width: 489px;"><tbody>
<tr><td><div align="center" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><img src="http://au.mg1.mail.yahoo.com/ya/download?mid=1%5f176%5fAMPPjkQAAB8PS51DzAiFMTnLaO8&pid=3&fid=Inbox&inline=1" /></div><div><div><span style="font-family: Verdana; font-size: small;"></span><br />
<div style="border-bottom-color: rgb(51, 102, 153); border-bottom-style: solid; border-bottom-width: 1pt; border-left-color: rgb(51, 102, 153); border-left-style: none; border-left-width: medium; border-right-color: rgb(51, 102, 153); border-right-style: none; border-right-width: medium; border-top-color: rgb(51, 102, 153); border-top-style: solid; border-top-width: 1pt; margin-left: 2.9pt; margin-right: 2.9pt; padding-bottom: 1pt; padding-left: 0cm; padding-right: 0cm; padding-top: 1pt;"><span style="font-family: Verdana; font-size: small;"></span><br />
<div align="center" class="PullquoteCharCharCharCharCharCharCharCharCharCharChar" style="margin-bottom: 3pt; margin-left: 0cm; margin-right: 0cm; margin-top: 3pt;"><span style="font-family: Verdana; font-size: small;"><b><span style="color: grey; font-family: Georgia;">Recently Mrs Ann Keen, Under-Secretary of State for Health, commented that people with Myalgic Encephalomyelitis were not able to donate blood. Invest in ME have written the following letter to the Secretary of State for Health, Mr Andy Burnham. </span></b></span></div></div><span style="font-size: x-small;"></span><br />
<div align="center"><span style="font-size: x-small;"></span><br />
<div align="center" class="PullquoteCharCharCharCharCharCharCharCharCharCharChar" style="margin-bottom: 3pt; margin-left: 0cm; margin-right: 0cm; margin-top: 3pt;"><span style="color: grey; font-family: Georgia; font-size: 22pt;"><span style="font-size: x-small;"><span style="font-size: x-small;"></span></span></span></div><div align="center" class="PullquoteCharCharCharCharCharCharCharCharCharCharChar" style="margin-bottom: 3pt; margin-left: 0cm; margin-right: 0cm; margin-top: 3pt;"><span style="font-size: x-small;"><span style="font-size: x-small;"> </span></span><span lang="EN-GB" style="color: black; font-family: Verdana; font-weight: 700;"> <span style="font-size: small;">Myalgic Encephalomyelitis and Blood Donations</span></span></div></div><span style="font-size: x-small;"><span style="font-size: x-small;"></span><span style="font-size: small;"></span></span><br />
<div class="MsoNormal" style="-webkit-background-clip: initial; -webkit-background-origin: initial; background-attachment: scroll; background-color: white; background-image: none; background-position: 0% 0%; background-repeat: repeat; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang="EN-GB" style="font-family: Verdana; font-size: 10pt;">Rt</span><span style="font-family: Verdana; font-size: 10pt;"> Hon Andy Burnham MP<br />
Secretary of State for Health<br />
Department of Health<br />
Richmond House<br />
79 Whitehall<br />
London SW1A 2NS</span></div><div class="MsoNormal" style="-webkit-background-clip: initial; -webkit-background-origin: initial; background-attachment: scroll; background-color: white; background-image: none; background-position: 0% 0%; background-repeat: repeat; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="font-size: x-small;"><span style="font-family: Verdana;">cc: Mrs Ann Keen MP</span></span></div><div align="right" class="MsoNormal" style="-webkit-background-clip: initial; -webkit-background-origin: initial; background-attachment: scroll; background-color: white; background-image: none; background-position: 0% 0%; background-repeat: repeat; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="font-family: Verdana; font-size: 10pt;">14th May 2010</span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span style="color: black;"><span style="font-size: x-small;">Dear Mr. Burnham,</span></span></div><div align="left" class="MsoNormal" style="-webkit-background-clip: initial; -webkit-background-origin: initial; background-attachment: scroll; background-color: white; background-image: none; background-position: 0% 0%; background-repeat: repeat; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Recently Mrs Ann Keen (in her capacity as Under-Secretary of State for Health) made the following comments in relation to Myalgic Encephalomyelitis and blood donations -</span></span></div><div align="left" class="MsoNormal" style="-webkit-background-clip: initial; -webkit-background-origin: initial; background-attachment: scroll; background-color: white; background-image: none; background-position: 0% 0%; background-repeat: repeat; margin-bottom: 0px; margin-left: 36pt; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">"People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered.</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 36pt; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">The reasons for this are: first, blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the causes of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure to protect the safety of the blood supply for patients."</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Mrs Keen's comments are, we assume, representative of the government and your department.</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Firstly it is good that your government recognises that people with ME are in poor health. This implies that all people with ME are therefore in need of proper healthcare provision which treats the disease properly.</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Secondly it is good that you and your government recognise, by the implication from your statement, that blood supplies may be compromised by accepting people with ME as donors due to the organic nature of this disease.</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Thirdly it follows that an embargo on people with ME donating blood would mean that there is an infectious agent at work which could be passed on via blood.</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">There follows several questions which lead on from this.</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">It seems to be crucial to use the most stringent diagnostic criteria available for diagnosing ME (which even NICE acknowledge as being the Canadian Consensus Criteria). Yet your department, NICE and the MRC do not standardise on this internationally accepted standard for diagnosis of ME.</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">When you state that people with ME are not able to donate blood are you employing the NICE guidelines for defining patients as having ME? If so then why does NICE proscribe serological testing unless there is an indicative history of infection? If no initial indication of infection is present then no further blood tests are performed and a patient may receive a diagnosis of ME based on ongoing fatigue and one other symptom such as sleep disturbance. Why then would those patients be excluded from donating blood?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">As your government officially accepts ME as a neurological illness, as described by the World Health Organisation ICD-10 G93.3 code, and as the issue of blood contamination from an infectious agent demands the utmost care and attention, is it not of absolute necessity for your government to demand that a consistent set of up-to-date diagnostic criteria are used as standard by all organisations?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Your department often states that the Medical Research Council is an independent body. Yet as it is apparent that the MRC only funds psychiatric studies which presume that ME is a behavioural illness why does your department refuse to comment on the MRC's usage of the Oxford criteria for research into ME which expressly excludes people with a neurological illness?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Why does your department not criticise the MRC for funding purely psychiatric research into ME if you fully recognise that ME is a disease of organic and infectious nature? Since when did a psychiatric illness prevent blood donations? Does this not clearly show the MRC policy of research into ME for the last generation to be completely flawed and a waste of precious funding and patients' lives?<br />
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When you state that people with ME are not able to donate until fully recovered please can you define what "fully recovered" means? </span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Could you also provide a description of how a person with ME is defined as no longer having ME?<br />
What biomedical tests are available to determine that a person with ME is "fully recovered"?<br />
Could you inform of how and when clinicians perform such tests in order to ensure that a person is "fully recovered" from ME?<br />
Bearing in mind the seriousness of a possible contamination of blood supplies from people with ME please could you indicate what measures are in place to ensure that doctors do enforce testing to ensure that people with ME are "fully recovered" and will not therefore donate blood?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">If such a test exists then presumably people with ME who are not recovered are entitled to appropriate benefits due to incapacity and/or disability?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">As relapses are common with people with ME please could you explain if there is any minimum period which a person with ME needs to be "recovered" to be able to donate blood?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Could you also provide information which your government has on the number of people with ME in this country, the proportion of patients who have had ME for longer than five years and how many people with ME have fully recovered?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">With regard to your statement that the causes of ME/CFS are not currently fully understood is it not inherent on the Chief Medical officer of the UK to attend the <b>5<sup>th</sup> Invest in ME International ME/CFS Conference 2010</b> on 24<sup>th</sup> May in Westminster, as guest of Invest in ME?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">As the foremost experts on ME in the world are presenting at the conference, along with the Whittemore-Peterson Institute who have recently been involved in the discovery of the XMRV retro-virus which has possibly huge considerations for the blood supply of this country would it not be sensible for anyone who is involved in healthcare and particularly in the treatment of people with ME to attend this event?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Should not the government of this country also be sending a representative to the conference given that contamination of the blood supply by people with ME may be occurring and that education about the disease needs to be a pre-requisite for anyone involved in healthcare provision for people with ME?</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">We would request that you provide a full and complete answer to every single one of the questions which we have asked in this letter and we look forward to your reply,</span></span></div><div align="left" class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana, sans-serif;"><span style="font-size: x-small;">Yours Sincerely,</span></span></div><div style="text-align: left;"></div><div class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span lang="EN-GB" style="color: black; font-family: Verdana; font-size: 10pt;">The Chairman and Trustees of Invest in ME</span></div><div style="text-align: left;"></div><div class="MsoNormal" style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><span style="font-family: Verdana; font-size: 10pt;">Invest in ME<br />
Registered UK Charity Nr. 1114035<br />
<span style="color: black;">PO BOX 561, Eastleigh SO50 0GQ</span></span></div><div style="text-align: left;"><span class="Apple-style-span" style="font-family: Verdana, verdana, arial, sans-serif; font-size: small;"><span class="Apple-style-span" style="font-size: 13px;"><br />
</span></span></div><div style="text-align: left;"><span class="Apple-style-span" style="font-family: Verdana, verdana, arial, sans-serif; font-size: small;"><span class="Apple-style-span" style="font-size: 13px;"><a href="http://www.investinme.org/Article-700%20SSfH%20March%202010.htm">http://www.investinme.org/Article-700%20SSfH%20March%202010.htm</a></span></span></div><div style="text-align: left;"><span class="Apple-style-span" style="font-family: Verdana, verdana, arial, sans-serif; font-size: small;"><span class="Apple-style-span" style="font-size: 13px;"><br />
</span></span></div><span style="font-family: Verdana;"><span style="font-size: x-small;"><span style="font-size: x-small;"></span></span></span></div></div></td></tr>
</tbody></table></div></span>Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-10154518416066999512010-02-26T03:56:00.000+11:002010-02-26T03:56:04.879+11:00<b>More on the MRC secret files</b><br />
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Returning to an earlier post (see January 28, this year), I have just found this discussion of the Medical Research Council's secret files: <a href="http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf">http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf</a><br />
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I would write a summary, but my brain just isn't up to it any longer. And for those who don't know me, I've completed two Master's degrees each with a research dissertation, from leading universities on each side of the Atlantic, so saying I'm not up to summarizing a short article is an indication of just how badly this illness has affected my brain.<br />
<br />
I made a request to view the "secret files" and this is the response I received:<br />
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<span class="Apple-style-span" style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 15px;">"The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this extract contains the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, it may confirm that such information includes the medical details of named individuals including how ME affects them and other matters relating to their condition. As such it would be considered unfair to these named parties were this material to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully."</span><br />
<span class="Apple-style-span" style="font-family: arial, sans-serif; font-size: medium;"><span class="Apple-style-span" style="border-collapse: collapse; font-size: 15px;"><br />
</span></span><br />
<span class="Apple-style-span" style="font-family: arial, sans-serif; font-size: medium;"><span class="Apple-style-span" style="border-collapse: collapse; font-size: 15px;"><span class="Apple-style-span" style="border-collapse: separate; font-family: Times; font-size: medium;">Of course I don't believe that this is the real reason for one minute! It doesn't seem to have occurred to these gate-keepers that they could easily either a) black out the names of the individuals, or b) ask the individuals if they mind their names being made public (I've yet to hear of anyone with ME keeping their identity secret). Of course, as the article above notes, such care about hiding identities is not taken with other documents, so why with these?</span></span></span><br />
<span class="Apple-style-span" style="font-family: Times, sans-serif;"><br />
</span>Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com0tag:blogger.com,1999:blog-15890111.post-19887619448716564342010-02-23T20:35:00.000+11:002010-02-23T20:35:10.185+11:00<b>Professor Malcolm Hooper takes on the Establishment!</b><br />
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Professor Malcolm Hooper is one of a very small number of the fully-abled willing to take on the establishment in the UK with regards to ME.<br />
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Here's the letter he wrote to Sir Michael Rawlins: <a href="http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm">http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm</a> (Rawlins is chairman of the National Institute of Health & Clinical Excellence NICE in the UK)<br />
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Here's the formal complaint he sent to Lord Drayson, minister of state with responsibility for the Medical Research Council: <a href="http://www.meactionuk.org.uk/magical-medicine.htm">http://www.meactionuk.org.uk/magical-medicine.htm</a><br />
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Here's his report on ME: <a href="http://www.meactionuk.org.uk/magical-medicine.pdf">http://www.meactionuk.org.uk/magical-medicine.pdf </a> Read this if you would like to understand what all the fuss is about!<br />
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This report will serve as a reference tool for doctors and people with ME for years to come. Thank you, Professor Hooper, for all you've done.Nicky Reisshttp://www.blogger.com/profile/07409857304770649251noreply@blogger.com1