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Chronic Fatigue Syndrome/Myalgic # 13 – October 2015 1. Colofon / Personalia Scientific reviews: Richard Podell Advisory board: Leonard A. Jason Cartoons: Djanko Editor/Editorial team: David Egan, Eddy Keuninckx, Rob Wijbenga Textual contributions for the December-issue: Prof. Alan Light John Allsop Annet Lindhout Prof. Leonard Jason Bente Stenfalk Lieke Kops Brenda Vreeswijk Lisa Forstenius Dr. Byron Hyde Maartje Slot Carin Widholm Merry S. CJ Arlotta Michael Evison David Egan Dr. Neil Abbott Eddy Keuninckx P.E. Griffith Erica Verrillo Rebecca Hansen Faith Wong Dr. Richard Podell Greg & Linda Crowhurst Rob Wijbenga Helle Rasmussen Rosemary Underhill Jeannette Burmeister Ryan Prior Jerrold Spinhirne Sally K. Burch Jeryldine Saville Scott Jordan Harris Jo Best Staffan Christensen Joan McParland Distribution: Eddy Keuninckx Layout: Eddy Keuninckx Archive: http://let-me.be (here you can download all magazines for free) Facebook: https://www.facebook.com/groups/TheMEGlobalChronicle/ The editorial team doesn't accept any responsibility for any possible incorrect information that it has been supplied with and which has been published in this monthly issue. Anyone can subscribe to this free magazine by sending their email address to: [email protected] You can un-subscribe by sending a mail to: [email protected] Textual contributions for the October issue need to be supplied in Word by 10st December and sent to: [email protected] The next issue will come out on December 20nd,2015. Subscribe to this newsletter We are no association or society, just a bunch of idealists who want to give our best efforts towards recognition of this terrible disease. By trying to help connecting to each other all patients all over the world. Anyone who expresses the wish to receive the Newsletter will be added to the list: that's the only formality and thing to be done. [email protected] – Visit our website to subscribe to this newsletter or to download previous http://let-me.be – Contact us at [email protected] Picture front page: Greg & Linda Crowhurst, Eddy Keuninckx Erratum: in the ME Global Chronicle 12 we erroneously attributed the article Showing the Back of their Heads (observations on the P2P report) to Erica Verrillo. She informed us that all credits go to Jennie Spotila instead, who wrote it and posted it on her blog Occupy CFS. Our apologies to both Jennie and Erica, and thanks to the last one for bringing it to our notice 2 Back to Table Of Contents 2. Table Of Contents 1. COLOFON / PERSONALIA ___________________________________ 2 2. TABLE OF CONTENTS ______________________________________ 3 3. INTRODUCTION ___________________________________________ 5 4. PREFACE ________________________________________________ 6 5. GRASSROOT _____________________________________________ 9 CARTOON DJANKO ____________________________________________ 10 FORGOTTEN PLAGUE __________________________________________ 11 QUOTES . _______________________________________________ 13 PATIENTS BATTLE FOR JUSTICE _________________________________ 14 AN OPEN LETTER FROM RESEARCHERS TO SENATOR MIKULSKI_________ 17 BECAUSE IT’S TIME WE BECAME THE STRENGTH OF OUR TRUE NUMBERS. 21 DID DARWIN HAVE ME? ________________________________________ 22 IN MEMORIAM: LILI ___________________________________________ 24 IN MEMORIAM: INGEBORG GEUIJEN ______________________________ 25 IN MEMORIAM: DR. A. M. LERNER ________________________________ 27 CANARY IN A COALMINE _______________________________________ 28 THIS IS HOW IT IS.... _________________________________________ 29 MIKE’S EU MARATHONS: RAISING MYALGIC ENCEPHALOMYELITIS AWARENESS ACROSS EUROPE ___________________________________ 30 SWEPT INTO SOME DARK CORNER LABELLED "BEYOND HELP" __________ 32 HOLDING HHS ACCOUNTABLE FOR UNRELENTING AND UNREPENTANT LEGAL VIOLATIONS _________________________________________________ 33 DUTCH CITIZENS INITIATIVE ‘RECOGNIZE ME AS A BIOMEDICAL DISEASE’ 36 THE NEW US OFFICIAL DIAGNOSTIC CODES ________________________ 38 NEW DEVELOPMENTS IN MEDICAL DIAGNOSTICS AND TREATMENTS ____ 40 KARINA HANSEN – 3RD BIRTHDAY IN HOSTAGE OF THE DANISH PSYCHIATRIC SYSTEM . ________________________________________________ 43 6. SCIENCE _______________________________________________ 45 RICH’ REVIEWS: MELATONIN HELPS FIBROMYALGIA PAIN: A DOUBLE-BLIND STUDY . _________________________________________________ 46 STOPPING CANDIDA IN ITS TRACKS ______________________________ 50 SCIENCE TO PATIENTS_________________________________________ 52 PROF. ALAN LIGHT ANSWERS ___________________________________ 53 INTERVIEW WITH DR. LUCINDA BATEMAN _________________________ 56 THE DEFINITION & HISTORY OF MYALGIC ENCEPHALOMYELITIS (M.E.)___ 58 I. PATHOPHYSIOLOGY IN ME: ORTHOSTATIC INTOLERANCE ___________ 59 II. BLOOD VOLUME IN ME ______________________________________ 63 7. RESEARCH ______________________________________________ 68 MADY HORNIG ON THE “PETERSON SUBSETS”, IMMUNE EXHAUSTION AND NEW GUT FINDINGS IN ME/CFS__________________________________ 69 RADICAL RESEARCH ___________________________________________ 73 AUSTRALIAN UNIVERSITY’S LONGITUDINAL STUDY INTO IMMUNE CHANGES IN PATIENTS WITH CFS/ME MAY LEAD TO DIAGNOSTIC TEST __________ 75 3 Back to Table Of Contents NEUROLOGICAL BIOMARKERS IN PAEDIATRIC ME/CFS ________________ 76 ROYAL FREE DISEASE, SIXTY YEARS ON ___________________________ 78 LONGITUDINAL ANALYSIS OF IMMUNE ABNORMALITIES IN VARYING SEVERITIES OF CHRONIC FATIGUE SYNDROME/MYALGIC ENCEPHALOMYELITIS PATIENTS _________________________________ 81 CHRONIC FATIGUE SYNDROME/MYALGIC ENCEPHALOMYELITIS (CFS/ME): CHARACTERISTICS OF RESPONDERS TO RINTATOLIMOD ______________ 83 8. EVENTS ________________________________________________ 85 RESEARCH INTO ME - PUBLIC LECTURE IN NORWICH RESEARCH PARK WITH DR MADY HORNIG ____________________________________________ 86 1ST INTERNATIONAL ME CONGRESS OF THE NETHERLANDS ___________ 87 SWEDISCH NATIONAL SOCIETY FOR ME ___________________________ 90 IMEC 11 . _________________________________________________ 91 RESEARCH GIVES HOPE TO THE MANY ME-AFFECTED_________________ 92 9. ME AND CHILDREN _______________________________________ 93 ME-PAEDIATRICS IN PRACTICE __________________________________ 94 THE ‘RIGHTS’ AND WRONGS IN KARINA HANSEN’S CASE ______________ 95 10. SEVERE ME _____________________________________________ 98 ME IS OFTEN DISMISSED_______________________________________ 99 MERRY S. - HUMANS OF ME/CFS ________________________________ 101 HELP KARINA – DONATE TO SAVE4CHILDREN ______________________ 102 11. NEWS FROM ___________________________________________ 104 AUSTRALIA . ______________________________________________ 105 BELGIUM . ______________________________________________ 107 CANADA . ______________________________________________ 108 EUROPE ._________________________________________________ 109 NORTHEN IRELAND __________________________________________ 111 IRELAND . ______________________________________________ 113 SWEDEN . _______________________________________________ 114 THE NETHERLANDS __________________________________________ 115 UNITED KINGDOM ___________________________________________ 117 12. VOTE FOR… ____________________________________________ 119 13. MAJOR FUNDRAISING ____________________________________ 123 14. WORTH NOTICING, WATCHING, HEARING & READING __________ 129 15. POEM – HALF ALIVE _____________________________________ 133 16. COLUMN – DO YOU STILL MANAGE? _________________________ 134 17. CONNECTING YOU TO M.E. ________________________________ 136 We as editors tried to make the magazine much more accessible by adding a link to each article as included in the Table of Contents, which gives you direct access to the article itself. Any suggestion is most welcome. 4 Back to Table Of Contents 3. Introduction Dear readers, This will be a very short introduction of the 13th issue of the ME Global Chronicle. Again we lost several friends who died this period of the consequences and complications of ME. There must be certainly more who parted from us, but we’re including an In Memoriam of two patients whom we heard of. The urgency of finding clues of and treatments for this terrible plague should penetrate the hearts of all researchers, politicians, insurance-companies, healthcare workers, in short everyone who has to do with persons suffering from this disease, directly or indirectly. Researchers and clinicians caring for PWME would do justice to the community to contemplate at least a few minutes a day the devastating effects ME has on its sufferers, and the unimaginable and indescribable suffering many of them are going through, not just a fortnight or a month, but the rest of their lives, until death takes pity on them. The decades of neglect are taking their toll. Enough with words: this beautiful and impressive short documentary produced by two Swedish patients to introduce the ME-conferences in Stockholm and Göteborg at the end of this month speaks for itself, and on behalf of the entire community: https://youtu.be/BoVvJzmmVWg Take good care of yourselves and the ones you love. Next issue will be published about the 20th December, its deadline being the 10th December 2015. Contributions, preferably in Word, can be mailed to [email protected]. However if you think something’s important enough to bring to all our attention, it can be submitted earlier through www.facebook.com/groups/TheMEGlobalChronicle/ or the mentioned email- address The editors 5 Back to Table Of Contents 4. Preface We are happy to submit the October issue of the ME Global Chronicle to
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