ANNOUNCEMENT: INTRODUCING 'THE JOURNEY' TO QUEST
by Lydia Neilson
Dear Friends:
I am pleased to advise that, commencing in this issue, there will be an added section to QUEST entitled The Journey, in recognition of those facing the daily struggles of ME/CFS and FM and its many challenges. We believe this section will be of interest to those interested in treatment options and support matters.
James (Jim) Deagle has joined our team as Editor-in-Chief of The Journey. Jim has worked in several news media and communications positions. Starting out as a reporter and editor for various community newspapers, he went on to lend his written communications skills to several Ottawa-area high tech firms, as well as the Standards Council of Canada and the 50th anniversary edition of the Canadian Tulip Festival.
Jim is the contact person for ideas and articles for The Journey and is a welcome volunteer with a fresh perspective.
Send all submissions, including articles, pictures and letters to the Editor to:
mefm.jamesdeagle(a)yahoo.com
Lydia
HIGHLIGHTS OF 'QUEST' WINTER 2010 NO. 86
· Introducing The Journey
· Ottawa 2011 IACFS/ME Conference – Call For Papers
· Registration for Conference
· XMRV – Where Do We Stand?
· Addition to Medical Advisors
· Fibromyalgia: Is It Real?
· New Device May Separate Human DNA from Virus DNA
· Bond Symposium – Australia
· Soya Kefir – Implications for ME/CFS and FM – Update
· News Snippets
· Conference 2011 Update
· Newsletters/Conferences/Books/Reports
· Resources
Issue No. 1
Winter 2010
The Journey
· Should You Get the Flu Shot?
· Bringing ME Awareness to City Hall
· On funding discrepancies and tongue-tied editors
· U.S. study: tai chi may ease fibromyalgia symptoms
· PEI Health and Wellness Minister sales FM/CFS Awareness Day
· ME/CFS and FMS Awareness Day, people, events and activities of May 12, 2010
· Health research funding not equitably distributed
· ‘Lightning Process’ boasts 3-day cure for ME/CFS
· ME Society of Edmonton presents 2010 Florence Nightingale Award
PUBLICATION DATE; WEEK OF FEBRUARY 7, 2011
PLEASE NOTE: QUEST IS THE NATIONAL ME/FM ACTION NETWORK NEWSLETTER, PUBLISHED QUARTERLY AND INCLUDED WITH ANNUAL MEMBERSHIP FEE.
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 3 months
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Pathology of ME/CFS - Pilot study of four autopsy cases (addition)
by Lydia Neilson
> From: Charles Shepherd <charles.c.shepherd(a)BTINTERNET.COM>
> Date: January 9, 2011 9:09:06 AM EST
>
> Reply-To: Charles Shepherd <charles.c.shepherd(a)BTINTERNET.COM>
>
> Pathology of Chronic Fatigue Pilot Study of Four Autopsy CasesPlease could you add the full text of conference presentation abstract to my original posting as some people are having difficulty in finding it on the MEA website.
>
> Thanks
>
> CS
>
>
> Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases
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>
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> DG O'Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
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> 1Addenbrooke's Hospital Cambridge UK
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> 2Queen's Hospital Romford Essex UK
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> 3Royal Devon & Exeter Hospitals UK
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> 4Honorary Medical Advisor to ME Association UK
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>
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> Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.
>
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> We report the post mortem pathology of four cases of CFS diagnosed by specialists.
>
> The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.
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> Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.
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> The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.
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> One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
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> One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.
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> This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.
>
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> Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.
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> The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren's disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.
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> Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.
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> A specific CFS / ME brain and tissue bank in the UK is proposed.
>
> ---------------------------------------------
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> ---------------------------------------------
> Co-Cure's purpose is to provide information from across the spectrum of
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> importance to the issues of our community.
> ---------------------------------------------
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
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