1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

Australian CFS/ME History and Events

Discussion in 'Patient Data Repository & Treatment Review Project' started by taniaaust1, Aug 14, 2010.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    ME/CFS Diagnostic Criteria in Australia

    "Chronic fatigue syndrome - Clinical practice guidlines 1997" produced by a Working Group convened under the auspices of The Royal Australasian College of Clinicians http://www.tnq-support-group.net/cfs_australian_2002-guidelines-overview.html(html) http://www.myalgic-encephalomyelitis.com/cfs_australian_2002-guidelines-overview.html(html) pdf links on either site.

    "Chronic fatigue syndrome - Clinical practice guidlines 2002" produced by a Working Group convened under the auspices of The Royal Australasian College of Clinicians http://www.mja.com.au/public/guides/cfs/cfs2.html(html) http://www.mja.com.au/public/guides/cfs/cfs2.pdf(pdf)

    The ME/CFS guidelines, Management Guidelines for General Practioners (sponsored by the Sth Aust government and others) 2004 http://www.oiresource.com/pdf/mecfs.pdf These guidelines recommend the 2003 Canadian Clinical Criteria.

    From 2005 the "Overview of a Clinical Case Definition and Guidelines for Medical Practioners, An Overview of the Canadian Consensus Document"
    Authored by Bruce M. Carruthers and Marjorie I. van de Sande, came into use (Sth Australia). The inside of the front cover page of the booklet (capitals and all) states:

    Australian ME/CFS Epidemics

    1949-1951 800 (another source said 600) people in Adelaide (Goolwa?? outbreak or was this separate outbreak of the 1950s?), Sth Australia, became ill with what was known as Epidemic Neuromyasthenia (For more info on this outbreak see "Australian ME/CFS Research" section. Pellew RAA investigated)
    1955 Perth, Western Australia. Described as "virus epidemic in recurrent waves"
    1957 Brighton, Sth Australia. Outbreak described as "Coxsackie, Echo Virus meningitis and mylagic encephalomyelitis", "Epidemic myalgic encephalomyelitis," and "Benign myalgic encephalomyelitis."


    ME/CFS in Parliament

    On XMRV testing and medicare http://parlinfo.aph.gov.au/parlInfo...;query=xmrv;querytype=;rec=2;resCount=Default


    ME/CFS Funding and Government ME/CFS funding

    Since 1998 Alison Hunter Memorial Foundation has made quite an impact to the ME/CFS situation in Australia and has helped fund ME/CFS studies, along with holding some very large ME/CFS gatherings where well known ME experts have been brought to help educate our doctors and talk to the ME/CFS community. The goal of this independant organisation is to "to advance scientific knowledge and medical care." http://www.ahmf.org/aboutus.html

    The Judith Jane Mason and Harold Stannett Williams Memorial Foundation (Established in 2003, funds Aust. ME/CFS and Alzheimers research studies..60% of the money goes towards the ME/CFS research) http://docs.google.com/viewer?a=v&q...NGyRVK&sig=AHIEtbSoSAuyM8RB2CUWXFEY--j_ILxIBw

    In 2004 the ME/CFS Society of Sth Australia, set up a research fund for ME/CFS research which was going towards funding the Adelaide Chronic Fatigue Syndrome Research Group.. a group of ME/CFS experts who are also in practice. (Im doubtful that research fund now exists? as funding for the 2011 study of this group was funded by John T. Reid Charitable Trusts, supported by the Alison Hunter Memorial Foundation).


    Australian ME/CFS Research

    "Clinical Description of a disease resembling poliomyelitis seen in Adelaide", (Pellew RAA) 1949-1951, Med J Australia, 1, 944
    Epidemic Neuromyasthenia (ENM) "Further investigations on a disease resembling poliomyelitis in Australia" (1955), Adelaide, Pellew RAA, Miles JAR, Med J Aust. http://www.investinme.org/InfoCentre Epidemics.htm http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425322/pdf/postmedj00263-0008.pdf
    Double-blind, placebo-controlled trial of intravenous immunoglobulin therapy (1990) http://www.amjmed.com/article/0002-9343(90)90173-B/abstract
    Intravenous immunoglobulin (1997) www.amjmed.com/article/S0002-9343(97)90045-0/abstract
    Cell-mediated Immunity (1992) Division of Psychiatry, Prince Henry Hospital, NSW http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554231/pdf/clinexpimmunol00051-0078.pdf
    Cytokine Production response to exercise (1994) Depart. of Infectious Diseases, Prince Henry Hospital, NSW http://cid.oxfordjournals.org/content/18/Supplement_1/S142.abstract
    Longitudinal study of outcome of CFS (1994) http://www.bmj.com/content/308/6931/756.full?sid=23f733bb-f6e6-4990-bc1e-d48e2bb46919
    Lactic acid (1995) The Adelaide CFS Research Group, Adelaide University, http://sacfs.asn.au/medical/adelaide_uni_research_1.htm
    Maximal Oxygen uptake and lactate mechansim are normal (2002) Dept. of Physiology, University of Adelaide http://digital.library.adelaide.edu...mode=full&submit_simple=Show full item record
    Lactate Threshold during exercise (2004) University of Adelaide http://sacfs.asn.au/medical/adelaide_uni_research_2.htm
    Molecular basis to CFS (1996) http://www.sciencedirect.com/scienc...d270a7463d1014127b2dc1e15cc6a22d&jchunk=57#57 http://www.orient-explorer.com/auiac/Prof Tim Roberts.pdf
    Symptom expression & Urinary Metabolites (1996) Uni of Sydney, Uni of Newcastle, John Hunter Hosp http://www.sciencedirect.com/scienc...7361dc68f4568aac86729947fccdcf17&searchtype=a
    Cognitive deficits (1997) Inflammation Research Unit, School of Pathology, University of New South Wales http://bjp.rcpsych.org/cgi/content/...na&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
    Cognitive functioning in CFS a meta analyses (2010) University of Adelaide, http://digital.library.adelaide.edu.au/dspace/handle/2440/61121
    Changes in plasma lipid homeostasis (1999) Uni of Newcastle, Uni of Sydney, John Hunter Hosp. http://cat.inist.fr/?aModele=afficheN&cpsidt=1220520
    Plasma fatty acids and sterols in sudden and gradual-onset CFS (2000), Uni of Newcastle http://www.deepdyve.com/lp/taylor-f...-and-sterols-in-sudden-and-gradual-lTmpQYGIgC
    Dev. of lab-based tests in chronic pain & fatigue, Essential fatty acids & cholesterol, JOURNAL OF CFS, 7, NO. 2 59-62 (2000) Uni of Newcastle
    Biochemical & Microbiological Abnormalities: The Dev of lab based tests and possible role of toxic chemicals (1999) Uni of Newcastle http://informahealthcare.com/doi/ab...onic+fatigue+syndrome%27%29&searchHistoryKey=
    Biochemistry of Chronic Pain and Fatigue (2000) University of Newcastle, Nth Shore Hosp, Westmead Hosp. http://www.co-cure.org/infor20.htm
    Erythrocyte morphology in rheumatoid arthritis & CFS, JOURNAL OF CHRONIC FATIGUE SYNDROME, 6, NO. 1 23-35 (2000)
    Blood parameters indicative of Oxidative Stress associated with symptom expression of CFS (2000) University of Newcastle http://www.ingentaconnect.com/content/maney/rer/2000/00000005/00000001/art00009
    Association between oxidative damage markers & temporomandibular dysfunction symptoms in CFS (2004) University of Newcastle http://ogma.newcastle.edu.au:8080/vital/access/manager/Repository/uon:1520
    Free radicals in CFS: cause or effect? (2000) University of Newcastle http://www.ncbi.nlm.nih.gov/pubmed/10939298
    Erythrocyte Oxidative Damage (2006) Charles Sturt University, NSW http://www.cfids-cab.org/cfs-inform/Hypotheses/richards.etal07.pdf
    Moclobemide trial (2000) Uni of NSW, St George Hosp & Royal North Shore Hosp www.psychiatrist.com/abstracts/abstracts.asp?abstract=200009/090003.htm
    Development of laboratory-based tests in chronic pain & fatigue. 1. Muscle catabolism and coagulase negative staphylococci which produce membrane damaging toxins, JOURNAL OF CHRONIC FATIGUE SYNDROME, 7, NO. 2 53-57 (2000)
    Coagulase-negative staphylococcus toxins are associated with temporomandibular disorder in CFS (2004) University of Newcastle http://ogma.newcastle.edu.au:8080/vital/access/manager/Repository/uon:1519?query=CFS
    Personality in development & perpetuation of CFS (2000) Qld Uni of Tech www.unboundmedicine.com/medline/eb...and_perpetuation_of_chronic_fatigue_syndrome_
    Definition-based Analyses of Symptoms (2001) VUB, Belgium & University of Newcastle http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2796.2001.00890.x/full
    CFS sufferers with SSIS have distinct metabolic profile (2001) University of Newcastle http://www.me-cvs.nl/index.php?pageid=4610&printlink=true&highlight=fatigue
    Potassium (total body), Royal Adelaide Hospital and University of Adelaide (2001) http://nuclmed.web.auth.gr/magazine/eng/may01/origpaper2.htm http://sacfs.asn.au/medical/adelaide_uni_research_3.htm
    Rickettsiae, John Graham, Flinders University, Sth Australia http://sacfs.asn.au/medical/adelaide_research.htm
    Test-Retest Reliability of the Aerobic Power Index Test (2003) University of Western Australia http://www.cfids-cab.org/cfs-inform/Exercise/wallman.et.al.04.txt
    Graded Exercise (2004) University of Western Australia www.mja.com.au/public/issues/180_09_030504/wal10613_fm.html www.abc.net.au/rn/talks/8.30/helthrpt/stories/s1103322.htm
    Physiological Responses during submaximal cycle test (2004) University of Western Australia http://journals.lww.com/acsm-msse/A...al_Responses_during_a_Submaximal_Cycle.4.aspx
    Submaximal exercise variables predict peak exercise performance in CFS? Uni of WA (2007) www.sciencedirect.com/science?_ob=A...8986c6a28ce8423c65ecaa10295e513f&searchtype=a
    Association between CFS and the Corticosteroid-binding globulin gene ALA SER224 polymorphism (2004) University of Adelaide http://digital.library.adelaide.edu.au/dspace/handle/2440/55095
    Post-infective and cfs precipitated by viral and non viral pathogens, EBV, Ross River Virus, Q fever (2006 Dubbo studies) http://www.bmj.com/content/333/7568/575.full?sid=a01109c6-3eb2-4786-a95c-7ca9dc13316e http://www.bmj.com/content/333/7568/0.3.full?sid=e37c825c-6c70-4b40-92aa-4e023aeab496
    Long term persistance of Q fever (2010) Aust Rickettsial Reference Lab http://www.ncbi.nlm.nih.gov/pubmed/20639288
    Hematologic and urinary Excretion Anomalies (2007) University of Newcastle http://ebm.rsmjournals.com/cgi/content/full/232/8/1041
    Bacterial Colonosis (2007) Institute of Biotech and Molecular Science, Uni of Melb. http://www.ahmf.org/07access/07butt_final.htm
    Icreased d-lactic Acid Intestinal Bacteria (2009) Institute of Biotechnology and Molecular Science www.ncbi.nlm.nih.gov/pubmed/19567398
    Sleep-Wake Behaviour in CFS (2010/2011) University of NSW http://www.journalsleep.org/ViewAbstract.aspx?pid=28135
    Long-chain acylcarnitine deficiency (2011) University of SA http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2010.02341.x/abstract
    MRI study, brain stem dysfunction and altered homeostatis (2011) Adelaide CFS research group http://onlinelibrary.wiley.com/doi/10.1002/nbm.1692/abstract

    Australian Studies in Progress

    The Role of Lewis Phenotype and ABH Secretor Status in Relation to Nasal Carriage of Staphylococcal Species in Patients with CFS (started 2010, 1 year study) http://www.newcastle.edu.au/research/expertise/135166.html
    Development of a new clinical diagnostic/bioassay for chronic fatigue syndrome (started 2009, 3 year study) http://www.newcastle.edu.au/research/expertise/135166.html
    The Importance of Small Colony Variants (SCV's) of toxin producing Coagulase-negative Staphylococci in CFS (started 2006, 4 year study) http://www.newcastle.edu.au/research/expertise/135166.html


    Australian ME/CFS Reported Deaths

    19 yr old Alison Hunter of Sydney died 1996. "In the end, heart damage, massive ulceration to her throat, failure of her gut and bowel and horrendous neurological symptoms, conspired to defeat her." [1] www.ahmf.org/smh040502.html
    * Alison gave a speech in Ireland at the International Meeting on CFS when she was 17. www.ahmf.org/speech.html.

    Tracey Lee Ash, 26 from Adelaide, died on March 7, 2002 from CFIDS/ME related causes. "Tracey battled with CFIDS/ME/FMS and multiple chemical sensitivities for many years. Tracey constantly searched for new possibilities of getting well, but in the end wellness became a faded and unreachable distant light." [2] http://sacfs.asn.au/publications/talking_point/2002/issue_1/tracey_ash.htm


    ME/CFS and the Law

    Queensland mother fights to get daughter back (1999) www.abc.net.au/7.30/stories/s21850.htm


    Current Australian ME/CFS Events

    Australian National Radio ABC

    Pace Trial. Comparison of Treatments for CFS
    Guest speakers
    Professor Michael Sharpe
    Professor of Psychological Medicine,
    University of Edinburgh,
    Scotland

    Richard Horton
    Editor in Chief of the medical journal
    The Lancet,
    London
    http://www.abc.net.au/rn/healthreport/stories/2011/3192571.htm


    References

    [1] www.ahmf.org/smh040502.html
    [2] www.blueribboncampaignforme.org/ME_CFS_Memorial.html
     
  2. Melodie

    Melodie Guest

    Tania I may have put up Tracey's link once too many but it can be deleted if need be.
     
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    Wow thanks :) .. that's heaps better. Glad someone can sort it out... that really had me confused.

    The double link was exactly the same one wasnt it??? I got rid of the double one accidently before checking. The words "distant light" were being highlighted.

    Its looking great now..but if that was a different link and better then what we have.. please let me know.

    I think this page is going to end up looking great if we all keep chipping into it.
     
  4. Melodie

    Melodie Guest

    Tania I just came back on line. I wanted to tell you that i made a rather large error! I will be back in a sec. By the way I am not sure if I put the right link in. I havent even had a chance to read the article. you know you can undo the changes I made.
     
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    ohh lol.. we may be both working on the same page at once.. so when we look.. it may be completely different lol.

    The link was actually in wrong place.. it was attached to the words "distant light" rather then the actual reference number, to link the quote i'd copied, to its reference at the bottom of the page. (i didnt thou see if you were trying to use the right link or not).

    Actually i had no idea that wikipedia numbers of reference. actually were links. i just went to the real wikipedia to check out if that is so and if that was what you'd been trying to do. Once i saw they are.. it confirmed to me what i'd thought you were trying to do.

    i think i learn something new every day when i try to use our wiki here.
     
  6. Melodie

    Melodie Guest

    The way I put the link in: First I clicked on the link you had inserted, I copied the URL from that page, went back to the wiki and put it where I thought you meant for it to go. So if it is different I can't tell because I dont know what it looked like to start with. I just went to the page you linked.
     
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    i'd just moved about the stuff on Alison hunter.. the order of the sentences.. as i'd mentioned it her death.. then gone on about her lecturing on CFS.. then after that went back to how she died. So now the flow of things there is better and in a better order
     
  8. Melodie

    Melodie Guest

    So now the bad thing I did:eek: I was trying to make them pages in a book. I looked up vaultwiki. I should have played in the sandbox but didnt think to do that. I made by mistake the contact list the title of the index page for the book which should have some aussie name but now says Aus advocacy contact list instead.

    I cant change it and if I cant find out how to in vaultwiki tomorrow then do you think we can make new pages with the right titles and put as chapters in new book and then delet the old ones? Cutting and pasting should work to make complete new pages, yeh? I gotta go to bed so this prob made no sense. Sorry for the mess.
     
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    i know that you did manage to create a working link, congrats.. i still need to get my head about doing things in that way...

    i assume you had the right one if you were trying to match the [2] reference quote .. to the [2] reference under the reference list. For some reason thou, it had linked up onto the wrong thing... it was linked to two words in the text before the [2] rather then just to the [2] .

    i dont know if you want to give it another go and see if you can get it to link to just the two (so a couple of words in the actual text isnt appearig as links) or if you want to just leave it for now and i'll try to work it out by your instructions when my head is up to more brain work.
     
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    LMAO.. yeah i did notice that.. but i didnt have the heart to point out to you that it was kind of messed up. Thought we could fix it up at a later date.. Right now i have not a clue on how to work that either.. but we will work it out at some point :)

    Maybe we could call the book ME/CFS Australia or something (umm or maybe not as it would then sound like the Australian ME/CFS Association), when we work it out.

    * Note.. my last big boo boo with the CFS/ME Organisation page with two different pages is still there :p
     
  11. Melodie

    Melodie Guest

    Looks like you fixed taking link from behind the two words. I just thought thats where you asked me to put (I didnt think why)! lol
    With the reference numbers the number one doesnt have a link on it either. I can try do it another time. How urgent do you think it is fixing the book mess. (if alter paper hasnt come out yet by tomorrow that is) Gotta go now :)
     
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    Nothing is urgent .. other then people wondering why the book is called that :p , i cant see how it would cause any issues.
     
  13. Melodie

    Melodie Guest

    Tania and all, I put Monday's ABC radio interview announcement up under Current ME/CFS Events. Thanks to Alison.

    "ME/CFS Australia (Victoria) is pleased to announce that we have secured a
    national radio interview on the topic 'Exploring ME/CFS'
    Those interviewed will include Mr Simon Molesworth QC President of ME/CFS
    Australia, Dr Donald Lewis (CFS Discovery) and Dr Nicole Phillips
    (psychiatrist)

    Aug 23 Mon 10-11 pm Eastern standard time, Australia

    Radio ABC Tony Delroy Nightlife http://www.abc.net.au/nightlife/ "


    To find ABC LOCAL RADIO frequency (Sorry I edited this because its not radio national) go to

    http://www.abc.net.au/reception/freq/

    and put in your postcode.
     
  14. Melodie

    Melodie Guest

    I put up Dr Byron Hyde's upcoming vistit on the 18th Sept in Melbourne under upcoming events.

    I added this info about Dr Byron Hyde's planned visits to other locations from facebook:

    Australian Capital Territory: 1st week i...n September
    (http://www.mecfscanberra.org.au/)

    New South Wales: 7th & 8th September (http://www.me-cfs.org.au/)

    Western Australia: 9th - 12th September (http://www.mecfswa.org.au/)

    Tasmania: 15th & 16th September (http://www.mecfs-vic.org.au/)

    Victoria: 17th & 18th September (http://www.mecfs-vic.org.au/)


    Times and venues will be posted as soon as they are confirmed. Please
    contact the ME/CFS organisation in your Australian state or territory for
    updates and more information.
     
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    :) @ Melodie .. glad info is there.

    Would you mind if i shorten the info you put down? Im thinking of those who have trouble with reading.. its added a lot of extra to page and probably could be summarised a lot with link to the site with the info.
     
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    eg.. To have shorter summary of there original spill, i'd take out "ME/CFS Australia (Victoria) is pleased to announce that we have secured a" and "Those interviewed"

    so the start would end up reading "National radio interview on the topic 'Exploring ME/CFS includes Mr Simon Molesworth QC President of ME/CFS
    Australia, Dr Donald Lewis (CFS Discovery) and Dr Nicole Phillips
    (psychiatrist) "

    and shorten info on Dr Bryon Hides talks, the date stuff to 1st-18th Sept being held in various Aust. States (and then put in the face book link so people could look up the exact where's and whens if interested).

    Would you mind me shortening it but so people are still able to access all the details they need from the page?

    I need to learn how to link words like you do, you seem to have the hang of it :) .. i havent been game to try that yet
     
  17. Melodie

    Melodie Guest

    [QUOTE=taniaaust1;113701]eg.. To have shorter summary of there original spill, i'd take out "ME/CFS Australia (Victoria) is pleased to announce that we have secured a" and "Those interviewed"

    so the start would end up reading "National radio interview on the topic 'Exploring ME/CFS includes Mr Simon Molesworth QC President of ME/CFS
    Australia, Dr Donald Lewis (CFS Discovery) and Dr Nicole Phillips
    (psychiatrist) "

    and shorten info on Dr Bryon Hides talks, the date stuff to 1st-18th Sept being held in various Aust. States (and then put in the face book link so people could look up the exact where's and whens if interested).

    Would you mind me shortening it but so people are still able to access all the details they need from the page?

    I need to learn how to link words like you do, you seem to have the hang of it :) .. i havent been game to try that yet[/QUOTE]
    The top part that I bolded sure. Canyou just remove the spaces between the lines of the other states, cos this is a pretty big thing that Aussies would want to know about.Then see how it looks, if we can reduce the bottom lines.

    To link a word to a URL, highlight the word, then click on the "link" icon above (it is next to the "align to right margin" icon) it is a picture of a globe with chain links at the bottom. the window opens where you past the URL (that you already copied from the site).
     
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    thanks.. :)
    .........

    im feeling a little down tonight (close to taers).. as im finding it hard just to get a sentence together without putting in completely wrong words. im so wanting to work on wiki but keep on finding myself here.. just staring at computer as its beening so hard on my brain.
     
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    im just sticking that here for the time being.. i want to add it to a time line for groundbreaking CFS/ME events in Australia. This GP divison partnering with ME society for the first time to help bring more education to our doctors over here. i think is special event.
     
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    Putting that other page here as im playing about (trying to get rid of the double pages of it which are connected together and worried i may loose the thing... so here it safety sits in case it decides to do vanishing act!

    "Organisations

    Organisations and support groups can be invaluable for those with CFS as well to those who still are seeking an official diagnoses. CDC research has put the number that remain undiagnosed in America at 80% [1]. This is due in part that many doctors are still reluctant to give diagnoses due to lack of knowledge. For many, CFS organisations may be the first contact those with CFS may have for advice.

    * Like the whole CFS issue of what defines CFS and what CFS is, controversy surrounds some CFS organisations.

    AMERICA
    CFIDS Association of America www.cfids.org *
    International Association of CFS/ME www.iacfsme.org
    R.E.S.C.I.N.D. www.rescindinc.org
    P.A.N.D.O.R.A www.pandoranet.info
    M.E. Society of America http://www.cfids-cab.org/MESA/
    National CFIDS Foundation www.ncf-net.org


    AUSTRALIA
    ME/CFS Association of Australia Ltd www.mecfs.org.au
    Alison Hunter Memorial Foundation http://fresh-guild.com/ahmfsite/index.html
    ME/CFS Australia (SA) http://sacfs.asn.au
    ACT ME/CFS Society Inc www.mecfscanberra.org.au
    ME/CFS Society of NSW www.me-cfs.org.au
    ME/CFS Australia (Victoria) www.mecfs-nt.org.au
    ME/CFS Australia (Northern Territory) http://www.mecfs-vic.org.au/welcome-...hern-territory
    ME/CFS/FM Support Association QLD Inc www.mecfsfmq.org.au
    ME/CFS Society of WA (Inc) www.mecfswa.org.au
    Darwin ME/CFS Society
    ME/CFS Australia (Tasmania)


    CANADA
    Nightingale Research Foundation www.nightingale.ca
    FM-CFS Canada http://fm-cfs.ca/home.html
    Invisible Disabilities Association of Canada www.nsnet.org/idacan
    National ME/FM Action Network http://www.mefmaction.net/



    EUROPE
    European Society for ME (ESME) http://esme-eu.com/
    European ME alliance www.euro-me.org
    Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie http://asso.nordnet.fr/cfs-spid/index.html
    Associazione Italiana Sindrome da Stanchezza Cronica www.salutemed.it/cfs
    ME/CFS Foreningen www.me-cfs.dk/Forside
    Irish ME/CFS Association http://www.activelink.ie/node/389
    Irish M.E. Trust (I.M.E.T) http://www.imet.ie/
    ME and Disability Support Group http://www.steungroep.nl/index.php/home/organisatie
    ME/CVS Vereniging http://www.me-cvsvereniging.nl/welko...cvs-vereniging
    The CFS - Netherlands Foundation http://www.me-cvs-stichting.nl/
    Norges ME-Forening http://www.me-forening.no/index.php


    NEW ZEALAND
    Associated New Zealand ME Society www.anzmes.org.nz


    UNITED KINGDOM
    ME Research UK (MERUK) http://www.meresearch.org.uk/index.html
    MEActionUK www.meactionuk.org.uk
    Association of Young People with ME www.ayme.org.uk *
    Action for ME www.afme.org.uk *
    CFS Research Foundation www.cfsrf.com
    The ME Association www.meassociation.org.uk
    ME North East www.menortheast.org
    The National ME Centre www.nmec.org.uk
    The Young ME Sufferers Trust www.tymestrust.org
    25% ME Group www.25megroup.org
    Welsh Association of ME and CFS support www.wames.org.uk
    Invest in ME www.investinme.org


    * indicates Organisations in which involve controversy


    * Controversy Related To Support Organisations

    This is expecially an issue in the UK as many disagree with the Wessley school of thought which revolves around CFS being a psychological disorder and in which CBT and GET are often the only two treatments recommended with other treatments highly discouraged. Both the main UK organisations AFME & AYME (the AFME junior organisation) are quite supportive of the Wessley school of thought but many patients have been harmed while following these recommendations.

    Many UK patients have been treated as they are somatizing and psychological instead of biomedical research is usually undertaken. Also there is the issue of AFME use of the Oxford CFS guidelines to select study participants.

    References
    1. www.cdc.gov/cfs/cfsbasicfacts.htm
    ........
    please add your states CFS associations to this! (go to edit at top of this page, it will automatically put the color on any links)"
     

See more popular forum discussions.

Share This Page