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!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

It's International CFIDS/ME/FIBRO Awareness Day!

Discussion in 'Action Alerts and Advocacy' started by cfs info, Mar 1, 2010.

  1. cfs info

    cfs info

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  2. Frank

    Frank Senior Member

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    From Whittemore Peterson Institute
  3. michal

    michal

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    I think the best way how to make a publicity of our illness on this day is:
    We have to go in each bigger city in all over the world on the street to be visible. We should take for 2-3 days (including 12th of May) our tents and to stay in front of the Ministry of Health/ parliament/ city hall....
    The people and politicians dont take us seriously if we are only behind our computers. We have to be more visible!
    I know that most of us are all the time very tired - but a lot of us can still go to lay for some days somewhere.
    I dont know how to organise it but I would join this activity. I think this is the best way how to be visible and how to force the authorities to take us seriously.
  4. shrewsbury

    shrewsbury member

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    May 12 International Awareness Day for ME/CFS - facebook page of plans

    Request for Information on Planned May 12 Activities

    Lydia E. Neilson <ag922@ncf.ca> via Co-Cure Moderator to CO-CURE today

    This year, May 12, 2010, will mark the 18th year of an International Awareness Day for ME/CFS and FM. A Toronto based advocacy group has set up a Facebook group for May 12th International Awareness Day to promote awareness and the sharing of events. They have requested that anyone in the world (groups or individuals) that plan to participate in this year's activity to please join the group and post an entry on the Facebook page with details of their event.

    So far, there a very few Canadian entries and we'd welcome hearing from you about your plans. You can take a look at the Facebook page without having an account at http://www.facebook.com/pages/May-12th-International-MECFS-FM-Awareness-Day/220534562160?ref=nf . If you don't have an account, you can send details of your event to mailto: may12th.awareness@gmail.com and a group member will update Facebook on your behalf.

    We encourage you to get involved on May12th in any way you can. Everyone can so something! For example one patient said she's too ill to join events but she will take some time that day to pray for everyone else that can take a more active role. Others will write in their blogs or twitter messages or post to Facebook groups or wear a May 12th t-shirt or….the possibilities are endless!

    Any action you can do on that day in support of raising awareness – big or small - is important in achieving the overall goal of raising awareness for these disabling illnesses.

    Be involved – Help Us Be Heard – Help make this year's Awareness Day efforts a huge success!


    Lydia E. Neilson, M.S.M.
    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
    E-mail: ag922@ncf.ca
    Web: http://www.mefmaction.net
    -
  5. shrewsbury

    shrewsbury member

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    Vermont CFIDS Assn. May 12th International Awareness Day Event

    Vermont CFIDS Assn. May 12th International Awareness Day Event

    Pat Sonnett to CO-CURE today

    [if: I like their signature.]

    The Vermont CFIDS Assn. is hosting the following event to commemorate May 12th International Awareness Day. The pdf attachment (which enlarges into an 8.5 x 11 poster) won't pull up in this post, so the information is reproduced below:

    *Chronic Fatigue Syndrome
    Fibromyalgia
    Multiple Chemical Sensitivities
    Gulf War Syndrome
    Lyme Disease



    International Awareness Day

    Wednesday May 12, 2010
    Burlington Police Station Community Room
    One North Avenue, next to Beansie's Bus,
    Burlington Vermont
    1:00 - 3:00 PM

    Hear from speakers, Politicians and Doctors,
    the latest news and events,
    Nationally and in Vermont
    about these Neuroendocrineimmune Disorders


    Vermont CFIDS Association, Inc.
    www.vtcfids.org
    1-800-296-1445


    "Turning the Tides of Modern Medicine is No Small Task"*
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    Keep in mind CFSAC is May 10 and we're supposedly getting a report on the blood supply then. With any luck we'll have something to celebrate and publicize two days later! :D
  7. cfs info

    cfs info

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  8. shrewsbury

    shrewsbury member

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    Dr. Klimas panel discussion in Miami Ma 8 2010

    Pat Sonnett posted this to CO-CURE today

    [if: Now another reason I wish I lived in FLorida. Thanks to PANDORA and CFSKnowledgecenter.com for helping sponsor this]

    Below is a reproduction of the announcement for the May 8th event in Miami to commemorate CFS/ME Awareness Day. Please note that space is limited to 150 people so it is very important you RSVP to Beth Goldberg by email or at the telephone number indicated. We look forward to seeing everyone at the event.

    Miami CFIDS Support & Advocacy Group

    ***

    *Chronic Fatigue Syndrome Awareness Day Presentation and Discussion

    In the spirit of Chronic Fatigue Syndrome (CFS) Awareness Day, join Nancy Klimas, M.D. and colleagues for a series of short lectures covering various topics relating to CFS. Following the lectures, there will be a Q&A session with the panel of presenters.

    Presentations include:

    Treatment Options -- CFS and Fibromyalgia
    Nancy Klimas, M.D.
    Professor of Medicine, Psychology, and Microbiology and Immunology
    Director, Center for Multidisciplinary Research on Chronic Fatigue Syndrome and Gulf War Illness

    CFS and Exercise
    Irma Rey, M.D.
    Assistant Professor of Medicine

    CFS Genomics Research
    William K. Scott, Ph.D.
    Professor and Vice Chair for Education and Training
    Dr. John T. Macdonald Foundation Department for Human Genomics
    John P. Hussman Institute for Human Genomics

    Date/Time: Saturday, May 8, 2010
    Registration: 12:30 p.m.
    Presentation: 1 -- 3 p.m.

    Location: University of Miami Miller School of Medicine, Rosenstiel Medical Science Building, 1600 NW 10th Avenue, 3rd floor auditorium, Miami, Florida 33136.

    Sponsored: By P.A.N.D.O.R.A. -- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy Inc, a 501 c 3 patient advocacy organization headquartered in Coral Gables, Florida, in partnership with CFSKnowledgecenter.com and the local empowerment/support groups in South Florida.

    Cost: Free, the auditorium seats 150 - space is limited

    RSVP: Beth Goldberg at egoldberg@med.miami.edu or 305-243-3492

    Parking: Park Plaza West Garage
  9. citybug

    citybug Senior Member

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    What else are people doing for May 12 Awareness Day?

    I will pledge not to give blood, send out email letter for donations to WPI, and if I can do a one person protest in a busy square. After watching CFSAC on Monday may be more to protest, or inspiration.

    What are other people doing? What is scattered on all the other threads?
  10. Kati

    Kati Patient in training

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    KDP thank you for the reminder that even if we are sick, we can pass on to action. I will write to my local paper and educate about the disease. Will try to fundraise through facebook, for WPI. I will write to my nurse's union for awareness that nurses are not safe at work. I will request to publish in the monthly union magazine.

    I may even write to Wanda Jones following the CFSAC meeting with my comments, thank you or further actions that need to be taken. A suggestion would also be to write to Dr Unger at the CDC and urge them to take down the website. That doesn't take too much time and could make her pass to action sooner than later.

    So... fellow ME.CFS er... What will you do? It takes a village to raise... awareness.

    :hug::hug::hug::hug::hug::hug:
  11. Tammie

    Tammie Senior Member

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    I helped put together a short informational handout on ME/CFS (it was posted elsewhere in this advocacy section and the idea was started originally by Teej) .....got a friend to help me set it up on a website so that anyone can access it and print out copies to hand out, post in public places, etc

    the website is:

    http://home.earthlink.net/~bunnymom1/CFS ME brochureA5.pdf

    It needs to be printed on size A5 paper, with the picture on the front and the words on the back
  12. citybug

    citybug Senior Member

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  13. Sasha

    Sasha Fine, thank you

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    kdp - I hope this isn't off topic, but one thing we've discussed on another thread is that the US govt counts how many people are present (both in person and online) at the the CFSAC meetings. There's one this Monday, May 10 and those of us who can't get there (including those of us overseas) can be counted if we get the live feed from the meeting. Even if you're not watching it all day, you can have your computer on streaming it and you will count as part of the audience - which means govt will see CFSAC as important - which will help us all.

    More detail about the meeting is on that thread. A very easy and potentially very effective bit of activism!
  14. sproggle

    sproggle Jan

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    'ME Friendly' Awareness Week Opportunities...
    Kay Gilderdale will be on the Jeremy Vine programme (BBC Radio 2, 12-2pm) on Tuesday 11th May

    *This is therefore a great opportunity for us to ring in, email and text the show! As Jeremy Vine also does the BBC 1 programme Panorama, it's an excellent chance for us to alert him to the Panorama ME Investigation Campaign Petition!


    Full contact details for Jeremy Vine:
    Email: vine@bbc.co.uk,
    Call: 0500 288 291,
    Text: 88291.


    Sample email:

    Jeremy Vine

    To coincide with ME Awareness Week, I enclose the link to a petition on behalf of the Facebook campaign group Panorama ME Investigation Campaign (by Get ME on TV!) requesting that the Panorama Team conducts an investigation into the UK Government's neglect of ME sufferers.

    We wish to highlight and change the fact that the Government only funds psychological interventions for ME. Current research also does not clearly define ME , the Oxford Criteria is used which requires patients have idiopathic chronic fatigue and nothing more.

    This vague definition helps no one, it renders CFS a 'waste basket' diagnosis and encourages doctors to look no further than a few basic blood tests for any physical abnormalities.

    The Government continues to confuse ME with chronic fatigue and as a result it is poorly understood by the majority of medical professionals.

    ME/CFS clinics work on the belief that patients are depressed and deconditioned. They offer CBT &GET to motivate and encourage patients to ignore their symptoms and increase their activity levels.

    All this needs to change, ME needs to be clearly and universally defined throughout the UK by Government bodies and medical professionals. There are several well respected and published clinical definitions of ME the recently published Candian Consensus Document would be ideal.

    Our campaign group has over 600 members, the petition has acquired 1319 signatures since its creation on the 15th April 2010 and many comments have been left.

    Petition link http://www.ipetitions.com/petition/meinvestigation/

    Please highlight our cause!

    --------------------------------------------------------------------------------------------------------------------
    It would also be great if anyone who's up to it would phone in or text on the morning of the show and mention our campaign, thank you all xxx

    Example Text:
    I support the Panorama ME Investigation Campaign petition hosted on iPetitions, please highlight our cause!!

    Typing in the web address: http://www.ipetitions.com/petition/meinvestigation/
    isn't strictly necessary they will find it easily on google... but if ya upto the challenge lol!

    --------------------------------------------------------------------------------------------------------------------
    And on GMTV on Wednesday 12th May contact link:

    http://www.gm.tv/contact-us/41041-comment.html
  15. Tammie

    Tammie Senior Member

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    It's 7 3/4 inches by 5 inches (kind of a weird size, but that was the smallest we could get the computer to do while fitting all the words on and w/o distorting the picture)
  16. Carrigon

    Carrigon Senior Member

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    Today is May 12th, International CFIDS/ME/Fibro Awareness Day! What have you done for advocacy today? There are so many things you can do, even if you are bedridden.

    Post a video! Get on Youtube and POST, you can make a video just laying in your bed. Tell the world how bad this disease has affected your life.

    Make a video and send it to government officials. Especially if you have a child with this disease. A video of a sick child speaks a million words.

    Write a public blog, tell how the disease affects your life.

    Write an editorial, write to a news media outlet, there are tons of news sites online. Write, write, write.

    Send handwritten letters.

    Wear a tshirt or bracelet or pin for Awareness Day.

    TALK about the disease. Don't shut up, tell people about it.

    For Awareness Day, I did a long post at my website about the disease in the news section.
    http://www.sims2workshop.com

    Dana made a great video for Awareness Day on Youtube:
    http://www.youtube.com/watch?v=2nwtykJ_5d4

    Join us, do not let this day go by in silence. Make your voice heard, even if it's a small thing. Even if all you do is change your avatar or signature on websites with an an Awareness Day pic, just do it!
  17. HopingSince88

    HopingSince88 Senior Member

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  18. Dolphin

    Dolphin Senior Member

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    Short piece on local radio station in Ireland

    (98FM is not huge but it is a commercial station - don't know what their listenership might be at this time - 30,000?)

    A letter from a PWME was read out:
    http://www.dublins98.ie/onair/shows/morning-crew/
    Click on podcasts --> Dublin's 98 crewcast --> ME Awareness Day - buy a blue ribbon today
    (not just a plug to buy ribbons)
    2 minutes
  19. jackie

    jackie Senior Member

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    thank you, tom...i'll post this to my facebook page (which has been dedicated to me/cfs awareness for a few weeks). (if i can figure out how to do that, of course!) in fact, my family has a mcbride clan fb page...and i'll send it to that page as well (must go "over there" and plaster it with blue ribbons!) jackie
  20. Dolphin

    Dolphin Senior Member

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    Great - if you do, will you send me a link (PM if you prefer) and I'll tell Triona. Triona has been through a lot and I think more than most might like to know this.

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