The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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May 25 (new date) #MEAction funding demo , Washington DC & elsewhere - patients & supporters

Discussion in 'General ME/CFS News' started by Sasha, Mar 14, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Edit: note the rescheduling to May 25.

    More here:

    http://www.meaction.net/2016/03/14/mecfs-protest-announcement/
     
    Last edited: Mar 22, 2016
  2. Justin30

    Justin30 Senior Member

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    Have other ME/CFS Organizations been brought up to speed on the protest?

    I think this is a time where reaching out to other organizations...could have a snowball affect...they inform their members...builds collaboration...ME Organizations get see eachother face to face to fight for a common cause..etc.

    Great Work MEAction it would be awesome to see big turnout...
     
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  3. duncan

    duncan Senior Member

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    An important Lyme demonstration in DC is scheduled the very next day, May 19th.

    Too bad the two groups couldn't join to help each other out on those two days - or at least, the locals from each community.
     
  4. Justin30

    Justin30 Senior Member

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    @duncan

    I literally just suggested that to MEAction. What about have a 2 day protest of Neuro Immune Mediated diseases. ME/CFS Day one followed by day 2 Lyme have both groups attend to support each other....great idea...i also suggested getting a hold of the dyautonomia community as well because of the overlapp.
     
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  5. duncan

    duncan Senior Member

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    Mayday Project Lyme is the name of the group putting together the Lyme demonstration May 19th. One of its cofounders is Allison Caruana. Another member is Bruce Fries, who has dealt with the CDC.

    www.themaydayproject.org
     
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  6. Esther12

    Esther12 Senior Member

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    tbh, I feel like this is not a condition well suited to protests like this.
     
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  7. Kati

    Kati Patient in training

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    Hi @Esther12, I am curious about what you mean by 'this is not a condition well suited to protests like this', what condition are you talking about?
     
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  8. Justin30

    Justin30 Senior Member

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    It would be nice to see if yhey would be willing to help us out and vice versa.

    There is overlap between these diseases and I think Strength in #s and larger crowds make for bigger impact.
     
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  9. SB_1108

    SB_1108 Senior Member

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    If we don't protest for help fighting our own disease, who will?
     
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  10. Esther12

    Esther12 Senior Member

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    Our health condition. Maybe this isn't the right thread for this, but I suspect that there are often more useful forms of advocacy people can put their limited energy into than a protest like this.

    I could be wrong... don't mean to dump on this before it has happened... but there have been a few attempts at protests like these previously that make me think that we might be better off trying to do other things. Maybe I'm risking a self-fulfilling prophecy!
     
  11. Justin30

    Justin30 Senior Member

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    Both these conditions require recognition and I believe a protest is what the world needs to see....whether it be Lyme disease, ME/CFS, Dyautonomia, MCAS and other....Hidden epedemics.....

    Lyme in many patients leads to ME...look at KDMs patients...many have lyme....i am a patient of his and dont have lyme so....kaufman, kolgenic, peterson, kdm, and others all test for it....and some get treatmwnt for it....some recover and some dont...just like ME.

    People with Lyme the one that is chronic have immune signatures similar to cfs in preliminary studies.....

    All these viruses, bacterias, vaccines, are leading to a dyregulated immune systems for a substantial proportion of the population that in the US=Millions of people

    As @SB_1108 whos gonna fight if we dont?

    People were dieing of Aids in the streets protesting we are slowly dieing in isolation a pure torturious slow death with no treatments!!!!! Its Cruelty....for the severely ill worse than any could imagine!!!!!

    People can choose to protest or not and risk their health if they so choose to:

    - it is done in Vo2 Max testing
    - it is done in clinical trial testing
    - it is done daily by ME/CFS patients who want to participate in life still even though they know they are pushing their limits
    - it is done going to many specialists, doing tests and taking off label meds...

    I dont see the problem with the protest at all and maybe a suggestion to MEAction would be to have Healthy Volunteers Help out as well as care takers. If a patient wants to showcase their struggles and stand up to the absolute debacle of a Cover up put on by the CDC, NIH, Health Services, Insurance Companies and the PACE Trial then that is their right.....
     
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  12. Justin30

    Justin30 Senior Member

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    I think the ME Community is doing things on all fronts but its not enough....MEAction has been doing their best...but we need more organizations to stand up, engage and fight on many levels.....

    One thing I must say is also to family and friends that dont believe this is real...that the CDC/NIH Health Services should stand up in front of the American People and openly say this is a Biological Disease through the media...that is absolutely crippling

    So that disbelievers either family or friends protests as well.

    If you have good suggestions email:

    This is an open source initiative and we are interested in your suggestions for improving this protest!

    Do you have questions or are you interested in volunteering? Please email us at:

    ME.Protest@gmail.com
     
  13. Justin30

    Justin30 Senior Member

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    I just got another good idea im gonna send another email to MEAction
     
  14. SB_1108

    SB_1108 Senior Member

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    There was a previous thread that had a good message about the various avenues of advocacy...
    Those on the inside shouldn't try to silence/control the people on the outside. And vice versa, those on the outside shouldn't try to attack those on the inside for being on the inside.

    If we all work together on the different aspects of advocacy, we will be the most effective!
     
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  15. Esther12

    Esther12 Senior Member

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    Yeah, I didn't mean to be attacking anyone for thinking this is a good idea, but also, I didn't want a desire to be supportive to get in the way of expressing some doubt. Sorry for taking things a bit OT. I'm off now!
     
  16. Roy S

    Roy S former DC ME/CFS lobbyist

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    Save-the-Date – CFSAC Webinar
    • May 17-18, 2016
    • 12:00pm-5:00pm ET, each day
    • This will not be an in-person meeting. Additional information will be posted in April.
     
  17. Sasha

    Sasha Fine, thank you

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    This has been rescheduled (and I've amended the thread title accordingly):

    https://www.facebook.com/MEActNet/posts/1714517935497272

     
  18. Snow Leopard

    Snow Leopard Hibernating

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    How about one of those hologram protests? ;)
     
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  19. SB_1108

    SB_1108 Senior Member

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    The hologram technology is incredibly expensive. Based on this article, we would be looking at spending at least 100k. http://www.newyorker.com/news/news-desk/protest-by-hologram

    Also, it would have to be held at night so that the holograms could be seen (but then they would not be seen by HHS key players).
     
  20. marygelpi

    marygelpi

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    Hey guys, just wanted to remind everyone to sign the petition to raise funding at the NIH, especially if you're unable to make it to the protest. It's not too late! This way all our voices can be heard. Anyone can sign (from any country) and it only takes roughly 30 seconds. We're at 31,000 now but I think it would be powerful if we could get to 35,000 by the day of the protest. So please sign sign sign and share it with friends and family. This is just another outlet for us to get our message across and of course, there's power in numbers for the petition just as there is for the protest :) click the link to sign

    https://www.change.org/p/increase-funding-so-we-can-find-a-cure
     

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