Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Petition the White House to establish panel on lyme disease.

Discussion in 'Lyme Disease and Co-Infections' started by roxie60, Sep 2, 2014.

  1. roxie60

    roxie60 Senior Member

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  2. roxie60

    roxie60 Senior Member

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    Just to track progress there ard less than 500 signatures when I signed. The threshold to get attention yo tjis issue is 100,000.
     
  3. Ren

    Ren .

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  4. roxie60

    roxie60 Senior Member

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    No, that is an effort initiated through Congress, very worthy effort and another avenue to raise awareness one person at a time. This is another grassroots eeffort to geg the Executive branch involved. The White House in an effort to say theh are listening to the People set up yhe petition program so regular people could voice their requests on issues they feel are not getting addressed properly.

    Initially the petition had the have 1000 signatures yo get consideration, over time that has been increased to 100000 signatures in 30 days required.

    This just one more possible way for lyme patients and their caregivers to let Washington know this is an important issue worthy of investigation. it is the easiest way for a sick lyme person to help themselves and raise awareness. No one hears us or really sees us at times, thaf has to change, we have to raise our voices to be heard with so many competing issues.

    I suggest asking relatives and friends to sign. It will give ghem the chance yo do sometjing small to help support you if they are willing. Especially when it is so hard for those around us to understand and know what to do to help us, here is a small way.

    There has been a bill in Congress every session for many years but dies in committee, but the wheels of congress move slowly on some issues. I am happy that the discussion continues in Congress but this is another avenue to letthose in Washington there is an issue worth investigating.
     
  5. roxie60

    roxie60 Senior Member

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    No money is being asked for just signatures. Another opportunity to raise awareness. 25 people have signed up since I did. My Mom also added hef signature and committed to sending the link to 25 other people.

    If everyone can contact 25 people willing to just give thier signature only 4000 people need to appeal to others to meet the White House requirement ti investigate the issue and develope a panel. It would not be as overwhelming as it seems but we do not have much time to get it done. If we wont help ourselves who will.
     
  6. roxie60

    roxie60 Senior Member

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    25 signatures have been added since I signed. It can happen if we take a small step. Takes 3 minutes.
     
  7. roxie60

    roxie60 Senior Member

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    I sent a tweet to Kevin Bacon, at least I think I did, not tweet savy, making him aware of this petition. Hopefully he will retweet and will result in more signatures.
     
  8. roxie60

    roxie60 Senior Member

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    Also tweeted Nathan Fillion, if he retweets it could reach over a million people. Hopefully will see big jump in sigs over the next couple of days. I also added to facebook.
     
  9. roxie60

    roxie60 Senior Member

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    I sent email to Katina Makris, host of weekly lymelightradio asking her to garner support for this petition and help raise awareness.
     
  10. roxie60

    roxie60 Senior Member

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    Just heard back from Katina Makris. Her next live show is 9/10/14 and said she would mention the petition on air. You can find info on her radio show at this link http://lymelightradio.com/
     
    justy likes this.
  11. roxie60

    roxie60 Senior Member

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    I should mention if you sign the petition you will get and email to verify anf the signature is not registered unless you reply to the verification email.
     
  12. justy

    justy Senior Member

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    Is it just for US citizens?
     
  13. roxie60

    roxie60 Senior Member

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    Sadly I think it is just for US citizens

    What is the purpose of We the People?

    We the People is a new, easy way for Americans to make their voice heard in our government. It is a platform on the White House website where individuals can create and sign petitions that call for action by the federal government on a range of issues facing our nation. If a petition gathers enough signatures, it will be reviewed by White House staff and receive an official response. We the People helps the White House understand the views of the American people and have a focused and civil conversation with them.

    How does We the People work?Who can participate in the We the People platform?

    Anyone 13 or older can create or sign a petition on WhiteHouse.gov. In order to participate in the We the People platform on WhiteHouse.gov, users must create a WhiteHouse.gov account and verify their email address.

    What happens to a petition if it doesn’t reach the petition signature thresholds?

    Petitions that do not reach the threshold for official response will be removed from site.
     
  14. roxie60

    roxie60 Senior Member

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    Im sure we have over 100 active lyme members here. Only a few have commited to stand up and be heard. There are many activities lymies cant participate in due to not enough energy, feeling sick or no finances to spare.

    This is one way that costs nothing but 2 minutes of your time, your name which is only displayed as initials and your city. Then you have to reply to an email verifying who you are. That is it. If we dont try to stand up for ourselves and be heard who will? It takes more energy to post a thread here than sign this petition. None of us like what is happening to lyme patients and others likd cfs and ME so here is a chance for us to br heard. No matter the immediate results there is a good feeling when we stand up for ourselves against injustice.
     
  15. roxie60

    roxie60 Senior Member

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    Just hit 500. Thank you to those signing the petition to raise awareness.
     
  16. Ren

    Ren .

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    Not trying to be difficult - just trying to understand.

    I thought this "permanent working group" -- "the Interagency Lyme and Tick-Borne Disease Working Group" -- had been established to work with (have members from) federal agencies (executive branch), including HHS, NIH, CDC, FDA.

    See http://docs.house.gov/meetings/IF/IF00/20140729/102597/BILLS-113-HR4701-P000373-Amdt-3.pdf

    Or is this petition to try to get a response from the president himself?

    Just as an fyi, and I just recently happened upon this info: Lyme will get about 21 million in funding, compared to ME/CFS' 5 million.
    http://report.nih.gov/categorical_spending.aspx
     
    Last edited: Sep 3, 2014
  17. roxie60

    roxie60 Senior Member

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    @Ren I guess I am confused why you seem to object to members taking advantage of all avenues to raise awareness and try to get positive patient oriented change implemented. Many of the members here have been diagnosed with CFS/ME/FM for years before learning they have Borelliosis and coinfections. I have in the past encouraged members to support efforts to raise awareness and funding for CFS/ME/FM.

    That working group is under the control of government agencies (similar the the agencies and doctors in the UK that serve more as obstacles to progress for ME patients) and they will extend an invitation to a minority of people representing patients and their doctors. Those brave people will be in the lions den working at a snails pace. This woking group is not required to produce anything reportable for 3 years and then they are required to report every 5 years after with updates.

    I am happy there is a working group established to investigate issues associated with lyme and coinfections however im not impressed with their charter. The charter doesnt specify who the non government agency participants will be, they may not be lyme patient advocates. We will not know if those selected as lyme advocates really are until they have been selected.

    BTW, there are a lot of initiatives related to CFS/ME, this is just one site listing many http://solvecfs.org/category/government-advocacy/ I would never get on a thread and suggest members should be satified to do nothing else because all of these initiatives exist currently for CFS/ME. You seem to be suggesting members with lyme should satified that this working group exists. If you are familiar with government sponsored committees most are not very productive except spending taxpayer dollars. The difference with this petition is the resulting panel should be citizen, patient oriented not lead by government agencies that have a history of antagonism towards lyme patients, their doctors and scientists trying to make real progress to benefit lyme patients directly.

    Regarding your comment on the monetary support for lyme vs cfs, this is not a competition and your comment seems to imply lyme patients again should be quiet because their illness has a higher ESTIMATED funding for 2014. First that is estmated funding. Even if you look at prior years you will see taxpayer dollars being given to many schools for research but very little of it is patient oriented. Im sorry but there are some scary things (e.g. putting OpsA in rice to control lyme disease, research salivary glands of ticks) they have funded but how much of it has trickled down and made any real difference.

    That working group you linked has 3 years to produce a document on lyme related issues....3 friggen years. According to new admission from CDC that would be nearly 1 million more people infected with lyme and have their health and lives turned upside down waiting for this working group just to produce a paper.

    so I dont really understand why you are posting these links in the Lyme subforum implying additional efforts to raise awareness are somehow not warranted. I personally want more funding and awareness for CFS ME FM LYME. After all that many of us have suffered and lost due to current lyme and coinfections guidelines and ignorance of general practitioners I for one will take advantage of every opportunity to raise awareness regarding the lack of effective testing, proper diagnosis and treatment.

    Sorry if you disagree but I dont see this as a zero sum gain or as a competition between our illnesses. Our illneses have more in common then not. Im for increased awareness for all these invisible illnesses but this effort just happens to apply to lyme and coinfections which is why I put it in the lyme subforum.

    I did not reply to your first comment but you commented again and I just dont get your point or motivation ??
     
    Last edited: Sep 3, 2014
  18. Ren

    Ren .

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    Again, "Not trying to be difficult - just trying to understand." None of the statements in the post above (post 17) represent anything that I think or mean; these assumptions are incorrect.
     
  19. roxie60

    roxie60 Senior Member

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    Ok that just the way it seemed, thanks for clarifying
     

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