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Just a little survey

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Mar 23, 2011.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    In just a few days, 650 signed a petition to the CDC. The nine action points were in a letter signed by ten organizations and a few patient advocates in January. It was discontinued when CDC officials agreed to meet with PANDORA and the ten organizations that signed the letter, one of the action points in the petition. After PANDORA and these organizations meet with CDC officials, further actions may be announced. We got a commitment to one of the action points, now lets see how we do on the other eight points.

    Based on the nine action points in the letter and petition, we want to make sure individual patients are heard through a survey. You can make comments also.

    http://survey.constantcontact.com/survey/a07e3f2r0fagk8q0b3y/start

    The more who sign this survey, the more the CDC will see what patients want. At this time, 337 have taken it. We would love to get many more. Please share it with others. We have their attention, now let's show them how strongly we feel. It's all in the numbers.

    Thank you.

    Tina
     
  2. slayadragon

    slayadragon Senior Member

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    Can you list here what the eight points are?

    I tried clicking on that link, and it said "You have already taken this survey." I don't remember doing that, but it's possible.

    In any case, I'd like to see the action points.

    Thanks, Lisa
     
  3. Kina

    Kina

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    Slayadragon -- here are the questions.


    P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Org Survey
    There are some error(s). Please see each marked section below.
    Required Question(s)


    1.



    Please help us know your priorities. How do you rate the importance of these action points concerning ME/CFS to be discussed when PANDORA meets with CDC leaders in spring of 2011?



    Accept our invitation to open dialogue through quarterly meetings with patient organization repsresentatives to discuss CDC policies in ME/CFS research.

    Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.

    Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. Use the Canadian Concensus Criteria.

    For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow.

    Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research centers.

    Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, "chronic fatigue syndrome," rests with the CDC.

    Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness.

    Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.

    Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.
     
  4. SpecialK82

    SpecialK82 Ohio, USA

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    Tina - I'm a bit confused on two items:

    You said that we have a commitment to one of the action points - which one is that?

    Secondly, the meeting was going to take place in March initially - has this meeting moved to May? If so, is there a date? Is there a website that we can view with any updates to the meeting - I didn't notice it on PANDORA.

    Thanks so much!
     
  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    That's cool that there is some progress. :) Is there a report of the meeting with the CDC? Which goal did they commit to?

    I'd love to take the survey whenever there's an operable link.
     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Commitment

    Commitment to the meeting, and open dialogue and set up way to have continued dialogue. Basically, the number one action point.

    No report, hasn't happened yet.

    Yes, the invitation was suggested as possibly for March. But, with travel, conferences, etc., it was later worked out tentatively for May.

    No website. Normally, patient organizations would not tell the public about meetings with government officials. This is often seen as regular activities of organizations. However, PANDORA set up a petition and PANDORA discontinued the petition when meeting invitation came. So we felt we needed to let the public know why.

    Link again: http://survey.constantcontact.com/survey/a07e3f2r0fagk8q0b3y/start

    Now at 344 who have responded.

    Tina
     
  7. eric_s

    eric_s Senior Member

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    Thanks for the good work Tina. Just one remark, i don't have too much experience with patient organisations, but i think if it is possible they should tell their members and followers about meetings with government officials.

    I think that kind of meetings are something that PWCs very much want to know about, at least in my case it's like that. So unless those governments officials ask the patient organisation to keep the meeting secret or there is another strong reason, i think it's very important for PWCs to be informed about what's going on in that regard.

    Many people feel neglected and abandoned (rightly, so far) and i think it would give them hope to know about these things. Also it might help in getting to a better relation between PWCs and government agencies and this is where we have to get in the end. We need more government money badly. If an organisation wants my trust and my money (and i want to give my support to organisations) i want to know what's going on as far as that is possible. I think organisations should be as close to the patients as possible. And at the same time we need them to be close to government officials... difficult probably.
     
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I agree with Eric. I think in normal cases, most patients would not have a need or desire to know what exactly the patient organizations were doing on their behalf. But in our case because we have been so badly mistreated, we need to know what is going on particularly when it involves the government.

    And we have more interest. I don't think most other diseases, patients follow the research, for example; they leave that up to their doctors generally (except for rare diseases and other cases like ours where there isn't enough research and not enough doctors who have sufficient expertise).

    At any rate, many thanks to Tina, PANDORA, and everyone involved! It's good that the CDC wants to dialog.

    p.s. the link is still to a survey that has already been taken. I looked on the PANDORA site and couldn't find a survey that looked new (it looked like the one inviting CDC to talk with us, so I wasn't sure that was the right one).
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    It's

    It's likely you have taken the survey before. It was posted here a few weeks ago.

    Your points about more communication is right in line with a conversation I was having just two days ago with another long-term advocate. I used the example of a married couple where one has been unfaithful. After that betrayal, the offender may have to go way overboard in communicating things like where he / she is hourly because the trust has been broken. It may take time to build that trust again. And, this extra effort to communicate may be required to build it.

    Clearly, there is a strong feeling of betrayal toward some organizations and the government in the ME/CFS community. PANDORA was started in 2003, after all that had happened.

    I just started with PANDORA last summer. What I have noticed since then is that PANDORA works hard to involve patients and patient organizations. Honestly, some of you may remember the Chase Community Giving project. Clearly, PANDORA depends on and tries to empower the online patient community. The petition and survey is another example of involving patients and empowering them. That is one of the reasons I accepted the offer to work for PANDORA.

    I have seen an e-mail from Marly with 63 people asking them for input or for help or even just to inform on something to those individuals are empowered to do something or have input in sharing ideas of how a problem might best be addressed. Again, highly unusual as most organizations deal with matters within their board, make a decision and then inform or ask for collaboration. However, this has not always worked out for PANDORA. As the conversation of how to address a situation, a project or something else, has sometimes been misrepresented by those included in that discussion. In other words, the effort to be more inclusive has hurt us. There was the assumption that those involved would understand that this input or being informed was a courtesy and should be respected and appreciated. As you can imagine, if something is now brought up that Marly might want to involve other individuals or organizations in planning or getting input, she is much more selective now.

    We hear often that patients say, "Why can't the organizations work together?" "Aren't they talking to each other?" etc. Yet, when an effort is made to include or discuss with leaders on all sides of the spectrum, an extremist will say, "Why are you talking and including that person. Don't you know that person talks to that organization (or that person) who is an enemy?" It has been not only guilt by association but guilt by association of someone who has association.

    Collaboration and planning must have people included who are discreet and trustworthy. For example, it took three weeks to get the letter to the CDC. A patient was concerned about the appointment and based on the past joint effort actions PANDORA has done, asked Marly to do something and asked what should be done. A discussion ensued. Marly said PANDORA would write a letter that basically gives Unger a chance, in a professional and courteous tone, while is clear and strong on what is needed. After letter was written, we invited other organizations to sign it, including some in the original discussion. A few declined. We also invited a few long-term advocates. A few did, a few declined. We found that some said it was too strong, one said it wasn't strong enough. But, we felt it might have been just right because the majority invited did accept.

    Now, this, of course, was three weeks of work done discreetly. You can imagine what that was like. Each of the organizations had to discuss it among their board members and have a vote. It would have been counterproductive and very unprofessional to have all of this work happening on message boards or facebook for three weeks.

    Not everything can be online internationally in the discussion phase.

    An example is a man who has a new project he is working on at work, possibly something he can't tell even his wife. He may have to attend an after-work meeting and not be able to give his wife any details of who or where he will be. Or maybe he is planning a birthday party for his wife, again requiring some discussions that his wife is not aware of.

    So, how to work in a constructive and professional manner, so that projects can actually be planned and put into effect, not derailed before they even get off the ground, while at the same time involving and informing the patients who have felt betrayed by others is a very hard line, is a balancing act indeed. It requires judgment. We may err, but we are trying.

    In the real world, legally, the organization serves its mission but is answerable to its board only. How much communication is done with constituents (I hate that word) is up to that organization. But we recognize that the past makes the ME/CFS online world is unique.

    Anyone concerned they are not more informed will get more information if they are willing to volunteer to help. ;)

    But even I don't know everything that is being discussed or proposed by PANDORA. I am communications director. If there is a communications need, then I am involved. But I don't have to be involved in every phone call or every meeting, thank goodness.

    Tina
     
  10. *GG*

    *GG* Senior Member

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    Concord, NH
    P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Org Survey

    There are some error(s). Please see each marked section below.

    Required Question(s)


    1.



    Please help us know your priorities. How do you rate the importance of these action points concerning ME/CFS to be discussed when PANDORA meets with CDC leaders in spring of 2011?

    Very important
    Medium importance
    Less important

    Accept our invitation to open dialogue through quarterly meetings with patient organization repsresentatives to discuss CDC policies in ME/CFS research.

    Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.

    Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. Use the Canadian Concensus Criteria.

    For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow.

    Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research centers.

    Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, "chronic fatigue syndrome," rests with the CDC.

    Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness.

    Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.

    Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.




    http://survey.constantcontact.com/s...y/a01hcgln0besj/questions?continue=Continue >
     
  11. SpecialK82

    SpecialK82 Ohio, USA

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    Thanks for clearing that up Tina, it makes sense. The internet has done many positive things for our community but I can understand how sometimes too much information about ideas in the making can lead to misunderstanding and hurt feelings when discussed openly too soon.

    I trust you and PANDORA to strike a chord of balanced communication, thank you to all who are putting in so much time and energy on our behalf.

    No organization can represent all the views of all its members all of the time. Any organization that works honestly to represent most of my views, I will gladly support. I certainly hope that we all can work together when it makes sense to do so, and otherwise we can all push hard in seperate areas but always with the same end in mind.
     
  12. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    thanks for that long post, Tina. I think you have done a very good job keeping us informed and involving us in practical ways. Thank you!!

    p.s. I probably did take the survey before... sorry, I did not realize it was not a new one,
     
  13. Andrew

    Andrew Senior Member

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    I thought I already did this survey weeks ago.
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thank

    Thank you Andrew. Yes, it was posted earlier. Just wanted to generate some buzz again.

    Tina
     
  15. toddm1960

    toddm1960 Senior Member

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    All signed up....... :) Thank you Tina
     
  16. eric_s

    eric_s Senior Member

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    :Sign Good one:, that's true
    I agree, but of course how big that constituency will be, which means how strong the orgnaisation will be, probably depends on how much communication there is and how well it's done. I think you are doing a very good job in this regard by the way, don't misunderstand me...

    I understand that during planning sometimes a project has to be kept secret.
     
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    eric

    eric, you hit the nail on the head.

    Absolutely.

    Many needs to consider. And honestly, coming from a newspaper background, I believe this is the way it should be.

    I believe in the free market place. That way the people are in control. It's like a business. If that business is serving the public, then it will survive. If a church is providing for spiritual leadership that people need, then it will survive. If a newspaper (my former career) is serving its readers, it will survive. If a politician is serving their constituents (there is that word again), then he/she will be re-elected. Ultimately, the people have the power over the institutions of power, either by voting or by where they spend or donate their money. This principle of giving power to the common man over institutions through a free market place is the basis of the US Constitution. And many other countries have now embraced these principles.

    In time, the people, through majority of support or vote, get to decide all these matters.

    Thank you guys for such a wonderful dialogue.

    Tina
     
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    now at 353 responses. Also, 162 comments.

    The point of the survey is to know what patients feel is most important.

    Here are a few comments we got:

    Changing the name is the most important thing in my opinion!

    Educating treating physicians should have the most direct impact on improving patient care. Changing the illness name would eventually remove the impression that the illness is just being tired (current name completely ignores the autonomic, neurological and immune system problems). All the items listed are good but, in my humble opinion, these two items would most quickly impact the lives of current ME/CFS patients.

    Of course i think 95% of research should be biophysical, but i think other things besides possible connections to infections might also be important.

    Thank you for giving us, the people afflicted with this terrible illness, the chance to have a "voice" concerning our situation.


    And this one which is very touching.....

    I am an ME/CFS patient who is encouraged by Dr. Unger's willingness to meet with patient organizations. Her and the CDC's openness to change will be made know by her actions following these meetings. A new day and direction in ME/CFS research is long overdue. Now is the time for this to take place. Dr. Unger, please do not let us down. Do the right thing. Set a new and correct direction for the CDC's ME/CFS research program. Too many people have been too greatly ill for too long!
     

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