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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Sign petition to HHS stating CAA/SMCI does not represent "our voice".

Discussion in 'Petitions' started by Nielk, Mar 17, 2015.

  1. Nielk

    Nielk

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    Please sign and share this petition!
    "We ask that you no longer rely on the CFIDS Association of America, now renamed “Solve ME/CFS Initiative” as "our voice". We have our own voice, and it is not that of the Solve ME/CFS Initiative” or the CFIDS Association of America. With today's technology, the vast patient population can be interacted with directly. We ask that you do so."

    https://www.change.org/p/us-secreta..._responsive&utm_term=des-lg-no_src-custom_msg

     
  2. Valentijn

    Valentijn Senior Member

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    Since this statement is patently false, I can't agree with this petition and I can't trust the other statements being made. They're seriously undermining their own integrity with these sorts of inaccuracies.
     
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  3. Nielk

    Nielk

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    The integrity of this statement is intact. To state that this is "patently false" is a groundless accusation. Your "interpretation of the IOM criteria might differ from the statement above but, that does not mean that it is false.
     
  4. Sasha

    Sasha Fine, thank you

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    Not 'some patients oppose' or 'we' (the undersigned) oppose, but 'patients oppose'.

    I'm all for people doing honest petitions in support of whatever their position is but I object to a faction making sweeping statements about what all patients oppose, in full knowledge that many and possibly most patients don't hold that position.

    I find it extraordinary that this petition criticises Solve for not representing patients and then goes right ahead and pretends to represent all patients when it doesn't.

    Is this how patients who oppose the IOM report want to see themselves and their views represented? As though they think that patients who support the report's recommendations don't exist and are somehow unworthy of acknowledgement?

    We are all patients together, all suffering together. We all want the same thing, which is to get well. The IOM report has been controversial and the reaction to it has the potential to blow us apart if we let it.

    Are we going to treat each other like this? Should any of us pretend to speak for all patients when we know full well we don't?
     
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  5. Cheshire

    Cheshire Senior Member

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    Can't agree more with you Sasha.
    The use of "patients" instead of "some patients" or "we" is definitively shoking.
     
  6. Nielk

    Nielk

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    SolveME/CFS Initiative which currently is a private research organization - not an advocacy organization any longer is organizing events and making statements as if they are speaking for all patients. This petition is to make it clear that they are not speaking for the UNDERSIGNED patients. The statement does not state ALL patients and clearly a petition is only speaking for those who sign it.

    If you don't agree with it - DO NOT sign it.

    Apparently, we do not want the same thing. Some want the IOM criteria and SEID name and other want the CCC or ICC and the name ME. There is a great divide there and I do not see how we can reconcile this.

    This is why the whole process was a big mistake and why we fought so hard against it. All this could have been avoided had they listened to CFSAC's recommendation.

    The reason why I am continuing to fight this is because in the long run, this will be very harmful for patients who have true ME. The IOM criteria and name do not represent us and HHS knew this will happen.

    At this point it is not clear where the majority of patients opinions lie. I don't think that the claim could be made either way yet. Many are undecided as of this point. Therefore, I don't think that the petition should have stated "some patients" or "most patients" - just "patients" makes sense.
     
    Last edited by a moderator: Mar 23, 2015
  7. snowathlete

    snowathlete

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    As @Sasha points out, it's ironic that in asking for recognition that not all patients are represented by one group, the petition uses language as if all patients are agreed on the matter.

    It shows a lack of caution, restraint and careful thought in my opinion.

    Likewise, I agree with @Valentijn that I cant sign up even if I agree with the idea of not being represented by CAA-SMCI because again there hasn't been enough restraint and focus on the purpose of this petition; instead it's gone into much broader territory talking about the IOM report and offering interpretations on it that many wont agree with - even though those same people may well agree with the notion of not being represented by the CAA-SMCI (or any other single group).

    That leads me to ponder why has this petition started now? What's it really about? The answer seems to be that those opposed to the IOM are against any group that agrees with it - in this case the CAA-SMCI. So that is what this petition is really about, isn't it. That's the heart of the matter.

    The problem I have is not that some people are opposed to the IOM, it's that some people holding these views treat others who hold opposing views with disrespect and disregard. In the same breath as compaining they arent being fairly represented, they push their own view at the exclusion of other viewpoints - as if they don't exist, or aren't valid. This is what causes division in the patient community, not people holding different opinions.
     
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  8. Nielk

    Nielk

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    Where do you see disrespect in this petition?

    Petitions speak for the undersigned. If you don't agree with what the petition says, do not sign it. If you have questions about it, why not ask them? But you are stating that you have questions yet in the same breath decide that you won't sign it. This makes me think that you are not interested in the details.

    There is a lot of history here in the U.S. regarding SMCI. They have taken a lot of actions that many in the community opposed. They used to be an advocacy organization but a couple of years ago changed their direction and they are exclusively a private research organization. Yet, on many occasions, they still act as if they are an advocacy org. that represents patients when it is convenient for them.

    They have recently appeared on television programs purporting being the largest advocacy org. and promoting the IOM report, criteria and name.

    Currently, they are organizing an event on Capitol Hill arranged in order to further promote the IOM.

    Those of us who have signed this petition want to clarify that the SMCI does not represent "our voice". In what way is this "disrespectful".

    We do not have the funds that SMCI has, having collected funds for RESEARCH purposes, to organize our own event. We therefore, dissociate ourselves from them.
     
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  9. Cheshire

    Cheshire Senior Member

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    What would you think about a petition stating something like:

    "The IOM report recommends the name “Systemic Exertion Intolerance Disease”. Patients support this new name."
     
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  10. Sasha

    Sasha Fine, thank you

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    I'm sorry, Nielk, but that's not true. It does state all patients because it uses the grammatical form, 'patients oppose'.

    For example:

    Cats have three legs.

    Is that true?

    Not true, clearly: some cats might have three legs if they've met with an accident but cats in general have four legs. That's why we say, 'cats have four legs'.
     
    Last edited by a moderator: Mar 23, 2015
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  11. Nielk

    Nielk

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    I would agree with you if this was a letter purporting to represent 'patients" but, this is a petition representing the undersigned.

    Is your only objection that they used the word "patients"?

    The petition clearly states: "We, the undersigned, are patients.... It is clear that the petition is only speaking for the undersigned.
     
    Last edited by a moderator: Mar 23, 2015
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  12. Sasha

    Sasha Fine, thank you

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    I'm sorry again to disagree but the section I'm referring to clearly purports to represent all patients.

    If you read, 'We, the undersigned, want better dogfood. Cats have three legs.' you would naturally dissociate the two statements because they are in two different sentences. The first is a statement of what the undersigned want. The second statement is a description of the world.

    In the petition, 'the undersigned' are requesting for Solve to be bypassed and are stating that all ME/CFS patients oppose the IOM report.
     
    Last edited by a moderator: Mar 23, 2015
  13. Kina

    Kina

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    Is Patricia Carter acting on behalf of an organization in this case? and if so which organization?
     
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  14. elbosque

    elbosque

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    As far as i am concerned it is all patients, whether they realize it or not. The CAA has ceased having the authority to speak for patients for a long time, since it started speaking for government beaurocrats. Perhaps the fedetal money has blinded them from their duty and mission. I h seen other NGOs do the same as they becone addicted to federal and/or corporate funding. They rationalize their changing actions as required so they can have the funding to fulfil their mission. But soon, the mission is completely lost to keing the funder(s) happy.Then it becomes an institutional culture as the staff become aligned solely woth their funders and continue to delude themselves thst they ate doing it in the interests of the mission but it is really for their own self interests. I speak about this from experience. The best thing that happened to an NGO i worked for was when we lost our federal funding. We lost about half our staff and programming. However, it forced us to evaluate if we were in deed fulfillung our mission and who were we focusing on with our programs.

    As long as the CAA, Pandora or any organization is takung government or related corporate money, they can not be trusted to represent patients. The confluct of interest to please the funder is too great.
     
  15. Cheshire

    Cheshire Senior Member

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    ?!?
     
    Last edited: Mar 17, 2015
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  16. Nielk

    Nielk

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    The petition states:

    This is an independent petition and is speaking for those who sign it.
     
  17. Denise

    Denise Senior Member

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    Fwiw - the petition site says that the petition was started by Patricia Carter.
    I do not see any indication of association with an(any) organization(s).
     
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  18. Nielk

    Nielk

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    The petition has just been revised to show "many patients" instead of "patients".

     
  19. Sasha

    Sasha Fine, thank you

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    Thank you, Nielk, I'm glad to see that change.
     
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  20. elbosque

    elbosque

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    Exactly.
     
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