Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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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. Ecoclimber

    Ecoclimber Senior Member

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    CEO of CAA-CFIDS-Solve/CFS, it's the same o' same o'. When their leadership make -won't say earn - $ six figure incomes while the small remainder goes to irrelevant 'research' programs over the last 15 years, I say you have a cash cow for those in leadership positions. After Kim McCleary departure and Carol Head as the new CEO, It's comparable to rearranging the deck chairs on the Titanic while at the same time trying to build them stronger and with better material. The fact remains, you still on the Titantic.

    With that being said, I am not sure that petition is very effective given the fact that another petition was tried in 2011. When the HHS ignores the petitions of most of the ME/CFS researchers and clinicians, patient advocates and lawsuits and FOIA requests from patient advocates, we have a rogue HHS/NIH/CDC. They are going to dictate their own terms. A patient 'advocacy' group such as Solve/CFS provides a symbiotic relationship that makes their actions appear in the best interest of the patients.
     
    Last edited: Mar 18, 2015
  2. Liz Willow

    Liz Willow

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    The earlier petition most certainly embarrassed the CAA and led to some changes. It was delivered at a CFSAC meeting by a public commentator. Plenty of people heard about the petition and the number of signature it received. The organization came out with a statement around that time entitled "Putting Research First" which, along with an apology regarding its failure to communicate adequately, stated that it had shifted from direct patient support to focusing on research. The original letter appears to have disappeared from the SMCI/CAA website, but there's a copy here.

    It's difficult for sick people to keep up the pressure. That's what happened here. Advocates burned out or focused on other issues and SMCI/CAA grabbed the opportunity to rise again. Continued questions should have been raised, especially when the organization started to speak to media and policy makers.

    It's critical that those concerned about SMCI's influence continue to challenge it. And please don't count on "other" advocates to do this. We need all hands on board!
     
    Last edited: Mar 19, 2015
  3. Marylib

    Marylib Senior Member

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    The earlier petition was interesting too. History is always interesting to me.
     
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  4. Liz Willow

    Liz Willow

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    I agree. I find the comments posted on the first petition especially interesting.

    Click here to read comments on the earlier petition.
     
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  5. beaker

    beaker ME/cfs 1986

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    I think there are 2 issues being tied together that are separate.
    1. CAA/Solvewhateverthenewnameis representation of all patients.
    2. IOM issues

    I for one am not happy w/ CAA
    But I am undecided on IOM issues.
    I can not therefore sign.

    To me, this petition is an attempt to get those of us who are not in alignment w/ CAA to jump on the anti IOM bandwagon. As though we can't have one w/o the other. Not true. Therefore this feels like manipulation to me.

    Separate the issues and then I will take this seriously. ( Yes, it would be ok to include in a non support of IOM petition to say something to the effect that some patient groups we do not feel represent all patients are in support of this and we have this petition to show this is not true.But have the focus on stance on IOM )

    ed:typo
     
    Last edited: Mar 20, 2015
  6. elbosque

    elbosque

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    It is not a seperate issue. The CAA's u critical support of the whole IOM process (not to mentiom their P2P cheerleader role) pretending to speak for patients gave a bad idea and a bad process an air of validity. They don't speak for patients. They don't speak for the expert researchers either. I was just speaking to my infectious disease specialist yesterday about the IOM's report. He used to benour CDC's head ependimiologist. He could not undetstand how any responsible physician could come up with such a weak criteria either and agreed that it would cause many misdiagnosis. Likewise expecting GPs to diagnosis such a compkex illness, even if use the CCC or ICC, is not practical. First, some of thevtesting required has to be ordered by a specialist. Second, then do not have the indepth knoweledge of this illness. It requires specialization. Two days ago i spoke with the team coordinator of a group here doing studies into ME. I asked her if they would take subjects diagnosed with SEID in the future. She said they would never consider it. Yes, they all have read the report. So tell me, you now have a SEID diagnosis. Few if any researchers will select you as a subject. The majority of research will continue with the flawed Fukada and the CCC /ICC diagnosed patients to draw on as subjects. They know peolle diagnosed with SEID have a high probability of not meeting the olde criteria. To draw from those diagnosed with SEID would contaminate your subject group. You could not build on any previous research. There are only a few researchers/clinicians trumpeting the benefits of the IOM and it is obvious why. Which brings us back to the origonal point, the CAA have no business pretending they speak for patients. They don't even speak for the ME researchers or clinicians. As others have pointed out, they speak only for themselves. People should be asking why the limes of the CAA and Pandora have been such uncritical fans the IOM process and report, despite the recommendations ignored from the CFSAC and despite the experts letter criticising it from the beginning. What is in it for them?
     
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  7. dancingstarheart

    dancingstarheart

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    There are differing opinions on how the criteria will be able to properly diagnose and form a patient population, along with the capability of the general doctors to perform a diagnosis that would fulfill the expectation of the IOM panel.

    If you are stating something is false, that is specifically in regard to a fact not an opinion. If that is the case you need to provide evidence to support your claim.

    If you are claiming false, as in an act of deception, I completely refute that. I think this is what you are doing since you are implying that integrity is being undermined.

    Right now these are theories ; they are opinions not facts, whether the IOM criteria is too broad, just right, or even too exclusive. So falsehood does not weigh into the matter. If you do not agree with the opinions stated in the petition, then you need not sign, and can even dispute it with explaining your opinion. But, it is completely wrong to bring into question the integrity of those that are promoting or signing the petition.
     
  8. dancingstarheart

    dancingstarheart

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    That is a very interesting point you made. I don't think that there is a purposeful manipulation though. It was routed in response to the current CAA involvment with basically promoting the IOM report and that is why this petition is routing now. Why don't you start routing a petition that says CAA/SMCI does not represent patients, and I will be willing to sign it even if it doesn't make an opinion about the IOM?

    And there is another petition making its rounds asking for more funding for ME/CFS research. But, down in the explanation of the petition, there is wording the legitimizes the IOM report and can be seen as supportive of it. For that very reason, I will not sign that petition. I do not want to ask for funding that is not earmarked for the type of biomedical research that I feel will provide the most accurate insight into the disease and not create more inaccurate jarbled results because of poor cohorts (like we have seen with Fukuda).
     
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  9. dancingstarheart

    dancingstarheart

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    I think the purpose of the petitions should not be directed only at the HHS/NIH/CDC. History has shown (e.g. recent history when CFSAC recommendations were ignored for many years, including the latest recommendation of adopting the CCC for clinical criteria and not implement the IOM process) that those in power are not listening to the ME research disease experts, clinical experts, advocates, and patients. The petitions are a tool for advocates to communicate our wishes and needs to the public, congress, and media. Only pressure from the public, congress, and media can accomplish productive changes in the NNS/NIH/CDC bureaucracy to force those organizations to comply to the public will. Just because they are unelected scientists in a privileged government entity does not mean they are sovereign and without accountability to the very people that pay them.
     
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  10. dancingstarheart

    dancingstarheart

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    The same could be said about researchers and clinicians being subject to fads, foolishness, and groupthink. It is all about who/what a person gets their facts from. Just because one is a patient does not discount their expertise from their previous healthy life (many are doctors, scientists, lawyers, non-profit organizers), or the knowledge that is gained after they have become sick.

    Those that are the most valuable as leaders and advocates continue to test and cross check the source of facts for: 1) validity and truthfulness, 2) for proper motive, 3) for associations that could influence (aka "groupthink" resulting from friendships/associations, those who used to work for CAA, CDC, Pandora).
     
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I agree with parts of this (groupthink is a widespread phenomenon which everyone is subject to... people have a variety of knowledge sources and "patient" is not a patient's only descriptor), but let's not do the guilt by association part, ok?

    1) We can check validity and sometimes truthfulness
    2) It is almost impossible to determine motive; talking about motive often results in mudslinging.
    3) Sorry, but organizations (or people in or out of them, whether previously or never associated with organizations) are not 100% good/evil (in most cases, and none of the exceptions I might think of are listed above).

    The point about groupthink is that it's useful to consult with other sorts of people who have different viewpoints.

    Even including people we might disagree with or not even like. (May not include people who cannot reason at all, such as the leading BPS proponents.)
     
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  12. Valentijn

    Valentijn Senior Member

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    Actually no, I don't. You're the ones trying to gain support for the petition - you're the ones who want to persuade people of something.

    Nonetheless, to claim that the IOM is proposing "overly broad diagnostic criteria" is pretty obviously untrue, when the definition and even the name are extremely focused on PEM. And the body of the document includes an excellent description of PEM, as well as how to test for it. Short of creating a diagnostic criteria the length of a novel, I'm not sure how much more specific it could get.
     
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  13. alex3619

    alex3619 Senior Member

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    Exactly. Government agencies have a long history of ignoring us.

    Such petitions and letters need to have laser-like precision. One message. Additional material can be added in supporting documentation. When different things are bundled together, even if they are related in some way, then there is higher risk that someone wont sign it. I have been unable to sign several petitions lately that are fairly good for the most part but contain things I cannot agree with. At least some take the same position I do. Petitions do better if there is ONE thing being asked, or claimed.

    Shotgun petitions that contain a bunch of things, even related things, also risk being received badly. It can lend credence to the claim the petition is only from malcontents. Some people will agree with all of the points, but a bunch more will only agree with some of the points, and some in that group will not sign it. It weakens the petition.


    My position on this current petition is it has the wrong focus and appears muddled, enough for many to not sign it. A simple message would be that as stakeholders we demand adequate consultation for all matters involving us, and at all levels, and this can be directly sourced from patients. That is, NO forum or organization speaks for us.


    This means we are asserting that NO forum or organization has the right to speak for the community, though they might in some cases speak for their own members, or be involved in other discussions with the community, or be involved in assisting individuals to organize for advocacy.
     
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  14. Sean

    Sean Senior Member

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    Never claimed otherwise, and have made plenty of hard criticisms of those people over the years, along precisely those lines. Wasn't talking about or to them.

    Never claimed otherwise. Not sure of your point?

    Not sure of your point?
     
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  15. alex3619

    alex3619 Senior Member

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    On diagnostic criteria I suspect there will eventually be only one criteria: post exertional symptom exacerbation, backed by a blood test. There may however be different causes of that, in which case ME or SEID are just syndromes, or a final symptom presentation for multiple different reasons.
     
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  16. Hip

    Hip Senior Member

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    @Nielk
    I am not taking a stance one way or the other on this, mainly because I don't know enough about the CFIDS Association of America to take a stance; but I am curious to know how you plan to represent "your voice".

    In the details of the petition, you say that "we [the undersigned] ask that you honor our voice". But what system are you planning to set up in order to forward your "voice", your collective opinions, to the four organizations you are directing the petition to (namely the HHS, CDC, HIH and CFSAC), so that it can be honored?
     
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  17. alex3619

    alex3619 Senior Member

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    Group think is everywhere. Including forums. Any closed group can wind up with groupthink, though I think bureaucracy and political parties (of any persuasion) win the prize for this.

    I agree with @WillowJ , describing motivations gets you into deep trouble. Its pure politics, and of that kind that can backfire. Describing outcomes, or effects, or consequences, is better. While we might, for example, suspect that some particular psychogenic proponent has nefarious motives, this is irrelevant if we focus on outcomes. If the outcome is bad the motivations become unnecessary. Outcomes are much easier to demonstrate than motives.

    Its similar with associations. If someone has a conflict of interest, then they have a conflict of interest, with the potential for subtle or not so subtle bias. It does not add to the argument to claim conspiracy unless you have a paper trail that proves it to sufficient standard it would hold up in court. In which case you should be calling for an official investigation.

    Now, talking about trust, that is a whole other issue. Trust is personal, and I do not presume others have the same view as me. I do not trust the CAA, nor do I trust the CDC. However trust is nuanced, and there are specific reasons and issues for my distrust that do not apply to everything CAA or CDC related.
     
  18. Ember

    Ember Senior Member

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    "Diagnostic criteria the length of a novel" would seem to describe the IOM report. An ME diagnosis includes four parts:

    (a) Post-Exertional Neuroimmune Exhaustion (PENE), a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions;
    (b) neurological impairments;
    (c) immune impairments;
    (d) energy metabolism/ion transport impairments.

    Clinicians, apparently too busy to check for three neurological impairments and three immune impairments, are now expected to assess both the frequency and the severity of postexertional exhaustion, unrefreshing sleep and cognitive impairment. Using cognitive impairment, a streamlined SEID diagnosis involves fully ten steps.
     
    Last edited: Mar 22, 2015
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  19. Nielk

    Nielk

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    I did not start or composed this petition. I only posted it here for those that wish to sign it. I think that when they wrote "our voice" , they meant the individual voices of each patient. In other words, with the advent of social media, each patient can voice their own opinions - just like they are doing here by signing their own name.

    I understand your hesitation in signing the petition if you are not knowledgeable about CFIDS Association's history. The reason that I have signed it is because SMCI (new name for CAA) has switched a few years ago from being an advocacy organization to focus solely on research projects. They no longer have a membership and no longer represent patients. They have been raising funds for research. Yet, when it serves their purpose, they still act as if they are the largest advocacy agency. They represent us in the media and most currently in the event that they are sponsoring to further promote the IOM report. They are using funds which the donors have earmarked for funding, in order to promote their viewpoints, as if it is our collective viewpoint.

    They have been historically pro-government in their views. I have nothing in general against the US government, except in the case of this disease, the government/HHS has willfully and knowingly neglected and caused damage to the patients. We are all still lingering in pain and disabled because HHS decided to marginalize us and not to spend any money to further the science for this disease.

    SMCI/CAA has not been our champion, fighting for our rights with the government. It has been the opposite. That is why I have signed this petition.
     
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  20. Hip

    Hip Senior Member

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    Are the SMCI/CAA really promoting their own viewpoint, but pretending that this viewpoint is that of ME/CFS patients? I have not followed their press and news releases, so I am not familiar with what they do or say. How do their news releases differ from say those of the UK's Invest in ME organization, which also recently expressed its opinion on the IOM report (and as far as I am aware, Invest in ME did not represent it's own opinions as being representative of the ME/CFS community in general)?
     

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