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MEAdvocacy.org Update and a Call for Continued Support

Discussion in 'Phoenix Rising Articles' started by Nielk, Feb 23, 2015.

  1. SOC

    SOC Senior Member

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    Of course not! :rolleyes: Nothing I said even suggests I think anything so utterly ridiculous as that.

    I agree completely that we desperately need research into the most severe subset of the patient population. It is likely that the biomarker will most easily be found in that subset, which is why I've always supported the idea of doing a lot of the early research on the most severe patients.

    What does that have to do with this discussion?
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I don't think that anyone on this board, not one person, thinks that it is right that the 25% most severe patients have been neglected. I absolutely agree that this group holds the key to finding the true biomarker and that is why OMF and the End ME/CFS Project are raising funds to specifically study this group and have already raised $150K. They have a much better opportunity to get government funding for their research if they have a positive relationship with the IOM and the HHS.

    The name "ME" has never been used or recognized within the United States. If OMF uses the term "SEID" instead of the term "CFS" it will not change the way that they select patients for the most severely ill patient study. This study is for patients who are bed-bound and in the 25% most ill group. IMO (and I of course do not in any way speak for them, this is just my opinion) they need to continue working with the government to try to get funding for their study and not work against the government to get the name "ME."

    What is more important, getting a certain name or getting funding? I am confused here and am also close to pulling my support for the MEadvocacy project which I had previously supported 100%.
     
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  3. snowathlete

    snowathlete

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    Hi Tom, thanks for talking.

    Personally I think that an advocacy group would best serve everyone's intersts by advocating on topics that there is more general agreement on. At least where there is not strongly held opposing views within the community. That's the kind of advocacy group I want to support; one that focuses on what we agree on, rather than the areas where we don't. Canvassing for more research funding for instance.

    Of course, I accept that some people consider the name ME and CCC/ICC to be really important. I don't share that view in light of the new IOM report, but I can understand that view, and others. I don't think anyone has any problem with MEAdvocacy.org advocating for the concerns of people holding those views, nor any of the other views you express.

    But I think you have to be aware of where MEAdvocacy.org might generate friction with other groups in the community by their actions. The two main ways I see friction developing (and this applies to all advocacy groups) are:
    1. when a group gives the impression they are about the whole community, people donate and support that, but then suddently they find the group is actually about a particular portion of the community. I don't think MEAdvocacy.org intentionally mislead, but you can see how people mistook what your group was about as you didn't make this clear from the start, and this being quite a significant shift in focus it was surely predictable that it would cause friction.
    2. if you advocate for what you want in such a way that people (public, govt agencies, etc.) mistakenly believe that your view is representative of the whole community.

    You say that you listened to a variety of views, and of course I believe you, but somehow that doesn't seem to have translated into the actions of MEAdvocacy.org. Clearly, there are many patients that are happy with the report, and another group that are somewhere in between, including many that wouldn't outright oppose it - honestly, I think that is the vast majority in those other groups, you might disagree, but at any rate the point I think we can all accept is that there is not broad agreement across the community. Yet, the line taken by your group is not very representative of the community as a whole. I think if you are going to take a line that the majority of the community is going to disagree with, you have to do it with care. I am pro the IOM report for instance, and I believe more people are pro the report than against, but if I was going to advocate on that, I wouldn't do so at the expense of people holding other opinions, which in totality might well be the 'majority' of the community. I'd be careful to ensure people didn't think the views being advocated by me were not representative of everyone.

    Even though we have different views on the way forward, I hope you can see what I mean.
     
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  4. Nielk

    Nielk

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    To be fair, the following has been the mission statement since the beginning on the main page of ME Advocacy Org.

     
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  5. Kati

    Kati Patient in training

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    I think it is important for people to realize is while the IOM contract was very controversial, the committee members were in no part involved in that controversy. Our experts were invited for their expertise, which I am sure totals over 75 years of expertise.

    The report represents evidence-based research which our expert were crucial in moving forward. They made it clear that this is a stepping stone which will bring us further with more research. They also recommended name and research be reviewed no later than 5years from now.

    They are speaking for all patients, just in the same way that HIV/AIDs represents the healthy carriers and the very sick.

    The message shared to the public should have been that we are a very neglected, stigmatized group of patients, and that we are asking the governments to recognize this disease and to fund research 20 folds higher than we are getting now.

    Getting stuck on the name is not helpful. Trying to explain what the different names mean is not helpful. That WAPost article made no sense at all. I bet Wessely and co were very happy about that.

    So yes, as someone else said, do we want to fight for the name or do we want to fight for higher stakes like federal funding?
     
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  6. snowathlete

    snowathlete

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    To be fair, it depends how you interpret it, doesn't it. My interpretation was such that I now consider goal 2 to be complete (pending govt rubber stamp). ME has been seperated from CFS and is now being classified as its own disease (SEID).

    Now we find that ME Advocacy.org isn't interested in representing people who had ME that are in agreement with some or all of the IOMs reccomendations.
     
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  7. OneWaySurvival

    OneWaySurvival Senior Member

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    It was good to hear more about how you felt misled by MEadvocacy.org, @snowathlete and where you feel friction is developing with the advocacy group and patients it hopes to represent. I will take your points back to the Working Group because I agree we need to be very clear and qualify statements that we only represent some patients' views, for example.

    Looking at your list, starting with #1, I hope that Nielk posting the original MEadvocacy.org mission statement/goals can at least partially address your concern that we are attempting to follow through on the goals that have been written since the project launched. But, because the IOM report has divided advocates into two or three main camps (accept, reject, or accept with changes), it was inevitable that some patients & donors to MEadvocacy.org would get alienated simply by the group taking any sort of stance on the report.

    To illustrate this point, I'll tell you how on one of our blog articles, we had said "although the IOM report was a good first step, changes are necessary for it to be widely accepted by both the medical and patient communities" and we got ripped on the comments with people saying the IOM report was not a good first step and how we promised our donors that we would use the money to oppose the report. Of course, you've seen the other side where opposing the report is also upsetting donors. But maybe a better course of action would have been to go back to the donors first (as many as would respond) and take a poll on how they think we should respond to the IOM report: Accept, Reject, or Accept only if certain changes are made.

    #2 on your list. I agree 100%. This needs to be more clear in any future press. We need to qualify who we are with a statement something like "MEadvocacy.org is a patient-run advocacy group, but does not speak for all patients." (whether the editor keeps such a long qualifying line may be out of our control, but we should at least try)

    This is not what the people at MEadvocacy.org think. I think most committee members for instance think there are positives in the report. But because there is not a process for revisions being offered, a decision had to be made to either write a dissenting opinion piece (something which had not yet appeared anywhere in the numerous press about the IOM report, giving the misleading idea that everyone is on board with the report as-is), or to write a piece that accepts the IOM report as the new name/definition to replace M.E, or maybe a 3rd option would be to ask for changes even though no process for changes has been offered.

    I also agree with you and @Kati that the most productive strategy going forward may be to turn our focus to Funding. As you said, that is something all patients can agree on. Maybe more articles can be submitted in the future which quote Dr. Jose Montoya from the Feb. 23rd PCOCA call (on Monday) with CDC's Beth Unger. It was difficult to hear on the garbled phone so this is a paraphrase, but I believe he said that "with an annual research budget of $100MM, ME/CFS could be solved in our lifetimes." Now that would be something to celebrate!

    Thanks for your thoughts @snowathlete . I will do my best to consider a variety of patient views when I offer my 2 cents to questions being asked in the MEadvocacy.org Working Group and will think about ways to improve on the process of getting the input of additional patients as the National PR Campaign for ME continues.
     
  8. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I don't think you will survive with this stance. You need to take a political stance and stick to it. It should be quite obvious which patient factions would support IOM and vice versa. It was before the report was published. It is not the failure to support IOM or stand against it which will go against MEadvocacy but the failure to take a single side and stick to it.

    Why should I support the group if later on I find that the org supports a different political faction. I want clarity on this. Democracy will not serve in the long run, it leaves you open to control by the very interests that currently say they are speaking for all patients.

    Furthermore to say the org doesn't speak for all patients may be true, but not only will it not get published, it won't do the org much good. ME advocacy needs to look and sound like it is the voice of ME or CFS or SEIDS (depending on which factions it supports). You need to own the political landscape.
     
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  9. OneWaySurvival

    OneWaySurvival Senior Member

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    Sorry @RustyJ , I'm not a politician and I don't pretend to be. I'm a patient. One who should be back in Finances but is currently disabled and in physical misery. As part of the MEadvocacy.org Working Group, I will keep listening to other patients and make suggestions that I think will help all of us, not just a faction of us. I hope this does not turn you off to MEadvocacy that patients are given an opportunity to give their say, even if ultimately tough choices have to be made that can't include everyone's wishes/demands.
     
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  10. SOC

    SOC Senior Member

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    I don't see why it had to be that black-and-white. It seems to me there was plenty of room for a reasoned critique of the IOM report pointing out the various pros and cons from multiple viewpoints. That would have represented the patient population as a whole much better than throwing the baby out with the bathwater.

    Not if we are talking about funding for two different illnesses. At best we would be working at cross-purposes. At worst we would be fighting each other for the same funding stream. Neither seems beneficial to the patient population.

    If your organization is trying to help all of us, not just a faction, you did yourselves a disservice with the Washington Post article. With one article, you alienated a significant portion of the patient population. Whether they turn out to be a majority, or a noticeable minority, you still lost a significant part of your support and donation base. Trust is everything when you depend on donations to survive. Time will tell how much that will ultimately affect your advocacy efforts.

    Finally, I have to say that I find it rather disingenuous to think you can "help all of us, not just a faction" while including in your charter that SEID and ME are distinct conditions. Which group are you representing if they are, indeed, two distinct patient populations?
     
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  11. GracieJ

    GracieJ Senior Member

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    Two distinct patient populations? I meet the criteria for SEID and I meet the ICC criteria for ME. As the IOM report pursued an overview of the existing material on ME/CFS I am inclined to go with the flow on this, where it will probably go anyway with or without me, and start doing more to get accurate materials and descriptions out there. The history of ME just became the starting point of the history of SEID.

    The research is going to iron out the differences. It horrifies me to think of going on any more with people falling through the cracks. Let's put the fuel on the fire most likely to get us away from that faster.

    You are asking for support. Frankly, I have issues with any organization that refers to its objectives as demands. Is there a better word?
     
    Last edited: Feb 26, 2015
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  12. Sean

    Sean Senior Member

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    I think it is a serious mistake to completely reject the IOM report.

    It is one thing to constructively criticise any significant shortcomings in this report and ask that they be improved (and suggest how to do so). But to completely reject the report is counter-productive. By any standard this a solid science based document, that could work well to our advantage.

    This report is a stepping stone, not the final destination. Its purpose is to break the gridlock and allow things to move forward, and as such it is as much a political document as a scientific one. And there is nothing wrong with that. It is the political front where we have been losing, not the scientific or moral ones, and it is the political front where we needed an opening. The IOM report has given us that (hopefully in conjunction with the final P2P report, due soon).

    The most important thing we needed from these two reports, besides basic recognition of the problem, was a major reorientation away from psychosocial and toward biophysical research, and the IOM has done that, and the P2P seems likely to, far as I can tell.

    Things are starting to change rapidly in this field of medicine, and the prizes go to those who can ride the wave of change.
     
  13. Sasha

    Sasha Fine, thank you

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    Hi Tom! Same here.

    Thanks for making such a kind post, Tom. It has been paining me to have to raise questions about what one of our advocacy groups is doing and I hope it's clear that I'm doing it partly in the hope that MEAdvocacy.org will develop in a good way. What I'm seeing at the moment raises a lot of questions for me.

    I've mentioned my concerns about MEAd's (saving myself some typing there) failure to survey its own membership for its views since the report came out but I've been thinking about this overnight and my main concern is that MEAd may well be a small faction with a megaphone that has managed to get into mainstream media with a message that most patients would see as being against their interests.

    When MEAd started out, it did so on what might well have been a majority platform - opposing the IOM process - in anticipation that we were going to get a terrible report. If things had been as many expected, I think you'd have the backing now of most of the community.

    Instead, the report has surprised and pleased many - possibly most - patients. It's my belief that MEAd now finds itself representing the views of a minority faction but hasn't thought through whether it's right to go public and act against what the majority of patients see as their interests.

    I think that's a serious problem for MEAd and for all of us.

    You ask people to be patient with MEAd but in the meantime, MEAd is rushing ahead to grab airtime for its views. I'd like to see MEAd doing some serious thinking about how the landscape has changed and how it's likely to play out for our whole community if it pursues this line.

    I can see from your posts that you're listening, Tom, and I'm glad that you'll take the views on this thread back to the committee. I hope that a bunker mentality isn't developing, which would be a very easy thing to happen when people feel beleaguered by criticism.

    Thanks again for your posts.
     
  14. DanME

    DanME Senior Member

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    Hi,

    I just have to say, that I feel disappointed and think the rejection of the IOM report is serious mistake.

    Before the IOM report was published I was quite scepitical about the outcome and ready for the worst. But the worst didn't happen. Quite to the contrary, I think most of the IOM report is excellent and a huge step forward. You can already see, how we are able to give the psych lobby a hard time with statements from the IOM report.

    So when I donated to the MEAdvocay, I didn't think, they would feel the need to lobby against the IOM report under all circumstances. Also I think, the Washington Post Article gave the impression that the majority of patients is against the new name and the report, which is just not true, it would have been much better, if it had specifically stated that the MEAdvocacy Group is against the new report.

    I am sorry, but I won't continue my support.
     
  15. OneWaySurvival

    OneWaySurvival Senior Member

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    Question for those who felt betrayed, misled or unhappy with either MEAd or the stance it took in the WP article:

    Would it change how you feel about it if:
    1) A careful polling of donors/members/broader community about potential responses to the IOM report, rather than informal communications and observations on the part of a group of advocates had gone into the decision to stick to it's original pre-IOM goals?
    2) Here is how the article concluded: "We at MEAdvocacy.org call for rejection of the IOM report." Would it change how you feel about it if it ended with "MEAdvocacy.org rejects the IOM report in it's current form."

    Thanks for your comments.
     
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  16. Aidan Walsh

    Aidan Walsh

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    Perfect name for this illness 'Chronic Internal Ionisation Radiation Injuries Disease(s)' more than one Radiation Isotopes involved here with 'broken cromosones/translocations' all 15 patients of a Cohort are urine Positives thanks to Gail Kansky's team...This is not a viral or bacterial illness it is Radiation Sickness which explains the total neglect & decades of cover ups I don't have CFS nor M.E. nor so called Lyme I refuse to be 'labelled' by anyone & now refuse their new name how could they ever say Disease if the causes(s) have not been replicated the Russians call this Chronic Radiation Disease...Thyroid issues as a result of these Isotopes...Want a Cure publish the truth once & for all...
     
  17. Sasha

    Sasha Fine, thank you

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    Hi again Tom, and thanks for taking the concerns being raised here seriously. An advocacy group that represents the majority of patients could be a huge asset and it's a pity that MEAd is having to find its feet at such a difficult and divisive time.

    Short answer, yes! I think you need to be polling your members since they're paying your bills but as I said above, my concern at the moment is that the wish to reject the IOM report may be the view of a minority faction of the patient-community overall. So if you push that view in the media, I'd question whether that's the right thing to do and I'd expect you to get a lot of very public pushback from other patients who disagree with you. A divided voice is no voice and that's in nobody's interests.

    The devil would be in the detail, though. You'd need a bunch of response options that everyone could agree are phrased fairly and that cover the full range of options that anyone might want. I don't think you could draw up those questions on your own, because all of us are blind to our own biases to at least some degree: I think you would need help from people with different views from your own (I hope you would get that help here, for instance).

    It would also be crucial to disseminate the poll widely - including on Phoenix Rising, via Co-Cure and all the usual main channels to reach patients. I wish I knew how representative a sample of patients that would be. My worry would be that an established online community appears to have formed around the ME/ICC issue who could quickly mobilise to flood a poll and influence the results out of all proportion. I wonder what others think of this.

    That wouldn't change things for me. I think the report should be welcomed with improvements suggested rather than rejected with improvements suggested.

    This whole issue raises a lot of interesting issues about how an adocacy organisation should operate in such a long-traumatised and divided community.

    I posted recently about the maximum-consensus technique (used in controversial areas where action is needed). What you do is identify the things on which you do agree. That's your maximum possible consensus, and you use it to take productive action based on that consensus. You don't try to increase the consensus, and that's a crucial point. You identify it, and act on it.

    I think we could all agree that we want to push for more biomedical funding, for instance: perhaps at the moment that's our maximum consensus. Perhaps that's something that MEAd could push for in the media and that all patients could get behind.

    I'd like to know what others think but in the meantime, thanks again, Tom.
     
  18. ballard

    ballard Senior Member

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    I made the mistake of donating money to ME Advocacy, and I'm afraid that I am now being counted as one of your 800 supporters. I would like to make it clear that I no longer support your activities.

    The unfortunate Washington Post article was the tipping point for me.

    The IOM report has the potential to move us forward. I urge you to support it.
     
  19. SOC

    SOC Senior Member

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    I appreciate that you are trying to address the concerns expressed here, Tom. I think that's critical for an advocacy group trying to represent all, or at least the vast majority, of patients.

    @Sasha covered most of the important points, so count me as in agreement with her post above, with a few extra points added.
    I have serious reservations about any kind of non-scientific, online poll. It's impossible to construct one that doesn't contain bias of some form. It could be in the way the questions are phrased -- intentionally or not. It's extremely difficult to construct an unbiased question set when you have an opinion on the matter yourself. Bias also arises in where the poll is advertised. It's likely the majority of patients are not active on even the main few internet forums, so an online poll may never get to the attention of the majority of patients.

    Finally, and probably the worst problem, is selection bias. Online polls do not have randomized selection of participants. The answers are naturally skewed by the fact that people who feel the strongest are the most likely to participate in the poll. It would be far too easy for any group with a strong bias in one direction to flood the poll. It can make a minority opinion look like a majority opinion. You'd have no idea what your data actually means -- do more people approve of the IOM report, or did more people who approve of the report feel strongly enough about it to go to your poll and answer it?

    Frankly, I don't know how you can figure out what the majority opinion is on this matter, barring contracting a knowledgeable, unbiased, scientific organization to construct a true scientific poll -- which would be prohibitively expensive.

    No, that wouldn't help at all. Rejection of the IOM report is not acceptable. It leaves us with Fukuda and CFS, which is worse by any standard. I could accept the position that there are many points for discussion and improvement in the IOM report.

    I think MEAdvocacy needs to accept that many patients (and former donors) feel betrayed by the WP article. Betrayal involves a loss of trust. That isn't repaired overnight, or by simple apologies (not suggesting you should do that, just making the point), or by statements like "We'll be different in the future". Trust returns when you prove, through your actions over an extended period of time, that trust in you is again warranted. In the meantime, you have to accept the consequences of that lost trust and continue to move forward as best you can.

    If MEAdvocacy really wants to represent the patient population in general, then Sasha's maximum consensus plan sounds like the wisest path. Give up on fighting issues that are controversial within the patient population and stick to positions that we can all agree on, like substantially increasing funding for biomedical research.

    That isn't to say that MEAdvocacy should try to represent the patient population overall. It is perfectly reasonable, imo, to represent some subset of the population. But if you do so, it is critically important that you make clear to everyone that you do NOT represent all patients and that the subgroup you do represent has very different views on the topics in question than significant other segments of the population.
     
  20. Sasha

    Sasha Fine, thank you

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    I've got to admit that even though I was the one advocating that MEAd should canvas the opinion of the community, I can't think of a way of doing it, with the resources that we have, to produce a poll whose answers we can trust. That's disappointing. I agree with @SOC about the various biases (not least of which is our inability to reach the vast majority of patients who don't hang out in our forums or on the various FB pages).

    If I were MEAd and wanted to do something that wouldn't have my own community fighting against me, I'd go for the funding issue.

    Anyway, those are my thoughts at the moment and I hope others will weigh in.

    It's great that Tom is here listening and trying to address the issues. It must be hard for MEAd to hear criticism when they were expecting support and it takes courage to enter into constructive debate at such a time.
     

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