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MEAdvocacy.org Update and a Call for Continued Support

Gabby Klein reports on news and updates from MEadvocacy.org … 

I have tried raising money by asking for it, and by not asking for it. I always got more by asking for it.”- Millard Full

wendy-ME-Advocacy-a

ME Advocacy has been very busy implementing new projects and are seeking your continued support for their upcoming projects.

Thank you for your support of MEadvocacy.org. Because of your efforts, they have been able to get their PR project off the ground and have been busy implementing a wide range of projects outlined below.

We have seen in the past couple of weeks with the IOM roll out and subsequent media blitz just how important our image in the media is.

Some of the comments on articles have been extremely disturbing.  We need to combat this negative slant about our disease.  Please take the time to read the updates and continue your generous support for the next month’s projects.

Here is an update on the work of our PR firm from Crowds On Demand CEO, Adam Swart:

Goal #1: Press Coverage 

We have contacted dozens of heath reporters regarding the IOM meeting. We are currently pitching these outlets in regards to writing a human interest story discussing patients’ experiences, why the new name is problematic and why despite the fact that the IOM meeting was a good first step, adjustments are needed for it to become accepted by both the patient and medical communities.

Goal #2: Presence at Key Events

Picketers were present at the Opening Day of the new Congress in January. Moreover, we had a spokesperson speak on our behalf and deliver remarks and questions at the IOM Meeting on February 10th, 2015. A photograph of Wendy, our spokesperson, entering the meeting is at the top of this article. As well, you can see her ask two of our questions at about 47 minutes into the IOM meeting video.

Goal #3: Lobbying Efforts

We are planning a Day of Action in mid-March to capitalize on the IOM report which will include demonstrators around the Capitol office buildings and lobby visits with members of Congress.

Goal #4: Increased Awareness

The media coverage we received is complemented by radio ads running in markets across the United States highlighting the severity of the condition and the need for a comprehensive solution. In the aftermath of the IOM report, these ads will focus more on the need to research a cure, and for more substantive action on the issue.

Goal #5: Going-Forward List of Patient Demands

We are putting together a list of five demands for dealing with the disease going forward again capitalizing on the IOM Report. Those include among others, substantial funding to research a cure. This list of demands will be widely circulated to members of the media and posted on strategic blogs.
# # #​
We are fundraising as we go along, so if you want this campaign to continue past February, we need your donations now! Our goal is an additional $4100 for a total of $15,000 on the leaderboard by February 27, 2015.

 Please donate to MEadvocacy.org here.

'I was completely lost and in the dark before I found this website. I can never express what this place means to me.' Phoenix Rising forum member


 

 

 

 

 

{ 75 comments… add one }

  • dancingstarheart February 23, 2015, 11:30 pm

    I thought the questions proposed my the MEadvocacy representative, Wendy, provided some interesting insight behind some panel members personal opinion on nature of the disease. I think it also precipitated the IOM to shut down comments rather early. Only one comment was taken from the web after Wendy's questions, and then the Q&A was prematurely stopped even though there were several unanswered questions in the queue that I know of personally. There may have been many more.

  • Wally February 24, 2015, 1:55 am
    dancingstarheart

    I thought the questions proposed my the MEadvocacy representative, Wendy, provided some interesting insight behind some panel members personal opinion on nature of the disease. I think it also precipitated the IOM to shut down comments rather early. Only one comment was taken from the web after Wendy's questions, and then the Q&A was prematurely stopped even though there were several unanswered questions in the queue that I know of personally. There may have been many more.

    Yes, I thought it was very odd that the Q&A stopped early, especially because I had my questions acknowledged as being in the queue. I called the ME/CFS I.O.M. Committee phone line and left a message inquiring as to what happened and asked if they would be addressing those unanswered questions via the ME/CFS I.O.M. website. No return call has been received. :( I have talked to the staff for the ME/CFS I.O.M. Committee via this telephone number before and they always answered the phone or promptly returned my call. Not sure why this time I have not received a response? Moving on to e-mail to see if a written communication will illicit a response. :rolleyes:

    Not to take this thread too far off topic, I will bring a comment back to the main subject of the original post.

    I just donated to the MEadvocacy.org PR campaign and I am hoping that others might join in as well, so we can try to do something different than has been tried before with patient advocacy efforts. The clock is ticking (donations are needed by Friday, Feb. 27th). We may never get another opportunity like this again to grab some serious media attention and keep the ball rolling up to the top of the "Hill".

    https://meadvocacy.nationbuilder.com/donatepr

    About ME Advocacy.org
    ME Advocacy.org is a project of May12.org. As May12.org is a 501(c)(3) not-for-profit corporation, all donations are tax deductible.

    Both sites are run by patient volunteers, with none of the waste on salaries, buildings, and overhead associated with the large patient organizations. We are not affiliated with any government agency, and operate independently to enhance and support the campaigns already put in place by our patient advocates.


  • snowathlete February 24, 2015, 12:05 pm

    Thanks Gabby, for providing this update .

    Do you know more about Goal #3? What's the aim, the message(s), of this lobbying exactly?

    #4. The radio ads sound great too, but again, do you know if there is more info on this? Perhaps a copy to be made available on the site? So that people know what it is being said?

    These details would help me decide whether to lend my support or not.

  • caledonia February 24, 2015, 2:23 pm

    Hi all, I have posted a further blog post explaining our plan moving forward.
    http://www.meadvocacy.org/now_is_the_time_to_stand_up_for_m_e

  • Sasha February 24, 2015, 2:35 pm
    caledonia

    Hi all, I have posted a further blog post explaining our plan moving forward.
    http://www.meadvocacy.org/now_is_the_time_to_stand_up_for_m_e

    MEAdvocacy

    After much consideration of the IOM report, and listening to the ME community, we have decided that our plan going forward is to stay the course with our original goals and focus on getting myalgic encephalomyelitis (ME) officially recognized as its own distinct disease (separate from chronic fatigue syndrome/systemic exertion intolerance disease (CFS/SEID)), with a true ME definition, (the International Consensus Criteria or better), under the ICD-10-CM code G93.3. Note that we are no longer asking for the Canadian Consensus Criteria – we believe we should be advocating for the most current and best definition that is available.

    What has MEAdvocacy done to ensure that this goal reflects the wishes of the patient community?

  • snowathlete February 24, 2015, 4:46 pm
    caledonia

    Hi all, I have posted a further blog post explaining our plan moving forward.
    http://www.meadvocacy.org/now_is_the_time_to_stand_up_for_m_e

    Thanks for providing that information; it was very helpful.

    I find it disapointing that the group's focus remains on trying to get myalgic encephalomyelitis recognized as its own distinct disease – separate from SEID. Unfortunately I don't feel these endeveours will prove fruitful or beneficial to the community.

    I also don't share the groups conclusions regarding the IOM report, and your decision to continue an opposing stance having now seen the report.

    So, whereas I do feel the community would benefit greatly from an organized advocacy group with a moderate and progressive ideology, I am afraid I no longer see you as that kind of group, so I have to withdraw my support.

  • Nielk February 24, 2015, 5:02 pm
    Sasha

    What has MEAdvocacy done to ensure that this goal reflects the wishes of the patient community?

    As you have bolded, the comment stated that they have listened to the ME community – meaning the patient community that consider their disease as ME not CFS nor SEID. That community exists and is quiet large. It mainly consists of severely effected patients who have been totally neglected as far as any research and studies. They do have a voice and needs. They feel that the IOM criteria whose first symptom features fatigue, is not describing their own illness.

    They have a right to voice and fight for what they believe in just as much as the group who are embracing the IOM report and criteria.

  • Ember February 24, 2015, 9:59 pm

    Many thanks to our volunteers: Mary Kindel, Joni Comstock, Anne Keith, Kathryn Stephens, Gabby Klein, Robin Funk, Tom Jarrett, Colleen Steckel, Lisa Petrison, Tracey Ann-Tempel Smith, Polly Gilreath, Jerrold Spinhirne, and Mindy Kitei.:balloons:

  • Sasha February 25, 2015, 9:30 am
    Nielk

    As you have bolded, the comment stated that they have listened to the ME community – meaning the patient community that consider their disease as ME not CFS nor SEID. That community exists and is quiet large. It mainly consists of severely effected patients who have been totally neglected as far as any research and studies. They do have a voice and needs. They feel that the IOM criteria whose first symptom features fatigue, is not describing their own illness.

    They have a right to voice and fight for what they believe in just as much as the group who are embracing the IOM report and criteria.

    I'm hugely surprised by that definition of 'the ME community'. I think that most people who hear that term would take it to mean, 'the community of people diagnosed with ME' rather than 'people who want their diagnosis to remain as ME'.

    If MEAdvocacy are going to use the term 'ME community' in such a peculiar way, I hope that they're going to make it clear in the media that they don't represent the community of people with a diagnosis of ME.

    That is, I hope they're not going to try to claim that they represent our community as a whole.

    Nobody (I hope) wants to stop anyone from having their say, but I hope we're not going to see such misleading wording being used to falsely bolster one particular view. I hope that MEAdvocacy don't want that either and will be very careful in their phrasing.

  • Nielk February 25, 2015, 9:44 am
    Sasha

    I'm hugely surprised by that definition of 'the ME community'. I think that most people who hear that term would take it to mean, 'the community of people diagnosed with ME' rather than 'people who want their diagnosis to remain as ME'.

    In the US, there is no official diagnosis of ME, yet. WHat I meant was the patients who fulfill the criteria of ME-ICC.

    Sasha

    That is, I hope they're not going to try to claim that they represent our community as a whole.

    I am sure that they will properly advocate for us as a group of advocates and patients.

    Sasha

    Nobody (I hope) wants to stop anyone from having their say, but I hope we're not going to see such misleading wording being used to falsely bolster one particular view. I hope that MEAdvocacy don't want that either and will be very careful in their phrasing.

    I would hope as well that the patients and advocates who are proponents of the IOM report, criteria and name take care as well not that they are not speaking for the entire community.

  • Sasha February 25, 2015, 10:26 am
    Nielk

    In the US, there is no official diagnosis of ME, yet. WHat I meant was the patients who fulfill the criteria of ME-ICC.

    But I still think that 'ME community' is going to be read as 'patients with ME', not 'patients who want to keep the diagnosis of ME'. I hope MEAdvocacy is going to take a 'we are a group of patients, mostly severely affected, who would like to see X, Y and Z' kind of approach, rather than claiming to represent all ME patients or all severe patients. Wording is going to be extremely important.

    I would hope as well that the patients and advocates who are proponents of the IOM report, criteria and name take care as well not that they are not speaking for the entire community.

    I agree that that's also important. It's easy to fall into the error of believing that our own view is the view of the vast majority, when in fact it's just that our human nature has led us to surround ourselves with like-minded people and seek out confirming viewpoints (and I include myself in this).

    Looking forward to seeing how this develops but in the meantime I'm grateful for the clarification on MEAdvocacy's goals.

  • Kati February 25, 2015, 11:25 am

    I have been skeptical that ME Advocacy represented patients, all patients interests. It sounds like I am right.

    ME advocacy is taking a wrong turn here. Spending energy to protest the work of our experts in working with thee very reputable IOM is a big mistake.

    Promoting the MEICC, which has never picked up in the medical community, is a big mistake and will only be confusing for congress if it gets there.

    ME terminology is not appropriate. It leaves neurologists disbelieved. Neurologists have never been interested in caring for us. The ME name is not accepted.

    I am withdrawing my support from ME Advocacy. They do not represent me.

    First, we must challenge the three redefinition projects, the IOM, the P2P and the CDC Multisite Study where they are weak or harmful to ME patients

    After much consideration of the IOM report, and listening to the ME community, we have decided that our plan going forward is to stay the course with our original goals and focus on getting myalgic encephalomyelitis (ME) officially recognized as its own distinct disease (separate from chronic fatigue syndrome/systemic exertion intolerance disease (CFS/SEID)), with a true ME definition, (the International Consensus Criteria or better), under the ICD-10-CM code G93.3. Note that we are no longer asking for the Canadian Consensus Criteria – we believe we should be advocating for the most current and best definition that is available

    Big mistake.

    Leveraging the IOM report in Congress and at HHS asking for money to support our experts in researching this disease is in my opinion the best way forward.

  • caledonia February 25, 2015, 11:38 am
    Sasha

    What has MEAdvocacy done to ensure that this goal reflects the wishes of the patient community?

    We have over 800 members and 4600 people who have liked, or shared on social media. We have thousands in donations. We are also following the lead of several bloggers (I'm aware that there are other bloggers with a different viewpoint).

    ME and CFS/SEID are mutually exclusive. If you like the IOM criteria, getting ME established won't change that. They are considered to be two different diseases.

  • Kati February 25, 2015, 11:49 am
    caledonia

    ME and CFS/SEID are mutually exclusive. If you like the IOM criteria, getting ME established won't change that. They are considered to be two different diseases.

    By whom? The patients?

    I am not sure Dr Montoya, Dr Klimas, Dr Kogelnik even Dr Peterson would agree.
    At this point, the science is not exactly sure either, and we won't be until we have biomarkers. In fact our experts said there wasn't sufficient research to establish subsets.

    Arguing about ME VS CFS VS SEID is pointless waste of time and money.

    Our experts are trying to get us out of the hole, through collaborating with the IOM. There is a huge opportunity for leveraging that and ask the governments for substantial funding.

    I'm not going to spend much time arguing this. I don't have energy for status quo.

  • caledonia February 25, 2015, 11:53 am
    Kati

    By whom? The patients?

    I am not sure Dr Montoya, Dr Klimas, Dr Kogelnik even Dr Peterson would agree.
    At this point, the science is not exactly sure either, and we won't be until we have biomarkers. In fact our experts said there wasn't sufficient research to establish subsets.

    Arguing about ME VS CFS VS SEID is pointless waste of time and money.

    Our experts are trying to get us out of the hole, through collaborating with the IOM. There is a huge opportunity for leveraging that and ask the governments for substantial funding.

    I'm not going to spend much time arguing this. I don't have energy for status quo.

    They are mutually exclusive in the WHO ICD-10-CM book of disease classifications and diagnosis codes – two different diseases. The IOM criteria will not change that.

  • Kati February 25, 2015, 11:54 am
    caledonia

    We have over 800 members and 4600 people who have liked, or shared on social media. We have thousands in donations. We are also following the lead of several bloggers (I'm aware that there are other bloggers with a different viewpoint).

    ME and CFS/SEID are mutually exclusive. If you like the IOM criteria, getting ME established won't change that. They are considered to be two different diseases.

    Consider that this may change as you once more changed direction. And by the way, a 'like' does not mean support, it means basically keeping up with what's happening.

  • caledonia February 25, 2015, 12:03 pm
    Kati

    Leveraging the IOM report in Congress and at HHS asking for money to support our experts in researching this disease is in my opinion the best way forward.

    There are many ways forward. We don't know which ones will pan out. Therefore we as a ME/CFS/SEID community need to do all of them.

    MEadvocacy is concentrating getting ME officially recognized. Other advocates and the CFSAC will concentrate on CFS/SEID. Directly crowdfunding research such as through the Open Medicine Institute is another.

    The bottom line is research and treatments that help people, no matter what you call this disease.

  • Sasha February 25, 2015, 12:04 pm
    caledonia

    We have over 800 members and 4600 people who have liked, or shared on social media. We have thousands in donations. We are also following the lead of several bloggers (I'm aware that there are other bloggers with a different viewpoint).

    Hi Caledonia, and thanks for your response.

    On your website, it says:

    MEAdvocacy

    After much consideration of the IOM report, and listening to the ME community, we have decided that our plan going forward is to stay the course with our original goals and focus on getting myalgic encephalomyelitis (ME) officially recognized as its own distinct disease (separate from chronic fatigue syndrome/systemic exertion intolerance disease (CFS/SEID)), with a true ME definition, (the International Consensus Criteria or better), under the ICD-10-CM code G93.3. Note that we are no longer asking for the Canadian Consensus Criteria – we believe we should be advocating for the most current and best definition that is available.

    MEAdvocacy was set up some time ago, and obviously the IOM report has only just come out. As you say above, you've only just made your plans about what to do next. The publication of the report has changed the landscape, of course: many people who dreaded the report and joined in the early days when MEAdvocacy was challenging the process by which the IOM was awarded its contract (widely unpopular with patients) might have been pleasantly surprised by the report when it was published. Certainly that seems to have been the experience of many here on PR.

    How do you know that your 800 members and the 4600 people who liked/shared you on social media approve of your post-report stance?

    Do you have any way of surveying their opinion?

    Are you at all concerned that people who supported you in opposing the IOM process might actually be in favour of the report itself, now that they've seen it?

    I don't mean to hammer you with questions and I hope it's not coming across like that but I think that these are important questions for any group that is trying to represent even its own members, let alone anyone else.

    MEAdvocacy has a megaphone now, paid for by people who came on board before they knew what the report would say and what they would think about it. I think there's a possibility that they might not all support your current direction.

    ME and CFS/SEID are mutually exclusive. If you like the IOM criteria, getting ME established won't change that. They are considered to be two different diseases.

    I don't understand your point (sorry!) but let's not get bogged down in that here – there are plenty of other threads for that topic.

  • Blue February 25, 2015, 12:08 pm
    caledonia

    We have thousands in donations

    I can only speak for myself: I donated in December expecting nothing good from the IOM and therefore liked the idea of a PR campaign.

    Clearly to many the IOM report hasn't been bad but quite the opposite. So with this new situation I don't agree with the messages MEadvocacy wants to get out in response to the report.

    So having donated months ago doesn't mean necessarily consent to your current approach.

  • Kati February 25, 2015, 12:13 pm

    The survey supported by ME Advocacy is biased. Their answer choices veers towards what they want to prove, and do not aim at seeing all viewpoint. For instance, more than one question I would have answered none of the above, starting with question 1 (1. Please click the box below that best describes your opinion about the use of SEID (systemic exertion intolerance disease) as the new name for this disease) My best answer is that it is an acceptable placeholder until more is known about the illness, biomarkers and pathology, however there is no such answer, not even an 'other' option to leave a comment for this )

    The fact that patients may not want to answer your questionnaire means that your results will be skewed, as more people dissatisfied with the report will answer.

  • caledonia February 25, 2015, 12:16 pm
    Sasha

    On your website, it says:

    How do you know that your 800 members and the 4600 people who liked/shared you on social media approve of your post-report stance?

    Do you have any way of surveying their opinion?

    Are you at all concerned that people who supported you in opposing the IOM process might actually be in favour of the report itself, now that they've seen it?

    I don't mean to hammer you with questions and I hope it's not coming across like that but I think that these are important questions for any group that is trying to represent even its own members, let alone anyone else.

    MEAdvocacy has a megaphone now, paid for by people who came on board before they knew what the report would say and what they would think about it. I think there's a possibility that they might not all support your current direction.

    I don't understand your point (sorry!) but let's not get bogged down in that here – there are plenty of other threads for that topic.

    ME and CFS listed as two different diseases in the ICD-10-CM disease classification and diagnostic code. If you have one, you can't have the other. We are critiquing the IOM criteria as they do not look like they will be good for severe ME patients, therefore we need to establish ME separately to get severe ME patients the help they need.

    In a perfect world, there would not be this confusion and we could just get on with research funding – thank you US govt. (sigh). I don't know of any other disease which has a mess like this to work through.

  • caledonia February 25, 2015, 12:25 pm
    Kati

    The survey supported by ME Advocacy is biased. Their answer choices veers towards what they want to prove, and do not aim at seeing all viewpoint. For instance, more than one question I would have answered none of the above, starting with question 1 (1. Please click the box below that best describes your opinion about the use of SEID (systemic exertion intolerance disease) as the new name for this disease) My best answer is that it is an acceptable placeholder until more is known about the illness, biomarkers and pathology, however there is no such answer, not even an 'other' option to leave a comment for this )

    The fact that patients may not want to answer your questionnaire means that your results will be skewed, as more people dissatisfied with the report will answer.

    The survey is split tested to avoid bias – half the people get one which asks positive questions about SEID, the other one gets negative questions about SEID.
    For question #1, it sounds like you would want to answer that the name is good.
    There is a comment box on the last screen where you could put your comment about the placeholder.

  • Sasha February 25, 2015, 12:31 pm
    caledonia

    ME and CFS listed as two different diseases in the ICD-10-CM disease classification and diagnostic code. If you have one, you can't have the other. We are critiquing the IOM criteria as they do not look like they will be good for severe ME patients, therefore we need to establish ME separately to get severe ME patients the help they need.

    In a perfect world, there would not be this confusion and we could just get on with research funding – thank you US govt. (sigh). I don't know of any other disease which has a mess like this to work through.

    Thanks for your reply, but my main concern was the questions that I led on:

    How do you know that your 800 members and the 4600 people who liked/shared you on social media approve of your post-report stance?

    Do you have any way of surveying their opinion?

    Are you at all concerned that people who supported you in opposing the IOM process might actually be in favour of the report itself, now that they've seen it?​

    Since I started to write that post, I see two people here have said that they donated to MEAdvocacy in the past but don't support its current line. I do think this is an important issue.

  • Kati February 25, 2015, 12:34 pm
    caledonia

    ME and CFS listed as two different diseases in the ICD-10-CM disease classification and diagnostic code. If you have one, you can't have the other. We are critiquing the IOM criteria as they do not look like they will be good for severe ME patients, therefore we need to establish ME separately to get severe ME patients the help they need.

    In a perfect world, there would not be this confusion and we could just get on with research funding – thank you US govt. (sigh). I don't know of any other disease which has a mess like this to work through.

    caledonia

    The survey is split tested to avoid bias – half the people get one which asks positive questions about SEID, the other one gets negative questions about SEID.
    For question #1, it sounds like you would want to answer that the name is good.
    There is a comment box on the last screen where you could put your comment about the placeholder.

    @caledonia you cannot tell me what to answer to your own survey. In asking for a survey you are asking for people's opinions but in this case, you are basically on a mission to prove patients are dissatisfied. It is obvious

    My answer was none of the above, there is no room for that. I prefer not to answer this kind of survey.

  • caledonia February 25, 2015, 12:37 pm
    Blue

    I can only speak for myself: I donated in December expecting nothing good from the IOM and therefore liked the idea of a PR campaign.

    Clearly to many the IOM report hasn't been bad but quite the opposite. So with this new situation I don't agree with the messages MEadvocacy wants to get out in response to the report.

    So having donated months ago doesn't mean necessarily consent to your current approach.

    I really wish that there could be an independent study of the IOM criteria used on real doctors and real patients. Then we could know for sure what to support or not support. I would rather see something like this sooner rather than later. I think it was 10 or 15 years post Fukuda that we figured out it was a loose criteria and not producing good research.

  • Kati February 25, 2015, 12:40 pm
    caledonia

    I really wish that there could be an independent study of the IOM criteria used on real doctors and real patients. Then we could know for sure what to support or not support. I would rather see something like this sooner rather than later. I think it was 10 or 15 years post Fukuda that we figured out it was a loose criteria and not producing good research.

    But we are 2 weeks post publication! Give Dr Jason (and others) the time to drink his coffee :rolleyes:

  • caledonia February 25, 2015, 12:48 pm
    Sasha

    Thanks for your reply, but my main concern was the questions that I led on:

    How do you know that your 800 members and the 4600 people who liked/shared you on social media approve of your post-report stance?

    Do you have any way of surveying their opinion?

    Are you at all concerned that people who supported you in opposing the IOM process might actually be in favour of the report itself, now that they've seen it?​

    Since I started to write that post, I see two people here have said that they donated to MEAdvocacy in the past but don't support its current line. I do think this is an important issue.

    I don't know if we can survey just the members or not is the problem. It's something I would have to research. We'll also be able to tell by how donations go.

  • Sasha February 25, 2015, 12:56 pm
    caledonia

    I don't know if we can survey just the members or not is the problem. It's something I would have to research. We'll also be able to tell by how donations go.

    By then it will be too late. It's already too late, given that MEAdvocacy's piece just appeared in the Washington Post blog calling for the rejection of the IOM report:

    http://www.washingtonpost.com/news/…ronic-fatigue-syndrome-report-doesnt-help-us/

    Didn't you want to know whether your members wanted to reject the IOM report before you went public with that opinion somewhere as visible as the Washington Post?

    Aren't you concerned that many of your members might be against this and that you may have acted against their interests, as they would see it?

  • snowathlete February 25, 2015, 1:22 pm
    caledonia

    ME and CFS/SEID are mutually exclusive.

    If requested, are you going to refund the donations made before you made this important distinction clear? This distinction certaintly was not made clear when you launched and some people may feel quite upset about that.

  • SOC February 25, 2015, 1:23 pm
    caledonia

    ME and CFS/SEID are mutually exclusive. If you like the IOM criteria, getting ME established won't change that. They are considered to be two different diseases.

    caledonia

    The bottom line is research and treatments that help people, no matter what you call this disease.

    :confused: Now I'm really confused by your stance. Is it "this disease" implying we have the same condition but are using different names, or as you say, "ME and CFS/SEID are mutually exclusive."?

    If the two illnesses are mutually exclusive, then research into one does not apply to research into the other. We are no longer in the same funding stream — donations to research SEID should not be used for ME research and vice versa. We are no longer a team working together to get more research into "this disease" because, according to you, SEID and ME are mutually exclusive diseases. By that argument, MEAdvocacy is not at all representing the general ME/CFS patient population, but instead a group of people with an entirely different disease than the majority of the ME/CFS population as we see it now.

    To add to the confusion, since many people meet both the ICC and the IOM criteria, I can't figure out how the two diseases are mutually exclusive. If they're mutually exclusive, you can't — by definition — have both.

  • Sidereal February 25, 2015, 1:37 pm

    There is no evidence that ME and SEID/CFS are separate and mutually exclusive diseases. We have no idea what ME is, whether it's one or 100 diseases. ICD classifications do not constitute evidence of anything; they're a committee decision not based on science.

    The ICC criteria for myalgic encephalomyelitis have been universally rejected and/or ignored by the wider medical community because they make a number of unsupported or tenuously supported assertions, starting with the inaccurate name. Neurology is never going to accept this name and continuing to insist on it is counterproductive in my opinion.

  • slayadragon February 25, 2015, 2:32 pm
    Kati

    The survey supported by ME Advocacy is biased. Their answer choices veers towards what they want to prove, and do not aim at seeing all viewpoint. For instance, more than one question I would have answered none of the above, starting with question 1 (1. Please click the box below that best describes your opinion about the use of SEID (systemic exertion intolerance disease) as the new name for this disease) My best answer is that it is an acceptable placeholder until more is known about the illness, biomarkers and pathology, however there is no such answer, not even an 'other' option to leave a comment for this )

    The fact that patients may not want to answer your questionnaire means that your results will be skewed, as more people dissatisfied with the report will answer.

    If you believe the name is an "acceptable placeholder," then that would seem to suggest that you do not think it is a bad name and you also do not think it is a good name. Otherwise you would be saying so.

    Therefore, if I were in your position, I would be stating that I thought it was a "so-so" name and then writing in the comments that I thought that it should be adopted anyway.

    Best,

    Lisa Petrison, Ph.D.
    Paradigm Change

  • SOC February 25, 2015, 2:49 pm

    I wonder what the future will look like if MEAdvocacy achieves their goal of getting ME recognized as an entirely different, "mutually exclusive" illness from HHS/NIH-accepted SEID?

    What will Lipkin, Klimas, the Lights, Montoya, and all the other top researchers be studying — SEID with US gov't recognition and funding, or ME with no government recognition or funding? Where will most private patient donations go — to top researchers using the gov't defined SEID or…. who? It's tough to get published if you don't use an accepted disease definition. How many researchers are going to take that risk? Sure, many might study the more severe group as a subset of SEID, but not if it is insisted that it's not a subset of SEID, but an entirely different disease.

    There seems to be a lot of deliberate metaphorical body damage going on here (shooting selves in the foot, cutting off noses to spite faces).

  • Nielk February 25, 2015, 2:59 pm
    SOC

    I wonder what the future will look like if MEAdvocacy achieves their goal of getting ME recognized as an entirely different, "mutually exclusive" illness from HHS/NIH-accepted SEID?

    What will Lipkin, Klimas, the Lights, Montoya, and all the other top researchers be studying — SEID with US gov't recognition and funding, or ME with no government recognition or funding? Where will most private patient donations go — to top researchers using the gov't defined SEID or…. who? It's tough to get published if you don't use an accepted disease definition. How many researchers are going to take that risk? Sure, many might study the more severe group as a subset of SEID, but not if it is insisted that it's not a subset of SEID, but an entirely different disease.

    There seems to be a lot of deliberate metaphorical body damage going on here (shooting selves in the foot, cutting off noses to spite faces).

    Do you think that it is right that the 25% severest have been totally neglected for 30-40 years? No studies, no research, no care? Many have ad enough and have decided to end their lives. I think that time has come to put them at the front of the attention. I want to see studies on them. That is where we are going to find the true biomarkers.

  • snowathlete February 25, 2015, 3:06 pm
    SOC

    I wonder what the future will look like if MEAdvocacy achieves their goal of getting ME recognized as an entirely different, "mutually exclusive" illness from HHS/NIH-accepted SEID?

    What will Lipkin, Klimas, the Lights, Montoya, and all the other top researchers be studying — SEID with US gov't recognition and funding, or ME with no government recognition or funding? Where will most private patient donations go — to top researchers using the gov't defined SEID or…. who? It's tough to get published if you don't use an accepted disease definition. How many researchers are going to take that risk? Sure, many might study the more severe group as a subset of SEID, but not if it is insisted that it's not a subset of SEID, but an entirely different disease.

    There seems to be a lot of deliberate metaphorical body damage going on here (shooting selves in the foot, cutting off noses to spite faces).

    I agree with you, though I think some people don't percieve it like that.

    Nielk

    Do you think that it is right that the 25% severest have been totally neglected for 30-40 years? No studies, no research, no care? Many have ad enough and have decided to end their lives. I think that time has come to put them at the front of the attention. I want to see studies on them. That is where we are going to find the true biomarkers.

    There seems to have been a misconception created somewhere, that those with true ME as being talked about here, have more severe disease. This is not the case. You can have SEID as proposed by the IOM and absolutely have very severe disease. At least one of the IOM panel has a child with severe disease and yet they seemed happy to suggest SEID. And I am sure that there are researchers who plan to study these severely affected patients with SEID.

  • nandixon February 25, 2015, 3:33 pm
    snowathlete

    And I am sure that there are researchers who plan to study these severely affected patients with SEID.

    Yes, more detail on this link here:
    Please consider donating to OMF's study of severely ill ME/CFS Patients

  • OneWaySurvival February 25, 2015, 3:35 pm
    Kati

    I have been skeptical that ME Advocacy represented patients, all patients interests. It sounds like I am right.

    I am withdrawing my support from ME Advocacy. They do not represent me.

    Leveraging the IOM report in Congress and at HHS asking for money to support our experts in researching this disease is in my opinion the best way forward.

    I am heartbroken that division is happening among friends and fellow sufferers.

    @Kati , I don't mean to pick on your post, I could have picked from several posts on this thread to show the fracturing that is occurring among us. You make several good points and your thoughts on the best way forward are as much worth considering as the next patient's.

    MEadvocacy.org may have lost your financial support for now or maybe for good, but I encourage you to stay in the discussion to offer your ideas on how we can best do advocacy as a community right now.

    As the article states, I (Tom Jarrett) am one of the patients participating in the MEadvocacy.org Working Group. I have been trying to take in all the various opinions about the IOM report as well as reading the report itself. I found it to be much more serious-sounding and credible than the P2P report (as you would expect with Klimas, Davis, Bateman, etc. compared to a panel of 5 non-experts), and hopefully much good will come from it in way of HHS stepping up to the plate and funding research. Where it gets tricky for me is whether the new SEID definition will continue the dangerous tradition of skewed research, far far away from severe patients, and leading to a dead-end or bottomless pit. Research that is ripe for pollution with a definition that lacks exclusionary terms. And a definition that upsettingly removes pain as a core feature even though a huge majority of patients (98% in one UK study cited) experience pain. What if the IOM report makes it even more difficult in the future for patients who need pain meds for their intractable pain to get prescriptions?

    The above potential pitfalls with the new criteria caused me to want to proceed with caution regarding the IOM report, and the obvious controversy over the name caused me for a time to want to advocate for Ramsay's Disease as a potentially unifying intl. name because it looked as if the IOM report was specifically written in a way that would dismiss or bury M.E. forever by replacing it with SEID, but then it was the interview with Dr. Lucinda Bateman in the ME Global Chronicle (Feb. Issue), after the IOM report release, that clinched it for me that there was another path emerging that could aid advocacy as well as complicate matters.

    In my opinion, MEadvocacy.org's stance is very much compatible with Dr. Bateman's comments, and as one who was on the IOM panel itself, her comments carry much weight:

    Dr. Lucinda Bateman:

    I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.

    Dr. Bateman also said:

    The committee felt it was inappropriate to use a name already linked to alternate diagnostic criteria, and, that it could create even more confusion to use an existing name in more than one way. It is my opinion that the non-US me/cfs community would be even more outraged to have the IOM suggest that our new diagnostic criteria are the "new" criteria for ME when an ME definition already exists and is in broad use outside the US

    The term SEID can be applied to anyone who meets the evidence-based diagnostic criteria outlined in the report. This fact doesn't mean that other criteria are invalid. For example, it is possible that patients defined by ME criteria may prove to be a more severely ill subset of SEID. My own opinion is that everyone with illness deserves a diagnosis, not only those of a certain illness severity. These issues can and should be sorted out with well designed studies. But many of the issues will resolve as we establish better objective markers and diagnostic studies, and when longitudinal studies are done.

    When she says "These issues can and should be sorted out with well designed studies…many of the issues will resolve", that to me is when we will know which of our patient community are considered M.E. patients and which are considered SEID patients (and some will fit both definitions) – but this will not happen with the snap of the fingers. This will take years if not decades to "sort out." So, what is to be done by advocates in the meantime?

    The nearly 20 members of the MEadvocacy.org Working Group and the continuing supporters of MEadvocacy.org are not eager to see the disease M.E. walked away from by the U.S. government. If we all go lock-step along with the new SEID criteria, and support only those endeavors of the US government, it is a very real and deep concern that severe, bedridden M.E. patients along with moderate housebound patients that spend many hours laying in bed writhing in pain, will remain that way because SEID arguably does not take them into account, and the words of the 9 severe patients who wrote to the IOM in December, already ignored, will soon be forgotten.

    It will take the cooperation and collaboration of many advocates with many different views to make sure that every patient diagnosed with M.E. and/or SEID gets the help they need.

    This is a confusing time, post-IOM report, and I have yet to see any group or person that can say they "represent the views of all ME patients" – the IOM report blew up our patient community and we are still picking up the pieces. I think it is an unfair expectation for any advocate group right now to adequately represent the view of all ME and/or SEID patients. The new issues/problems/challenges/opportunities generated by the IOM are too complex for any one group to address all issues. That is why I agree with Caledonia's point about needing multiple advocacy approaches (a variety of protesting and collaboration will be required in this new era) to get patient needs seen by the public, funded by the government, researched by scientists, and treated by doctors.

    Please be patient with MEadvocacy.org (as one of several groups advocating for patients) and let's give them a chance to formulate strategies, and readjust as necessary as new information is revealed by our doctors and researchers (remember that the P2P revised report is still due which could be another can of worms) in order to generate more research, a more accurate case definition, and public awareness for those suffering with this disease(s?).

    It is actually possible for a patient advocate to support MEadvocacy.org and also want good to come from the IOM report. I would encourage people to give MEadvocacy.org a chance and I would encourage MEadvocacy to listen to all patients' points of view.

    My family is going to move forward with the KnoW M.E. Challenge. Christine and I also had a planning meeting today with a very talented local musician who has agreed to do a benefit concert for M.E. That will happen sometime this spring, hopefully leading up to the International M.E. awareness day on May 12.

    Donations from that campaign and the benefit concert are going to both MEadvocacy.org as well as the End ME/CFS project through the Open Medicine Foundation. These groups may have a different take on the IOM report as it stands right now, but if we keep our eyes on advocating for solid, biomedical research of well-defined cohorts, then we may have more in common than what we are allowing ourselves to see right now.

  • beaker February 25, 2015, 3:48 pm
    Blue

    I can only speak for myself: I donated in December expecting nothing good from the IOM and therefore liked the idea of a PR campaign.

    Clearly to many the IOM report hasn't been bad but quite the opposite. So with this new situation I don't agree with the messages MEadvocacy wants to get out in response to the report.

    So having donated months ago doesn't mean necessarily consent to your current approach.

    Me too. Now I wish I had not donated. I don't like how my money is being spent.
    Show me a criteria that someone has come up with and I meet it. I also was for the ME before we know what the IOM was going to be. I don't like the SEID name, but I'm not about to throw the proverbial baby out with the bathwater.
    Screw the name wars. I was dx'd in US during cluster outbreaks of 80's. CFS was all we have had officially in US.
    Yes, that I wanted change. But all this division now ? NO.
    I would like to promote research. Then the name issue becomes moot.

  • nandixon February 25, 2015, 3:50 pm
    caledonia

    ME and CFS/SEID are mutually exclusive. If you like the IOM criteria, getting ME established won't change that. They are considered to be two different diseases.

    caledonia

    They are mutually exclusive in the WHO ICD-10-CM book of disease classifications and diagnosis codes – two different diseases. The IOM criteria will not change that.

    caledonia

    ME and CFS listed as two different diseases in the ICD-10-CM disease classification and diagnostic code. If you have one, you can't have the other.

    You're confusing things here. The "CFS" of the ICD-10-CM does not require PEM (and is therefore not true CFS). But SEID does now require PEM, just like ME.

    Therefore, SEID and ME are not mutually exclusive.

    That would be like saying that the multiple sclerosis patients who have more symptoms than average, or more severe symptoms than average, have multiple sclerosis, but that the less affected MS patients do not. It doesn't make any sense.

  • SOC February 25, 2015, 3:53 pm
    Nielk

    Do you think that it is right that the 25% severest have been totally neglected for 30-40 years? No studies, no research, no care?

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

    Many have ad enough and have decided to end their lives. I think that time has come to put them at the front of the attention. I want to see studies on them. That is where we are going to find the true biomarkers.

    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?

  • Gingergrrl February 25, 2015, 4:03 pm
    Nielk

    Do you think that it is right that the 25% severest have been totally neglected for 30-40 years? No studies, no research, no care? Many have ad enough and have decided to end their lives. I think that time has come to put them at the front of the attention. I want to see studies on them. That is where we are going to find the true biomarkers.

    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%.

  • snowathlete February 25, 2015, 4:55 pm
    OneWaySurvival

    I am heartbroken that division is happening among friends and fellow sufferers.

    @Kati , I don't mean to pick on your post, I could have picked from several posts on this thread to show the fracturing that is occurring among us. You make several good points and your thoughts on the best way forward are as much worth considering as the next patient's.

    MEadvocacy.org may have lost your financial support for now or maybe for good, but I encourage you to stay in the discussion to offer your ideas on how we can best do advocacy as a community right now.

    As the article states, I (Tom Jarrett) am one of the patients participating in the MEadvocacy.org Working Group. I have been trying to take in all the various opinions about the IOM report as well as reading the report itself. I found it to be much more serious-sounding and credible than the P2P report (as you would expect with Klimas, Davis, Bateman, etc. compared to a panel of 5 non-experts), and hopefully much good will come from it in way of HHS stepping up to the plate and funding research. Where it gets tricky for me is whether the new SEID definition will continue the dangerous tradition of skewed research, far far away from severe patients, and leading to a dead-end or bottomless pit. Research that is ripe for pollution with a definition that lacks exclusionary terms. And a definition that upsettingly removes pain as a core feature even though a huge majority of patients (98% in one UK study cited) experience pain. What if the IOM report makes it even more difficult in the future for patients who need pain meds for their intractable pain to get prescriptions?

    The above potential pitfalls with the new criteria caused me to want to proceed with caution regarding the IOM report, and the obvious controversy over the name caused me for a time to want to advocate for Ramsay's Disease as a potentially unifying intl. name because it looked as if the IOM report was specifically written in a way that would dismiss or bury M.E. forever by replacing it with SEID, but then it was the interview with Dr. Lucinda Bateman in the ME Global Chronicle (Feb. Issue), after the IOM report release, that clinched it for me that there was another path emerging that could aid advocacy as well as complicate matters.

    In my opinion, MEadvocacy.org's stance is very much compatible with Dr. Bateman's comments, and as one who was on the IOM panel itself, her comments carry much weight:

    Dr. Bateman also said:

    When she says "These issues can and should be sorted out with well designed studies…many of the issues will resolve", that to me is when we will know which of our patient community are considered M.E. patients and which are considered SEID patients (and some will fit both definitions) – but this will not happen with the snap of the fingers. This will take years if not decades to "sort out." So, what is to be done by advocates in the meantime?

    The nearly 20 members of the MEadvocacy.org Working Group and the continuing supporters of MEadvocacy.org are not eager to see the disease M.E. walked away from by the U.S. government. If we all go lock-step along with the new SEID criteria, and support only those endeavors of the US government, it is a very real and deep concern that severe, bedridden M.E. patients along with moderate housebound patients that spend many hours laying in bed writhing in pain, will remain that way because SEID arguably does not take them into account, and the words of the 9 severe patients who wrote to the IOM in December, already ignored, will soon be forgotten.

    It will take the cooperation and collaboration of many advocates with many different views to make sure that every patient diagnosed with M.E. and/or SEID gets the help they need.

    This is a confusing time, post-IOM report, and I have yet to see any group or person that can say they "represent the views of all ME patients" – the IOM report blew up our patient community and we are still picking up the pieces. I think it is an unfair expectation for any advocate group right now to adequately represent the view of all ME and/or SEID patients. The new issues/problems/challenges/opportunities generated by the IOM are too complex for any one group to address all issues. That is why I agree with Caledonia's point about needing multiple advocacy approaches (a variety of protesting and collaboration will be required in this new era) to get patient needs seen by the public, funded by the government, researched by scientists, and treated by doctors.

    Please be patient with MEadvocacy.org (as one of several groups advocating for patients) and let's give them a chance to formulate strategies, and readjust as necessary as new information is revealed by our doctors and researchers (remember that the P2P revised report is still due which could be another can of worms) in order to generate more research, a more accurate case definition, and public awareness for those suffering with this disease(s?).

    It is actually possible for a patient advocate to support MEadvocacy.org and also want good to come from the IOM report. I would encourage people to give MEadvocacy.org a chance and I would encourage MEadvocacy to listen to all patients' points of view.

    My family is going to move forward with the KnoW M.E. Challenge. Christine and I also had a planning meeting today with a very talented local musician who has agreed to do a benefit concert for M.E. That will happen sometime this spring, hopefully leading up to the International M.E. awareness day on May 12.

    Donations from that campaign and the benefit concert are going to both MEadvocacy.org as well as the End ME/CFS project through the Open Medicine Foundation. These groups may have a different take on the IOM report as it stands right now, but if we keep our eyes on advocating for solid, biomedical research of well-defined cohorts, then we may have more in common than what we are allowing ourselves to see right now.

    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.

  • Nielk February 25, 2015, 5:31 pm
    snowathlete

    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.

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

    Campaigns
    Our current goals are to promote and support activities such as:

    • Challenging the three redefinition projects for "ME/CFS", the IOM, the P2P and the CDC Multisite Study.
    • Getting Myalgic Encephalomyelitis (ME) officially recognized as its own disease. ME has a 60 year history and has been classified as a neurological disease in the World Health Organization'sInternational Classification of Diseases since 1969.
    • Getting a single clear definition for diagnosis and research, which includes the hallmark symptom of post exertional relapse, adopted as the official definition for M.E. Examples are the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC) or an even better definition with the CCC and/or ICC as starting points. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease.
    • Getting government funding to study this devastating disease, similar to the amounts being spent on diseases such as Multiple Sclerosis, Autism, Lupus, Crohn’s Disease, Inflammatory Bowel Disease, Parkinson’s Disease and Alzheimer’s Disease.
  • Kati February 25, 2015, 5:39 pm

    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?

  • snowathlete February 25, 2015, 5:49 pm
    Nielk

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

    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.

  • OneWaySurvival February 25, 2015, 7:54 pm
    snowathlete

    Hi Tom, thanks for talking.

    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.

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

    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)

    snowathlete

    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.

    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.

  • RustyJ February 25, 2015, 8:53 pm
    OneWaySurvival

    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.

    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.

  • OneWaySurvival February 25, 2015, 9:34 pm

    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.

  • SOC February 25, 2015, 10:13 pm
    OneWaySurvival

    …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 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.

    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.

    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.

    OneWaySurvival

    Sorry @RustyJAs 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.

    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?

  • GracieJ February 25, 2015, 11:19 pm

    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?