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MEAdvocacy.org Update and a Call for Continued Support

Nielk submitted a new blog post:

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





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.

ME-Advocacy-Logo-5.jpg


Please donate to MEadvocacy.org here.




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Continue reading the Original Blog Post
 
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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.
 
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.

 
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.
 
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 said:
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?
 
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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.
 
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.
 
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:
 
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.
 
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.

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.

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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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 said:
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.
 
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.
 
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