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.

Please donate to MEadvocacy.org here.

Support Phoenix Rising​

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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Continue reading the Original Blog Post

 

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.

 

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.

 

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.

 

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.

 

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.

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.

 

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.

 

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

 

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.

 

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?

 

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.

 

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.

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

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.

 

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.

 

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

 

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 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.

 

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.

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.

 

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

 

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.

 

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.

 

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.

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.

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.