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Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

by Jody Smith

The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending.

There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about the origins and history of the FDA, as well as about several other severe health conditions including HIV/AIDS, cystic fibrosis and muscular dystrophy. An advocate for CF and another for MD spoke at length about the challenges that faced them in the early days of advocacy in bringing attention, funds and support to those suffering with these diseases.

The webinar was expected to be an hour long, according to the email invitation I received. At an hour and half into the webinar, mentions of ME/CFS had been few and far-between. At this point questions were taken. As I watched the time, I wondered how the waiting callers were doing. They do have ME/CFS after all, and many of us don't hold a brain-battery charge for 90 minutes or more. Would they be able to hold it together to ask their questions?

And if we were the reason for the webinar, why was our participation playing such a small part in the proceedings? I don't know how many callers were waiting, but with such a short time available to them, was everyone able to get a turn, and did they each get the time they needed?

I had recorded the webinar and listened through the two hours of the meeting again the next day. At first listen-through, I'd wondered what the point was in inviting us to listen to the problems and successes of these other groups. Somewhat reluctantly, I concluded after a second run-through that, while most of the content about ME/CFS did not appear until the last half hour, and most of that was found in the question and answer period between the speakers and callers, this webinar may prove to be a valuable resource after all.

I'm not sure what I expected, perhaps that the speakers would address the unique challenges facing those of us with ME/CFS, the invisibility and lack of respect we find in our dealings with the medical, research and drug manufacturing communities. Maybe I thought the speakers would bring us some insights into why we have been shunted aside for decades by the powers that be.

None of this occurred. But the experiences of AIDS, CF and MD advocacy may nevertheless be something we can benefit from as we work towards effective advocacy, research and treatment for ME/CFS.
Sandra L. Kweder: History of the FDA and Drug Regulation


The first speaker was Rear Admiral Sandra L. Kweder, M.D., U.S. Public Health Service, Office of New Drugs, Center for Drug Evaluation & Research, FDA. She began with an overview of the history of the FDA and drug regulation. She went into detail about how the review process for drugs works. She recommended that those of us with ME/CFS and our advocates would do well to connect with institutions that conduct drug trials, and to gain from the experience of other patient groups.

"Objective measures are limited. We don't have a marker in the blood or a marker and a muscle biopsy or something of that sort that has clearly been shown to predict the clinical course of disease. There are some that are subjective, but none are widely accepted or definitive. There is no question that the clinical trials and drug development have been constrained by these vectors," Dr. Kweder said. "Companies are likely to be reluctant to invest in developing a treatment that is surrounded by all of these uncertainties."

"There are other conditions that have had exactly these same challenges and are seeing the fruits of collaborative work between patient advocates and researchers and funders," Dr. Kweder went on to say. "Progress has been made by establishing definition of the clinical trial populations and targeted reliable measures to assess their symptoms and functioning, so I think this to me makes me very optimistic about CFS and ME."

Dr. Kweder's final word of advice was that we should get creative, and that we should learn from the experience of other advocacy groups.
Richard Klein: How to give input to the FDA


The second speaker was Richard Klein from the FDA's Office of Special Health Issues. Klein talked about how patients can give input to the FDA.

"I want to talk a little about advocacy and the role that patients play in advocating FDA and outside FDA," he said. "Traditionally it has been through advisory committee meetings through open public hearings or written submissions. We have had public policy meetings where the public is invited to speak. Public town hall meetings and written comments that are requested to the Federal Registry."

He referred to advocacy by patients with HIV/AIDS back in the '80s. He brought some light as to how the FDA works, detailing what the FDA can and cannot do. They cannot direct drug research for instance, although they can offer guidance in regards to the development of medication.

As he spoke about patient advocacy as carried out for HIV/AIDS in the early days, I was aware that this is one of the areas of real difficulty for people with ME/CFS. Many of our ill are so incapacitated that the idea of showing up in numbers and doing anything other than perhaps rolling off a cot is inconceivable.

And for whatever reason, we just don't seem to have the family members and friends often seen lifting up other health conditions. Walk-a-thons and public outcry in meetings or rallies aren't going to work for us, unless healthy people who care about us start showing up in greater numbers.

Still, it may be worth doing a little brainstorming as to new and varied ways that the bedridden and the housebound might be able to combine their voices in order to be heard. The recent email campaigns by people with ME/CFS to the FDA, to other agencies and organizations, to public figures, for instance, seem to be bearing fruit. We are of course in early days, in terms of being heard and noticed. But it is a start.

He pointed out that we "really need to work with the FDA but also researchers, Congress, which can direct funding and to a certain extent can call the shots on how research is pushed forward in a particular direction." He suggested that we need to give special attention to the pharmaceutical industry.
Mary Dwight: Learning from Cystic Fibrosis


Mary Dwight, the Vice President of Government Affairs with the Cystic Fibrosis Foundation, was the next speaker. She led us down the path taken by cystic fibrosis advocates over the years, from days of invisibility to a substantial measure of success.

Scientific research and information is the ground floor to getting anywhere. The Cystic Fibrosis Foundation ran into resistance among drug developers in much the same way we have with ME/CFS. Drug companies were not eager to develop drugs that offered no cost benefit for medications that would serve only that specific patient community. The foundation overcame this resistance by offering up venture philanthropy.

Venture philanthropy is willing to try new things, providing financial, human and intellectual capital. It may be focused on measurable returns, with progress being evaluated at certain points along the way. Venture philanthropy may involve capacity building rather than targeting program development or costs of general operation.

At one point there was some disagreement between the CFF and the FDA as to the importance of a particular drug for cystic fibrosis. The FDA's stance was that a second drug was not necessary since they had one available on the market. The foundation pointed out that the initial drug sometimes didn't work or stopped working. The FDA listened, and changed their decision about the second drug.

That, my friends, was encouragement for advocates and patients alike.

The Cystic Fibrosis Foundation put together a patient registry and care centers. From there, drug developers and patients could be brought together to perform clinical trials. Dwight said that the "patient registry really enables us to keep data that was gathered in a clinical trial against what we knew about the disease."

The foundation organized a national therapeutic network focused in one location. They created standardized research procedures, and studied design and advice from experts. Communication was stimulated, and collaboration was encouraged by the gathering of scientific consortia. Dwight said that it is up to the patient community to bring data to the FDA. It is only then that the FDA will assess this data. She encouraged ME/CFS advocates to amass "natural history" and group data for our patients.
Pat Furlong: Learning from Muscular Dystrophy


The last speaker was Pat Furlong from the Parent Project Muscular Dystrophy. She gave a history of the MD community from its early days of invisibility to a place of successful advocacy for muscular dystrophies. Like ME/CFS, for some types of muscular dystrophy there are no biomarkers. This has caused problems for MD advocates that are similar to many that we face.

Furlong said that her organization used the Cystic Fibrosis Foundation as a pattern for developing a model program. Their first step was to compile a patient registry. She detailed what she considered to be essentials for a strong program. The base would be a clinical infrastructure that included a patient registry, research networks, and a clear picture of desired endpoints.

Next would be advocacy, to bring in funds from the NIH, the DOD and the CDC, and to foster the direct engagement of regulators. Education of patients, clinical trials, and drug developers are all necessities. Clear goals and expectations are vital.

Parent Project Muscular Dystrophy's board put together a policy statement to guide towards what they wanted from the FDA in terms of advocacy. Meetings with the Center for Drug Evaluation & Research have been held concerning policy and data for the FDA.

A consulting firm is preparing a risk-benefit framework for rare diseases, for publication. The consulting firm is creating a parent survey on risk tolerance. The risk tolerance form will be submitted to the FDA. The PPMD wants to make clear to the FDA that in some situations, taking the drug is worth the risk for those with serious, life-threatening concerns. Some patients would very willingly bear those risks because the natural history has shown that some might become worse or even die if the drug was not approved by the FDA.
Questions and Answers


At this point, callers Patricia Carter, Jennifer Spotila, Marly Silverman, Courtney Miller and Hillary Johnson had an opportunity to be heard. At the end of the question and answer period, Steve Morin of the Office of Special Health Issues extended an invitation for others to submit any questions they have.

The Q & A time did not begin until we were an hour and a half into the webinar, leaving only about half an hour for those with questions. While this may have been quite frustrating for both the callers and listeners, there is the potential for more meetings to come.
What Next?


Two meetings have already been discussed for the foreseeable future. On Dec. 20 of this year, the FDA has scheduled an advisory committee meeting to discuss Ampligen, a drug that may be utilized for those with ME/CFS. Next year the FDA will have a meeting with the goal of discussing endpoints and outcome measures related to ME/CFS.
View the Post on the Blog
 
Thanks Jody for your insight and notes from the meeting.

While I too was frustrated at the beginning of the meeting, I was happy to see that they agreed to extend the meeting by an hour. Many of the thing Sandra Kweder discussed were also mentioned at the CFSAC but I suppose she cannot assume that it's the exact same audience and I guess you have to start somewhere.

Having said that, I have also been impressed with Sandra Kweder in general in these last few meetings, and I feel that she is on the ball. She may be willing to really get this stuff rolling for us, I'm happy so far with the schedule of meetings that they are having for us. What I'd like to see is this community accept the hand that she/the FDA is offering. If they would like to calmly and rationally discuss the issue, then we need to be right there at the table.

I thought the inclusion of Mary Dwight and Pat Furlong was brilliant. The FDA showed us other illnesses that weren't getting their share of the attention, and let them tell us how they turned it around. These ladies described, in broad strokes, how they got some action. They felt totally partnered with the FDA, and at times they were frustrated, but they figured out how to work through the obstacles.

I have felt for a long time that we really have to learn from other illnesses and their successful advocacy campaigns. No one illness will fit all the problems that the ME/CFS Community faces, but when we learn several of these models, we could could cut and paste our own effective campaign.


As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit.
 
special K you said: "As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit."

Well said, I agree.
 
"Objective measures are limited. We don't have a marker in the blood or a marker and a muscle biopsy or something of that sort that has clearly been shown to predict the clinical course of disease. There are some that are subjective, but none are widely accepted or definitive. There is no question that the clinical trials and drug development have been constrained by these vectors," Dr. Kweder said. "Companies are likely to be reluctant to invest in developing a treatment that is surrounded by all of these uncertainties."

"There are other conditions that have had exactly these same challenges and are seeing the fruits of collaborative work between patient advocates and researchers and funders," Dr. Kweder went on to say. "Progress has been made by establishing definition of the clinical trial populations and targeted reliable measures to assess their symptoms and functioning, so I think this to me makes me very optimistic about CFS and ME."

In other conditions, "progress has been made by establishing definition of the clinical trial populations" ..

I personally cant see any big progress forward unless they start using something like the new International ME consensus criteria. They will never have any hope of learning about and defining the illness better unless they start using stricter definitions for research which will help to disclude other things. So my question is.. how does people make that happen? This is the big question I wish to know... Is anyone giving the ME/CFS community any idea how to bring this change about to get researchers using a good definition? Has this meeting shown a way forward in that area which is holding everything up? Is this meeting the help we need to move forward or not? (or is it another miss of the situation ME/CFS is currently in?)

Its a catch 22.. till there is good definiton (not a lot of different ones like there is now) and not all the controversy, it would be hard to get drug companies involved and this is why ME/CFS needs government funding..and lots of it too.

Getting the drug companies involved while using poor ME/CFS definations isnt going to end up helping ME patients much and even if they are testing drugs which may help us (eg the one which kills B cells).. the results are going to be screwed up unless they are using a good ME definition.
 
Thanks Jody - although over in the UK i follow the situation in the states closely. For me in the UK it is a great hope to me that things are moving forward in the states, this way they will move forward for all of us throughout the world. (of course not forgetting the work of many researchers around the world)
All the best,
Justy
 
Thanks Jody for your insight and notes from the meeting.

While I too was frustrated at the beginning of the meeting, I was happy to see that they agreed to extend the meeting by an hour. Many of the thing Sandra Kweder discussed were also mentioned at the CFSAC but I suppose she cannot assume that it's the exact same audience and I guess you have to start somewhere.

Having said that, I have also been impressed with Sandra Kweder in general in these last few meetings, and I feel that she is on the ball. She may be willing to really get this stuff rolling for us, I'm happy so far with the schedule of meetings that they are having for us. What I'd like to see is this community accept the hand that she/the FDA is offering. If they would like to calmly and rationally discuss the issue, then we need to be right there at the table.

I thought the inclusion of Mary Dwight and Pat Furlong was brilliant. The FDA showed us other illnesses that weren't getting their share of the attention, and let them tell us how they turned it around. These ladies described, in broad strokes, how they got some action. They felt totally partnered with the FDA, and at times they were frustrated, but they figured out how to work through the obstacles.

I have felt for a long time that we really have to learn from other illnesses and their successful advocacy campaigns. No one illness will fit all the problems that the ME/CFS Community faces, but when we learn several of these models, we could could cut and paste our own effective campaign.


As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit.

SpecialK82,

We can hope that something worthwhile can come from this.

I agree that Mary Dwight and Pat Furlong were great. Their experience could prove to be very helpful for us. Perhaps a time of change is upon us.
 
Thanks Jody - although over in the UK i follow the situation in the states closely. For me in the UK it is a great hope to me that things are moving forward in the states, this way they will move forward for all of us throughout the world. (of course not forgetting the work of many researchers around the world)
All the best,
Justy

Justy,

I don't live in the States myself. I'm in Canada so changes in the U.S. aren't going to have any direct effect on me either. But as you say, changes in the States can cause ripples of change on this throughout the world.
 
Thanks Jody for this comprehensive outline of the FDA meeting. There is no way that I could have followed this for 2 hours myself.

Any open dialogue is a step in the right direction. I think that it is very hopeful that the FDA is even trying to address ME/CFS and willing to work with us.

In addition, I agree that we need to learn from others' successes that have come before us. This is very instructive.

Jody said:

And for whatever reason, we just don't seem to have the family members and friends often seen lifting up other health conditions. Walk-a-thons and public outcry in meetings or rallies aren't going to work for us, unless healthy people who care about us start showing up in greater numbers

I have wondered about this problem for a long time. Why is it that our loved ones are not rallying for us? I know that many of us have support from family members or friends but, it doesn't translate in "fighting" for us. Why is that?.
 
I have wondered about this problem for a long time. Why is it that our loved ones are not rallying for us? I know that many of us have support from family members or friends but, it doesn't translate in "fighting" for us. Why is that?.

Nielk,

Cort said something once a few years ago about this lack of family involvement we have, compared to other patient groups. I'd been sick for many years when he said this, and had lived with very little family interest and involvement in my own family all that time and yet ... until that moment it had never really gelled in my head (now there's imagery:)).

I have wondered about this ever since. Does it say something about the type of families we come from? Something about our DNA? Something about theirs? Do so few of our family members believe we are in the dire straits we say we are in?

Lots of questions begin to emerge, no answers though, at least I don't know them.
 
Cort said something once a few years ago about this lack of family involvement we have, compared to other patient groups. I'd been sick for many years when he said this, and had lived with very little family interest and involvement in my own family all that time and yet ... until that moment it had never really gelled in my head (now there's imagery:)).

I have wondered about this ever since. Does it say something about the type of families we come from? Something about our DNA? Something about theirs? Do so few of our family members believe we are in the dire straits we say we are in?

Lots of questions begin to emerge, no answers though, at least I don't know them.

This is an interesting question. I've been lucky enough to always have unquestioning support in my illness from my family. Last week, I was complaining to my sister about how my application for disability benefits was being treated by the government department responsible - this specific issue is a national scandal (literally - in the TV news, the doctors' union coming out against the government's handling of it, and so on) and she asked me what she could do. I didn't know, apart from write to her MP - I've done that to my MP and just got the brush-off.

I don't know what to tell her to do to help with the ME situation, other than try to raise money for research (which she does). There's no campaign for her and others like her to join. I don't even feel there's one for me to join. I don't know what action to take.

Is this the difference between ME, MS, AIDS and these other groups? Not that our families or their attitudes are different but that there's no clear course of action?

Do we need a roadmap?
 
This is an interesting question. I've been lucky enough to always have unquestioning support in my illness from my family. Last week, I was complaining to my sister about how my application for disability benefits was being treated by the government department responsible - this specific issue is a national scandal (literally - in the TV news, the doctors' union coming out against the government's handling of it, and so on) and she asked me what she could do. I didn't know, apart from write to her MP - I've done that to my MP and just got the brush-off.

I don't know what to tell her to do to help with the ME situation, other than try to raise money for research (which she does). There's no campaign for her and others like her to join. I don't even feel there's one for me to join. I don't know what action to take.

Is this the difference between ME, MS, AIDS and these other groups? Not that our families or their attitudes are different but that there's no clear course of action?

Do we need a roadmap?

The fact that we lack such basic things as a clear and proper definition of the condition, that there are probably so many different kinds of syndromes or illnesses that are under the umbrella ... right here is another problem, we do not even have a name we can call it that all of us are comfortable with and that the medical community are in agreement on. And that is no fault of the patient community, just one more indication of the confusion that still surrounds and permeates our illness.

But what Cort had mentioned that time a few years ago and what stuck with me was, Where are the families fighting for their sick? They've been there for AIDS, for autism, for various kinds of cancer, and the list goes on. The sick people were not the ones who had to do it. Even with all the confusion and uncertainty inherent in our situation, the lack of other people putting us in the news, running campaigns of different types for us, they have just not been happening.

When AIDS first hit the news, at least as I recall it, there was alot of uncertainty as to what was being dealt with, research results took some time to get anywhere, and AIDS had the added whammy of the whole prejudice against homosexuals, the notion that this was divine judgment and what "they" had coming and so forth, people with AIDS were being shunned, fired and kicked out of places. So there was quite a mess there for a long time.

And yet. People rallied for them. As in all this time nobody has rallied for us.

The average mom or dad is not going to be able to launch a grassroots campaign or organization or series of events for us. Your sister, and my mom and cousin who, outside of my husband and kids were the only family members who have seemed to bat an eye for me, they can't just start something on their own.

It does take certain types of people with certain areas of expertise and contacts I think for that sort of thing. But ... other groups have such people who appear on the scene and the average mom or dad or friend is able to join them. Or so it seems to me.

Maybe the webinar will turn out to be part of the road map for us.
 
I think AIDS is a special case. I agree it had huge disadvantages in terms of social prejudice but in terms of advocacy it had big differences from our situation: high prevalence in the gay population initially where there was already a strong community already used to advocacy (often a geographically close one), plus a sense of urgency because people were dying. I don't know even one other person with ME in the whole country because I've never formed a social life around my illness (except for posting here online).

I think MS in the days before it was understood would be a better model for us than AIDS. Was MS advocacy actually successful at that point? I only know MS as exactly that - multiple sclerosis, presumably named once the mechanism was understood. Were MS advocates successful before that?
 
But what Cort had mentioned that time a few years ago and what stuck with me was, Where are the families fighting for their sick? They've been there for AIDS, for autism, for various kinds of cancer, and the list goes on. The sick people were not the ones who had to do it. Even with all the confusion and uncertainty inherent in our situation, the lack of other people putting us in the news, running campaigns of different types for us, they have just not been happening.

When AIDS first hit the news, at least as I recall it, there was alot of uncertainty as to what was being dealt with, research results took some time to get anywhere, and AIDS had the added whammy of the whole prejudice against homosexuals, the notion that this was divine judgment and what "they" had coming and so forth, people with AIDS were being shunned, fired and kicked out of places. So there was quite a mess there for a long time.

And yet. People rallied for them. As in all this time nobody has rallied for us.

The average mom or dad is not going to be able to launch a grassroots campaign or organization or series of events for us. Your sister, and my mom and cousin who, outside of my husband and kids were the only family members who have seemed to bat an eye for me, they can't just start something on their own.

It does take certain types of people with certain areas of expertise and contacts I think for that sort of thing. But ... other groups have such people who appear on the scene and the average mom or dad or friend is able to join them. Or so it seems to me.

Maybe the webinar will turn out to be part of the road map for us.

Regarding the lack of support:

This article by Llewellyn King accurately pinpointed the essence of our problem, I believe. A quote from the article:

"There are parallels as well as dissimilarities to the early days of the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is sloth."

Regarding next steps:

As a (new) starting point, what do other PR members think about the Coalition for ME/CFS (www.coalition4mecfs.org/), of which PR is already a member, perhaps along with the CAA, requesting a meeting with Mary Dwight and Pat Furlong? We'd have to go in very well prepared (vast, thorny topic) with a well-planned agenda (to make best use of their time) and a person who is a professional facilitator (I think some of our PR members have this expertise and could perhaps help select someone?).
 
Interesting 'sloth' quote. I think that's exactly the stigma we're facing.

Did MS, in the days before it was understood, have the same 'it's all in their heads' stigma and if so, did they overcome it before the objective signs of disease were shown? Or did their successful advocacy only begin afterwards?
 
Regarding the lack of support:
...for ME/CFS, the stigma is sloth."
exactly... I think a lot of people are of the opinion: "If you won't help yourself, why should I help you?" The point is that we are, as best we can, but they don't understand this. I wish we had something people could put on, like one of those "empathy bellies" that stimulate what it is like to be pregnant, so that people could understand some of what we go through. :( How about a specially-made lead-weighted unitard? o_O

Regarding next steps:

As a (new) starting point, what do other PR members think about the Coalition for ME/CFS (www.coalition4mecfs.org/), of which PR is already a member, perhaps along with the CAA, requesting a meeting with Mary Dwight and Pat Furlong? We'd have to go in very well prepared (vast, thorny topic) with a well-planned agenda (to make best use of their time) and a person who is a professional facilitator (I think some of our PR members have this expertise and could perhaps help select someone?).
Sounds like an excellent idea to me.
 
Interesting 'sloth' quote. I think that's exactly the stigma we're facing.

Did MS, in the days before it was understood, have the same 'it's all in their heads' stigma and if so, did they overcome it before the objective signs of disease were shown? Or did their successful advocacy only begin afterwards?

Yes, if we could set up such a meeting, I think it is crucial that we include an MS advocate for the reasons you mention. Perhaps Sandra Kweder or Richard Klein could provide us with the name of an MS advocate they have worked with (and, I think, an HIV/AIDS advocate).

Since the definition problem bedevils us, it might be good to include previous CFSAC members like Dr. Lenny Jason (he is a strong and prominent advocate in the Voices in the Shadows film). Current CFSAC members like Stephen Krafchik would be another strong, excellent addition. Both of them are experts in ME, well-regarded, well-spoken, and eminently reasonable advocates.