What common goals can everyone work towards, regardless of their view of the IOM report?'

[Aurator]

The real situation is "we are in a dead end cul-de-sac, which we got into because of actions A, B, C and D (all of which were good decisions made for the best of reasons)" Knowing the details of decisions A, B, C, and D does not directly help us get out of the dead end. It creates long discussions and heated arguments, but the real question is how to move forward, not how we got here.

If the real question is how to move forward, but organisation fragmentation in the world of ME/CFS is a destructive problem that you predict will continue "as long as people insist on a very high level of uniformity of belief", then logically we need to end or at least substantially reduce the fragmentation in order to improve our chances of moving forward.

Since it is generally impossible to end voluntary divisions without understanding what is driving them in the first place, perhaps you would be good enough to suggest just why the world of ME/CFS is, according to you, so extremely fragmented organisationally.

 

[Denise]

Those opposed to the IOM report will likely support MEadvocacy.org.

From discussions I have seen elsewhere I am not sure that opposition to the IOM report necessarily translates to support for MEAdvocacy.

 

[oceiv]

I've quickly read through the thread. Boy, you all have been busy. I had an emergency crop up today. Not a medical emergency, but one related to my medical care. I believe today, a doctor canceled my appointment, one which I had booked over a month ago because of this disease. She left me in a terrible position, which could be dangerous if I don't find another doctor within a short amount of time. The reason I'm offering that bit of specifics is to explain why my number one issue is patient care. Research is second, for me. It's almost impossible to get good care here for ME/CFS. This shouldn't be the case. There are countless doctors and hospitals where I live, so it isn't a question of scarcity. I am also very fortunate to have insurance. I've read at least two top issues on my quick read. This is another reason I think we may have to include more than one goal at a time. Patients have different top priorities, but what we will probably find is that our top 5 or top 10 will overlap. The basics of coalition-building, so to speak.

As for using quotes from the IOM report, I don't have a preference, but I did see two people indicate it was a deal-breaker. IMO, we want to build our supporter numbers. We have strength in numbers because our coalition will hopefully include people of many different opinions about the IOM report. We can absolutely distinguish our action from other efforts. This will take all of us working together to do so and people who know why other efforts failed.

I appreciate everyone who weighed in, What I'd like to know for the people who want only one goal, is will having other goals be a deal-breaker or is the one goal a strategy preference? The current goal list has more support than the previous one. This indicates to me that, while we have specifics to work out, generally we are moving closer to agreement. Please vote, if you haven't. I need to try and fix my situation. Back later.

 

[Sean]

I appreciate everyone who weighed in, What I'd like to know for the people who want only one goal, is will having other goals be a deal-breaker or is the one goal a strategy preference? The current goal list has more support than the previous one. This indicates to me that, while we have specifics to work out, generally we are moving closer to agreement. Please vote, if you haven't. I need to try and fix my situation. Back later.

I am happy for more research funds and better clinical care to be equal first priorities.

Also agree that IOM criteria need to be properly compared to other criteria and tested in the field, and that the more severe patients need to be included and better studied.

All the best with your personal situation.

 

[joshualevy]

Since it is generally impossible to end voluntary divisions without understanding what is driving them in the first place, perhaps you would be good enough to suggest just why the world of ME/CFS is, according to you, so extremely fragmented organisationally.

I don't think I have a perfect answer to this question, but here is the best one I have:

It is the difference between unconditional support and conditional support. Advocates for most other diseases offer unconditional support, but for ME/CFS the support is conditional. (I don't think the cause of this is a mystery: it is because of the bad things that have happened in the past.) To understand what I mean by unconditional vs. conditional support, consider the following story (which is a slightly fictionalized version of something which really happened, and just a few weeks ago):

Someone posted in the forum/blogosphere and said: "I represent group W, and we are working with politician X, to get Y million dollars allocated for ME/CFS research by the Z government agency. Will you help us?" The responses fell into three categories:
1. People who said "yes, I'd love to". This is unconditional support.
2. People who said "I need to know more before I make a decision on whether to help you. What sort of research will be funded? Will psychologists be able to get the money? Will the research be forced to use the definition that I like? Will the research be banned from using the definition that I don't like? etc." This is conditional support; the person is willing to help, but only in certain situations.
3. People who said "I will not help because group W or politician X or government agency Z has done bad things in the past, and I will not help them with this project now." That is a different form of conditional support; it is based on the purity of the actors rather than the desirability of the actions.

In the world of ME/CFS, the most common response was number 2. The second most common was 3 and 1 was the least common, in general, according to my memory. When similar questions have been asked in forums for other diseases (including those with unknown causes), the answer is almost always 1, with a small (or tiny) group of 2 and 3. The difference is striking. (And I want to say again: the reason for this is well known, it is the history of bad research and bad management by government agencies and so on.)

I think this attitude is critical to creating the organization fragmentation in ME/CFS advocacy. If most people answer give answer 1 when asked about more money for research (a critical need), there is simply nothing to argue about. The group of people can't fragment, because they all agree on more money, and everything else is secondary. On the other hand, the moment you start thinking in terms of 2 and 3, lots of fragmentation because possible (even easy). Some people will argue over disease definitions or terminology, others over most promising cures, others over definitions of improvement. The list is potentially endless, and every question has the ability to divide every group in half. The group that insists on ICC could be cut in half by a immune vs. mold argument. The ICC-mold group could be cut in half by the ME vs SEID naming argument, the ICC-mold-ME camp could be divided by the allow psychologists vs. ban them argument, and so on.

Additionally (and maybe even more destructive) conditional support has the practical effect of gutting government funding. Such diseases can almost never get an "special funding" allocations. In real life, there are lots of people who want lower taxes. To get lower taxes they are against almost all government spending. So any politician who wants to spend money, has a large group of people who are against that. So, they will only work for a special allocation of research money, if (a) they really believe in it very strongly and personally or (b) they think they will get support from the people they help enough to offset the people who will be against it.

If a politician says "I'm going to work for a special $5 million Parkinson's allocation the Parkinson's advocates will all give answer #1, and the politician will get support. But if they announce a $5 million ME/CFS allocation, they will get a mix of answers #2, #3, and #1, and the politician will get much less support, and might even get controversy for their efforts (and this from the people they think they are helping!) The result is that the politicians will support more funding for Parkinson's Disease, and the other diseases with similar advocate attitudes, and will not work for more funding for ME/CFS.

Also remember, that government funding happens before specific research projects are chosen. You get the $5 million, and then you figure out what research projects will get it. So in answer #2, when the person asks "What is going to be funded?" the answer is usually "We don't know", and then the person does not support it, because they are worried about it, and the money never materializes. The #1 unconditional supporters don't have that problem, because they never even ask the second question. They just support more money.

Joshua Levy

 

[Kati]

I don't think I have a perfect answer to this question, but here is the best one I have:

It is the difference between unconditional support and conditional support. Advocates for most other diseases offer unconditional support, but for ME/CFS the support is conditional. (I don't think the cause of this is a mystery: it is because of the bad things that have happened in the past.) To understand what I mean by unconditional vs. conditional support, consider the following story (which is a slightly fictionalized version of something which really happened, and just a few weeks ago):

Someone posted in the forum/blogosphere and said: "I represent group W, and we are working with politician X, to get Y million dollars allocated for ME/CFS research by the Z government agency. Will you help us?" The responses fell into three categories:
1. People who said "yes, I'd love to". This is unconditional support.
2. People who said "I need to know more before I make a decision on whether to help you. What sort of research will be funded? Will psychologists be able to get the money? Will the research be forced to use the definition that I like? Will the research be banned from using the definition that I don't like? etc." This is conditional support; the person is willing to help, but only in certain situations.
3. People who said "I will not help because group W or politician X or government agency Z has done bad things in the past, and I will not help them with this project now." That is a different form of conditional support; it is based on the purity of the actors rather than the desirability of the actions.

In the world of ME/CFS, the most common response was number 2. The second most common was 3 and 1 was the least common, in general, according to my memory. When similar questions have been asked in forums for other diseases (including those with unknown causes), the answer is almost always 1, with a small (or tiny) group of 2 and 3. The difference is striking. (And I want to say again: the reason for this is well known, it is the history of bad research and bad management by government agencies and so on.)

I think this attitude is critical to creating the organization fragmentation in ME/CFS advocacy. If most people answer give answer 1 when asked about more money for research (a critical need), there is simply nothing to argue about. The group of people can't fragment, because they all agree on more money, and everything else is secondary. On the other hand, the moment you start thinking in terms of 2 and 3, lots of fragmentation because possible (even easy). Some people will argue over disease definitions or terminology, others over most promising cures, others over definitions of improvement. The list is potentially endless, and every question has the ability to divide every group in half. The group that insists on ICC could be cut in half by a immune vs. mold argument. The ICC-mold group could be cut in half by the ME vs SEID naming argument, the ICC-mold-ME camp could be divided by the allow psychologists vs. ban them argument, and so on.

Additionally (and maybe even more destructive) conditional support has the practical effect of gutting government funding. Such diseases can almost never get an "special funding" allocations. In real life, there are lots of people who want lower taxes. To get lower taxes they are against almost all government spending. So any politician who wants to spend money, has a large group of people who are against that. So, they will only work for a special allocation of research money, if (a) they really believe in it very strongly and personally or (b) they think they will get support from the people they help enough to offset the people who will be against it.

If a politician says "I'm going to work for a special $5 million Parkinson's allocation the Parkinson's advocates will all give answer #1, and the politician will get support. But if they announce a $5 million ME/CFS allocation, they will get a mix of answers #2, #3, and #1, and the politician will get much less support, and might even get controversy for their efforts (and this from the people they think they are helping!) The result is that the politicians will support more funding for Parkinson's Disease, and the other diseases with similar advocate attitudes, and will not work for more funding for ME/CFS.

Also remember, that government funding happens before specific research projects are chosen. You get the $5 million, and then you figure out what research projects will get it. So in answer #2, when the person asks "What is going to be funded?" the answer is usually "We don't know", and then the person does not support it, because they are worried about it, and the money never materializes. The #1 unconditional supporters don't have that problem, because they never even ask the second question. They just support more money.

Joshua Levy

The problem is that patients have had to learn about their disease for themselves, much more than other diseases in my opinion. This is not well seen by physicians who would rather keep their turf of diagnosing, 'managing patients' and deciding what's best for them.

It is incredibly sad to see the government deciding that status quo is best as opposed to find biomarkers and treatments for a disease that costs them so much.

 

[alex3619]

I agree the ultimate goal is better patient care, and even cures. However I see this as necessarily depending on better research, and after that better doctor education.

Having a list of ultimate goal priorities is not the same as a list of immediate goal priorities. To do almost anything we want we need better research as a necessary step.

Think of it as an exercise in project management. Sure, you want a complete project, be it a product or service. However you have many steps needed to get there, some less optional than others, so once you figure out the steps you prioritize based on the order in which they need to be done.

 

[oceiv]

@Sean Thanks for the good wishes on my situation. Very good input on which goals you endorse.

@Sasha made a really important point, yesterday.

She noted that past advocacy efforts got bogged down because of disagreements. If there is disagreement here about one goal vs. a list of goals, then we should try to look for where the agreements are. To do better than our past advocacy, we must learn from those mistakes. Are there agreements on a top five? A top ten? There was initial agreement about a list. When asked to name the top #1 goal, there are at least 3 different opinions, including mine (in the last 3 pages). Funding good research, @medfeb 's fundamental reboot of U.S. federal public health policy toward this disease and demanding access to patient care. But to me, this isn't a disagreement worth stopping us from moving forward, because we have another path. We can resolve this issue.

A bit more on patient care: How many of us are without a doctor because we're sick with ME/CFS and for only that reason? How many of us don't have even one ME/CFS expert in our whole state or country? How many of us are getting worse because we have no local medical care? My current situation is the main reason I'm determined to change things. But many others are in an even worse position and can't even speak out. My situation could be helped by local medical care. If I manage to find another doctor soon, it will prevent a crash. If I don't ....??? Good research is very important. But good research takes time to do and more time to apply. I'd guess that many of us have funding research in their top goals. This conversation has echoed that message. But a local doctor could help this month. Since we all seem to have similar top goals, IMHO it's not worth risking an action we can take together. Asking for top common goals can be very focused.

It's like when flight attendants say to passengers "Put on your oxygen mask first. Then assist others." We all need good medical care in order to keep fighting for change.

Let's find a way to resolve the number of goals issue and keep making progress,

 

[Sean]

I agree the ultimate goal is better patient care,

In our situation at least, doctor education and better clinical care go hand in hand, to some extent. Better clinical care at this point would start mainly with medicos being a lot better informed of the current realities, and more accepting of patients.

Plus some palliative stuff: Better pain control, and sleep quality, for example, is probably something that could be implemented straight away if the medical system wants it to be, and the money is available. I could certainly use some of both.

Clinical care, in my book, also extends to doctors providing more support for patients in medico-legal settings.

Agree that more serious therapies will need a lot more research behind them.

Good point about short v. longer term priorities.

 

[oceiv]

Thank you Oceiv. Great job on pulling this together

Some food for thought on specific goals - possible modifications in bold and comments/questions underneath.

This was helpful input of how we strengthen our action and I would like incorporate the non-IOM suggestions. Regarding the IOM report, it seems that taking a position on it or parts of it sends people scattering to position corners. For a common goals action, I think the only position we seem to agree upon is that we cannot take a position because we cannot agree on the report.

@Snowdrop Thanks for dropping by and giving your suggestion on how we could deliver this action. I agree that going to non-controversial orgs and seeing if they'll support and publicize our common goal is a good way. Are there orgs like Invest in ME, which people here would be interested in asking?

Nobody does. Anywhere. That does not mean it cannot be a long term goal, and it does not mean we cannot work toward our own specialty, perhaps a multisystem disease specialty.

The way I see our specialty (for now, until there's an obvious disease cause) is that it could be modeled after what current ME/CFS experts are currently doing. That way we would have a specialty without waiting for the research to find something definitive.

@taniaaust1 Your point about subgroups is an astute one. The heterogeneous nature of this disease is remarkable. You and I seemed to have striking similarities. But I read other illness accounts and often note how dissimilar my experience is. Unfortunately, the report subject does not seem to lead to consensus.

@joshualevy You have a good understanding of the current situation. What I'm not clear about is if you want to work with us to advocate common goals or if you are only interested in resolving the organizational fragmentation? I found @Nielk 's comment to be a very succinct, observant and accurate summary of where we are. We are in that reality. Do we focus on how the system is broken or do we fight to get heard and get things done? If we want for patients to unite in advocacy, then we have to do so in a way that both accepts the reality and in a way that unites, not divides. Let us know.

 

[alex3619]

That way we would have a specialty without waiting for the research to find something definitive.

The problem is such a specialty has to be accepted by the medical community. Otherwise they may just be treated as a bunch of quacks, mavericks , and problem makers. Building a recognized college or specialty takes time, research, and wide medical acceptance. We can and should work toward that, but its not going to be a quick thing to do.

Once we have causation then a specialty will naturally present itself. However if its equal parts several specialties, then a combined specialty is the way to go. Even if we have to create one.

 

[oceiv]

@alex3619 Does this mean that we should not ask for a specialty now? There are very few experts out there and too many undiagnosed and untreated patients. Of our few experts, many are reaching retirement age. At any time we ask, it will take time. Why not start that clock now? We already know the current docs are treating immune symptoms and other systems. Many other diseases do not have a known causes, but do have specialists who treat and are extremely knowledgeable about any given disease's set of symptoms. The thing is the reason that we have numerous urgent goals is that our disease has been neglected in so many ways. The solution lies in urgently fixing more than one thing at a time.

Also, not having a medical home within the NIH seems to have contributed to us not getting funding.

Do we have suggested solutions on the number of goals issue?

Taking a rest now,

 

[Sasha]

I've quickly read through the thread. Boy, you all have been busy. I had an emergency crop up today. Not a medical emergency, but one related to my medical care. I believe today, a doctor canceled my appointment, one which I had booked over a month ago because of this disease. She left me in a terrible position, which could be dangerous if I don't find another doctor within a short amount of time. The reason I'm offering that bit of specifics is to explain why my number one issue is patient care. Research is second, for me.

Really, really sorry to hear about your situation. I hope you can find help quickly. The forums can wait!

As for using quotes from the IOM report, I don't have a preference, but I did see two people indicate it was a deal-breaker. IMO, we want to build our supporter numbers. We have strength in numbers because our coalition will hopefully include people of many different opinions about the IOM report. We can absolutely distinguish our action from other efforts. This will take all of us working together to do so and people who know why other efforts failed.

I agree we want to build supporter numbers but I don't think that two people out of however many are reading this thread is an indication that we shouldn't cite our big weapon (the IOM report). We know that the petitions against the name don't indicate the numbers who wouldn't sign up to a petition that cited the report (if I had thought a placeholder name mattered in the wider context, I might have signed such petitions myself, and I'm broadly pro the report). If even 5% of diagnosed, networked patients are so against the report that they won't even sign a petition that cites it, even though it could bring them better funding, better care and better research, I'd be astonished. Such patients are a subset of a subset of a subset, and I find it very hard to believe that they're numerous.

I think that we can get much, much greater support than we'd lose by citing the IOM report. But you said, 'We can absolutely distinguish our action from other efforts' and I'm content to wait to see what that is, because deciding what we do and don't cite is for a later stage than we're at now. First, we need to agree on our shopping list.

What I'd like to know for the people who want only one goal, is will having other goals be a deal-breaker or is the one goal a strategy preference? The current goal list has more support than the previous one. This indicates to me that, while we have specifics to work out, generally we are moving closer to agreement.

No, it's not a deal-breaker: in fact, upon reflection, if we're going to have a serious go via Congress rather than just targeting the NIH, it makes sense to go for a 'manifesto' approach. So I support the idea of having multiple goals.

You have persuaded me!

 

[Sasha]

@alex3619 Does this mean that we should not ask for a specialty now?

I think it would be helpful to have someone like Jonathan Edwards (well, not someone like him - actually him) weigh in on this but I think it might be helpful to set up a new thread with that specific question so he (and other clinicians on the forum) doesn't have to plough through the 130 messages on this one (which is why I'm not tagging him now).

I don't feel that we as patients have the necessary insight into the process by which a disease gets adopted by a specialism and how to help that come about. We want to make sure that we're asking for things that can be achieved, and preferably indicating how they can be achieved.

Do we have suggested solutions on the number of goals issue?

Apart from me, was anyone focused more on a single goal? Can't remember your position, @aimossy?

I'm in favour of multiple goals now.

Anyone still want a single goal?

 

[Valentijn]

.As for using quotes from the IOM report, I don't have a preference, but I did see two people indicate it was a deal-breaker.

I think using the IOM report to support our demands is a good idea, even for people who dislike the name, criteria, or entire IOM process.

The basic goal is to persuade people to do what we want them to do: more funding, more biomedical research, better clinical care, etc. When we seek to persuade someone, we need to do it on their terms - the message has to make sense to them, and it has to be persuasive to them.

As an analogy, in legal writing we had to write briefs intended to convince the judge to do what was beneficial for our side: exclude a piece of evidence, dismiss the case, rely on case law precedence beneficial to our side, etc. It wouldn't matter if we thought the client was guilty, the evidence was more relevant than prejudicial, the case should probably proceed, or another bit of contradictory case law was more relevant.

The whole point is to take whatever we can find, from whatever source, to support our argument in terms which the target audience can understand. We do this often already using a study by a bunch of Dutch psychobabblers where they said a lot of nasty things. Buried in that study is the fact that better answers on questionnaires following CBT/GET do not correlate with increased physical functioning as measured by actometers. Should we stop propagating that very powerful message that CBT/GET is objectively proven not to help, because it comes from a horrible source? Of course not! That's part of it's power - it shows that even the most hardcore proponents of these therapies can't get them to work.

Similarly, even if some of us think that the IOM name and definition are wrong, it contains extremely powerful statements which all of us can agree upon. It explicitly demands much better funding, rejects the Oxford model, denounces psychosomatic or other psychological theories, and gives validation to a large body of biomedical research. These are exactly the things we want to say to our audience, and it comes with a citation to an institution which is considered quite reputable by our audience, and it was commissioned by another institution which they consider reputable, the NIH.

Not only would I be willing to quote our perceived enemies when it serves our purposes, those are exactly the quotes which I would most gleefully put forth. But then, I do have a somewhat perverse sense of humor

 

[aimossy]

@oceiv

I am hazy at the moment brain wise. But just saying that although I think one goal and message where people are all yelling out the same need in big numbers is stronger. You can over time build on to the next goal and then the next....

Having more needs/ goals verbalised is not a deal breaker for me especially when they are in support of each other. My biggest concerns are having as many patients as possible backing it and that it is a professional and well executed campaign or petition. I cant comment on the other goals right now I'm too hazy but I think it is invaluable to have people with different viewpoints articulate what they could support or not. I do think it will have less power if its a big manifesto though and messages can get lost in a throng of asks...


I'm off tangent here...
It isn't as if we have bargaining power. You have to make a massive appeal in big numbers. Sure I would love it if there were many of us all yelling on the streets if we could. My hope is for postal delivered mail on a massive scale. Imagine 50,000 postal delivered letters arriving at a congress persons desk all appealing for the same thing all with similar health stories that sound the same. Anyway I am off tangent there sorry we aren't discussing those things at the moment.

 

[taniaaust1]

The way I see our specialty (for now, until there's an obvious disease cause) is that it could be modeled after what current ME/CFS experts are currently doing. That way we would have a specialty without waiting for the research to find something definitive.

Unfortunately as much as we'd like that to happen, it cant happen as the health systems would never recommend anything for all doctors to do unless it has been proven (and the only way things or methods of treating ME could be proven, is via research into treatments etc).

If we aim for something, it needs to be possible.

 

[alex3619]

I think it would be helpful to have someone like Jonathan Edwards (well, not someone like him - actually him) weigh in on this but I think it might be helpful to set up a new thread with that specific question so he (and other clinicians on the forum) doesn't have to plough through the 130 messages on this one (which is why I'm not tagging him now).

I don't feel that we as patients have the necessary insight into the process by which a disease gets adopted by a specialism and how to help that come about. We want to make sure that we're asking for things that can be achieved, and preferably indicating how they can be achieved.

Anyone still want a single goal?

There will be times for single goals, and times for multiple goals. We need to be flexible. I still think a petition has to have one single succinct goal. Arguing for better medical research is however really a whole lot of related goals.

We cannot directly set up a medical specialty. What we can do is support our doctors and researchers who want to do so, and maybe give them a nudge to assist them to get started. This may change, particularly after we have diagnostic biomarkers and effective treatments.

 

[taniaaust1]

@alex3619 Does this mean that we should not ask for a specialty now? There are very few experts out there and too many undiagnosed and untreated patients. Of our few experts, many are reaching retirement age. At any time we ask, it will take time. Why not start that clock now? We already know the current docs are treating immune symptoms and other systems. Many other diseases do not have a known causes, but do have specialists who treat and are extremely knowledgeable about any given disease's set of symptoms. The thing is the reason that we have numerous urgent goals is that our disease has been neglected in so many ways. The solution lies in urgently fixing more than one thing at a time.

Also, not having a medical home within the NIH seems to have contributed to us not getting funding.

Do we have suggested solutions on the number of goals issue?

Taking a rest now,

I'm all for we need ME clinics but the thing is they wouldn't be what we really currently need. They'd just be standard treatment and we know how far that gets us eg pain pills, sleeping pills, anti-depressants etc .

We wouldn't get anti-virals or any of the stuff we know can really help us as there isn't studies backing it up (so many of us still would need to head for the specialist ME doctors travelling great distances to do so just like happens now as standard care doesn't do much except work like putting a bandaid onto something).

but even standard clinics could help many of us seeing there are so many doctors out there who hate treating even our symptoms but Im veryconcerned as the GET and CBT are still supported by the P2P report or whatever its called if what Ive read others say is correct. So those things are likely to be put into the clinics at this point of time as a main thing if they are set up (which just then would help keep the whole GET/CBT idea around), so now isnt the best time for these clinics.

I was supporting the clinics idea the other day on a thread (before I knew that GET and CBT were still being recommended) but have changed my mind how I feel about it with that info. The time isn't yet right for those while GET and CBT are the two most recognised treatments still!

Think about it, do we really want clinics being set up if it means that people are going to be being trained on giving us GET and CBT and it helps keep those things ingrained as the therapies for us. Without good research in other treatments for us, we just wont get the kind of clinics we'd like to have with the kind of treatments most of us are wanting to try.

 

[Sasha]

There will be times for single goals, and times for multiple goals. We need to be flexible. I still think a petition has to have one single succinct goal.

I did too and then I realised that I didn't have a very good reason for thinking that! Do you mind if I ask what your reasoning is on this?

And in relation to this thread, would it be a dealbreaker for you if the petition had multiple goals, even if you supported all or most of them?

Is it a matter of degree, so would you support three goals but not ten goals (to give an extreme example)?

Just conscious of the need to move forward in practice, and thought it would be helpful for @oceiv to have this point clarified by the time she comes back to this thread (I don't mean to barrage you with questions, Alex!).