Researcher Interactions Video: Science for ME Q&A with Dr Sadie Whittaker from Solve ME/CFS Initiative, May 2019

Andy · May 22, 2019

https://www.youtube.com/watch?v=eIMDoRvE2yA

The Science for ME forum are delighted to talk to Dr Sadie Whittaker from Solve ME/CFS Initiative about Solve's work, in particular their patient registry, related app and biobank, as well as their Ramsay Award programme, that awards grants to fund much needed research into ME/CFS and which, at time of posting, is open to applications.

** Apologies for the audio/video not quite being as good as we'd have liked, we hope that you are still able to enjoy the video regardless **

Links:
Solve ME/CFS Initiative - https://solvecfs.org
Pre-register to the registry - https://solvecfs.org/you-m-e-registry/
Ramsay Award programme, https://solvecfs.org/smci-ramsay-award-program/
Apply for an award, https://solvecfs.org/applying-for-an-award/

ETA: @Sly Saint has kindly created a transcript, see here https://www.s4me.info/threads/video...-me-cfs-initiative-may-2019.9425/#post-166849.

Andy · May 9, 2019

Screenshots from the app (as also shown at the end of the video).

Sly Saint · May 9, 2019

Andy said: ↑

If anybody feels up to creating a transcript for this to help those who are unable to watch video/listen to the audio then it would be very much appreciated.
Click to expand...

on it

Andy · May 9, 2019

Sly Saint said: ↑

on it
Click to expand...

Thank you

wigglethemouse · May 9, 2019

Thanks @Andy. I really enjoy the patient/researcher discussions - it gives a different feel to the normal interviews and presentations, sort of more personable.

It really resonated with me when Sadie said about the power of the biomedical knowledge within big Pharma. I had heard the same advice from a long long retired VP of R&D in the UK of such a company. He stated that some of the most brightest minds work in big Pharma, and they have the knowledge and experience/history of market and unmarketed drugs for different disease processes.

Sly Saint · May 12, 2019

Struggled with this transcript. Can't hear properly/understand some of what Dr Whittaker says.
I've removed a lot of 'you know's 'right's and 'likes' to try and make it easier to read, but there are a number of places where I couldn't figure out what exactly she was saying. So there are quite a few ??.
If anyone would like to fill in the gaps I can make the necessary changes.

Here's what I've done (will have to split over a couple of posts).

S4ME interview with Dr Sadie Whittaker.

A: welcome to Dr. Sadie Whittaker thank you for joining us for this chat. Over on the Science for ME forums we've collected a number of questions and we're gonna run through those and just talk to you about the work that Solve are doing. Broadly speaking on many categories,quite a lot on the research side.
So the first thing that we were looking to talk to you about was your biobank registry and app. Efforts that you’ve made to set those up and put those in place. Really the question at the moment is with those three, where are you at, how are they coming along and when do you see them going fully active?

SW: So first thank you for having me, I'm happy to be speaking to you today and I appreciate you taking the time to speak to us about our work. The biobank and registry is I think , if I have to pick one thing that we were doing in research this would be it. I come from an oncology background and spent most of my career in the biopharma industry in clinical development and really saw how big data it's a buzzword but how big data set transformed what we knew about oncology.

Sobreast cancer used to be a single disease and it's now, it’s tens of different diseases you know because of the genetic profiling in the information that we were able to get from big data.

I really think that's a real dynamic. I think it's absolutely critical and so
I see the biobank and registry as incredibly important and so we've been
building that and designing it in collaboration with patients, physicians and the community so that we can create a registry and biobank that is tailored for the end user.

We're asking people to give a bunch of their own personal information and so we want to make sure that

1) it's the information that they feel important and

2) that it's going to be useful for them too.

It's not just data that’s entered into a computer and that's the end of it.

So some of the things we have been doing, a big part is we've been creating a symptom tracking app. And that was really based on a passion that I have that seeing information at single time point. It's information right, but it's so unlimited. It's the difference between the photograph and a moving picture. So right, the information we get from looking at photographs versus watching a movie and so I felt passionately that we wanted to do longitudinal data capture.

So we went out the community and said ‘what would be like the top five symptoms we'd want to capture?’, ‘how would you want to capture them?’, ‘how would you want to see data from those by symptoms?’, ‘how often would you want to capture them?’ and really worked with members of the community through that survey as well as from phone interviews to understand how to develop and design an app.
So we're really pleased where that’s got to right now.

That's really sort of been the hold up of rolling out the registry.

It’s that we really wanted components central to the whole design.

So that's fairly far along. We're working with the developers and we're hoping to take it and serve into testing probably over the next few weeks.

So we're getting really close, and we'd be happy to share some a sneak peek with your community to see some early screenshots of the app in terms of what it looks like. So we'll share those with you and you can push them out. But yeah, that's kind of where we're at with the app.

And then the other thing that I'm really excited about with the registry is we've been forging a partnership with the Cure ME group in the UK.

They already have a great repository and so could we work with them so that we could merge those datasets? And maybe they could use the

app too and so that we start to build a global depository not these disparate pieces of information. So with them we finally found the ? and they've been great partners and we're hopefully going to be able to launch that as part of it. And then once we've got them on board, my goal is to reach out to other groups in Australia, or you know, around the world, just come with your data. And so that we can start to see trends and ??

A: that's fantastic. One of the questions that our members had was
‘Would the registry, and or, the app be usable by those who are in the States?’

SW: yep

A: So obviously, from what you've just said, the intention is very much
that the international community is able to get involved?

SW: Yeah I want to make it as easy as possible.

We're casting a fairly wide net in terms of allowing people to enter their data. We are going to capture whether they being clinician confirmed some of diagnostic criteria kind of on the back end so that we can pass out the information.

But given how difficult it is for many people to get to get a diagnosis from a clinician we felt that it was important to be wide, right, and that as long as we could pass it out on the back end we wanted to encourage people to enter their data if they felt like they were really suffering with this disease.
So both in terms of that, but then gets your point but also globally. So we'll have the partnership with the UK group and then the registry that we're setting up will be available to everyone around the world.

A: Brilliant, and with regard to the registry will that be a source of potential recruits for trials is that a potential use for it?

SW: Yeah definitely. So how the empirical case use of it [will work]
is that we'll have this incredibly rich, both in terms of data points and in
terms of number of people, incredibly rich data sources ?? selection.

And so, as a researcher, we're going to create this interface where you can go in and search for ‘I want patients of a certain age who had the disease for a certain amount of time’ and it will spit out that information, that data from those patients. So you as a researcher will be able to access that.

And then you can request the specimens, and so it doesn't matter if those specimens are in the UK or the US or in Australia. Wherever they are they'll be tied to the information on the database, and so they can get shipped from wherever they are.
So that's kind of the empirical use of it.

Your point about ‘will it be a way to connect patients to or the research that's ongoing’, absolutely.

So patients, probably when they consent initially, will consent to be contacted if the research opportunity presents itself and researchers have that option to say to us ‘we're looking for patients, in this age group with this kind of disease etc’ and we can connect the two.

A: Brilliant. The main reason for asking that is that, to be honest truly, before this interview it occurred to me with our efforts with the NICE guideline reviews here in the UK. Really one of the goals would be to remove graded exercise therapy and the PACE style CBT from being viewed as treatments for ME, which obviously could have quite an impact on what services are actually offered for patients within the NHS. And at the moment, any researchers here in the UK would go to the chronic fatigue syndrome clinics principally to try and find patients for them. Now if NICE remove from the guidelines graded exercise therapy and CBT then there is a question about do the clinics still continue to exist or not? So I saw the registry as a potential answer if, should that ever happen.

It's much more, you know, a way for, particularly uk-based in that example, uk-based researchers to find potential recruits for their studies.

SW: Yeah, no absolutely, that’s going to be possible through the registry, so the other thing I'll tell you about it, I'm quite excited about this idea too.

So when you as a researcher, when you search the data it's going to automatically tell you if another researcher has used those specimens
and this data in another study. And it’ll show you what they did, what
their results were and give you the opportunity to connect them so in that
way we hope that the research will just continue to build and build and
build.

So everybody's not going to it fresh. The potential is to look at how certain datasets and biosamples have been looked at previously.

A: Brilliant, brilliant. We do have a question about patient involvement and how important you see that but I think what you've just explained about the registry and you know how intrinsically involved patients will need to be with that really answers how seriously you view that as it as important.

SW: Yeah a little bit, to me it's absolutely fundamental.

So, you know, patients are partners in everything that we do and so you've heard already how we've integrated them into the designing of the registry and that app. We will also integrate them into a kind of Advisory Council who sit above the registry and when people apply to use the data from the registry they'll apply to this council. And we'll have patients integrated into that so they can see what kind of questions are coming in. So that's one thing.

A second thing is anybody who's part of the registry gets to suggest their own research. So we're going to democratize the research questions and people are going to be able to submit what they believe are interesting questions and people will be able to up vote them. And based on which ones are up voted we will push them to researchers and see if we can get get them interested in researching specific areas.

So that's another one.

And then the third one is I want to encourage the patient community to interrogate the data themselves. Right I'm sure among the data of the patient community there are statisticians and epidemiologists.

We want it so anybody who uses the registry can apply to use the data so we want to encourage the [players]?? not always with the traditional
researchers to be able to delve into the data. So those some areas on the on the registry specifically on the Ramsay, and I can give you another example.

So again we have a group of people reviewers who help us decide which proposals to fund. And for the first time last year we incorporated six patient reviewers onto that body of people so that they can weigh in and decide whether or not this was valuable research.

A: fantastic so the patient involvement particularly in a field which has, it’s possibly fair to say, had a patient exclusion for so long, you know,
obviously makes a huge difference to the patient population when they see their voice has been taken seriously, and are included in the ongoing process.

SW: yeah that whole ?? concept that I'm sure you've seen, right you have the amount you spend in clinical care is this teeny tiny bit of the iceberg that you share with the doctor and then the rest of the iceberg underwater. It’s all of the information that you have as an individual living with the disease and so I think it's ridiculous to think that you would not partner with someone who had all of that information to try and better understand what's going on.
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eta: spaces removed

Sly Saint · May 12, 2019

part 2

A: I'm not going to disagree with you. So moving on sorry I'm just checking my questions I think I've covered everything in that area.

So for yourself, trying to remember, how long has it been now since you've been in your role?

SW: It's coming up on a year, I joined just before the UK conference last year.

A: Right, right, so not quite so new to the field but perhaps still with a recollection of perhaps stepping into the role, can you describe how the ME research field is different to the research fields that you are familiar with previously? Are there any easy comparisons to make or any similarities, to be honest?

SW: yeah it's an incredibly difficult disease. right it had to be ?? disease ?? historical and to some degree current problems in terms of accurate diagnosis or getting people to take it seriously in terms of characterizing the disease and then obviously the issue with the amount of research funding which is spent on the disease and how that limits the amount of bench research that can take place.

So I think I mentioned before that I come from a cancer background where huge amounts of money and a huge amount of research is going on and they think that you get a bolus of information from academic research which is then useful enough to get passed along to the biopharma industry who can then pick it up. And then we have massive resources both in terms of millions of smart people and dollars can really help to drive discovery. And I'm a big believer in that industry and how it's changed lives. I mean breast cancer has gone from being absolutely fatal to being a chronic condition or a cure in many, many instances. And so, that to me feels like the biggest difference. That there is more money. More money in research which has enabled a bolus of information to be discovered which then has been able to ignite interest from the biopharmaceutical industry.

So I think on the research side with ME, I was just at the NIH conference, it just feels like we're getting some momentum. You know, there's still a long way to go but it feels like people are really into it, they wanna do more, wanna stay engaged and okay how can you get more money? And it feels like a very positive energy and that it's moving in the right direction, but we just need to do more.

A: Well picking up on you mentioning the NIH there; obviously no I don't have the direct quote so I maybe misquoting them possibly but essentially it would seem that we have been told that there isn't sufficient basic research done already for them to know what kind of targets that need to be investigated. And for them to then fund that research on specific targets and the question that comes to mind is obviously how can we get that basic research done without their funding?

SW: I think it’s a really good point. You know about our Ramsay Program, and I think that is definitely one mechanism where we've been able to take private dollars from donors and funnel them into bringing people into the field, forget generating enough speed data to apply for an NIH grant.

I do think there's still a gap potentially in the middle, so some of our Ramsay research is like ? has been incredible. We got going with some seed funding and he's now just got the NIH grant so for him it was a very not easy trajectory but you know he was able to bridge that gap.

I think for a lot of researchers, the Ramsay program allows them to create some initial data. They don't have quite enough to get an NIH grant, they don't have anything solid.

So one of the things we're trying to do this year with our Ramsay program is bring the researchers together more so we're creating like a swipe channel where they can communicate in real-time.

We're going to have a monthly call where they can talk to each other about what they're doing. We've applied for an NIH grant to do a conference which is all about bringing them together around collaborative research proposals.

So our goal with all of this is twofold. One is to make sure they feel engaged and supported but a second goal is really to see okay, you've got a piece of information over here, and you've got a piece over here. Collectively you've probably got enough of a hypothesis to apply for an NIH grant. So individually you don't, but could we do something together?.

So we're trying to explore that and even providing grant writing supports for them to try and facilitate that process a bit more so that we can push more and more people to get some bigger dollars.

A: So I mean great, from my point of view, in terms of, I mean you mentioned drug companies previously. Without meaning to be too rude to them there they are always, you know, they would seem to be always late to the field so you know presumably the basic research is going to have to be done and if we can, presumably if we can find more private funding, that would seem to be one of the avenues that is required to get the research done to build our knowledge base to then identify targets. Like you were saying to then present being able to present to the NIH ‘we've got this target, fund us’.

SW: yeah I mean, right now unfortunately I think that that's our best bet, right, I think it's difficult in the sense that even most of our funding comes from people affected by the disease or people who are related to people who are affected by the disease.

I'd like to see a broader ?? so that we are getting private funding from
people who are not directly affected by the disease but realize what a terrible impact it's having in people's lives. So that's definitely one avenue and I think to be honest it seems it feels like one of our only avenues right now in terms of getting a bolus of information. Specific to the drug companies, I do think the big data is going to be compelling, honestly.

If we can go to them with it and say ‘look we've got ten thousand people's worth of data and biospecimens in here, what could we do?’ and just based on my experience in clinical development, companies they're full of really smart people. One of the things I loved about working in that industry was just everyday speaking to smart people about solving difficult problems and this is a difficult problem.

And I know if you could get not the ?? people, not the heads of the company not the business people but the clinical development problem solving people from pharma together in a room and say ‘we've got this, this is what we think the model might be this is the information we have this is a big data set we've got. These are the biospecimens. How could we move forward in some kind of exploration’? I mean, who knows, but I'm optimistic that something positive would come out.

A: Er, random thought that just occurred to me. I'm aware massive companies rigidly such as Google and other places will often allow their employees you know kind of personal projects if you like.

So I have no idea if the same might apply to pharmaceutical companies. They may want their employees to keep working on the main task at hand but it was just a random thought that possibly there are pharmaceutical companies out there that may allow that kind of thing to happen.

SW: I don't know if there are. I think, yeah I'm interested in it, and all of these things against it in that industry. It's like, you do a little
piece of work to get to a certain gate to understand whether you have enough information to take it a little bit further and a little bit further.

So the initial ask I think it's fairly minimal, but it's people their interest and I mean even if we get to that place and they say ‘you know what, what we actually need is this thing that we don't know yet’ at least we know we can work on that thing.

A: Yeah so you mentioned the Ramsay Awards. I'll see I think I'm right in saying that the latest opportunity to apply opened Wednesday was it?

SW: Oh yes. I don’t know if you saw it but Alison on my team put together a really cool researcher toolkit. I encourage people to take a look at. They just talked about, kind of, the state of the state in terms of our knowledge base as well as shares from the 20 commerce with these models that you feed into the NIH and some potential areas that people could pursue in terms of the research proposal so it's a nice add-on that we did for the first time this year. And then just a couple of other things we're doing this cycle is where it would be wise in reaching out to people so we're going to directly reach out to researchers in the therapeutic area.

‘You're maybe doing something similar that could have applicability to this disease’ and we're going to share the proposals and training through a couple of different people - coming out from a different field. And another thing which we are doing this year is we will carve out a collaborative proposal.

So you can specifically submit a proposal that will get evaluated separately from all of the proposals for the collaborative proposal ??

I think you might have seen NIH were gracious enough to share the announcement with their community so we’re just we're trying to go wide and we're trying to make this the biggest year yet for our Ramsay project (??)

A: Ideally how many awards would you be looking to make or is that dependent on the scope of them or

SW: Yeah I mean, last year we did seven which was our biggest year up to that point we had previously done I think between four or five, around that level. So we did seven last year that was really based on the quality of the proposals we got in.

We'd love to do at least ten this year and potentially more. We know if we have great proposals and we have the dollars we’ll do as many as get rated highly by our reviewers but at least ten anyway.

A: Okay and you mentioned the collaborative one with that. So is that looking to be of one application featuring several groups presumably working on the collaborative idea there?.

SW: I think we are designing it by at least two labs working together on ??can be done in different locations but the intent is that they'll be together.

A: Okay, brilliant. I think I’ve run out of questions. If there's anything else that you can think that obviously on the, well, either on the subjects that we've covered already or anything else of Solve’s efforts and work that you'd like to highlight now's the time.

SW: I feel really great about this interview.

I feel like we've covered the kind of the two main pillars for us right now; the registry and Ramsay. The other thing I would ask, because people can push out the Ramsey RSA, if they know people who are doing research even if it's research in a different area that's exactly what I'm trying to do. So we'd love that, and then we can also share a link to pre-register for the registry. We've got about 1,200 patients already pre-registered so there's a lot of excitement about that. And we want everything to move as quickly as possible so we can start to get those patients entering data but if people are willing to share the registry link the pre-registration we'd really appreciate that.

A: Right, brilliant, okay thank you very much for your time Dr. Whittaker

SW: No problem.
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eta: spaces removed

MEMarge · May 10, 2019

Slightly off putting that Sadie has the initials SW!

Seriously though a great interview and transcription. Thank you both.

Andy · May 11, 2019

In private conversation someone asked if the ability to add user-defined symptoms would be available in the app, and as I didn't know the answer I asked Solve, and as I thought the answer was pretty useful I'm posting it here, with their permission.

The app is currently set up with a pretty comprehensive list of ME/CFS-specific and chronic disease symptoms. We have vetted the list with clinicians, researchers, and we are currently getting input from people with ME. For the initial launch of the app, we are planning to keep it to a defined, broad list that people can select from to add symptoms to their tracking dashboard. This will ensure quality and consistent of the data and still provide a broad list to choose from. We are considering how to allow for further customization in future versions of the app because we want to make it as flexible and relevant to the individual as possible
Click to expand...

rvallee · May 11, 2019

Andy said: ↑

In private conversation someone asked if the ability to add user-defined symptoms would be available in the app, and as I didn't know the answer I asked Solve, and as I thought the answer was pretty useful I'm posting it here, with their permission.
Click to expand...

User-defined data is very sharp double-edged sword. It especially adds to the thing everyone forgets about web apps: moderation, so much moderation.

It's one of those things that are best for later.

theJOYdecision · May 15, 2019

This biobank initiative is so flippen cool!

Andy · May 15, 2019

Please like and retweet/share these if you appreciated Sadie and Solve giving us the opportunity for this Q&A.

https://twitter.com/user/status/1128719664777920512

Andy · May 22, 2019

Oops, sorry, just realised I hadn't updated the original post and YouTube video description with the link to @Sly Saint 's transcript - many thanks to Sly Saint for creating that for us.

Sunshine3 · Aug 15, 2019

What worries me is anyone can use the app, so people misdiagnosed could well use it. Are we just going to end up with nothing meaningful from information gathered? Apologies if this same question has been asked already.

wigglethemouse · Aug 15, 2019

Sunshine3 said: ↑

What worries me is anyone can use the app, so people misdiagnosed could well use it. Are we just going to end up with nothing meaningful from information gathered? Apologies if this same question has been asked already.
Click to expand...

There was a launch presentation by Solve ME/CFS that you probably want to watch to understand more if you haven't seen it already. At 19mins she talks about setup where you complete a diagnostic criteria section, and tick whether the diagnosis has been confirmed by a healthcare provider

https://www.youtube.com/watch?v=Hc03M-lM6FE

Obviously, where this app is used in clinical studies such as the recently announced Australian ME Biobank I'm sure they will have their own entry criteria, stricter than this App alone.

I guess the true answer to your question is they won't know for certain until they give it a go.

If you have further thoughts you could reach out to Solve and ask your questions directly....

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Researcher Interactions Video: Science for ME Q&A with Dr Sadie Whittaker from Solve ME/CFS Initiative, May 2019

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