(This blog was compiled from several interviews conducted over the past year or so.)
Sadie Whittaker, Solve ME’s research director, got her PhD in molecular biology at the Univ. of Birmingham in the UK. After I quailed at how difficult that must have been – organic chemistry nearly finished off my academic career – she said the most important quality in getting a PhD was persistence – which just happens to be a much needed quality for anyone working in this great endeavor. It’s often not the epoch making events that make the difference as much as the steady work – putting one foot in front of the other again and again and again.
At Amgen, Sadie Whittaker enrolled federal agencies and corporations to assist with the campaign to fight the Ebola virus in Africa.
Next, she moved to Amgen, a pharmaceutical company, where again she worked across a wide variety of areas including clinical strategies, developing clinical trials, community involvement, determining who to partner with, physician education, etc.
She said she has this “Why shouldn’t we do this” approach – that sometimes gets her in trouble. There’s a problem, there’s a solution – let’s just fix it! Her past experiences have made her a huge believer in the strength there is in numbers and the power of collaboration.
Take the Ebola epidemic in Africa. Whittaker was working with healthcare and advocacy in Amgen when the deadly Ebola virus exploded across parts of Africa. Vitally needed healthcare was impaired because the remote villages, mistakenly thinking that healthcare workers were bringing in Ebola, were not allowing them in.
That was definitely a problem and Whittaker thought she had a solution – which was going take involving lots of parties. First, she got the CDC involved, and then created collaborations with PR and advertising companies in London. She knew someone who worked on malaria who knew somebody who knew somebody. Eventually, a volunteer effort came together. The group used soccer players across the African continent to raise awareness in Africa and then created compelling output that raised awareness disease over here.
After Amgen, Whittaker started a consultancy practice focusing on private/public partnerships, healthcare communications, advocacy, and engagement strategies. While doing that, she was approached about the Solve ME job. She didn’t know anything about ME/CFS at that point, but with her background in hard science and academic research, the clinical environment, pharma, public health and advocacy, she thought her skill set was a match.
I asked her about working with a still controversial disease. She said it didn’t take her long to realize that the disease was real – the only controversial aspect she now sees is the people who don’t get that. Once she realized she had the skills that could help out, she was on board.
I asked if anything surprised her. The one thing that did was the complexity of all aspects of the disease – understanding its biological underpinnings, finding ways to attract pharma, the need for better medical education, etc. This complexity surprised her, but that was fine. She said she enjoys working on big problems, taking them apart, and figuring out how to solve them.
With regard to the big picture, she didn’t envision a silver bullet changing everything in ME/CFS. Steady consistent progress in multiple areas was going to be the ticket; i.e. doing the 20 or 30 things that need to be done. You do the research, you get CME’s for doctors, you reach out to the American Medical Association, you build a Patient Registry, you advocate in Congress, you build a strategic plan, etc. At some point it all comes together – real disease awareness, real disease funding, the attention of drug companies, etc.
That’s how Whittaker’s Ebola campaign worked out. Whittaker had an idea, enrolled her company in it, enrolled the CDC in it, enrolled people in London and Europe in it. At some point, enough people came together that a tipping point was reached, the campaign happened, and the villages in Africa with Ebola benefitted.
An ME/CFS Moonshot?
Sounding much like Ron Davis, she said we need a strategic approach to fill in the gaps in our knowledge and move forward. She said she was struck by how passionate and committed people are to solving this disease, but feels we could do a better job of communicating and collaborating more openly.
Whittaker proposed that an ME/CFS moonshot similar to the cancer moonshot could inject energy and action into this field.
Whittaker was part of the year long NINDS working group, which laid the foundation for a strategic plan for ME/CFS – a potentially groundbreaking achievement. Calling it one of her best experiences working in the federal arena, she described a working group that truly worked: the members were enthusiastic and collegial, and the leader – someone outside the ME/CFS arena – and the group worked efficiently to get the job done. She thought the feds took the project very seriously and they spent a lot of time making sure the recommendations were practical and could be executed.
Whittaker proposed that an ME/CFS moonshot similar to the cancer moonshot could inject energy and action into this field[/caption]
It was a good start. She noted that, at some point, the major stakeholders in cancer got together and asked themselves, “What is preventing us from curing cancer?” The result – the Cancer Moonshot – resulted in 12 NIH initiatives to get at the fundamental issues keeping us from moving forward faster on cancer.
What, she asked, would happen if we could develop some sort of unified approach that galvanizes people inside and outside the field to move faster on ME/CFS? Could a moonshot type of approach ignite concerted, cohesive actions that wouldn’t otherwise be done? This didn’t seem like a pie-in-the-sky idea from a pie-in-the-sky thinker: Whittaker kept referring to “deliverables” and identifying “executable actions” – the kind of boots-on-the-ground factors that need to be assessed for any large project to succeed.
Drug development is a big need. With her background in pharma, I asked about getting them involved. Getting pharma interested in ME/CFS, she said, would be massive. She would love to get pharma around the table and find out what it would take for them to get interested in this disease. What roadblocks are stopping them?
In a disease like ME/CFS, big pharma would change the lay of the land in several ways. For one thing, pharmaceutical companies affect more than treatment. They’re a combination of drug developer, educator and PR firm. They can go to extraordinary lengths to get their products out. Take migraine – at one time it was mistakenly seen as more of a bad headache than anything else. When migraine drugs started showing up, the drug companies created educational campaigns to: a) inform doctors how to diagnose migraines properly’ and b) help patients get their doctors to take them seriously.
That brought up the doctor issue: not enough doctors resulting in people not getting diagnosed and treated. What can be done to address that? If a group comes up with a plan, can they use that to get funding?
The goal would be to simultaneously move all the levers in the hope of creating a tidal wave of action. It’s just an idea – a kind of embryonic possibility – but it demonstrates something this field needs: vision and the willingness to cut across boundaries and collaborate. This field has too many silos, too little collaboration, too much carping and too little willingness to forgive and forget and move on in support of a common goal.
A Global Patient Registry
Whittaker clearly believes that Solve ME’s Patient Registry will be part of the solution. It’s a potential asset which could, among other things, entice big pharma, but the best thing it will do is provide data – lots of it.
Whittaker doesn’t have a favorite ME/CFS research topic – what she really wants is more and more data. She’s fascinated by the potential big data has for solving ME/CFS. Big data, she said, transformed the cancer field she worked in. Breast cancer used to be breast cancer. Now it’s known to be at least 10 different diseases. Dozens of treatments can now even be tuned to your genotype. It’s all due to large data sets which allowed researchers to do a deep dive into breast cancer.
Getting the kind of precision needed to identify the subtypes of ME/CFS we all know are out there is going to require getting some big data. That’s going to require getting in depth data from large numbers of people with ME/CFS and following them over time.
Solve ME’s Global Patient Registry will include U.S., Canadian, U.K. and Australian patients.
Enter Solve ME’s long promised Patient Registry. If there was only one project Whittaker could work on, it would be the Patient Registry. The long promised Patient Registry has been a work in progress for quite awhile. The launch has been delayed for the best of reasons: its reach has been expanded exponentially over time. Originally designed to be a simple online registry in the U.S., where patients could update their data every six months or so, it’s now projected to provide a moving picture of the ME/CFS community’s health over time.
Aside from the massive initial data collection haul the Registry will get when people with ME/CFS enroll (including demographics, medical history, symptoms, triggering events, medication use, test results, quality of life and functionality questionnaires), the Patient Registry will incorporate a symptom tracking app that will give researchers real-time snapshots of how people with ME/CFS are doing and what is affecting them. At some point, Solve ME hopes to integrate wearables into the program.
Beside delineating subsets, some of the other goals are to tie together biological and treatment data with symptom data and use them to predict things like when PEM will happen, what accelerates recovery from a crash, and what treatments work and don’t work.
That big project got bigger (and more complex) when Solve ME went international and began to enroll partners in Canada, the U.K. and Australia into the project. Solve ME collaborated on both Alain Moreau’s Canadian ME/CFS grant and $1 million dollar Mason grant to Emerge in Australia. The result – one giant international ME/CFS database – and lots of data.
When it’s launched, Whittaker – seeking to kill as many birds with one stone as possible – plans to use the Patient Registry to raise physician awareness. Expect to hear more on the Patient Registry around the end of this year.
Magician
I asked her what might surprise the community about her. It turns out that Sadie Whittaker, PhD in molecular biology, is also a student of the magic arts – not the dark arts mind you – but the magic arts. She takes classes at the Magic Castle – a historic magic center in Los Angeles.
A Christmas present and a New Year’s resolution started it off. Initially she thought the idea was ridiculous, but making her way to the Magic Castle after work, she found, to her surprise, the fatigue dropping away. Seeing magic done effectively blows your mind, she said. It exercised a different part of her brain in a way she called utterly refreshing. Magic, she said, was a creative, cool and fascinating underworld.
Let’s hope she can make some magic with ME/CFS as well.
- Solve ME just announced the latest round of Ramsay grant awards. They will be covered in an upcoming blog.
Check out Llewellyn King’s interview with Sadie
Great reporting, Cort. Whitaker’s interest in Big Data and her experience applying it to other illnesses sounds promising.
I watched Llewellyn King’s interview and while he was summarizing the core issues that people with ME/CFS deal with (sudden onset, mold issues, the “price list” of exertion, the feeling of being separated from the rest of the world by a glass barrier), I kept thinking, “yep, that’s me, exactly.” I’ve never felt like the various official criteria for a diagnosis of ME/CFS adequately described my condition, but King’s almost offhand descriptions fit me like a glove.
Is there any word on when the patient registry will launch?
Great interview LLeywelen did with Sadie. I think he’s getting better and better at distilling what’s going on in ME/CFS and she talked about quite a few of the points mentioned in the blog.
Always hard to know when a large, complex (and now international) effort like the patient registry will launch but Sadie thought around the end of the year.
Oh this makes me so happy. Sadie Whitaker PhD is a blessing.
Eagles Syndrome Classic or Vascular types Styloidectomy external one side at a time at neck/ear. CT Contrast & Angiography diagnostics
3D Images once CT Contrast is done measuring also the both bones each side for Eagles Syndrome
Moonshot? Why not take a GoPro and interview Erik Johnson on the summit of Mount Whitney?
Would that it were that easy. That might be an effective way of getting the mold issue across to some patients but it would likely do nothing to convince the vast majority of doctors to treat mold or researchers to so mold studies. Plus ME/CFS is very heterogeneous – and mold is not the answer for everyone or probably for most people.
Getting into the medical mainstream – where something will benefit the most people – will require research studies and clinical trials and doctors reading about those studies and clinical trials. That’s also the most effective way to reach patients. It takes a village – everyone working together.
If a patient registry can get off the ground I can see things at last moving forward. I have long said that what we want is for someone to be listening to what the ME sufferers are saying. They need to be telling their stories and describing their symptoms and if this can be all gathered up in one place and the data analysed with modern techniques like A.I. then we may start to get where we need to be. The big Pharma companies will only get involved if you can say, this is the problem, now solve it. They need all the information to get started, then we may see something happening at last.
I have heard again and again that pharma is not interested in ME/CFS because it is a heterogeneous condition and no one is sure what it is. If the Patient Registry can start to identify subsets that alone will be worth it.
“I have long said that what we want is for someone to be listening to what the ME sufferers are saying. They need to be telling their stories and describing their symptoms and if this can be all gathered up in one place and the data analysed with modern techniques like A.I. then we may start to get where we need to be.”
This is extremely wishful thinking….The medical professionals that choose not to be indoctrinated are the ones that will listen. There is no on size fits all to this kind of biological and physiological response for patients, therefore western medicine doesnt care, nor will it ever.
Yes there is no one size fits all for ME/CFS….yet, but there was no one size fits all treatment for breast cancer (which was just breast cancer instead of 10 different varieties) or migraine (which used to be lumped in with headaches). Headache researchers worked very hard at delineating the different kinds of headaches from one another and it’s worked – now we have different drugs for different types of headaches.
I think the Sadie is saying the same thing can happen here. We probably have all sorts of people exhibiting exercise intolerance and post-exertional malaise. Now we need to disentangle the different kinds of PEM and what is causing them. Luckily we live in the era of big data and the ability to sift through it. I see no reason why, given the funding and community participation, we shouldn’t be able to identify biological subsets and ultimately develop treatments (or find ones that are currently available).
Once that happens I am positive that Western doctors will turn somersaults over their ability to finally treat this very frustrating group of people (for them)…(and us). Think how much easier their job will be.
I hope everyone with this disease will participate in the Patient Registry.
Hey Cort…I was contacted by Dr. Whittaker and her “Solve ME” website a few months ago about registering for their database… She gave a good explaination about what they’re doing and their plans for the future…I thought it sounded very promising and sent her my data…I periodically get updated e-mails about events and topics they are doing and sometimes how the research is progressing…
Good to hear. I am eager to get my data in there when it opens up and seeing what happens. It’s one more step on the road. I particularly love the fact that Solve ME and Sadie have broadened their scope and made it an International registry.
I really like the focus on a *global* patient registry … leading to big data … leading to identifying subsets … leading to attracting big pharma … leading to an effective treatment (dare we say).
Sadie’s bona fides from her experience raising awareness in Africa re: Ebola will be an excellent asset.
unlucky and sad, it isall to late for the “hoeme/bed bound” or badbound like me, the 25% severelly affected ones, who are declining and declining and even not declining but “old”, we are never going to see any of this, or a cure, or a little bit better, or tests. all take ages, ther is no money, psychiatrists will not without a fight leave their income and we can now no more!
they forget almost everytime the severelly ill ones, even do not speak of addapted homes with adapted care and many off us are totally alone.
I agree with you Konijn that the situation for you and others like you, who are so very ill and isolated, is extremely ‘unlucky and sad.’
The only way to get the help that you need though, I think, is the Sadie Whittaker approach.
A collaborative, integrated system, focussed on working together in all aspects of this illness – funding research, big data, treatments, physician education, raising awareness etc, – to actually assist people with the myriad of symptoms/challenges they experience on a daily/hourly basis, is needed.
Unfortunately millions of pounds of research funding has been wasted on poorly done ‘studies’ like the PACE ‘trial’ and that is a tragedy for individuals, who are dependent on some sort of breakthrough occurring.
Hopefully a more rigorous vetting process is in place, to curb the promotion of such insular and ignorant beliefs, (at the expense of the British tax payers and the health and wellbeing of millions of people around the world).
What I have painfully learnt through challenging unacceptable practices in the child care system in the UK and Counselling/Psychotherapy here in Ireland, is that a more strategic and sustained effort is more successful.
Just because something is obviously completely wrong and damaging to people apparently isn’t enough, which I continue to find baffling…
That’s why I’ve approached a local politician to ask her to help me raise awareness and point out that the psychiatric approach is incorrect for this/these conditions.
I’m not a researcher, I don’t have lots of money to donate for research but I do have the means to contact people, am fairly articulate (on a good day!) and know that if enough people chip away at this, progress has a better chance of being achieved.
If you read this Konijn, I often wonder how you’re getting on and others who are so severely ill…
I think it a terrible indictment of how our culture’s have evolved, that people are so isolated and ill and are given an incorrect psychiatric diagnosis that has no credible basis, that then prevents them from receiving the help they so desperately need.
The only thing I can do, is work towards a better future.
Your mention of the PACE trial actually provided hope. If they can spend – what $8 million dollars or something like that on PACE, then the UK can afford to dump some big money into good ME/CFS studies.
The ME Association’s Biobank and Registry – which is being tied with the Solve ME’s Registry – is currently being funded by a $2.1 million grant from the NIH in the US. How about that! Good for the NIH for looking outside the U.S. to make a difference.
https://cureme.lshtm.ac.uk/major-announcement/
I am even to ll for that and live allone on top of it. my caregiver, my dad, past away 10 years ago. I can no more, my boddy can no more. we die in silence…
we do not can survive, some if they are lucky to have still a caregiver. but otherwise. decline, decline, decline, get crazzy from isolation in bed, not knowing how to eat, not knowing when the end will be there, hell in hell in hell. withney would have long died or commited suicide if he had not the care of ron and janet, would not have somewehere hope in his illness if ron-omf was not finding a cure for him,would not live anymore with all ron and other specialists do for him (keeping him alive) etc. that is not for ordinairy people like us. also if he must go to hospital, be shure he is taken seriously, gets a vip treatment and the best specialiists. we, we can have breastcancer for excamle and even do not make it to a hospital, would even if we could further decline, the noise, the light, the day/night rythm, the heat, etc and they would push us to be normal except the cancer.
but thaks for your understanding!
Konijn your situation is heartbreaking and I’m so sorry that I can’t do more for you.
You are often in my thoughts. I don’t know what Whitney would say to you if he could but I strongly believe, without doubt, he would want you and others to get the best possible care too.
Hopefully the neglect of people like you will be revealed and effective action will be taken, in the near future.
It will be very important Konjin that you and other people with a very severe case of ME/CFS find a way to get yourself in the registry. We need to find a way to do that.
I am even to ll for that and live allone on top of it. my caregiver, my dad, past away 10 years ago. I can no more, my boddy can no more. we die in silence…
placed it wrong/bad head
Don’t give up Konijn!!..God has something for you and will help you through this!!!
I am so sorry for what you are going through. My daughter seems to grow worse each day. No doctor, medical or functional, has been able to help. A couple of doctors just took hundreds and even thousands of dollars for testing that did no good. I pray that you and she may be lifted up and somehow find a way to live each day with some sort of joy. I pray for you not to feel so alone. Perhaps someone out there will find an answer that helps. So thankful that Cort continues to bring out research information as he finds it. We all need that glimmer of hope.
What a truly Amazing, Awesome Lady to have in Our Corner among the many..Blessed, Thankful and Grateful to her and All! ?Keeping all The Hope for better days ahead for Everyone! Thanks Cort your Amazing gift is deeply appreciated!??
Cort, new study just out from Staines et al in Australia and a potential treatment pathway. Would be interesting to know what their next steps are, do you have a link in to them to find out?
https://www.frontiersin.org/articles/10.3389/fimmu.2019.02545/full?fbclid=IwAR2EpIwwRRyp82nzBRZTFJM7JBfvwspMuGxJyovwRNFukAwvlXlAF1mWmEc
Thanks! I could probably get a hold of someone. 🙂
Cort,
Could you find out, and tell us about, the 22 different sub-types of ME/CFS that long-time ME/CFS clinician Dr. Charles Lapp of NC told you he’d been able to differentiate, when you interviewed him for your blog soon after he retired? THANK you!
Angela and konijn,
I am another one, a 63yo woman with FM and severe ME/CFS, who is bed-bound, living alone (at D.C.’s edge). I also have accompanying severe pain from these and 11 other sources.
Are there others of you — in D.C. or southeast Montgomery County … or bed-bound with severe ME/CFS living alone — with whom I might email?