“I firmly believe that a global registry and biobank will be the single most impactful driver of progress in ME/CFS, deepening our understanding, helping us pick apart the heterogeneity, and driving us towards treatments.” Sadie Whittaker – SMCI
The You+M.E. Patient Registry is now a year old. It’s available to all ME/CFS and long COVID patients and healthy controls in the U.S. and Australia.
The You+M.E. Patient Registry is the biggest single infrastructure bootstrap the ME/CFS community has ever produced. Patient Registries are not easy to produce – it took Solve M.E. four years to produce theirs. Fibromyalgia – which is at least five times the size of ME/CFS – doesn’t have one. Irritable bowel syndrome has 10-20 times more people than ME/CFS – and doesn’t have one. Lyme Disease does, though. Its 2015 patient registry has more than 15,000 people in it. A major Migraine Patient Registry that combines patient data, brain scans, and other biological measures showed up in 2018.
The reason many major diseases have patient registries is that they work. Besides providing insights no other program can, they also reduce research costs, and simply by drawing researchers to them, they can dramatically increase research funding.
In her October 2019 post, “Patient Registry is the Key to Achieving Big Data For M.E.“, ME Action’s Jamie Seltzer reported that patient registries have been particularly effective research accelerators in rare or underserved diseases. Studies on Rett Syndrome, a rare neurological illness, for instance, increased tremendously in the years following the creation of the registr
Solve M.E.’s Sadie Whittaker noted cancer patient registries allowed researchers to precisely target cancers with therapies. Lyme Disease believes their Patient Registry will help end an NIH-funded treatment trial drought that’s lasted almost 20 years.
The You+M.E. Patient Registry (PR) could potentially do the same, as it provides the only source of widespread treatment information that researchers, the NIH, and drug companies are likely to listen to. Because the You+M.E. Registry is also collecting patient data, and will be collecting biospecimens, it has the potential to determine which types of patients benefit from which treatments. The point is that every data point you contribute to the PR has the potential to move this disease forward.
The Patient Registry checks some pretty big boxes for ME/CFS:
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- Research accelerator
- Subset diviner
- Drug development promoter.
Patient registries are not sexy, though. While they’re potentially more valuable than any one research effort, they typically don’t generate a lot of excitement. The fact that an organization has taken the time, money, and resources to build a patient registry indicates to me that a research field has reached the level of maturity where it’s willing to engage in the hard, unglamorous work needed to be successful.
It certainly hasn’t been easy or cheap. Solve M.E. spent four years developing the You+M.E PR. It hired a full-time person to manage it, and then created a new award package (Stupski Awards) to provide grants to researchers. (They’ve funded two of them.)
Is the You+M.E Patient Registry Working?
So, why the question “Is the You+M.E. Registry working”? Its registry is clearly working. By including COVID-19 patients, expanding to other countries (Australia, the Decode ME study in the UK), creating a tracking app, funding researchers, Solve M.E. has proved to be a nimble, creative and committed registry manager. The registry itself is working just fine.
Join the You + M.E. Patient Registry
A better question might be whether we as a community have responded to the promise that the registry is. A year and a month after it opened, the registry has 5,014 participants, just over 3,000 of whom have ME/CFS.
Five thousand people is certainly a lot of people. Thus far, the 5,014 people who have provided their information to the registry have gifted the ME/CFS community with over a million data points to help researchers understand ME/CFS. A five-thousand-person study would be one of the largest, if not the largest, in terms of participants, studies ever done.
I can’t help but wonder, though, whether the possibility the registry presents for ME/CFS is even close to being fulfilled. Diseases like ME/CFS and/or long COVID probably affect millions of people in the U.S. For me, the one-year anniversary of the You+M.E. Registry has brought to the fore a decades-old nagging question – “where is everybody”?
Health Rising (HR) has pushed the registry hard. Solve M.E. has pushed it even harder. So why don’t we have 10,000, 20,000 or even 50,000 participants in the registry?
One possibility is that Solve M.E., and HR, and other groups that have publicized the registry have maxed their audiences out. Most everyone they can reach who wants to be in the registry is in the registry. It’s also possible that a considerable number of people are planning to enroll in the registry, but haven’t yet, or that a considerable number of people aren’t willing to enroll in it.
That’s where the Health Rising survey below comes in. It seeks to find out where everyone – those who enrolled in the registry and those who have not – is about the registry.
This study just came in on my Medscape account
Abnormal gene profile found in chronic fatigue patients
Part of the study:
Among the genes upregulated were those for neuropathy target esterase (NTE) and eukaryotic translation initiation factor 4G1 (EIF4G1). “These genes are the targets for organophosphates and viruses, respectively,”
Hey Cort…Thanks for writing about the You+ME update!…Excellent journalism as always!!…I find it’s a good company to help encourage ME sufferers by their motivation and optimism…I did find them lacking in the DNA research side of things, so I wrote to them about setting up an offer to get samples from us ME people (maybe urine/blood) like Exterity/Chrome did…I believe the more, the merrier, especially if this FM/ME/CFS might be a mitochondrial issue or has some connection to it…
Thanks Eric. Great idea. Solve ME is funding Liz Worthy’s really quite fascinating genetic research – https://www.healthrising.org/blog/2019/06/02/gene-mutations-energy-production-chronic-fatigue-syndrome/ and the Registry is being paired with the Decode ME effort but I’m not aware of an effort to add large amounts of genetic data to the Registry outside of those studies. Your idea, though, demonstrates just how expansive Registries can be. TSolve ME is planning to add bloodspot data and it appears that these Registries can accommodate virtually any kind of biological data.
The number of studies that could be done simply analyzing all the data in a well stocked Registry/Biobank is simply astounding. This truly is a Brave New World.
Here in Australia, the Registry will be linked to the Biobank being set up here. I have registered to give a blood sample for this, though they have not yet started taking samples.
After suffering for so many years, I am not very hopeful that much will change for me. There is an extreme lack of will and understanding in the medical community here in British College, Canada.
I’m 71 years old and have been sick for 25 years. I have pursued all naturopathic, diet, food intolerances, Gut issues, blood work, heavy metal detox, pacing, etc. I fear that there is not much that will help me.
A tough road Cynthia but please just keep in mind that we’re entering an era unlike anything we’ve experienced before. More funding, talent, eyes, and technology will be focused on long COVID over the next couple of years than has ever been done on ME/CFS. It’s truly impossible to predict what will happen.
On se croise les doigts Cort. Félicitations pour ton bon travail.
I feel the same way, Cynthia. I’m 65 and have had symptoms of chronic fatigue for over 30 yrs. I am hopeful for younger people, however. Thankful I’m just a “moderate” case, altho it sure isn’t fun to have so little energy. We were rather isolated way before the pandemic…It’s a lonely, boring life. I’m grateful I can watch grandkids part-time, at least! They bring so much joy into my life.
I was very disappointed in their questionnaire. I had to do extensive typing in order to list my signs and symptoms. Why in the world did they not use a comprehensive check off list like the one developed in 2003 by Bruce Carruthers, et al? The easy to answer questions were weighted for psychological symptoms not physical symptoms….in my opinion.
I remember when the registry was announced: I was 10+ years into an me/cfs diagnosis and 2 years severely ill. I thought about contributing but I have data privacy concerns. After this blog, though, I’ll re-evaluate.
I did sign up for the Stanford tissue bank but that’s collected post-mortem.
i am wondering what me/cfsers are doing about the 3rd shot. Alothough i am 72 and have had me/cfs over 30 yrs I don’t plan now to take the 3rd shot. I had some issues with the lst two where my memory took a hit and so did my ability to take my supplements of thyroid and dhea due to heart racing,& my sleep got worse, and at this point don’t want to risk it. Wondering how soon the pills for covid will be available.
We share the same age. Lucky us.
I had the Johnson & Johnson end of March.
Took it upon my self & got the Moderna as a booster. We were attending our nieces wedding & didn’t feel comfortable traveling without the booster. I was a nurse prior to becoming ill so, ask several physicians if it was a good idea to go forward with the booster. All said yes. Good luck in whatever decision you make.
I did register for the Australian component however the initial registry had no facility to enter data then quite a time later, an email came to advise that there had been technical difficulties with the site and if I wanted I could email my concerns. I was quite happy initially to enter any data I could but just don’t have the energy at present even if I had the opportunity.
There was a later email to say that people were being contacted for blood donations however I think if anyone like me who lives remote from large cities or centres will not be physically able to participate. I think there are many reasons why people may not be registering. Thanks Cort. I didn’t fill out questionnaire as not appropriate in my case.
I’m waiting for the registry to be made available in the UK. I’m sure it would attract a good number of patients/advocates who are active on social media here.
I would think it would be a hit in the UK as well with its very active patient population.
Your poll doesn’t have an option for “my kids are sick but they’re under 18 so can’t be part of the registry.” 🙂
I assume that I am too old to be of interest to a patient registry. Researchers seem to lose interest in people older than 65, just like doctors. The once-helpful doctors have all retired. You did not touch on the question of age limits on the registry; is my assumption incorrect?
I have had this disease since 1989, and right now have no doctor with any knowledge of M.E.
Sarah, I got sick in 1987, and am 65 now. It’s just gotten worse over the yrs. I think it may have been aggravated by mold illness as well as chronic depression which I’ve had since childhood. I’ve also have the multiple sensitivities since infancy. I’ve NEVER had a Dr who knew anything about ME! Have lived in several states including VT, WI, MI, and now SD since onset of severe fatigue. I’ve also been to chiropractors, and would do more on the “natural” side IF it were covered by insurance. I have to be VERY cautious about any meds or supplements as I’ve had so many bad reactions which make my BP and pulse go up, making me feel anxious. It’d sure be nice to find at least ONE practitioner who understands a bit about this illness!
I feel the same Sarah. I am now in my 60s and have had this for more than 30 years. I signed up for a uk study using my 23&me data, but they turned me down because I was too old. Very short-sighted. I have met others who became ill around 1990 following an infection, like I did. This could be a common trigger; but it will be missed if veteran ‘long-haulers’ are excluded.
I had the same experience with a study – I was turned down because I was too old! That was an eye-opener. I think this may happen with studies of all kinds. Once you get older things start happening that may confound what the researchers are learning.
Seems extremely short sighted to me to eliminate subjects cause they are too old. I suspect physical signs would be easier to spot the longer a subject has suffered from a disease. That as well as a victims ability to describe the invisible aspects.
I think you and other seniors are actually perfect for the Patient Registry – perhaps not for research – but so that we can learn what happens to people with ME/CFS as they get older. The Patient Registry would be perfect for that.
May be an energy issue. Just the registration is many questions after having to verify twice that you understand you will not benefit from your cooperation but others may in the future. After you get through that 15 or 20 minutes and email verification codes, disclosures, etc. your next prompt is Survey Number 1 which is estimated at approximately 90 minutes. It seems overwhelming but you can save progress and go back to keep completing.
I wanted to sign up for this when it came out but I am not diagnosed with anything. I know that I have me/cfs. It was mild for a long time and then in the last 4-5 years it became severe. Prior to that drs insisted on anxiety. After becoming severe still no help for years (Canada.) Finally a month ago I finally got in to see a new dr who confirmed me/cfs.
Because of how hard it is to get a diagnosis, especially in countries like Canada (vs UK/US), many people that have me/cfs and would like to contribute are not able.
Personally I think this poll should be redone with that as an option because that might be a big reason. I didn’t answer the poll bc there wasn’t an appropriate response for me, but I worry there are many people like me who are excited for research and would like to participate but diagnosis remains a barrier. I think I am getting one soon so I may eventually participate, depending on whether I can get help filling it out.