As we enter a second month of a more or less complete shutdown of the economy, a burning question arose – what the heck was going on with our precious chronic fatigue syndrome (ME/CFS) research? Was it stuck in neutral or proceeding? Had our researchers, like so many others, gotten pulled into COVID-19 research? Or were they using the time for something else – like maybe writing grants?
It turned out that all of the above was happening. While some work had stopped, other work was showing up. Those busy with coronavirus work expected their COVID-19 work would bear fruit for their ME/CFS work. Several researchers were eager to get started on assessing post-COVID-19 patients, and quite a few were working on that crucial need for the ME/CFS field – grant applications.
Ron Davis PhD – Stanford Genome Technology Center – Open Medicine Foundation Research Director
A COVID-19/ME/CFS Study Opportunity
Ron Davis and Janet Dafoe were safe and well, with Janet guarding the door, allowing none to enter.
The Pandemic Test That Got Away
Davis envisions a major COVID-19 ME/CFS study. First, he simply needs the samples.
Ron Davis’s main concern continues to be chronic fatigue syndrome (ME/CFS), but there’s also the matter of a grant proposal that one imagines the CDC regrets turning down fifteen years ago.
Davis approached the CDC with the proposal to develop a cheap, and quick $1 test which would read the genetic code of the pathogen, and use bioluminescence and enzymes to produce the results within minutes. Davis recommended that the CDC produce 100 million of these test kits to have them ready for when the pandemic came. When and if that happened, all that would be needed would be to insert the pathogen’s genetic code.
The CDC turned him down and went with a less novel, more traditional approach – a typical response, Davis noted. Federal agencies tend to eschew developing new technologies that could help them when a crisis hits. Then, when the crisis hits, they don’t have the time to develop the new technologies, leaving us stuck with the limitations of the old ones – which is what we’re experiencing now.
If Davis’s idea had worked, one wonders how things might be different now.
A COVID-19 ME/CFS Study
Davis now wants to take advantage of what will almost surely be the biggest ME/CFS cohort ever – the post-COVID-19 patients who fail to recover – and put them through a wide series of tests to try to figure out how this disease gets started.
We’ve known for many years that severe infections like EBV, the first SARS virus, Ross-River virus, Coxsackie burnetii, Giardia, Borrelia, Ebola, etc. leave behind them a subset of chronically ill, ME/CFS-like patients. We also know that getting ME/CFS doesn’t require an exotic infection or a hospital stay – that a severe bout with the common cold (perhaps a coronavirus) or the flu will probably do it.
Studies that have tried to uncover what’s gone wrong have found a few potential answers. We know that initial illness severity is a big deal, that the autonomic nervous system gets hit, that a kind of hyperactive immune response might come into play; but the past studies, thus far, have been taking small stabs at a big problem.
Not one study, for instance, has used brain imaging to assess whether neuroinflammation is showing up in the sick patients (Jarred Younger’s hypothesis). Nobody has contrasted the cytokine, hormone, metabolomic changes that may be occurring during exercise. Many parts of the immune systems have not been studied.
We’ve never had a top-to-bottom study of people as they’re descending into ME/CFS. That’s the opportunity that is before us now.
Ron Davis, Ron Tompkins, Nancy Klimas and others have the tools at their disposal to dig deep into the disease as it’s developing.
It would be heartbreaking to miss this opportunity and certainly talk abounds about it. I know someone from an ME/CFS family who has not had ME/CFS but who, a month after “recovering” from COVID-19, is still plagued by exercise intolerance. He knows of four other formerly healthy people in the same boat.
Advocates on the last NIH telebriefing repeatedly brought up post-COVID-19 studies, Vicky Whittemore has been interacting with her colleagues about them, and Avindra Nath at the NIH reported there has been much discussion there.
It all sounds good. Post-infection illness, after all, has been well documented in ME/CFS, and post COVID-19 patients seem like a perfect fit for us, but bitter experience has taught us that you never know with the NIH. It was the NIH, after all, that recently began a $170 million exercise study without thinking to include a single control group of people who cannot tolerate exercise.
For Davis, the key now is to gather more and more samples, do the tests that have to be done on fresh samples, and then bank the rest. The first thing is to gather as many samples as possible – not such an expensive thing.
NIH Grant Attempts Fail – But More on the Way
The Davis team has excelled at producing grants. While the rest of the field sputters – putting in historically low numbers of grant applications – Davis and his Stanford team have been pounding them out. During a time when the rest of the ME/CFS research field is putting in an average of about nine grants a year, they put in five grants all by themselves.
All, unfortunately, were rejected in the latest round, with one reviewer rejecting a grant for a diagnostic test, reasoning that because there’s no cure for ME/CFS – why would we want to diagnose it better? (Update – that weird comment came from an National Science Foundation grant – not the NIH.)
Note that the Davis grant applications, most of which focus on developing new technologies present a different kind of grant than the CFS SEP panel usually gets.
During this time, Davis is participating with his team via Zoom and he hasn’t given up – he and his team are using this time to work on many more grant applications.
Ron Tompkins M.D. ScD – Founding Director of the Center for Surgery, Science & Bioengineering at Massachusetts General Hospital, Director – the Harvard ME/CFS Collaboration
Looking Forward to Future Funding Successes
On the Harvard side of the Open Medicine Foundation-funded efforts, Ron Tompkins reported that the computational and analytical work is going as it was before, and that he and his team are working on “a few dozen grant applications” (!). He said he hoped we’d have some nice funding successes to talk in the fourth quarter of this year.
Sadie Whittaker PhD – Chief Scientific Officer of The Solve ME/CFS Initiative (Solve M.E.)
Going Gangbusters
Sadie Whittaker reported that some of the Ramsay awardees have had to stop their work, but others have not. For instance, she said that Liz Worthy’s fascinating ME/CFS genome study at the Center for Computational Genomics and Data Sciences in the University of Alabama at Birmingham is going gangbusters.
For Sadie, herself, not much has changed. Used to working part-time from home, she and other Solve M.E. employees are now simply working full-time from home. They appear to be busy indeed.
Solve M.E. is also eager to identify people who fail to fully recover from COVID-19 – and has a number of projects underway to do that – and to assess the effect the pathogen is having on ME/CFS patients’ health.
Solve M.E. Patient Registry will roll out soon, to be followed by partner registries in the U.K. and Australia that will make up the first ME/CFS international patient registry. The registry will give researchers across the world access to patient data in the U.S., the U.K. and Australia – and that data will include COVID-19 questions that will them help track its impact both on people with ME/CFS and with healthy controls.
Solve M.E. is also establishing partnerships with COVID-19 registries and apps in an attempt to capture COVID-19 patients who come down with an ME/CFS-like condition. They’re also developing a social media campaign to identify that same group.
Plus, the silver lining of the COVID-19 crisis – the opportunity it presents to better understand ME/CFS – will be a key feature of Solve M.E.’s advocacy day tomorrow. (More people will participate in Solve M.E.’s advocacy day tomorrow than have ever participated before.)
Solve ME/CFS is also working with Vicky Whittemore at the NIH to have dried blood spot cards from ME/CFS patients introduced into the NIH’s bio-repository. These cards, which simply consist of a dab of blood on filter paper, can now be used to assess many factors including DNA and RNA analyses and proteomics. They present an easy and cheap way to collect samples for biobanks.
Sadie said that Solve M.E. is taking a more proactive approach to bring new researchers into the field. Instead of having researchers come to them to get a Ramsay Award, Solve M.E. is reaching out to researchers. Sadie said she’s found that if she can make a compelling scientific argument why a field might come to bear on ME/CFS, she finds researchers show a real interest. She provided two examples.
After getting in contact with Solomon Snyder, a pioneering neuroscientist at Johns Hopkins who has won the renowned Lasker Award, and who happens to have a whole department named after him (and how many people can say that?), they funded another neuroscientist in that department – Bindu Paul – to study hydrogen sulfide in ME/CFS.
Solve M.E. has also taken advantage of their location next to one of the top universities in the country, UCLA, to integrate the Ramsay Grant award program within the IRIS Cantor Center for Women’s Health there. The result – ME/CFS is now on list of topics for grant applications from UCLA researchers. Solve M.E. will review the grant applications that come in, and fund one as part of the Ramsay Award Program’s goal of raising awareness.
As with the other groups, Sadie described this COVID-19 interlude as a time to write up grant applications.
Nancy Klimas MD – Institute for Neuro-immune Medicine Director – Nova Southeastern University
“A Sad Opportunity”
Nancy Klimas reported that with several clinical trials and studies underway, the first two weeks were a scramble to maintain the integrity of those studies, and to figure out how to proceed safely with them – particularly since different funders gave different directives which sometimes conflicted with each other. She said the local Institutional Review Boards (IRB’s), not surprisingly, had trouble interpreting the sometimes conflicting institutional and funding agency positions.
She reported, though, that most of her clinical trials are depending on telemedicine assessments at this point. One silver lining is how cost-effective and easy they’ve found telemedicine is. Plus, telemedicine gives her access to homebound patients and people outside her local area – two groups they’ve had a hard time getting into studies. They’ll have a lot of data to push for using more telemedicine in the future.
Dr. Klimas, like Ron Davis and Ron Tompkins, is working on grant proposals. She expected the next NIH round (June 6th) to be a busy one.
Calling COVID-19 “a sad opportunity”, she, too will be looking for funding to see if COVID-19 increases the risk of getting ME/CFS. Luckily, she already has a group that’s been studied to follow: she’s got physiological data on all the healthy controls who’ve participated in their studies – giving her a nice baseline.
Gordon Broderick PhD – Clinical Systems Biology – University of Rochester
Supercharging Immune Research
Gordon Broderick reported a new level of camaraderie had shown up as his team has been drawn right into the thick of the fight against the coronavirus. A pioneering computational biologist, Broderick has used large data sets to produce models of how the biological systems in ME/CFS have become disrupted.
Broderick, who’s been heavily engaged in ME/CFS research for at least 15 years, formerly worked at Dr. Klimas’s Institute for Neuroimmune Medicine. He said he came to the University of Rochester, in part, to learn more about how viruses affected the body.
With COVID-19, that work has now become “supercharged”, pushing up their learning curve dramatically. His team, which was already tied with respiratory medicine doctors at the University of Buffalo, has been modelling the immune response to the virus.
He expected that their “ongoing (ME/CFS) work will very much benefit from the lessons learned here regarding virus to host immune interactions, immune tolerance and immune hyper-responsiveness“.
Derya Unutmaz M.D. – The JAX ME/CFS Collaborative Research Center (CRC) – NIH-Funded ME/CFS Research Center
Applying COVID-19 Work to ME/CFS
Derya Unutmaz reported that his lab has also been enrolled into the fight against the virus. His work on ME/CFS is mostly shut down but he believes he will be able to apply some of his work on COVID-19 to ME/CFS – and expects it will have many impacts going forward.
Maureen Hanson PhD – Cornell Center for Enervating Neuroimmune Disease – NIH-Funded ME/CFS Researcher Center
Data Analysis and Manuscript Preparation
Work in the lab itself has stopped, but Maureen Hanson and her team are continuing to work on manuscripts and analyzing data from home. They’re having twice weekly Zoom sessions with lab members to go over progress and data.
Vicky Whittemore PhD – Leader of the Trans-NIH Working Group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Post COVID-19 ME/CFS Studies “on NIH’s radar”
“NIH continues to work at full speed using emails, zoom and webex meetings! There is a huge focus on COVID-19 on top of everything else we have to do so we are a bit busy. As you can imagine, with most of the labs and clinical studies shut down across the country as well as at NIH, the researchers are panicked about how they will complete the work they are funded to do. All we can do at this point is to reassure them that NIH is here to help once they are back up and operational.
We started talking about post-COVID-19 infection sequelae with Joe Breen and others at NIAID a couple of weeks ago, and have heard from several researchers who are interested in studying this. We recognize this may be both a huge problem with many people who have symptoms like ME/CFS after recovering from the acute infection, and that it is also an opportunity to follow these individuals to determine who does continue to be ill and who doesn’t and why.
Right now, NIAID has been focused on diagnosis, development of the vaccine and testing treatments for COVID-19, but rest assured this is on our radar. NINDS is also interested in understanding if there will be post-infection neurological symptoms in these individuals, so this area of research will definitely be ramping up. I’ll provide more information when it is available as I know there are several things in the works.
We were about to make an announcement about a workshop in May and a process for strategic planning when all this hit. We now have to completely change our plans because we won’t be able to have face-to-face meetings for a while. So, we are finalizing those plans and will announce them soon.”
Non-Profits Get Boost from Coronavirus Stimulus Bill
Non-profits are amongst the most endangered organizations during times of economic distress. The Coronavirus Aid, Relief, and Economic Security (CARES) Act, is providing some relief, however.
The bottom line is that Congress is allowing you (or a corporation) to deduct more of your contribution from your taxes than before. Plus, it’s providing a way for non-itemizers to claim a deduction.
- Non-itemizers – A new above-the-line deduction for 2020 will allow non-itemizers to deduct cash contributions of up to $300 made to certain qualifying charities.
- Itemizers – For people who itemize their deductions, the limit on deductions for contributions had been set at 50% of their adjusted gross income (AGI) or 60% for cash. That limit has been completely suspended for 2020. You can now deduct every cent of any contribution up to your entire adjusted gross income.
- Corporations – For corporations, the limit on deductions for contributions, which is ordinarily 10% of AGI, has been increased to 20% for 2020.
Non-profits Mentioned in this Blog
- To Support Ron Davis’s work – donate to the Open Medicine Foundation
- To Support Ron Tompkins’s work – donate to the Open Medicine Foundation
- To support Sadie Whittaker’s work – donate to the Solve ME/CFS Initiative
- To support Nancy Klimas’s work – donate to the Institute for Neuro-Immune Medicine
Thanks so much for finding all this out! It’s great to know that our researchers & organizations have been able to continue working during this time. It’s good to feel up to date with what’s going on.
Re: Ron Davis’s virus test invention, I sure hope they will re-vitalize that – maybe they’ll listen now.
Point taken re: Dr. Klimas’s reference to the “sad opportunity” the coronavirus presents the ME field with. Yes, it surely is sad that likely many people will contract ME but what a tremendous opportunity this is for the field. It has affected the entire world in such a dramatic & profound way, surely ME research will become more important to governments now. The spotlight is on this virus and it will be studied endlessly.
And the dried blood test card? No more excuses for not having blood tests now — for at least whatever they *can* do with these tests, there can’t be an easier or cheaper way to get these.
Well said, Waiting. I mentioned to a friend who also has ME the other day that many cases of ME will surely be a result of COVID-19 infections. Sadly many of those cases will be misdiagnosed, shuffled from doctor to doctor and some people will just give up. Sure hope the CDC wakes up to Ron Davis’ invention, too.
I am not sure that me/cfs is result from corona virus,but what is so apparent now–is the corona virus pandemic is not single viral infection problemm but this pandemic is from cfs/me and corona infection both –rather cfs/me got infection of corona. basically the pathlogic site of cfs/me and corona infection is the same–endothelial cell of kidney and heart –they make TNF-ALFA, AND ACE2–CFS/ME IS DISEASE OF CHRONIC
INFLAMMATION AND IMMUNE SUPRESSIONS(LOW NK CELL FUNCTIONS)
IF YOU HAVE CHRONIC INFLAMMATION,THERE IS VERY HIGH ACE2 IN OUR BODY–WHICH ATTRACTS THE CORONA VIRUS—THOSE SX OF SO CALLED CORONA INFECTION HAS ANOSMIA,TASTE DIFFICULTIES–THIS IS SX OF CFS/ME–NAMELY NEUROINFLAMMATIONS–IT IS SO CLEAR THAT TREATMENTS OF CORONA AND CFS/ME IS THE SAME, BOTH DISEASE IS WELL RESPONDING TO IVIG–LOOK AT THE CHINESE STUDY—3 OF SERIOUS CORONA PNEUMONIA RESPONDED SO WELL–ALL OF THEM RECOVERED. SO IS THE CFS/ME PATIENTS WELL RESPONDING TO LOW DOSE IVIG. MY FEELING OF CORONA PANDEMIC IS LIKE WHAT OLD SAYING” WHAT GOES AROUND COMES AROUND” NIH AND CDC–THEY SHOULD HAVE BEEN MORE FRANK AND HONEST. THEN WE MAY NOT HAVE THIS TRAGIC EVENTS.EVEN NOW THEY SHOULD PAY ATTENTION TO THE STUDY OF CFS/ME–THEY WE WILL SEE THE LIGHTS AT THE END OF TUNNEL.
Thank you, Cort for the article of the happenings of the ones that are very important and special to us! It is good to hear that they are well also! As I heard excuse me, Dr. IAN ….forgot his last name got sick with Covid 19
is there any word on how he is doing? Prayers to him! Many thanks to All of them and stay well, Cort!
the name is ian lipkin. I also do not know if he is recovered.
A couple of days ago in a superb interview Lipkin says he “lost six weeks” so it appears he’s back to normal health. Thank the gods (Battlestar Galactica reference).
https://www.ft.com/content/6e9b4fe7-b26e-45b9-acbd-2b24d182e914O
Love your ref.??thank you, Cort! Great News!
Thank you, Konijn!
Btw..All
Supplements that was suggested to take ..
Which you should always check with your Drs. first because of interaction with meds. u take..
I think is spot on to help especially Zinc..
Please call your Senators and Reps. today and let them hear your voice!
It is Advocacy Day for us!
Go to Solve ME for help!
Stay well All!
The biggest Advocacy Day ever – and honestly, what a GREAT time to do it – in the midst of the coronarvirus crisis when we can point to what’s happening – and the many people who will not fully recover from it – and say this is why you need to study ME/CFS.
That is a great message and congrats to Emily and Solve ME/CFS for highlighting that
Agree! LET’S ROLL! Here is the addy for help with contacting:
lobby20.solvecfs.org
Our ME/CFS advocates are saying to one another, “We are finally relevant!” It sadly took a global pandemic, but post-viral diseases like ME/CFS now represent an Urgent public health concern.
Hopefully we see some good CFS research come out soon. I am over Covid-19!
I think some research on the autoimmune aspect of CFS is pretty much due.Wouldn’t it be great, and ironic, if some groundbreaking research on our disease came out in these times.
Yes, Cort (great article) and Matthias (re your comment)
Not only would it be great, and ironic in a vindicating way, I think it is a huge opportunity for proper placement of ME research, care and management where it belongs – as a known and predictable, anticipated medical sequel to viral illness in a percentage of “recoveries”. For this fact – or shall we even say truth- to prevail, ME research must finally enter the mainstream and I believe that this very real eventuality of post COVID ME CFS surge and spike, worldwide, is a launching pad for that. If the right people in positions of power, authority and decision making, are made privy to this. I think the public needs to know, everyone is now a potential ME patient. And they re not going to like the lack of care, ignorance, stigma, and ridicule they face. Here is their chance to pull current ME suffers out of that pit into the light of science and rational thought, while preventing permanent damage to their bodies and brains by early diagnosis, knowledgeable first-up care and final debunking of old false medical attitudes. So I keep wondering, who would speak to this post COVID ME epidemic to come? Anyone got Ian Lipkin’s ear to ask him?
Update – this blog was updated to note that the comment regarding Ron Davis’s grant application (that because there was no cure for it why even go to the trouble of diagnosing it) came from a National Science Foundation grant application not an NIH grant application.
So ironic that a novel corona virus impacting the lives & livelihoods of millions around the world could be the catalyst for ramping up the research for ME/CFS which impacts the lives and livelihoods of the #millionsmissing all over the world. No matter, it’s imperative that research for both goes forward in a bold way and that researchers work cooperatively, sharing data, findings, etc. We will see more of this in years to come. Let’s be prepared.