Entirely devoted to health news, STAT is much more than a medical update site like, say, Medical News Today. Not content to simply report the latest breakthroughs, STAT thrives on investigative reporting that gets behind the scenes and holds institutions accountable. Where else are you going to hear about herpes patients demanding more federal funding?
For its part, MuckRock, a non-profit – which collaborated with STAT on the long COVID article – has made it its mission to make government more transparent and accountable. Besides doing its own investigative work, MuckRock also provides a unique service by giving citizen advocates access to hard-to-find government documents.
A Year Ago
The STAT/MuckRock update on the RECOVER Initiative contained the same broad themes as a year earlier – no results, glacial pace, opaque effort, still no treatment trials…
Over the past year and a half, STATs kept a close eye on the RECOVER Initiative. A year ago in March, it wrote that the NIH was “fumbling its first efforts to study long Covid.” It noted critics’ charges that RECOVER was “acting without urgency”, that it was not quickly testing treatments, and was “not being fully transparent with patient advocates and researchers”. Lauren Stiles of Dysautonomia International bemoaned the fact that “With a half-billion dollars, they could have run multiple clinical trials.”
Two dozen COVID-19 experts released a report noting that, of the 200 long-COVID studies registered on a federal database as of February 2022, only eight were NIH-funded. They concluded: “There is no urgency to get rapid answers to basic questions to guide public health and patient care decisions”. The opaqueness of the project – it was impossible to tell what was actually being done – lead one researcher to call the Initiative a “black box”.
In May of last year, Betsy Ladyzhets in “The U.S. has had the most covid cases in the world. Why isn’t it doing more to study long covid?” reported on how poor the U.S. was at doing large clinical trials and pointed to a 40,000 person effort that was rapidly produced in the U.K. in response to the coronavirus pandemic. She noted that over 50 patient organizations had joined the Patient Lead Research Collaborative in an open letter to RECOVER that cited its opaqueness, lack of patient engagement, and the Initiative’s dearth of ME/CFS and dysautonomia experts.
RECOVER subsequently met with the group but RECOVER is still short of experts in post-viral research. Dysautonomia, for instance, clearly plays a major role in long COVID and ME/CFS yet Ladyzhet reported in “Five Reasons Why Long COVID Research is so Difficult” – posted on her COVID-19 Data Dispatch blog – that while RECOVER was piling on cardiologists, it was neglecting to bring in dysautonomia experts. Dysautonomia International’s founder, Lauren Stiles, stated that “Right now, there are three people with [dysautonomia] expertise on these committees,”.
The NIH – a Long COVID Savior? Or is it Doing to Long COVID What It Did to ME/CFS?
A Year Later
Citing the slow pace of RECOVER trial, MuckRock gave long COVID patients a place to voice their concerns in November, 2022. STAT was back in December, 2022 with, “After nine months, an update on NIH’s long Covid research“, and some good news. Enrollment – a big problem earlier in the year – was dramatically up. But when STAT – in collaboration with MuckRock – returned to RECOVER a year after its first article, though, with a fuller update by Rachel Cohrs and Betsy Ladyzhets, the news was not so good.
Their piece,“The NIH has poured $1 billion into long Covid research — with little to show for it“, had some familiar themes – the glacial pace, no patients in treatment trials, the opaqueness – was still there and now a new concern had popped up – was the money running out before RECOVER could fully assess treatments?
Not Just About Long COVID
It should be noted that the RECOVER Initiative is not just about long COVID. Yes, people with long COVID are eagerly awaiting its results, but so are people with chronic fatigue syndrome (ME/CFS), post-Lyme Disease Treatment Syndrome (PLDTS), postural orthostatic tachycardia syndrome (POTS), and anyone with a post-infectious illness – and that includes many autoimmune diseases. That list is actually growing: studies are showing that COVID-19 is upping the risk of coming down with many illnesses. The RECOVER Initiative is our best chance to learn what happens during an infection that can cause so many things to go screwy.
I don’t think anyone expects RECOVER to quickly solve long COVID and wrap everything up with a nice bow, but real progress and providing some decent treatments – yes. With a big price tag ($1.15 billion) – which dwarfs any other long-COVID project initiatives by at least ten times – comes big expectations.
Two and half years later, with the RECOVER Initiative failing to provide anything even remotely significant, it’s no surprise to see investigative reporters asking – what the heck is going on? I’m surprised more haven’t, actually.
$1 Billion Dollars…
With few accomplishments to date, STAT/MuckRock reporters took the RECOVER Initiative to task for its lack of results thus far.
Note the title of the investigative piece: “The NIH has poured $1 billion into long Covid research — with little to show for it“. It doesn’t say the NIH will pour a billion dollars into long-COVID research – it says it has already poured a billion dollars into RECOVER. (Actually, it’s probably about $811 million.) It makes sense. Congress gave the NIH $1.15 billion over four years and we’re almost 2 1/2 years into the program. (Working at what was truly lightning speed for them, it took the NIH a year to get the program together; after that, they started enrolling patients).
So, almost a billion dollars later, we have a handful of papers and one clinical trial that’s been announced – and postponed repeatedly. The STAT/MuckRock piece reported that RECOVER – in response to upsets regarding the slow pace of the initiative a year ago – told Congress that it expected to launch trials by fall. Then it was by the end of the year. Then it was the first quarter of 2023 – now it’s summer.
Despite the largesse Congress unfolded on the NIH, some signs suggest RECOVER may even be having some money problems. A patient registry – a key infrastructure part of any large-scale disease effort – still isn’t in existence and is currently being reassessed. A RECOVER advisory committee responsible for ranking and evaluating potential treatment options was put on hiatus “due to a lack of funds”. Despite allocating $172 million to clinical trials, RECOVER told Congress in June that it didn’t have enough money to test the full range of treatments for long COVID.
An NIH Lifeline? Not a Chance
Of course, there is the NIH. Could it and its 51.1 billion dollar budget help out with long COVID? Not a chance. Prior to the Congressional allocation, as other federal funders were feeding money into long-COVID research, the NIH simply ignored long COVID. There’s something seriously wrong when the biggest medical research funder in the world sits out the first year or so of post-pandemic illness affecting tens of millions. Could the NIH atone for past sins and throw long COVID some cash?
Not likely. In a response to a question from STAT, the acting NIH director noted that: a) it was hoping that Congress would allocate more funds to long COVID; and b) in any case, in order to do that, it would have to redirect funds from other diseases – which it clearly is not going to do. (The NIH apparently does not have a rainy-day fund…) For now, RECOVER is on its own. (If it can’t make do with over 1 billion dollars, one wonders how eager Congress will be to give it more money.)
That’s how the NIH rolls, though. It depends on Congress almost entirely for new initiatives. Absent that it’s hands off, and if neglected diseases that can’t get researchers interested in them, or they can’t muster enough Congressional support to force the NIH to spend money on them – well, too bad. That approach – which the NIH has apparently never tried to change – probably leaves at least 50 million people (fibromyalgia, ME/CFS, POTS, IBS, migraine) without anything close to adequate medical research funding.
On the ME/CFS end, the NIH could, for instance, give the RECOVER Initiative some money to include people with ME/CFS in it. Getting ME/CFS patients into RECOVER is a golden, once-in-a-generation opportunity to cheaply jumpstart the ME/CFS field – get data the NIH can trust (it doesn’t trust work done outside the NIH) and build on – yet for some reason, it can’t muster up the ability to do this completely sensible, cost-effective thing. Former NIH Director Francis Collins said – “Watch Us. We’re serious about ME/CFS”. Well, we are watching you and you’re clearly not.
For its part, the Biden Administration’s promise to create an Office of Long Covid Research and Practice to oversee federal long-COVID efforts is nothing more than a promise at this point. They say they will try next year.
Black Hole
Exactly what RECOVER is doing – what studies it’s working on, how much it’s spending on what, is a mystery.
The truth is we just don’t know what’s going on in RECOVER. RECOVER could be doing all sorts of amazing research, could be on the brink of important findings – and we’d never know. We know lots of smart people are involved. We know considerable thought was put into RECOVER, that it’s been “built for the long term” and is designed to produce lasting results, but the Initiative is pretty much a black hole. We don’t know what decisions are being made or who is making them. All we can do is wait and hope that the Initiative is making real progress.
Lauren Stiles, the founder of Dysautonomia International who actually serves on several RECOVER committees, stated that even within the confines of RECOVER, she can’t tell what’s going on. She told the authors, “There’s a complete lack of transparency. When we ask who made this decision … they won’t tell us”.
We have general estimates of funding for clinical trials, research, and administrative costs (which, thankfully, seem pretty low) but that’s it. This is partly due to the RECOVER outsourcing large parts of the Initiative to outside universities, but even within the NIH, the situation is opaque. RECOVER, for instance, funded $37 million dollars of outside research grants but has yet to post the details of those grants – their size, their scope, their duration. As an example of how foggy things are over there in RECOVER land, the NIH hasn’t gotten around to tracking long-COVID spending in its Estimates of Funding for Diseases and Conditions for publication.
The Good, the Bad, and the Strange: the RECOVER Initiative Long COVID Grants
Treatment Boondoggle
Apparently, the clinical trials office put together an exercise trial without accounting for post-exertional malaise – the signature symptom in the largest cohort in long COVID. They are now revising their protocol.
Let’s just hope that the current information on clinical trials is not reflective of the RECOVER Initiative’s approach. It was bad enough that RECOVER is planning to pump considerable amounts of money into a graded exercise trial. What was even worse, though, was how uninformed the clinical trials group was. In other words, they hadn’t done their homework and were about to push out a trial that could have caused real harm and done damage to the Initiative itself.
The authors reported that NIH program officer Antonello Punturieri “pushed back on the concerns” regarding exercise by citing clinical guidelines from the World Health Organization and a U.K. agency – both of which, get this, recommended against exercise for people with ME/CFS. Keystone Kops, anyone? Punturieri, by the way, is a chronic obstructive pulmonary disease (COPD) expert who apparently knows little about the history of the biggest cohort in his clinical trials group. (Exercise is good for COPD.)
An email from inside RECOVER suggested that the clinical trials group simply wasn’t up to snuff on the signature symptom (post-exertional malaise (PEM)) in its largest cohort. After learning that, whoops, exercise might actually be harmful in the huge ME/CFS-like cohort of patients, RECOVER apparently went back to the drawing board and is revising the trial. It’s clear that since few experts in post-infectious diseases exist outside of the ME/CFS, and ME/CFS experts aren’t exactly in leadership positions, RECOVER is prey to experts in other fields who don’t do their homework.
Say What? The RECOVER Initiative’s Long COVID Exercise Clinical Trial
Unfortunately, the clinical trials picture got even less exciting when the STAT/MuckRock paper reported that another one of the five clinical trials RECOVER is going to run (that’s right – 5 clinical trials total) is going to feature “cognitive retraining”. Instead of trying to fix the problem, RECOVER is apparently going to spend money nibbling around the edges of it with exercise and “cognitive retraining” trials.
These kinds of yawn-inducing, move-the-needle-forward inch-at-a-time efforts will only serve to bolster the critiques of the NIH that led to the formation of the new Advanced Research Projects Agency for Health (ARPA-H) (or anti-NIH) agency. RECOVER was the opportunity for the NIH to show that it could be nimble and innovative. Thus far, it’s not working.
Longtime NIH reward recipient Eric Topol, who presumably knows the NIH quite wellis certainly not happy. He authored a paper on possible long COVID treatments and told the authors he’d expected the NIH would have launched many large-scale trials by now. He stated, “I don’t know that they’ve contributed anything except more confusion”. Ouch…
Update! RECOVER Announces 1st Slate of Treatment Trials
Conservative RECOVER Initiative Underwhelms w/ Long-COVID Clinical Trials
What We Do Know
We know that RECOVER has enrolled about 12,000 out of the 15,000 adults it wanted to enroll and has published around ten papers. One was a review of possible mechanisms that thankfully fully incorporated ME/CFS into it. Many of the others are electronic health records (EHRs) analyses that appear to be useless for identifying the ME/CFS-like cohort, perhaps because EHRs don’t capture post-exertional malaise, often don’t include fatigue, and don’t assess ME/CFS, POTS or other neglected diseases that make up the ME/CFS long-COVID cohort.
We know about the protocols – we know it’s a three-step process that ends with a limited number of people getting an intense examination. How many, we don’t know. We know that people in the first two tiers are being assessed for ME/CFS, fibromyalgia, and POTS as well as post-exertional malaise, Epstein-Barr virus, getting autoimmune tests, simple tests of coagulation, etc.
We know that people who get to the 3rd tier are getting a real workout. Among many other things, they’re doing:
- a tilt-table test,
- sleep study,
- lumbar puncture,
- full cardiopulmonary exercise test,
- complete neurocognitive testing,
- MRI (of some sort),
- tests of blood vessel health (Endopat),
- proteomics (Serum protein immunofixation eletropheresis+),
- evidence of muscle damage (CPK, aldolase, myositis panel+),
- nerve damage (neurofilament light chain+),
- intestinal inflammation (fecal calprotectin+),
- gut motility,
- nerve conduction,
- muscle and skin biopsy,
- colonoscopy.
The Gist
- STAT News is a health industry website that reports on everything from the latest medical advances to industry practices. With its focus on investigative reporting, last year it reported on the glacially slow pace, the lack of treatment trials, and the opaqueness of the $1.15 billion dollar RECOVER Initiative.
- A year later, it’s back with the same themes. Remarkably, no patients are in treatment trials, RECOVER is still as opaque as could be, and almost 2 1/2 years later, it has yet to produce anything significant.
- Plus, there’s a new worry. With almost a billion dollars spent, some signs suggest that RECOVER may be having money problems. The patient registry was never built, an oversight office was closed down due to lack of funding, and RECOVER has told Congress the $172 million it’s allocated for clinical trials isn’t enough to fully assess the treatment options for long COVID.
- On the treatment front, the Paxlovid trial has been repeatedly postponed and two other trials in formulation, exercise, and cognitive retraining suggest that RECOVER has not done its homework and is plowing its scarce funds into very, very low-hanging fruit.
- Despite the fact that the ME/CFS cohort makes up about 50% of long COVID, the clinical trials group apparently didn’t know about the disease’s signature symptom – post-exertional malaise – and has been forced to go back to the drawing board for the exercise trial.
- The slow pace and weird choices for the clinical trials have outraged critics who complained a year ago that RECOVER was way behind on the clinical trials front.
- RECOVER has also been likened to a black box. We don’t know exactly where the money is going or what RECOVER, except in the broadest terms, is doing with it. That makes RECOVER difficult to assess, but STAT News believes RECOVER has spent the bulk of its money on observational studies and may not have much left for studies trying to find the mechanisms behind long COVID.
- On the bright side, enrollment in the RECOVER Initiative is up. We know that the Initiative was built for the long term and was designed to produce lasting results. We know a lot of smart people are involved. We know enrollment began about a year and a half ago, and studies take time to produce and write up.
- It’s possible that RECOVER is uncovering amazing things that we just haven’t heard about yet. We won’t really know how RECOVER is doing for the next year or two. Let’s hope the news is better then.
That’s a lot of stuff, but it also leaves a lot out: metabolomics, gene expression, magnetic resonance spectroscopy, SPECT scans, assessing Sjogren’s syndrome (tear production, saliva production or antibodies), extensive coagulation testing, and testing for blood flows to the brain. Since things like gene expression and metabolomics are mainstays of medical research, I think we can assume they will be done, but when is another question.
This, of course, is just the first cut. The big question is what about the second cut? It’s in the second cut – where researchers test hypotheses and try to understand the mechanisms behind the illness, that the big progress is going to be made, and that’s where it gets a little scary.
The authors reported that the RECOVER Initiative has “spent the majority of its money on broader, observational research.” Observational research – collecting just as much data as you can – is, of course, the first step in understanding a new disease like long COVID.
The second and crucial step, though, is designing hypotheses and testing them in an attempt to get at the mechanisms of the illness. I asked Betsy Ladyzhets, one of the authors of the STAT/MuckRock piece, if that statement meant that RECOVER had used a big chunk of its wad on observational data. Her understanding was, yes:
“For the observational study: my understanding is that yes, the main RECOVER cohort is primarily focused on collecting symptom data and following patients over time rather than digging into mechanisms.”
That would be unfortunate, indeed. The long-COVID cohort RECOVER is following – 15,000 people, so far, with a goal of over 25,000 people – is immense. Are the observational studies sucking up much of the money Congress gave to RECOVER? Or has RECOVER laid by a big chunk of change for getting at the mechanisms of the illness? One has to assume that it has. The problem is that we just don’t know. RECOVER is so opaque that it’s impossible to know where it’s putting its money.
Still Early in the Game
It should be noted that in many ways RECOVER is still just beginning. It didn’t start enrolling patients until Sept 2021 and quickly fell behind schedule. It may still not have enough patients and healthy controls to do the studies it wants. (The authors noted that symptom assessments are being dogged by a lack of healthy controls.) It may be waiting for enrollment to get to a certain level before it starts analyzing its data.
Plus, studies take time to get produced, written up, and published. We’ll know a lot more regarding RECOVER over the next year or two. For its part, Betsy Ladyzhets reported that RECOVER is “clearly aware of the many criticisms from scientists, patient advocates, etc.” that it’s received.
In a year, we may think the RECOVER Initiative is the best thing since sliced bread. Let’s hope so. A lot of people are counting on it.
- Please encourage STAT News and MuckRock to continue keeping an eye on the RECOVER Initiative by clicking on the article – The NIH has poured $1 billion into long Covid research — with little to show for it“. Their work is continuing. MuckRock is in the midst of a long Freedom of Information Act (FOIA) process regarding the RECOVER project and we can expect an upcoming story with Science News. It’s great to have journalists keeping an eye on long COVID.
- If you have long COVID and feel the state or federal response to long COVID has not been adequate fill out an engagement form here and tell MuckRock why
- Sign up for Betsy Ladyzhets COVID-19 Dispatch blog here to stay on top of RECOVER news.
Please Help Keep Health Rising on the Web
HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT
GET FREE ME/CFS AND FIBROMYALGIA INFO
Like the blog you're reading? Don't miss another one.
Get the most in-depth information available on the latest ME/CFS and FM treatment and research findings by registering for Health Rising's free ME/CFS and Fibromyalgia blog here.
Submit a Comment
AnneMon April 23, 2023 at 12:22 pm
Maybe the NIH is just waiting for long Covid to go away like me/CFS did? Not that the disease itself or the many patients went away, but we just stopped hearing about them. If they are not visible, or we can disguise them with psychological diagnoses, then the media will lose interest and we can spend our money on something a little more sexy… The politics and bureaucracy of government spending!
Reply
Cort Johnsonon April 23, 2023 at 1:48 pm
I don’t think so. I think the NIH has a lot at stake here – they were given a lot of money to work on long COVID and they want to succeed. If I was a researcher working in this program I would really want to succeed. It’s taking longer than expected and those two treatment trials (exercise, cognitive retraining) are disappointing in quite a few ways.
Besides them, my main concern is the money. Is RECOVER spending too much on observational studies? Did they create too large of cohorts? How did they come up with the number of people they need? (Do they really need to follow 25,000 people?).
Unfortunately, we don’t know. We don’t how many people have gone or are going through tier three – the most intensive tier – for instance. That’s not difficult information to get. We don’t which centers are plannning to do which work…What studies past the observational studies they plan to do….This is key information.
Maybe they haven’t analyzed the data yet and don’t know. If that’s so they could tell us that. They could say – well, when we get to x number of patients and healthy controls we plan to do this…Why not just tell us?
If I was them I would be so above board with everyone. I would spell out what stage I was, what stage 2 was, etc. and I would inform the public and research community where we were at every step of the way. When there were problems I would acknowledge them, make the correction and move on. That’s how you generate good will and partners…
This is typical NIH – a frigging black box. It causes so much frustration and ill will.
Reply
Okiveron April 25, 2023 at 6:16 pm
Maybe thirty years time they will get their act together. Doesn’t surprise me in the slightest
Here in England the gov has set up recovery centers, focused on graded excercise.
They just insist on pretending it’s another diseaseReply
See Also4 Ways to Catch Up on Retirement Savings | The Motley FoolDave Ramsey warns Americans about the damage 'Bloody Sunday' left in its wake, gives advice for anyone who want to buy a home amid spiking interest rates6 steps to avoid running out of money in retirement | CNN BusinessFinancial Planning Decade by Decade
Bronwyn Wheeleron April 23, 2023 at 12:39 pm
Hi. I am presently part of the RECOVER Initiative and have been involved for a year as a patient volunteer. Much data has been collected through regular surveys and I have been to the hospital for bloodwork, urine, a smell test, and some minor cognitive testing. The survey questions are being monitored closely. I got called about one of the questions I answered within 2 hours of submitting it. I am due for another hospital visit and I am hoping they will begin to do more in-depth testing of the different systems that are breaking down.
The RECOVER website sends out reports from the specialists involved about their discoveries and thoughts. Nothing amazing yet but at least they are focused on looking at everything.
The research is a blessing for me. I have had Lyme for 26 years with the diagnosis of POTS, ME/CFS, and Hashimotos. I did not get COVID and did not get the shot. After many years of trying to get treatment and spending hundreds of thousands of dollars, I could not be more grateful to be part of this study.Reply
Cort Johnsonon April 23, 2023 at 1:38 pm
Thanks for sharing your experience Bronwyn. It’s good to hear some good news – particularly how attentive they were.
Despite the negative reporting we desperately want the RECOVER to succeed. Let’s hope these are just some early hiccups and over the next year or two the program will flourish.
It’s also nice to see you with your past diagnoses in the study. Please keep us informed of your experience. 🙂
Reply
Anonon April 23, 2023 at 3:45 pm
Hi Bronwyn, thanks for sharing that! Do you know if any severe or very severe patients are being assessed? I hope that might be happening.
Reply
TKon April 23, 2023 at 7:50 pm
Thanks for sharing the insider’s view, Bronwyn. Looking at everything as if it is a new disease is a part of the problem, in my opinion. A typical presentation on long COVID throws all kinds of statistics and then ends with a declaration that it is a complex disease. Welcome to 30 years ago, duh. They then proceed to propose something like HIIT trial. We already know quite a bit about post-viral syndrome, and they are ignoring it.
I think they would make a more meaningful progress if they just focused on fatigue, brain fog and PEM, which are the biggest problems that long COVID patients face, rather than chasing every darn symptom. Maybe then they’ll find something before the funding dries up. Otherwise, long COVID patients who still remain sick 2 years from now will get reclassified as MECFS and forgotten with the rest of us. And then we’ll repeat the process all over again after the next pandemic.
Reply
Nioka L Blackon May 14, 2023 at 10:30 pm
I agree. I know exercise doesn’t work. The quickest way to needing to go to the ER (but I don’t because it has never been of any help) is to either try anything more than going to the bathroom or the couch and back to bed, or getting stressed, in an amount that is unreasonable to normal life…such as seeing a news report (always bad news) or have bad news or see someone even get a little mad about typical stuff, sends me over the edge as if I moved a four bedroom house of furniture all by myself.
My hope from the first reports of Covid was that it sounds so much like what I go through that maybe it would finally get serious consideration and answers. If enough doctors and scientists are affected they would have to admit the truth, right? I hate for one person to get this but I was hoping for a silver lining if it had to happen.
My worry, though, is that the checks will stop when the answers come. When researchers finish a study, and find answers, don’t they have to look for new work? What is the incentive to go at it full force and drive for the answers? I hate that I even think that cynically, but 30 years of being treated like dirt that doesn’t matter while my life is erased has caused an bright and sunny optimist into this pain-ridden, neglected, barely staying out of a nursing home-formerly high achieving 56 year old that hasn’t had one day without severe pain and very extreme fatigue with a host of chronic issues as a result for the last 30 years. I got Covid before it had legitimacy, let alone a test. Collapsed lung and everything. I got much worse than usual and never have gotten to where I was before it, which was already severely disabled. My daughter has had Long Covid for 15 months. She lost her good paying job and finally has found a stay at home job making half the money that isn’t as demanding on her but still, takes too much out of her. We have not been counted I’m sure. No one has ever helped either of us, just threw Prozac and blood pressure meds at her. They tried to for me but I learned years ago I can’t tolerate the majority of any meds ever taken. That would be a good place to start, why is that? I just found out my DNA has low COMT and the MTfHr gene, and maybe the DNA trails might illuminate something? I tried to sign up for some Long Covid studies but I am just not able to concentrate to finish the questions to sign up, let alone comply with ongoing things to remember or try to fill out. Maybe if someone came to my home they could observe my daughter and I and how we fight to get through each day. Dr’s ask or state “You have Depression.” With a tone that sounds like a sweeping away of our problems with “Oh, that explains it all.” Duh, if anyone hurts this much and can’t take a shower but once a six weeks if I am lucky, and getting to the bathroom without an accident is a huge accomplishment, wouldn’t they be sad about it? Add to it no one treats us right, even my 25 year old daughter who had an awful case of Covid was treated terribly. The only ones who seem to be benefitting from all the suffering is the researchers who are getting grants, the pharma who get all the money for drugs that don’t work or help, and the doctors who don’t give a tiny little speck. And act your crazy.
It sure isn’t those holding on by a thread and losing any way to take care of themselves or their families and it is a national disgrace. If my daughter or I lived alone and didn’t have my son or her boyfriend to work themselves to the bone, we’d prob be dead by now without anyway to survive on the street. She was even denied Short Term Disability twice! I finally wrote a letter inviting them to come stay at our home and see for themselves. And how ashamed they should be to use the excuse that there wasn’t a test that proved she had Long Covid! There isn’t any such test! How absolutely absurd! Even their own published articles said so and touted their help for people and patted themselves on the back for it. Made me sick because that is hogwash. They approved her the next morning. But she was so traumatized from the ordeal that she pushed herself back to work too soon, and won’t touch applying for Long Term Disability that she qualified for. Now we have to move because we can’t afford our house on her new half the pay job. I had to handle all her paperwork and emails and calling for records, and still she was traumatized just because of the fact she was pretty much comatose for months and I had to keep trying to rouse and ask her what they wanted to know. I have severe brain fog along with everything and can’t sleep so doing all that set me back a lot. But if do anything to help my daughter and so I struggled mightily, just to keep up with it. It should not be so hard. Just have a team go to the homes and see them and know that their is no test, and for goodness sakes, why with all the money put out for Covid and Long Covid is there NO clinics anywhere at all reachable for most of us. There is one in our state I could locate and it was not taking anyone and severa hours away. I can’t drive and can barely see to read up close because of what ME/CFS/Fibro/probably Lime, (had a tick bite with bulls eyes not treated correctly by my doctor in 1992) has done to me.
I hope before it is too late for so many of us that truth and honesty and compassion will rise up.Reply
Nancy Harknesson April 24, 2023 at 7:58 am
I am surprised they let you into the study. Recover told me earlier this year that though I have MECFS, since I hadn’t had Covid I would qualify as a base case only – ie they had no category for MECFS people
Reply
konijnon April 23, 2023 at 1:35 pm
I would guess, a black box is no good thing… normally used to put things under the table or carpet…
if they had done good reasearch, trials, etc..they would be so enthousiastic that they would tell/publish/it would get in the press…worldwide..Reply
Cort Johnsonon April 23, 2023 at 1:59 pm
They certainly will get the word out when they get some good findings- that’s for sure. They are quite good at that.
Regarding the process of the Initiative – timelines, work being done, progress , problems to overcome – very little – which leaves everyone wondering – particularly when there’s no visible progress – what the heck is going on.
Reply
konijnon April 23, 2023 at 2:37 pm
I was just watching a recorded political and researchers conference from germany. the no black box from political side is such a difference! ofcourcen here in belgium nothing happens. I do not like black boxes. what you wrote is true! NH is not open with so much money so what the heck is going on? and because of 25000 patients, the UK decodeME has 20000 ME/cfs patients, 5000 Long covid i thought and was it 20000 controls or 25000 controls, can not remember but they are open about all you wrote. so that is no excuse…
Reply
Oliveron April 25, 2023 at 6:24 pm
Cort, I’m genuinely surprised you’re surprised!!!
We all know how this works by now!!! Money, obfuscation and a total lack of will to truly grasp the situation.
1 billion dollars. Three years of nothing happening except pharmaceuticals getting rich.
I’m starting to think revolution is the only way. This current set up is corrupt to the gills.
They shoulda just given the money to Ron to disseminate amongst chosen scientific groups.
It’s just been pissed up a wall.
Nothing has changed. Hoping against hope is pointless.
These fools need to be held to account.Reply
Chris Williamson April 23, 2023 at 2:32 pm
Cort: This is so disappointing, heartbreaking and maddening. I couldn’t even bring myself to read the entire article when I saw it on STAT. I’ve been sick 15 years, am now in my early 70’s and definitely getting worse. I really hoped for a serious effort with all this $$. Thank you for keeping up the fight. I hope you’re ok.
Reply
Cort Johnsonon April 23, 2023 at 2:57 pm
The news left me in a sour mood for about a day! But, but, but – it really is true that with regard to studies, RECOVER is just getting started. Let’s see what happens over the next year. There are as Suzanne Vernon said, a lot of really smart people involved. I hope we’re cheering it’s progress in a year.
Reply
Oliveron April 25, 2023 at 6:41 pm
Oh dear
Reply
Tracey Anne (Burgess)on April 23, 2023 at 2:35 pm
It seems that the NIH is not in any particular hurry, to get effective treatments to the frontline, to help those suffering from Long Covid. And time really does matter. People, with previously busy lives, are helpless to stop these lives unravelling before their eyes. They’re very unwell, with an endless list of horrible symptoms, that there’s hardly any treatments for. That’s if they’re lucky enough to find a doctor who believes them, in the first place. Then they realise their job is at risk, their finances are threatened & their relationships are strained. With no end in sight. And now they realise that the NIH’s RECOVER programme, is unfocused & not being tightly managed.
People with ME/CFS & other chronic conditions, are also disappointed because they may have benefitted from insights gained too.
The inner workings of the NIH are clear for all to see. The ME/CFS community have been battling away for decades with very poor levels of funding. And now, infuriatingly, millions more are watching the same slow processes in action.Reply
Cort Johnsonon April 23, 2023 at 3:05 pm
This is where RECOVER, if it was open with us, could really help out. I’m sure that THEY want to move faster. They were getting blasted for not engaging in treatment trials a year ago…So what’s going on? IRB approvals? Problems with the sites? Software problems?
STAT reported that Stanford – which is part of the RECOVER Initiative – has had its pwn Paxlovid study (https://clinicaltrials.gov/ct2/show/NCT05576662?term=paxlovid&cond=long+COVID&draw=2&rank=1)going for almost 6 months now. There’s something about doing this across the entire network that is causing problems.
With regard to urgency – Resia Pretorius’s warning that anti-platelet/anticoagulant therapy should be done as quickly as possible to be the most effective is ringing in my ears. Let’s hope that’s not the case and that RECOVER’s tardiness in getting these trials out is not causing long term harm.
Reply
Tracey Anne (Burgess)on April 23, 2023 at 3:30 pm
That’s the thing isn’t it? Like, as you say, improving sludge-like blood flow, that’s been clogged up by microclots. (#TeamClots.) Recommending people rest and don’t push themselves. (The “Energize” exercise trial has unfortunately sent out completely the wrong message.) And this does matter.
It really upsets me, that people will be unwittingly worsening their symptoms & causing harm, before they even realise that over exerting is harmful, if they experience post exertional malaise (PEM). This is an emergency situation being addressed as though there’s no urgency.Reply
Bethon April 23, 2023 at 2:39 pm
Thank you for this disturbing information. Very, very discouraging. To whom shall we write to express outrage and demand action…the right kind.
Reply
Cort Johnsonon April 23, 2023 at 3:07 pm
That’s a good question and I’m not sure. The last major STAT look at RECOVER last year actually prompted, if I remember correctly, a Congressional letter to RECOVER asking them what’s up. Hopefully this will do the same.
One simple way to support this kind of investigative reporting is simply to go the original article and if you can – comment.
Reply
Bethon April 23, 2023 at 3:26 pm
Thank you.
Reply
Kay Owenson April 23, 2023 at 3:35 pm
Oh my, I am throughly confused & frustrated after reading part of the article about STAT. I have been diagnosed with FM & although I have had or have all the symptom’s of CFSME I haven’t been diagnosed. I’m not going into details at this point but I have many immunodeficiency or autoimmune dysfunction. My biggest one is hypothyroidism.
My question is why is Dr. Fauci still in charge of President Biden & our Congress. He has made no bones about how he thinks we are all mentally ill. Is he still running NIH even though he supposedly retired. Perhaps he should be put in a black box. Just saying as I truly don’t like pointing fingers, it is against my faith, but as things are I wonder???Reply
Cort Johnsonon April 23, 2023 at 4:04 pm
According to this article Fauci retired in December. He was never running the NIH – he was in charge of that National Institute of Allergy and Infectious diseases, though, for almost 40 years. I don’t think they’ve announced a new director, yet.
https://www.wikiwand.com/en/Anthony_Fauci
Reply
Kay Owenson April 23, 2023 at 4:53 pm
Cort, Thanks for setting me straight about Dr. Fauci. I’m sorry that I had everything wrong. I read too many things.
I admire your tenacity & how much you give of yourself to keep us up to date with what is happening.
God Bless & You Take Care of Cort!Reply
Jillian MacDonaldon April 23, 2023 at 4:03 pm
Cort Johnson, I just wanted to say thankyou for everything you do. The information on your blog is amazing and has helped so much. You’re a legend!
Reply
Nancy B.on April 23, 2023 at 5:32 pm
I’m just wondering if the Freedom of Information Act could be applied in the case of understanding what is going on with all that money granted to the Recover Initiative?
Reply
Tracey Anne (Burgess)on April 24, 2023 at 12:17 am
I think I saw that an application has/is being made under the FoIA Nancy. I’ll have a look and see if I can find it. I saw it in a tweet.
Reply
Nancy B.on April 24, 2023 at 12:27 pm
@Tracey Ann,
Was very surprised to receive your response in my personal e-mail. First time that’s happened. I don’t mind.Now, I would be very interested to know more about the F of I Act that was filed. Sometimes I worry that by bringing it up, if nobody has done it yet, that somehow I’ll be responsible for asking and I’ll bet filing is a big deal. The government probably doesn’t want to make it that easy to find out what they are doing.
@Steve Chalmers,
Glad you mentioned the book ‘The Why.’ I talked about it a few blogs ago. Not sure you sourced it from that or found it on your own. The book is a very good account of the underbelly of the NIH. Even though it is older news, a good portion of it is still very valid (and the book has updates too).Follow the money…
Reply
Tracey Anne (Burgess)on April 24, 2023 at 1:36 pm
Hopefully this is the tweet Nancy.
https://photos.app.goo.gl/qStWpmXk4zjSNThJ8
It’s from the replies to this Twitter post, by the co-author of the Stat article.
https://twitter.com/rachelcohrs/status/1649044016317579264?t=zTatTAvlp8ke5XR42sO9Iw&s=19Getting replies in your email is a new HR feature, I think. It’s a good idea because before you wouldn’t know if someone replies to you. It’s sent automatically, I presume.
Reply
Steve Chalmerson April 23, 2023 at 9:36 pm
I’ve commented in the past that the ME CFS etc deniers (which cui bono? suggests are payers of disability income) have achieved regulatory capture of CDC and NIH over a period of decades. At least that’s how I read Hillary Johnson’s “The Why”
My perspective was learned at my father’s knee. Back in the Carter administration, he was promoted to be his company’s Director Government Relations and moved to Washington DC. He knew this meant stepping up and that Washington DC was a rough and tumble place, so sought out the best coaching and mentoring his Rolodex, our extended family, and his expense account could offer.
One of the most important things he learned was, “In Washington DC, if you see something happen, figure out who benefits, and that’s who’s behind it, no matter how much it appears otherwise.” A lot of things change in 45 years. This isn’t one of them.
So, “Cui bono?” Who benefits from RECOVER burning through all of these resources without executing the basics of finding objective tests for the various branches of Long Covid, or finding treatments which make a difference for patients experiencing the various branches of Long Covid?
It sure isn’t the patients. My back of the envelope is 5 million people in Europe and the western hemisphere, including 2 million in the US, have been partially or fully disabled by Long Covid over the last 3 years.
Looking at my adult daughter’s case, from May 2020, COVID tests were still rationed and she never had a positive COVID test, so her post acute illness onset of disabling autoimmune illness is just that. $400,000 of treatment (at absurd US billing rates, as reported by her HMO) has her mostly back on her feet. Had she stayed too disabled to live independently, lifetime disability income and care would have cost millions.
I conclude each of those 5 million people is a million dollar exposure; given lack of treatment I’d say the exposure falls on the payers of disability income, both national programs and private insurers. That’s 5 trillion dollars of exposure. On top of a similar exposure to ME CFS etc cases against the recognition of which there has been extraordinary advocacy over at least the last 30 years, resulting in those patients being thrown to the wolves. And a lot of experience at regulatory capture.
So my hypothesis is that the dissipation of most of the RECOVER resources, and the opaque way in which it was done, is the result of regulatory capture by people with up to 30 years’ experience doing said capture, acting knowingly or unknowingly on behalf of payers of disability income who are existentially terrified of the exposure they face — more than the GDP of a mid size country — to patients disabled by Long Covid.
The correct answer for society, of course, is that we simply can’t afford this level of disability and have to find and fix the problem. Objective tests. Treatments which help at least most of the affected people. What RECOVER was tasked to do.
Reply
Snowon April 24, 2023 at 8:07 am
Sadly, this has been my thought process all along. I was hoping to be proven wrong, of course. I think RECOVER was started to give the long covid cohort a sense of hope. It created a division between “them” and “other” post-viral illnesses. When longer sufferers expressed concerns over the way RECOVER was being rolled out, we were called negative.
Reply
Oliveron April 25, 2023 at 6:38 pm
Sadly, they can afford to let us rot…increasing automation means we’re just useless meat puppets for them.
I believe you’re bang on.
If people don’t understand the business model underwritten by all these ” health” initiatives, by now, they’re blind or just plain dumb.Reply
Matthiason April 24, 2023 at 12:12 am
There’s so much in all this long covid research that mirrors ME/CFS. Including supposedly reputable institutions like Stanford going down the totally wrong research pathways.
Reply
Oliveron April 25, 2023 at 6:33 pm
Yes. It’s indescribably stupid
Almost criminal. But then again, everyone bought into the fear factor of COVID. We’re just stupid as a species. Yes I’m peeved..like we all are.. a billion dollars….a billion….ffsReply
JKon April 24, 2023 at 2:04 am
And in the summer it will be pronounced with a drum roll, with huge coverage that Long COVID is a functional disorder and cognitive behavioural therapy and exercise are effective treatments for it.
Reply
Steve Chalmerson April 25, 2023 at 3:32 am
Hence why it was so important to push back on the exercise component so disproportionately represented in the RECOVER effort.
Thought experiment for you: Recast PACE not as science, but as a $10M PR effort paid for by payers of disability income,
to write talking points into the peer reviewed medical/science literature,
which could then be used to argue that a $1000 one time GET/CBT would “cure” ME CFS etc
which could then be used to justify denying every claim for disability income for anything like ME CFS etc
by which about 5 million people in Europe and the western hemisphere are partially or fully disabled (back of envelope number)
which fairly administering disability income would cost at least US$1 million per patient for lifetime income
Which means a 5 trillion dollar exposure to the payers of disability income
$10M to pay for PACE was cheap, and had a very high return, didn’t it?
Reply
Oliveron April 25, 2023 at 6:30 pm
Already cast as that in the UK. Absolute joke. The system is broke. We should not expect anything from it. All we have now is some way to mobilize a mass campaign. Lots of the long COVID sufferers aren’t affected to our degree and there is an army of them.
The pharmaceuticals own the press. Anyone notice there’s no free press anymore, they own the doctors, everything that’s needed to control the market.
We will just be written off. We have to find a different way. I wonder if there’s any way we can have an international text the NIH or something. All sufferers worldwide just jam their systems at a specific time.
Nothing else will workReply
Carolynon April 24, 2023 at 6:23 am
Sounds familiar. Government throws big money (our money) at a problem and takes a political bow.End of story. Where did the money go ? Any results? Not a concern. Just saying…..
Reply
Gijson April 24, 2023 at 7:02 am
I wonder why pfizer or moderna don’t invest money into research to solve long covid. They have made mega profits from their vaccines.
Reply
Oliveron April 25, 2023 at 6:26 pm
Good ol Pfizer, always striving to cure illnesses despite never doing so but still robbing our money , time and health.
What would we do without them?Reply
Dakotaon April 24, 2023 at 7:47 pm
Appreciate this, Cort.
On the NIH note, did you see that the NIH has reportedly submitted the ME/CFS Intramural Study paper to a journal for review (I believe this happened within the last few weeks”)? Just sharing for visibility.
As you probably know, the journal is confidential until the paper is accepted for publication, but these findings may impact RECOVER and curious when it will be for public consumption.
https://twitter.com/Dakota_150/status/1650486994470838276
Reply
Matthiason April 26, 2023 at 12:21 am
Seems to me that all this long covid and ME/CFS research is missing the obvious point that both illnesses are basically neuroimmune illnesses. I don’t get it.
Reply
Ann1on April 26, 2023 at 8:25 am
From the Discussion: “SARS-CoV-2 infection causes vascular inflammation in different organs. It is important to note that SARS-CoV-2 infects human cells mainly by binding to the protease called ACE2. Our central hypothesis is that ACE2 can lead to the cleavage of the extracellular domain of [Vascular endothelial (VE)-cadherin] at specific ACE2 target sequences, which then destabilizes the [Endothelial junctions (EJ)] and causes microcirculation dysfunction. This hypothesis has never been considered previously.”
https://www.biorxiv.org/content/10.1101/2023.04.24.538100v1
” Further studies are needed to determine if increased circulating fragments of ACE2 and VE-cadherin may contribute to the future development of post-acute COVID-19 syndrome characterized by vascular endothelial injury, hypoxia, and inflammatory state.”
Reply
