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It’s not every day that the head of the NIH makes time for Q&A on long COVID and ME/CFS.
An ME/CFS or long-COVID moment is an indication that something in the force has shifted – that these diseases are making headway in ways they have not before. As we go along in our day-to-day lives, it’s easy to forget that signs of significant shifts are occurring – and fairly regularly. Here are some recent ones.
- ME/CFS and Long COVID Experts Crash Time’s List of 100 Most Influential Health Leaders: It’s Another ME/CFS Moment
- Another ME/CFS Moment: ME/CFS is Much More Common than Thought, Says CDC
- A ME/CFS Just Occurred at…The Mayo Clinic!
The Bertagnolli Moment
The latest “moment” concerns Betsy Ladyzhets’s Q&A with NIH DIrector Monical Bertagnolli (“Q&A: NIH Director Dr. Monica Bertagnolli on next steps for RECOVER, future Long Covid research plans, and more“. NIH Directors have a lot on their plates and we rarely see them talk about long COVID, and even rarer, ME/CFS.
THE GIST
- An ME/CFS or long-COVID moment is an indication that something in the force has shifted – that these diseases are making headway in ways they have not before. As we go along in our day-to-day lives, it’s easy to forget that signs of significant shifts are occurring – and fairly regularly.
- The latest “moment” concerns Betsy Ladyzhets’s Q&A with NIH Director Monica Bertagnolli (“Q&A: NIH Director Dr. Monica Bertagnolli on next steps for RECOVER, future Long Covid research plans, and more“). NIH Directors have a lot on their plates and we rarely see them talk about long COVID, and even rarer, ME/CFS.
- Betsy Ladyzhets is an investigative journalist whose main effort, The Sick Times, is a relatively small specialist website; i.e. it’s not the New York Times, the Boston Globe, or even the Cincinnati Herald – and that’s the thing – the new NIH Director took time out of her very busy day to speak to the cofounder of a small website about long COVID and ME/CFS.
- When asked about the RECOVER Initiative’s much-criticized clinical trials for long COVID, Bertagnolli acknowledged the disappointment, stated that each trial also used the intervention to understand the biology of long COVID, and then pointed to something very unusual for the notoriously closeted RECOVER Initiative – an open meeting from Sept 23-25th to discuss options for the upcoming round of trials. (You must register by Sept 6th.)
- Citing the “intense activity”, the “really serious, hard work to be done”, and its inclusive nature, Bertagnolli seemed to go out of her way to portray the new RECOVER as a fast-moving, receptive initiative – in short, everything it hasn’t been perceived of as yet.
- She stated that big Pharma needs to know more about the disease before jumping in but failed to acknowledge that the fact that the $1.15 billion RECOVER Initiative has contributed nothing substantial to our understanding of the disease and doesn’t appear likely to do so anytime soon. (It spent most of its money on a limited testing regimen.)
- Thus far, RECOVER has proven to be a hugely expensive and decidedly uninformative undertaking. Even with the $500 million boost in funding, Bertagnolli said the initiative is still “struggling with balancing resources”. $1.65 billion hasn’t gone very far…
- That provides clarity though. The only way ME/CFS and diseases like it will get their fair share is through the Long COVID Moonshot bill that’s making its way through Congress right now. The big push for the bill is coming up soon. Stay tuned.
- As NIH Director ,Bertagnolli has a stake in seeing the RECOVER Initiative succeed. Right now, its critics abound. The NIH appears to have flubbed the chance to prove it could effectively launch an effort to understand a new disease.
- She clearly has a lot of work to do. Time will tell whether she will take actions to right the ship or let the project bumble along Choosing to speak to Ladyzhets suggests, though, Bertagnolli is sincere about long COVID and ME/CFS and that’s potentially a big deal. An NIH director pushing for a long-term commitment to these diseases would, one would think, go far.
- Words, of course, only account for so much. Former Director Francis Collins told the ME/CFS community that the NIH was now serious about ME/CFS and to watch them, only to drop the disease a year or two later.
- Time will tell if this is a long-COVID / ME/CFS moment or more talking points from the new Director. I’m hoping that it’s the former.
Still, why would an interview with Director Bertagnolli be considered an ME/CFS/long-COVID moment? Because of who Betsy Ladyzhets is and who she is not.
Betsy Ladyzhets’s Q&A with Bertagnolli was a good sign.
The cofounder and managing editor of The Sick Times – a journalism-based website documenting the long COVID crisis – Betsy Ladyzhets has been laser-focused on COVID-19 and long COVID. A former journalism fellow at MuckRock, her 2023 STAT/MuckRock piece, “The NIH has poured $1 billion into long Covid research — with little to show for it“, made the news. Her work has appeared in the Science News, The Atlantic, STAT News, FiveThirtyEight, MIT Technology Review, TIME.com, and other national publications.
For all its good work, Ladyzhets’s main effort, The Sick Times, is a relatively small specialist website; i.e. it’s not the New York Times, the Boston Globe, or even the Cincinnati Herald. That brings up a really interesting question: why would the new Director of the $47 billion-a-year National Institutes of Health take time out of her busy day to talk to her?
The fact that she did do that may be more important than anything she said. When the head of the NIH takes the time to speak to the cofounder of a website devoted to long COVID – that’s potentially very good news.
Bertagnolli’s background doesn’t suggest she would have much interest in complex, poorly understood diseases like long COVID. She’s been immersed in a field – cancer – which with its diagnostic precision couldn’t be more unlike messy fields like long COVID and ME/CFS. (She does know about the Epstein-Barr Virus (EBV), though.)
She has quite a resume. The former Director of the National Cancer Institute (NCI), Bertagnolli was chief of the division of Surgical Oncology for the Dana-Farber Brigham Cancer Center, the former President of the American Society of Clinical Oncology and the chair of the Alliance for Clinical Trials in Oncology. She trained in surgery at Brigham and Women’s Hospital.
She’s not exactly a fresh face. In her mid-60s, she’s had plenty of time to take in the prejudices that have so hampered the ME/CFS field. That doesn’t appear to have happened, though. She became NIH Director not in the middle of the COVID-19 pandemic but of the long COVID “pandemic” and appears to be taking it quite seriously.
The Q and A
Ladyzhets first asked about the RECOVER Initiative’s much lamented first round of clinical trials and the new trials seeded by $500 million from the Biden Administration. First, there was some good news. Bertagnolli pointed out that while the long COVID community was “a little disappointed” (an understatement), each trial also used the intervention to understand the biology of long COVID.
While some of the interventions were so milquetoast (cognitive training, exercise, sleep hygiene) that one wonders how much help biological analysis will provide others (IVIG, transcranial stimulation, Paxlovid, Modafinil), they might provide some insights. In any case, RECOVER showed some creativity when it decided to dig into the biological effects of the trials.
It became clear that RECOVER got the message about speed as well. In contrast to the “old” RECOVER which kept pushing the starting date of the clinical trials back and back, Bertagnolli said RECOVER was moving “really fast” and pointed to an open Sept 23-25th meeting to discuss the new trials which she called “absolutely critical”. The fact that the meeting is taking place is a rather overt acknowledgment that RECOVER needs more help with creating clinical trials. (That meeting is open to the public and you must register by Sept 6th.)
Citing the “intense activity”, the “really serious, hard work to be done”, and its inclusive nature, Bertagnolli seemed to go out of her way to portray the new RECOVER as a fast-moving, receptive initiative – in short, everything it hasn’t been perceived of as yet.
Recognizing that big Pharma is still mostly standing on the sidelines Bertagnolli noted that until we “understand the fundamental pathobiology” of long COVID, they’re not going to join in. Then she said something that simply didn’t fly: that getting at the pathobiology was a “critical part of the cohorts, the specimens, the clinical trials…” in the RECOVER Initiative.
What happened with getting at the roots of long COVID?
That was ironic given that the single most disappointing aspect of the project has been its rather bizarre neglect of the pathobiology. Bertagnolli was right when she said we need to get at the pathobiology to find the right treatments, but RECOVER has spent most of its money carrying out a limited and hardly informative (at least for the ME/CFS-like subset) testing regimen in tens of thousands of participants.
On the plus side, it’s taking lots of samples. On the minus side, it doesn’t appear to have the funds to do anything with them.
If the RECOVER project has been focused on pathobiology, it’s hidden it very well. Of the 75 publications to come out of the RECOVER project thus far, I found only four that address the pathobiology of the ME/CFS-like subset of long COVID. Somehow, this hugely expensive project has hardly moved the needle in understanding the largest subset found in long COVID.
Since Bertagnolli said a major area RECOVER could improve on was communicating that perhaps there’s something we don’t know. (I’m still having trouble grappling with the idea that such an expensive project has produced so little of substance.)
So much money in – so few results out.
Despite the fact that the RECOVER has spent more – much more – on long COVID in five years than it ever spent on ME/CFS over 40 years (and knows much, much less about it), its big problem right now is funding. Bertagnolli said, “Even with the $515 million (boost)…we’re struggling with balancing resources”. $1.65 billion just hasn’t gone very far…
Not surprisingly, Bertagnolli tagged pathogen persistence and an aberrant immune response as the two chief hypotheses regarding long COVID and twice questioned whether we will either need new, stronger antivirals or use the current ones at higher doses.
Thankfully, Ladyzhets kept ME/CFS in the discussion and, in fact, Bertagnolli, without being asked about it, included ME/CFS in her first answer. Still, her reply to Ladyzhets when she talked about people who have had ME/CFS “for 20, 30, 40, years”, while positive, “We absolutely have to address that”, lacked substance.
Bertagnolli acknowledged the need to transition from the shot-in-the-arm type funding given by Congress with the RECOVER Initiative into a “long-term project” that illuminated long COVID “ME/CFS, chronic Lyme disease, all of these chronic conditions.” Her call for “A long-term program that’s really robust in these conditions”, and her support of the Long COVID Moonshot, was encouraging.
When it came to the big question for ME/CFS – what about more funding specifically for ME/CFS – her reply was typical, disappointing, and illuminating; i.e.
“We care a lot about ME/CFS but don’t look to us for more funding.” Instead, she encouraged the ME/CFS community to pin its hopes on long COVID – which, of course, we are.
“We want to be able to conquer ME/CFS and do it in the best possible way. I hope that the ME/CFS community will see much of the research that’s happening now, spurred on by Long Covid, to benefit them.”
Ironically, we are learning more about ME/CFS from long COVID – but not from the NIH. As to ME/CFS itself, Bertagnolli stated:
“we have a small but mighty team of long-term ME/CFS researchers who’ve been interested in this problem, some internal to NIH, that we intend to continue to fully support… The funding issues, that’s always a moving target. It’s difficult for me to speak to that other than to say, we’re going to do the best we can with what funding we receive.”
The funding “we receive” says it all: the NIH is not going to dig into its coffers to give ME/CFS a hand up. If Congress allocates more money for ME/CFS, fine…otherwise things will remain the same. At least that provides clarity regarding how important the Long COVID Moonshot bill is for both the ME/CFS and the long-COVID fields. Stay tuned on that – a major effort is coming up shortly.
As NIH Director Bertagnolli has a stake in seeing the RECOVER Initiative succeed. Right now, its critics abound. The NIH appears to have flubbed the chance to prove it could effectively launch an effort to understand a new disease.
She clearly has a lot of work to do. RECOVER’s open meeting on clinical trials is a step in the right direction, but major issues in the RECOVER program need to be addressed. Whether she will take an active role in addressing them or whether she will let the project bumble along remains to be seen.
A letter from ME/CFS experts to Director Bertagnolli found things looking worse on the ME/CFS front at the NIH. The letter noted that the NIH is dropping funding for one ME/CFS research center leaving only two small research centers to support millions of ME/CFS patients in the U.S. If that wasn’t bad enough, because the remaining center’s funding was not adjusted for inflation they will receive almost 30% less funding than the original centers.
The authors called for ME/CFS patients to be included in the RECOVER cohort, noted that the cohort is not receiving tests that pertain to the ME/CFS-like long COVID cohort, and recommended that RECOVER create an advisory panel comprised of patients, caregivers, and scientific experts with experience in ME/CFS.
Time will tell if this is a long-COVID / ME/CFS moment or more talking points from a new Director. Things aren’t looking good for ME/CFS but I’m hoping for the former.
I searched The Sick Times, and was pleasantly surprised to see a decent number of search hits returned for “autonomic” and “dysautonomia”.
I occasionally do this same search on the larger newspaper and media outlet websites, and often there are no hits, even for organisations that have reported on Long COVID.
So that’s good to see.
I think this information is a lot more interesting and potentially helpful than yet another review of the government “maybe” finally acknowledging ME/CFS.
“Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspectives”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10816159/
Some interesting highlights include:
‘Herpesvirus is considered the main cause of up to 80% of ME/CFS cases, making antivirals a logical treatment option.’
Immunological disturbances have been found in ME/CFS patients, including changes in cytokine profiles [51], increased numbers of B-cell subsets [52,53,54,55], and decreased cytotoxicity of natural killer (NK) and T cells [56,57,58], which play a role in the immune defence against viral infections [59]. Furthermore, an autoimmune aspect of ME/CFS has been implicated, with autoantibodies detected in 4 to 95% of ME/CFS, including antinuclear antibodies, antibodies to neurotransmitters and neurotransmitter receptors, and antibodies formed by oxidative and nitrosative stress (O&NS) (reviewed in [23,60]). Additionally, decreased levels of immunoglobulin G (IgG) subclasses IgG3 and IgG4 have been reported in subsets of patients [61]. Inflammatory, autoimmune, and immunodeficiency problems reported in ME/CFS patients justify the need for treatments targeting these disturbances.
There is a lot of other important information in this review which is best read in small sections since it is dense. This was published in the Journal of Clinical Medicine in January 2024. Cort, maybe you already covered this, but even if you did, I think it warrants revisiting.
The only remedy is to facilitate the immune system to identify and kill the offending neuro-viruses. NOT to treat the symptoms only.
Indeed, it is difficult to understand that over seventy years ago Dr. Jonas Salk was able to invent a means to instruct the immune system to kill the polio neuro virus. But since then, nothing has been accomplished to kill other neuro-viruses?? If only Moore’s Law applied to medical/viral research and kill remedies instead of to just über-profitable treatment remedies.
Randy, I totally agree with you that facilitating the immune system in its battle against herpes viruses is the only option. (Polio is not a herpes virus.) Once you have a herpes virus, it lives in your body forever and, as far as I know, they have never developed a “cure” for any herpes virus. There is some interesting research, however, done at Baylor. https://hhv-6foundation.org/transplant-complications/937 Baylor College of Medicine’s Center for Cell and Gene Therapy has demonstrated a way to quickly generate antiviral T cells for the treatment of opportunistic viral infections, and recently reported success in a small clinical trial. This research has been ongoing for a while and I am not sure why larger studies have not been done. Here is the full paper: https://pubmed.ncbi.nlm.nih.gov/24964991/
Hello, Betty
Thank you for your reply.
I meant that the polio-virus is just that; not a herpes virus.
My wife has long-haul Covid with ME/CFS symptoms thus my interest in the subject matter.
To date, the only prospective remedy to kill offending herpes virus is Ultraviolet Blood Irradiation treatment that was successfully used in the 1930s, 40s and 50s before establishment medicine abandoned it for antibiotics. She has yet to try it since only a relatively few naturopathic practitioners offer the treatment, of which, there are none locally.
My knowledge of the treatment was derived from Dr. William Douglass’ book Into the Light.
Do you have any patient experience/results with the treatment?
Dear Randy,
First, I am so sorry that your wife has Long Covid with ME/CFS symptoms. I have had ME/CFS since 1984 and confirmed Covid twice last year after I attended a national conference and again after travelling to Maui to visit our daughter. In my case, the symptoms of Long Covid were more serious with a sudden increase in high blood pressure and heart A-fib after walking only a short bit. Sometimes, it is hard to separate which symptoms are from Long Covid and which from ME/CFS. I am being treated with an anti-viral called Nexavir which you can buy without a prescription from the Nexaco Company. Dr. Paul Cheney first recommended it for ME/CFS and it also seems effective (not a cure) for Long Covid. Nexavir is the latest version of a very old medicine called Kutapressin which is made out of pig’s liver. It is in cream form. It is not inexpensive, but worth a try.
“We care a lot about ME/CFS but don’t look to us for more funding.” Instead, she encouraged the ME/CFS community to pin its hopes on long COVID – which, of course, we are.”
You might be Cort, but some of us actually are not
ME & LC only overlap. They do not have the same trigger & LC < 4 years only at best substitutes early stage ME or ME that has been managed sufficiently well to stay without serious harm over time. It's like saying we will plough money into early stage MS & forget the rest (kind of, because MS is a disease that progresses independently of management & develops a certain type of damage)
Whilst Solve put in some amendments to the long covid bill Afaic, US charities have too facilitated this substitution versus insisting on dedicated full spectrum research to cover ME triggers, harm, age & long termers with advanced disease.
This brazen reassertion of intention not to step up to the plate by the NIH and address with urgency the full spectrum of ME should be the que for protests on behalf of the non covid ME community but it probably sadly will not.
You make some good points but I believe you’re being a unrealistic regarding what the ME/CFS orgs should be doing. Have you watched what’s happened with ME/CFS over the past 20 years? Org after org hitting their heads against the wall trying to get more funding. Decades of urgent effort have got us $13 million a year at the NIH.
Now with long COVID we have the chance of getting at what happens during a post-infectious illness – and the results regarding exercise, the immune system, the HPA axis, the ANS – you can go on and on – whether in later stage ME/cFS patients or early stage long COVID patients are stunningly similar.
Yes, ME/CFS patients are going to be more complicated but jumping on the long COVID bandwagon is not bizarre – its pragmatic and it will get us to where you want us to be I believe. The post-infectious field is new – we have to piggyback on long COVID to get it going. Without long COVID we’re stuck in the same place we’ve been for decades – begging the NIH to do something they’re not going to do.
If we can get the Moonshot Bill passed, though, ME/cFS will be in the mix with long COVID.
I don’t think patient organisations should be discouraged by the reaction of the past 20 years, because circumstances today are not the same as in the last 20 years.
I think they should keep requesting inclusion of ME/CFS and collect targuments for this, such as – given ME/CFS is also the most severe form of Long Covid – that inclusion of a non-Covid ME/CFS control group will help separate out results that are specific to ME/CFS in both groups from results that are specific to the Long Covid group only.
I think it might be key for Long Covid and ME/CFS patient organisations to band together on this, with Long Covid organisations acting as an ally and requesting inclusion of ME/CFS, or at least the clear characterisation of LongCovid subgroups (including ME/CFS subgroup) in research.
For example, in Germany in Jan 2023 Long Covid and ME/CFS patient organisations had published a joint care / research guideline which among other things points out the importance of not lumping all LongCovid together in research but to clearly characterise ME/CFS subgroup with PEM, Canadian criteria etc.
Even then, as we’ve seen in Nath’s study, ME/CFS knowledge is key to analysing this data, like the revelation they had that it can be necessary to separate male and female data in the analysis.
I’m crossing my fingers for the moonshot bill. Can this be supported from abroad? (Like, a petition for the US to “take a leading role” or something?).
Patient organisations could also ask researchers like Akemi Iwasaki or Rbo Wuest who actively include ME/CFS into their Long Covid research for good arguments to include ME/CFS control groups.
Problem to solve as someone else pointed out in the comments may be also be quite practical if Recover clinics are currently not seeing patients with ME/CFS without Covid (?), i.e. where to get the ME/CFS control group cohort or control samples. Clinical researchers tend to like to source from own patient cohorts I think?
Sorry, I meant Akiko Iwasaki of course!
If UV and ozone worked we would all be better by now. Yes, most of us have tried it and, no, sadly it will not do anything to help your wife. She may feel a little energy for a day or two as with all the treatments you read about and that’s as far as UV/ozone therapy goes. I even did it in the hospital for 3 straight weeks along with two rounds of whole body hyperthermia and still no dice.
I can tell you care deeply and we all go through the early stages of researching and trialing everything under the sun… ultimately there is still no magic bullet.
As someone who went from being the poster child of health to the same as your wife almost overnight at age 32, I would have saved rather than spent the $200,000 on trialing as many treatments, therapies, antivirals, antifungals, antimocrobials, supplements… you name it.
But I get it. When someone loses their health as badly as they do with this illness, they’ll sell everything they have in a desperate attempt to get their life back.
Best I can offer for at least some sustained relief is Pepcid with Zyrtec daily. Everything else will make her feel improved for two week to one month max and then back to hell.
Feel free to ask me about any treatment modalities as chances are I’ve tried it or researched it.
I am glad there are more and more people in the ME/CFS community who think that the research into the herpes viruses in ME/CFS should be the question that should get the most attention. Simply because it is the only hypothesis where researchers have already been successful at finding proof in small studies of excellent quality that herpes viruses seem to be at the core of the explanation of the pathomechanism.
I am not worried that the pharmaceutical industry will not begin to work on new treatments as soon as there is a full insight into the pathomechanism of ME/CFS.
What is worrying now is that there are still way too many “health experts” in the top ranks of institutions like the NIH who continue to resist the fact that ME/CFS is a somatic illness. Or, because they don’t want to understand the catastrophe the medical system has produced for people with ME/CFS over the last century they simply don’t want to know the somatic pathomechanism of ME/CFS.
Hello Betty, thank you so much for making us aware of this important review. I also missed it.
Until February 2024 the British ME Association did weekly systematic research updates which was very helpful. I am sure that this paper would have been discussed there. Unfortunately, they stopped. Probably because they had to reallocate their resources. Such a service is now missing for ME/CFS.
Having just scrolled down that paper, I feel relief and hope. In the last years too many researchers showed up especially in Long Covid who are not able to do proper research. Namely to first teach themselves the state of the research and then starting from there to formulate testable hypotheses and then do a study or run a trial.
The half of a billion invested in Long Covid through the RECOVER initiative was thrown out of the window exactly because of these simple reasons.
Watching this was very stressful for me, and I had times, where I needed to stop following the online discussions because it instilled hopelessness and despair in me.
I am glad that the projects in the EU, like this simple review that you made us aware of, seem to show more of a good understanding for what are the required characteristics of good research, and go at a slower and more careful pace. Do the necessary work step by step.
It also gives me hope that in the US, too, there are influential researchers who include ME/CFS like Akiko Iwasaki.
Thanks. I hadn’t seen that.
“‘Herpesvirus is considered the main cause of up to 80% of ME/CFS cases, making antivirals a logical treatment option.’” – only antivirals as far as I know attack only the lytic (spread in the blood) phase of the virus, while herpesvirus research like Prusty’s point much more to stationary non-lytic virus reactivation as being a potential culprit in ME/CFS, where the virus messes with the cells it inhabits.
Hi Cort I didn’t receive this through the email but went directly to your sight. Maybe that it why there are only a few comments.
Thanks, Sandra – just about to send the email blast out 🙂
I appreciate the interview which forced Bertagnolli to consider her accountability to mecfs, but I’m unimpressed with her responses. Very disappointed that they will not look to redirect funding from AIDs since it now has multiple treatments (and which fundamentally requires certain personal actions rather arising from nowhere). Also, MECFS patients cannot be seen at the RECOVER clinics unless they also have long Covid so I think counting us as part of that umbrella is a fail. Can we somehow keep up the pressure on the press to continue to interview her to keep us top of mind?
I really appreciated Ladyzhet’s bringing up ME/CFS quite a bit! You hit the nail on the head so far as I’m concerned. How did it come to be that a public institution like the NIH spends billions of dollars a year on diseases like AIDS which have good treatments while it ignores diseases like ME/CFS, fibromyalgia and similar diseases which affect tens of millions of people across the US.
I wish an investigative reporter at the New York Times would pick this up! It’s such a travesty. The NIH should be for EVERYONE…
ME/CFS and Long-Covid symptoms are caused by one of several neuro-viruses, perhaps herpesvirus-6A or 6B or herpesvirus-4 aka Epstein-Barr/ Guillain-Barre viruses or similar.
As soon as the NIH’s Monica Bertagnalli understands this, she will stop the madness of spending tens of millions of taxpayer dollars on pharmaceutical research and instead recommend a means to kill the offending neuro viruses. Namely, facilitating the adaptive immune system to kill the viruses using proven oxygen treatment such as IV-Ozone and/or Ultra Violet Blood Irradiation treatment that was so successful in the 1930s and 1940s. Both, BTW, obviate the use of pharmaceuticals and subsequent years of frequent doctor visits at $300 to $500 each.
However, considering the immense political power of for-profit oligarchical Big Pharma, I doubt the latter treatments will even be considered or even recommended to the medical establishment.
You can bet that by now, she’s already been informed of the six- or seven-figure salaries waiting for her for when she decides to exit the the NIH. But only if her decisions favor members of both Big Pharma and Big Medicine.
She indicated an interest in finding ways to stop EBV – which, of course, she is well acquainted with given her background in oncology. Whether she’s interested in those efforts, of course, is another matter. The good news overall, though, is that as Dr. Klimas said “The viruses are back!” 🙂 I tried IV hydrogen peroxide, by the way, and it had no effect unfortunately.
I had a number of Ultra Violet Blood Irradiation treatments many years ago and it had no effect whatsoever.
We know as many as 45% of people with Long COVID fit the case definition for ME/CFS. The RECOVER Initiative should be studying ME/CFS as well. #NotJustFatigue has been lobbying for its inclusion.
Good for them! There was an effort to get ME/CFS patients into the study but guess what the study proved to be so poor that I think that effort was dropped. I hope we can ME/CFS patients in there, though. RECOVER will improve and getting our data in there could be really helpful.
Sure we’ll see …meanwhile those of us who have suffered now for only a couple of years with post COVID type of ME/CFS are to do what? I just received what I consider to be my Neurologist’s final Kiss off as all of my bloodwork came back OK, and I believe he just wants to be rid of me! I believe anyone “in the know and not in denial” can see that there may already be potential cures or at least potential new drugs like for instance “Inspiritol” and others , but those holding the reigns of power seem unwilling to expedite the same for a quick pathway for FDA or any kind of EUA. Will these potentials be bought out or placed on the back burner and never see the light of day, or will someone able to do so and with a sense to help suffering humanity fight with fervor through the fog to give finality that can change our fate for the better and bring immediate resolution ?
Doubtful but hopeful !
Cort, I think you may have covered this in previous articles about the NIH but I am wondering if you could review who the ME/CFS researchers Bertagnolli refers to are? Also on the one hand I understand the NIH wanting to take a fresh look at the issue of post infectious diseases like long covid but it always sounds like they are starting from scratch and reinventing the wheel. Do they talk to Ron Davis, Klimas, Bateman, Jarred Younger? Sometimes it seems like the money could be better spent funding existing researchers that actually have an interest in post infectious diseases rather than what seems like a “we’re interested but not that interested” attitude at the NIH. Or at the very least a feeling that they don’t really want to engage with patients and outside researchers in a collaborative way. I do have to remind myself that the focus should be congress, not the NIH, since congress is the one really in charge (of the money at least).
Perhaps the NIH will eventually change. The CDC has come along way, both on their website and in terms of research. Speaking of which their recent study showing that patients with “acute infection like symptoms” had similar rates and severity of ME/CFS symptoms whether they tested positive for covid so maybe it’s time to just end this ME/CFS vs Long Covid thing and go with “Post Acute Infectious Syndromes”.
You can find them here – https://reporter.nih.gov/search/i1VMP0Vh10KjIb52J1EBXw/projects
Some are familiar: Jarred Younger, Ben Natelson, Maureen Hanson, Ron and Mark Davis, Leonard Jason, Dane Cook – and some less familiar: Ariza/Williams, Avik Roy (Simmaron :)) – and some I’ve never heard of – Jiandi Wan. They are a really small group!
Yes, – despite having a committee specifically designed to inform RECOVER about post-infectious diseases – RECOVER does not appear to have taken ME/CFS very much into account. One person I talked to said they pretty much blew them off.
I think and hope the RECOVER debacle will force the NIH to change. The Moonshot Bill, for instance, REQUIRES that the leader have a background in or shown some interest in these illnesses. That was not true in the slightest with RECOVER – with unfortunately predictable results.
How much total funding has MECFS received from the the NIH in the last 40 years?
Would be nice to be able to cite a specific figure to highlight the absurdity of the funding disparity
I might be able to figure out if I still have the data. Funding has bounced around from $6 to $16 or so million but if you figure an average of $10 million a year – about $300 million all told. We learned a lot more from that than from RECOVER so far.
I think that the complete eradication of viruses holds a lot of promise. I will reiterate an experience of mine that I think supports this contention. I have had CFS/Fibro since age 30 – in the late 80’s. In the mid 90’s I took a trial regimen of bismuth (pepto-bismol) for a week or two, then added minocycline (or perhaps tetracycline) and Biaxin (clarithromycin) – taking all 3 meds for another two weeks. This was a regimen commonly used at the time to treat H.Pylori (a bacterial infection in the stomach known to cause ulcers in some people). I took it on a trial prescription from my GP even though I tested negative for H.Pylori – as my symptoms strongly suggested some kind of ongoing infection. The bismuth was taken for at least a week before (and during) the abx, as it somehow enhances the killing (or cell penetration) capacity of the abx/anti-virals.
The first week on bismuth and the second week on all 3 meds – left me with “floor hugging” fatigue – which made me basically give up hope on this regimen. But then, on the start of the 3rd week while taking all 3 meds – I unexpectedly experienced a 100% resolution of all of my symptoms, and I felt better (with more energy) than I had ever remembered experiencing in my entire lifetime. At that point I thought that I was finally cured! Unfortunately, after I completed the final (glorious) week on the 3 meds, my symptoms slowly returned.
I have explained this here because I later did some research to find that all of the meds of this regimen (the bismuth, the cycline, and the biaxin) – all have some degree of anti-viral properties (as well as their anti-bacterial properties). In fact, intracellular bacteria (like viruses) have no cell walls. They are very small and live inside other human cells. Their similarities to viruses can be so great that there is controversy amongst scientists as to whether some species are bacteria or viruses.
H.Pylori in the stomach is considered a bacteria – but it takes a regimen of multiple meds (like the one I described above) to eradicate it. This makes me wonder if new, more effective anti-virals, or combinations of current anti-virals/abx with meds that enhance them – might get rid of a viral root cause of CFS/Fibro/Long Covid – so the symptoms do not slowly return (along with the virus) after an anti-viral regimen is stopped?
Because of the incredible but temporary 100% (+) recovery that I experienced on the bismuth + 2 antibiotics (that were all also anti-virals) combination described above – I consider anti-viral research (especially in combinations) to be extremely promising. That being said, I have been waiting for decades to see it researched so I am not holding my breath.
Hi Dave, I was interested in your remission for a time on a combination of bismuth and antibiotics.
Our organization has been involved with Gulf War illness issues since the early 1990’s. Dr. Garth Nicolson, a professor of molecular biology believed that Gulf War Syndrome was caused by a micoplasma, which is something between a virus and a bacteria. He was successful in treating many soldiers with long rounds of antibiotics.
In a comment on a July 31st blog by Cort, I have a rather long comment (which I won’t repeat here) on our daughter’s success in getting ME/CFS remissions with rounds of Tamiflu which can attack viruses, fungi, bacteria and micoplasma. The symptoms come back when she stops the Tamiflu, but will go into remission again when she starts it.
It is possible that some of us could be successfully treated. But, keep in mind even though AIDS can be successfully treated now, patients are never cured and must stay on a treatment protocol for life and this is likely to be true of ME/CFS as well.
Hello and TY for your response Betty. Your comments were interesting. I recall Dr Nicholson’s work. It (in part) inspired me to take the abx regimen that I described in my previous message above.
It seems to me that the next key question is; If Gulf War/AIDS/Lyme and (at least some) CFS/Fibro patients experience symptom resolution while on abx/antivirals – Why is this so? And, why do symptoms return after the abx/antivirals are stopped?
When I considered the possibility that I might have Lyme (years ago), I found that if Lyme was treated early on – it was (usually) totally eradicated – with no symptoms returning after the abx/(anti-virals?) were stopped. But if the Borelliosis bacteria was in the body long enough to shed its cell walls and move inside the host’s own cells (like a virus), then it was difficult to impossible to eradicate it. At this stage, courses of abx (which may also have anti-viral properties) can temporarily reduce or resolve symptoms, but they return after the meds are stopped. This seems to be similar to your daughter’s reaction to Tamiflu for CFS/ME, as well as my personal reaction to abx/anti-viral meds for CFS/Fibro.
It seems that one of the challenges in the eradication of intracellular bacteria or viruses (that live inside our cells) is; How do you kill the bacteria (or viruses) inside our cells – without killing our cells (which would harm or kill us)? I gather that this is complex, difficult, and somewhat hit and miss – even with combinations of drugs that have different modes of action. This seems to indicate – that we don’t fully understand how and why these meds work (or don’t work) yet.
I also find it interesting (and suggestive) that people who take combination meds to eradicate H.Pylori in their stomach walls – don’t always succeed in eradicating it. When they don’t succeed, they still experience a symptom reduction or resolution, but the symptoms come back after the meds are stopped. Research showed that a multi-pronged (off-label) approach of combinations of multiple meds tended to be much more effective at “complete” eradication (with no return of symptoms after the regimen is completed) than any single abx/antiviral. I wonder if this might also be true for Gulf War Illness, Lyme, and CFS/ME/Fibro, and Long term Covid as well? I even wonder if a combo eradication cure for AIDS might still be possibility yet to be discovered?
At this point, we may not (yet) be able to attain a full eradication of pathogens with a permanent resolution of symptoms after a limited course of abx/antivirals, but I can’t help but wonder if that might be because we just haven’t figured out how to fully eradicate the pathogens/viruses (such as herpes viruses) that can potentially cause our chronic symptoms? In any case, I hope that this is one area of research that gets more attention, as the (sometimes major or complete) short term reductions in symptoms – in many different “unexplained and elusive” diseases – seems to suggest that it has some exceptional (and tangible) promise.
Luckily not everyone is as useless as the NIH! Interesting German study on PEM:
https://link.springer.com/article/10.1007/s15010-024-02386-8?fbclid=IwY2xjawFI2JtleHRuA2FlbQIxMQABHTxGxliRv9uN9QprIy23yCSZ86rwtrWY3Jx0SMQtokwM7FyM1gx_TigQhA_aem_Nu_VQLJ30f80U5LFXK6wzg
Thank you, Matthias!
The NIH and the ‘Recover Initiative’ are about to have a a larger and important meeting this month. Applications closed yesterday I think?
Do we have many or any ME/CFS researchers at the table in this upcoming meeting? I hope so!!
Am I the only nerd who watched CSPAN and caught Bertagnolli‘s last senate hearing where they grilled her on the NIH’s dropping the ball on the RECOVER funds?
Highly recommend watching it on YouTube.
Explains her very short, unpromising, yet forced by senate pressure statements made above. Wow. I expect more from Bertagnolli. We pay her salary. If the government expects more from her, we should be very worried. I was hopeful for her until reading this. Seems like she’s shrugging this off with false promises typical of government employees.
We need ME/CFS and LongCovid Advocates to push Congress and NIH for specific funding for ME/CFS and LongCovid diagnostic blood tests. In 2012, the FDA voted down Ampligen because there was no blood test to know a patient was a patient and that’s what the drug was working on. LongCovid patients will face the same heartbreak in the coming years if we do not act now. It’s unfair and discriminatory against ME/CFS and ME/CFS patients- but we are a disease that has never been held to the “rules” of other diseases.
I had been hoping that Bertagnolli understood the implications that 4 out of 5 people diagnosed with Autoimmune diseases are women and that 80% of ME/CFS and LongCovid patients are women. I also hoped she understood that funding ME/CFS just .04 of the disease burden while it costs the economy 1/2 a trillion dollars a year (1/2 of LongCovid) makes no economic sense and is completely illogical.
I considered Francis Collins to be incompetent and illogical, and I was hoping that Dr. Bertagnolli having undoubtedly faced the erasure that women face in every aspect of their lives, would be not only competent, and logical, but also willing to confront the cost and the solutions to the erasure of ME/CFS – rather than being a party to the complicity of that erasure.
Dr. Bertagnolli is to me a disappointment.
Competent, intelligent women are so often overlooked in the workplace, and sometimes they rise to leadership positions to “take the fall” for institutional decisions that happened long before their time and sometimes those women are more competent and visionary than the men who put them there believe and act accordingly.
My fear for Dr. Bertagnolli is that as the Great Barrington Declaration spreads Covid19 unmitigated giving musicians, politicians, and other movers and shakers exposure to ME/CFS and therefore the failures of the NIH on the ME/CFS file that before long she’s going to be wearing the mistakes of Collins, Koroshetz, and Fauci on the ME/CFS files sooner than we think. Can you imagine if Billionaires like Taylor Swift, Reese Witherspoon, et cetera get exposed to the ME/CFS story in some way either themselves or their families? Do you think they’re going to lay there and take it? The Olympic stories are only the beginning.
Unless Dr. Bertagnolli takes decisive action on ME/CFS and LongCovid now by pushing for ME/CFS funding commensurate burden and calling for grants for diagnostic blood tests I think what’s going to happen is that enough family members of both Democrats and Republicans are going to have ME/CFS soon – and Bertagnolli is going to find herself in a pincer movement by both parties who will want her blood because it’s the NIH and because she’s a woman. She’s going to bear the brunt of the responsibility if she doesn’t take command of the boat, and turn the boat around (Fund ME/CFS properly and call for biomarkers). It just seems so obvious to me.
She is responsible now and unlike Dr. Francis Collins, I don’t think they are going to allow her to abrogate that responsibility like they allowed her predecessors.
Bertagnolli is both incompetent and visionless if she cannot see what’s coming, won’t listen when she’s told what’s coming, and won’t act decisively to prevent what’s coming from happening.
(in my humble opinion)
Can the NIH be sued for not doing it’s job – for not adequately spending on ME/CFS research when the financial and social burden on society is so high? Patients can certainly demonstrate significant harm that results from inaction by the NIH.
Repeated bashing of our heads against the same wall isn’t yielding any results. Perhaps pursuing legal avenues like a class action will focus their attention?
Until they can figure out the infectious element and probable the aberant immune response i ME/CFS, I doubt the answers to Long Covid will appear. I’ve had ME/CFS for 41 years.