Has the Darth Vader of the ME/CFS Movement Changed His Tune?
Fauci’s done a great job with COVID-19, but his history with ME/CFS is not so positive.
Anthony Fauci has led the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH) for 36 years. The man must be doing something right. Neither HIV/AIDS, SARS, the Zika virus, nor the coronavirus pandemic has been able to knock him off track. In fact, Fauci’s emerging from the coronavirus pandemic more respected and undoubtedly more powerful than ever.
If you’ve been around ME/CFS long enough, though, you might have a different view of Fauci. It was under Fauci that NIAID withdrew support from the small NIH-funded ME/CFS research centers about 20 years ago. At the time, if memory serves, Fauci asserted that ME/CFS didn’t look much like an immune disease – that it was more a multi-system illness – and so he washed his hands of it – sending the single biggest ME/CFS research effort into oblivion.
It also tumbled the ME/CFS field into the darkness. After Fauci wiped his hands of it, the ME/CFS field existed in limbo at the NIH – unattached to any Institute or Office – until Vivian Pinn at the small Office of Research for Women’s Health (ORWH) took mercy and scooped it up. Pinn couldn’t do much for the disease, the ORWH didn’t get any funding for it, but she kept it alive at the NIH.
Research funding tanked, though. As Congress gave the NIH more and more money, funding for ME/CFS fell and fell until it reached a nadir at just $6 million/year in the mid-2010s.
As NIH funding tripled funding for ME/CFS dropped
Fauci never blinked. Fauci was like the man behind the mirror pulling the strings. What we knew for absolutely sure, though, was that he had no interest in this disease at that time.
Back then, we didn’t talk about the NIH director – we never dreamed we’d have a shot at him. Instead, we talked about Fauci, Fauci, Fauci. He was our Darth Vader.
When the tide started turning a bit for ME/CFS at the NIH, it was because of Francis Collins (Director of the NIH) and Walter Koroshetz (Director of the National Institute of Neurological Disorders and Stroke (NINDS)).
As Tracie White relates in her book, “The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son“, three things triggered Francis Collins’s interest: his personal relationship with Ron Davis, the “Brother Can You Spare A Dime” piece Brian Vastag wrote in the Washington Post, and the IOM report. Koroshetz’s interest is less clear – he did see ME/CFS patients at one time – but why Koroshetz has gone as far as he has – reinvigorating the Trans NIH Working Group, his visible presence at meetings and conferences, creating the NANDSC report, while his colleagues and peers ignored it – is unclear.
While we would all like more from Collins and Koroshetz, we should remember what it was like before they showed up. No interest from the top, very little support, certainly no public recognition. It was like we didn’t exist. It’s hard to imagine that the three small NIH-funded ME/CFS research centers and the NIH Intramural study would exist if it had been up to Fauci.
Things started turning for ME/CFS and Fauci a bit with the publication of the IOM report. Fauci and his senior staff meet with Carol Head, the leader of Solve ME/CFS in 2015. Carol reported that Fauci and his staff seemed knowledgeable about the illness, then, and followed up with them. NIAID also played a major role in the XMRV saga, and since the NIH’s minor re-invigoration of ME/CFSD research, it’s been a prominent funder of the ME/CFS research studies. Several years ago, Ian Lipkin, who has promoted ME/CFS to Fauci, said Fauci understood ME/CFS was not a psychiatric disorder.
Still, Fauci has remained a leader apart. Until the coronavirus pandemic showed up there was little indication he had any interest in ME/CFS research. It’s also clear that he didn’t understand the opportunities ME/CFS research presented not just for the ME/CFS community but for others.
When Fauci was asked, “What keeps you up at night? What is your worst nightmare?”, he said he always replied that it was “a brand new (respiratory-borne) virus”. Feeling that one was coming, Fauci warned the Trump administration in 2017 that we were due for the emergence of a new and dangerous virus, and were ill-prepared for it.
Fauci missed a logical conclusion of a pandemic – long haulers.
Yet both Fauci and the NIAID were clearly not prepared for a logical outcome of a pandemic – the long haulers. As Fauci lay awake at night ruminating over the devastation a pandemic could wreak on an unprepared nation, he seems to have entirely missed the possibility that a pandemic could leave millions of debilitated people in its wake.
As the first SARS coronavirus, MERS, West Nile Fever, and the Ebola virus left debilitated people in their wakes Fauci apparently paid little attention. As studies revealed that Epstein-Barr virus, Giardia, Coxsackie, HIV etc. could trigger mysterious long-term illnesses in a significant number of people, Fauci was asleep at the switch. The poster child for post-infectious illnesses (ME/CFS) was clearly off his radar.
That was unfortunate. Fauci had all the resources he needed to tackle that problem: a $5 billion/year immune institute, and a post-infectious disease (ME/CFS) that advocates had been begging him to study for years.
Throughout the pandemic, it’s been mostly been the same. Even as dozens of COVID long-hauler stories circulated, Fauci didn’t mention it or ME/CFS until an ME Action advocate specifically asked him about the connection. Finally, in July 2020, Fauci said that “some patients may have “post-infection syndromes” that resemble chronic fatigue syndrome.
“You can see people who’ve recovered who really do not get back to normal, that they have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome—brain fog, fatigue and difficulty in concentrating. So this is something we really need to seriously look at, because it very well might be a post-viral syndrome associated with COVID-19.”
That was quite helpful. When Fauci speaks, the media listens, and dozens of media outlets picked up on that. They’re still referring to that statement today.
Since then, though, Fauci has rarely spoken of long COVID (or ME/CFS). It’s odd that the great promoter of social distancing in the U. S. has never, that I can tell, used his bully pulpit to warn young people – the transmitters of so much COVID – that they were in danger of coming down with a long-term illness.
Just yesterday Fauci missed an epic opportunity to do that when Joe Rogen, a podcaster with an audience of millions, had opined that young people don’t need to get vaccinated because they would fight it off and be fine. According to news reports Fauci rebutted Rogen with the same trope he’s been using for the past year: that young people could pass the virus onto other people who could get really sick.
A recent study published in Nature found, though, that people with long COVID had a 59% increased risk of dying within six months. Another study found that six months after being infected, one in three people had experienced a psychiatric or neurological diagnosis. Fauci would likely have made more of an impact if he’d focused on that message.
Two months ago, in a short talk publicizing the NIH’s first efforts at long COVID, Fauci, whether intentionally or not, downplayed long COVID, stating that it can last “for months”. While Fauci stated that it could cause brain or heart disorders, he did not mention ME/CFS.
People can change, though, and Fauci has recently more publicly acknowledged the threat that long COVID poses as well as its link to its sister disease, ME/CFS.
Fauci’s statement that from 25-35% of coronavirus patients may come down with long COVID was helpful – and was used by advocates during the Solve ME/CFS Initiative’s Advocacy day this year. Fauci also knocked down the idea that the long haulers have a psychological disorder, stating “a lot of times people think it’s a psychological disorder. It’s not.”
Recently, Medpage Today reported that Fauci explicitly linked ME/CFS and long COVID to some of the top neurologists in the world in a special session about COVID-19 at the annual meeting of the American Academy of Neurology (AAN). Fauci said:
“We’ve been chasing myalgic encephalomyelitis and chronic fatigue syndrome without ever knowing what the etiologic agent was. Now we have an absolutely well-identified etiologic agent that should be very helpful now in getting us to be able to understand it. I hope we do; it’s been mysterious to us for years. Maybe this will give us a chance at a breakthrough.”
That was very promising. Walter Koroshetz, the Director of the National Institute of Neurological Diseases and Disorders (NINDS) then went further. First, he brought Francis Collins into the discussion, emphasizing that the director of the NIH himself wanted ME/CFS integrated into long-COVID research.
“Dr. Fauci and I’ve been asked by Dr. [Francis] Collins [NIH director] to really push on that…There are incredible parallels between the clusters of symptoms seen in those two conditions, and we’ve never been able to figure that one out.”
Citing the “very ambitious (long COVID) research” now underway, Koroshetz proposed that studying the long haulers could solve both diseases.
“Chronic fatigue syndrome is a real mystery but, in that case, you never knew what the virus was. A lot of people said they had a viral illness and then they had this trouble…(Now with COVID-19) we know when they had it, what it is, and we can actually try to trace the biology, and hopefully, get some clues that will help us understand and treat patients with post-acute COVID” and potentially, people with chronic fatigue syndrome.”
Koroshetz also clearly believes that NINDS, the big neurology institute at the NIH that he leads, will play a key role in that.
“Neurologists have to play a really important role in trying to get at the bottom of this problem, because it really is in many instances, a neurological problem,” along with dysautonomia, pain syndromes, abnormal sensations, and “big sleep troubles” that linger for months after COVID is first diagnosed.”
Having two NIH directors, including Fauci, as well as the head of the NIH himself link ME/CFS research to long COVID, is a good thing.
Still the devil is in the details. Four months after the NIH received over a billion dollars to study long COVID, much is unclear. A long-COVID grant opportunity focused on very large studies was released a couple of months ago with the news that more were coming. Two hundred and seventy-three applications were received – seemingly a drop in the bucket when $1 billion dollars is concerned. (Awards will be announced over the next three weeks.) Since then nothing has been forthcoming and big questions remain.
Four months later, big questions remain about how the NIH will study the long haulers.
Is the NIH taking in the Long COVID Alliance’s suggestions into account? Will it call on long COVID researchers to expand on ME/CFS research insights into exercise, PEM, blood flows, metabolism, the autonomic nervous system, etc.?
Will it specifically call for studies that include both long COVID and ME/CFS patients? Will it, as Emily Taylor of Solve M.E. hopes, fund long-COVID/ME/CFS Centers of Excellence? Will ME/CFS researchers be able to get their grants funded, or will they have to continue to fight against the bias that’s historically pervaded these big research institutions?
Fauci and his NIH colleagues have a golden opportunity to make up a lot of neglect.
The long-COVID and ME/CFS communities have not been standing still. During Advocacy Week, a thousand or so advocates asked their representatives to support the $95 million COVID-19 Long Haulers Act to improve long-COVID and ME/CFS research, improve health care access for long-COVID patients, and educate doctors about long COVID and ME/CFS.
Alert! A Congressional hearing, “The Long Haul: Forging a Path through the Lingering Effects of COVID-19“, is underway at 11:00 am (EDT) this morning and will include Francis Collins, a CDC official and others. Watch the livestream of the hearing here.
I disagree that Dr. Fauci is so respected. There are others who are more reliable such as Dr. Atlas. If you look carefully into Fauci’s career history, he has not been so good and honest there either.
I’m sorry if I have offended anyone, but this is following the history of his career.
Just comparing the two.
Fauci has lead the now $5 billion dollar NIAID Institute for 36 years. From 1983 to 2002, according to Wikipedia he was one of the world’s most frequently-cited scientists across all scientific journals. In 2008, President Bush, a Republican, awarded Fauci the Presidential Medal of Freedom, the highest civilian award in the United States, for his work on the AIDS relief program PEPFAR. Whatever you think about him he’s functioned at the pinnacle of the medical research establishment in the US for decades.
Atlas was a neuroradiologist at Stanford for 14 years until 2012. I can’t find information on what he did after he left there. He has no expertise in infectious diseases. He’s apparently now out of medicine altogether and is now a member of the conservative Hoover Institute.
Agree!!!
Fauci’s Viruses Gain of Function Research in China was very respected. I’d love to read more on that.
It remains arguable that the gain of function studies were responsible for creating SARS-COV-2, and that they were highly irresponsible.
Atlas is a fraudulent disgrace. You are way into quackery and politicized information. Sorry but your ignorance is worse than useless.
I agree with Marilyn. Dr. Fauci has a long history with NIAID but, like many political appointees, his career has not been without controversy, especially regarding how he handled the AIDS epidemic several decades ago. Also suspect is his support of Wuhan lab’s bat studies, after gain-of-function studies with the potential to enhance the pathogenicity or transmissibility of potential pandemic pathogens was no longer allowed through any HHS agency (back during the Obama Administration). It was reported that the NIAID then funneled the funds through a non-profit organization while our leaders looked the other way. No matter how esteemed he may appear, Dr. Fauci continues to have a questionable history, and no one should be above reproach.
Yes I 100% agree with you!!! If you look back to the whole thing between Fauci and Dr Judy Mikovits when she discovered XMRV and said that our entire blood supply and vaccines were all CONTAMINATED and that’s what was giving people ME/CFS and look at the was that Fauci treated Judy Mikovits and what he did to her, he completely covered it all up and threatened her and her family and everyone that was involved with all the research!!! Then Fauci tried to BRIBE Judy with MILLIONS of dollars to get her to retract her statement but thank GOD she has morals and ethics!!! I still 100% believe that she is right and everything is contaminated and we all do have XMRV!!! Her gag order was lifted about a year ago and everyone can see videos she has posted explaining what Fauci did to cover everything up and how crooked his is, all the science work he stole from her and other scientists etc HE IS EVIL TO THE CORE!!! All people have to do is FOLLOW THE MONEY and you will find that with our own taxes we funded coronavirus research at the EXACT LAB IN WUHAN where covid was released!!! All the grants are there proving it!!! Also Judy has several books that she has published explaining all kinds of stuff!!! Everything has been a coverup since the beginning and that right there is why we don’t get any FUNDING into our horrible disease!!! Because it ALL LEADS BACK TO THEM BECAUSE THEY CAUSED IT!!!
SO TRUE ! YET WHEN WILL THEY ALL SEE IT?
Fauci panders to insurance companies and their lobbyists by not advocating testing for most viruses nor detection of genetic variances in patient’s response to infection. Insurance companies won’t routinely pay for many viral or genetic testing other than Covid.
Genetic conditions such as Familial Mediterranean Fever and Ehlers-Danlos both affect immune response to infection and are not as rare or benign as the CDC claims.
The CDC directs doctors not to order viral tests (except Covid) “as most viruses”, (Zika, Coxsackie, CMV etc.) “are rare, mild or asymptomatic” (see CDC website.)
My professor, an M.D., told his class several years ago “Zika is in all 50 states but the CDC won’t tell the public because they don’t want to scare people”.
Fauci should not be in a position of authority as years of factual research is being ignored.
research published on NIH and pubmed websites regarding long term effects of many viruses. The CDC website prior to covid, has stated most viruses are “rare, mild or asymptomatic” Zika virus testing is still not recommended by CDC for pregnant women.
That’s terrifying to hear – especially about Zika and pregnant women. But better to know than not know. But how to get the word out? Holy moly.
Thanks for your post R.T.
You appear be mixing up Fauci and the CDC. Fauci is the head of National Institute of Allergy and Infectious Diseases (NIAID) not the CDC. NIAID is tasked with researching things like the Zika Virus.
The Centers For Disease Control (CDC) is tasked with controlling diseases. It gets its data on Zika cases (and 120 other diseases) from by state, territorial, and local health departments etc. regarding Zika virus prevalence based on them recommends tests for the public.
The CDC website states
https://www.cdc.gov/zika/symptoms/diagnosis.html
The CDC had 4 Zika cases reported to it in the US in 2020, 28 in 2019, 74 in 2018. Virtually all of them came from people traveling in known Zika areas.
Even if the CDC is not picking up all the Zika cases occurring in the US if Zika was a problem the CDC would know of it because of the extensive surveillance provided by health departments, etc.
My son almost died 2 years ago from GBS. ICU doctors refused to test him for Zika as a possible causative virus (in Florida amosquito state) which has documented GBS consequences on pubmed published as recently as 2020. ER doctors did not recognize his initial neurological symptoms of GBS in the ER and wanted to send him home one day before intubation.
My point is without testing patients for many viral caused illnesses the CDC and NIH and public health departments likely have an inaccurate count of the prevalence of any virus. My CFS doctor orders Acyclovir or Gancyclovir that is effective in slowing my 50 years of chronic Epstein Barr long term symptoms. Most doctors think this treatment is “hogwash” because after many years the Viral antibody lab results show past igG not present igM infection. The NIH and CDC are both responsible for educating doctors. 6 years ago I caught Coxsackie (HFMD) after caring for sick children with this illness and being misinformed by 2 doctors that “adults don’t get the virus and “adults don’t get the rash”. After days of severe headache, fever and rash another doctor diagnosed viral encephalitis. Sudden post viral trigeminal neuralgia and sudden permanent diagnosed cognitive decline were consequences. No test done for Coxsackie therefore no report to health dept. I had to go to the British public health website to find answers not explained on CDC website.
“Most doctors think this treatment is “hogwash” because after many years the Viral antibody lab results show past igG not present igM infection.”
That gets me thinking about something Issie experienced:
* She is officially diagnosed with immunoglobulin defficiency. Yet against her latest tetanus vaccination she had a rather unpleasant long lasting reaction AND still high antibodies against tetanus years after they should have wained.
I know it’s a big guess, but for some time both of us play with the idea that our immune systems have roughly two main settings:
A) No antibodies formed even in the presance of a smoldering infection as long as it is not acute and life threathening.
B) An avalanche of antibodies formed in “panic mode” in order to try and contain an out of control infection.
It sort of feels like for many of us our immune systems might be suppressed a lot most of the time *because* the body knows that once it gets activated, the production of antibodies and related immune response may go straight to hyper mode and become possibly life threathening itself.
Compare it a bit with how one of the bigger dangers to die from Covid is by the immune system going out of control.
Could this hypothetical all-or-nothing switch be part of (many cases of) ME too???
True!!
It would be so nice if someone at the hearing would ask Francis Collins about the million or more long, long haulers that are ME/CFS, the lack of support for them and how the NIH will include them in its long COVID studies.
Not yet.
The videostream got messed up but I think one committee member did ask the CDC leader about ME/CFS and he replied something about how research into long COVID may help.
Collins asserts that the risks to young people from long COVID have not been appreciated….(Fauci could have helped a lot there.)There’s no doubt but that Collins is a very convincing speaker.
Feed keeps cutting out. I’ve participated on so many Zoom calls with no problem at all. Amazing that Congress can’t get their darn feed right.
It seemed me that the Dr downplayed or advised caution in suggested similarities between Long Covid and ME, though he did say research may help both. It was a bit of a disappointing answer I thought
It seems plausible that Dr. Fauci diverted large sums of money away from CFS research around 25 years ago which Congress expected the NIH via NAIA to use for CFS research. That diversion was apparently based on Dr.Fauci’s “gut” decision NOT science. That action was surely unfortunate if not even criminal.
Not only might we have important insight into diagnosis and treatment for CFS, but we might already have information now, today, that would be informative to care and amelioration of long Covid.
It’s possible, despite the brilliant research success Dr. Fauci had in the AIDS field, he’s responsible for years of agonizing suffering by those with CFS and now among some who contracted the Covid19 virus and its variants. The damage is incalculable and quite possibly mainly due to an over sized ego by the one clinician that could have prevented it. Our government should also be ashamed to have given so much authority and lack of oversight to one individual.
And that doesn’t even touch on the actors involved in the appearance and dispersion of the Wuhan virus which may have been a grave lab error or possibly a purposeful event orchestrated by the Chinese government with assistance from a self aggrandizing American immunologist. We may never know the truth. But the results are devastating, killing more than 6 million people and wreaking havoc with almost all avenues of the world’s economies, social structures, medical systems, and government functions. History may look back on this as the greatest calamity of the 21st. century.
I’ve heard nothing good about Fauci, and this eye-opening post certainly isn’t changing my impression. The only virus he seemed to be focused on was HIV – that was his baby – to the detriment of most everything else.
That’s one of the reasons I remain mistrustful of the Covid vaccines; not only are none of them approved (they’re all still in the trial stages and had to receive special legislation world-wide to allow dispensing them without approval), after pouring literally billions of dollars over decades into HIV there still is no approved vaccine for it. There are, however, successful treatments such that AIDS is no longer a death sentence, and according to physicians who treat both conditions, even those with AIDS can live better lives than those with severe ME/CFS.
If Fauci has spent decades ensuring ME/CFS patients were denied treatment – and even status – there must be some reason behind it, and unless that’s addressed we’re still fighting an invisible foe.
I’m not hopeful that the long-Covid pressure will be enough to guarantee a last minute Damascene conversion. Lets hope the pressure by advocacy groups can be effective enough to turn most of the people around him such that any influence he has to keep throwing up road blocks are minimized. Or halted altogether.
From this post, it seems that instead of putting all our focus on trying to raise awareness of ME/CFS we need to be focused more on fighting the dis-advocacy coming from people like Fauci (and Wellesley et. al.)
Let’s hope that Fauci has indeed had a conversion. Whatever the controversy about Fauci – and I know there is a lot out there – he is a powerful figure and yields a lot of clout. If he is now behind more ME/CFS research that would be a great thing. We haven’t seen that yet but we shall see. He certainly has more reason than ever to be behind it.
I don’t know what Fauci says privately to his peers at the NIH about ME/CFS but he hasn’t publicly said anything negative about it. He’s just kind of ignored it.
The vaccines received emergency approval from the FDA after extensive testing suggested they were effective and safe. While Fauci certainly promotes vaccine use neither he nor the NIH has the power to approve vaccines. That’s the FDA’s bailiwick.
The reason why Fauci ignores ME/CFS is simple, if you look at everything that Dr Judy Mikovits has said in her interviews and read her books and actually believe what she says, it completely lines up with exactly what we are looking at with Fauci and all his actions or shall I say INACTIONS over the last several DECADES. I 100% believe Dr Judy Mikovits and think that our entire blood supply and vaccines are all contaminated and causing XMRV. I got ME/CFS after I got vaccinated with several things and I’ve talked to many many more that say the same thing. Do you think that if everything was contaminated that the government would actually ADMIT it? No way!!! They would be sued by MILLIONS of people and have a war on their hands!!! They are all totally crooked in my opinion. I would have never thought that before I got sick with ME/CFS but after doing THOUSANDS of hours of research on vaccines etc my eyes have been opened up to all the corruption that’s been going on for many many decades. There is not a single vaccine on the market that is safe and effective!!! The anti-vaxxers were right all along and we all just looked at them like they were crazy tree hugging granola eating crazy people!!! If people actually spent a little time researching into the anti-vaxxer websites that actually break everything down for you and back it all up with linked scientific published papers then everyone else’s eyes would be opened too! Also people can google each ingredient and see that they changed the name of it to make it look better and that the ingredient is actually something horrible. These covid vaccines are a death sentence! They are gene therapy 100%!!! And all the top scientists and doctors that I follow are saying that the vaccines are causing PRIONS diseases. If you step back and look at the big picture this is totally a PLANdemic and their goal is “The Great Reset” which is another word for the new world order! I know many people just brush it off and say it’s all conspiracy theories but it isn’t! I wish that it was!!! If people would go to a video and watch it, these people are all providing PROOF of all of this and everything they have said going back a year and a half ago that people are saying is a conspiracy theory is all coming true right before our very own eyes! People can’t say it’s a conspiracy anymore, and if people don’t step up and do something then it will be too late! It’s like how to cook a frog you don’t just put them straight in a pot of boiling water, you put them in the water and gradually turn the heat up and overtime they are so comfortable they just sit there and get cooked! That is what’s happening to the entire world right now! I am asking everyone right now to look at both sides of the story, then you can make your decision on what reality is, but until then people can’t say it’s a conspiracy theory without truly looking into BOTH SIDES!!! That’s like reviewing a book or movie that you haven’t read or watched, it makes your input 100% invalid.
Fauci is a deep state dem, he loves Hillary Clinton and is responsible for giving Wuhan $3.7 million, hmmm. This was planned to stop Donald Trump because many were headed to jail. he also was part of the 1986 vaccine act to give a complete liability shield to vaccine makers. Right after that law was passed and signed vaccine induced autism began to rise as the number of mercury containing vaccines were added.
It looks like this is going to be last Fauci piece I do (lol)
am i wrong, i can not read well, but it seems to me that nothing positive for me/cfs has come out of it? if they really wanted, they could throw billions into research, homes, education, etc And all countrys should… They all, everyone, every country ow us because how they neglected us, mada many worse with get and cbt, and all the other thing. Over decades false promises. Her in my country, a few get and cbt sessions and you are cured. ME does not excist. it is only cfs and cfs is even less then shit. Even no symptomtreatment, nothing, except for get and cbt
CONSPIRACY POLITICS. Thanks for trying to show facts.
I don’t blame you (lol). What I fear here is that too much opinion gets in the way of fact and often overlaps a little. That’s the old writer and publicist in me, I suppose. We need to focus on the now and the future. Each of our hopes is the same; funding for research to help ME, long-haulers, and related diseases.
You have Sterling Character and patience, Cort. Your courteous truth …and ability to maintain humor … is much appreciated. Thank you for kindly, but firmly, supporting the Scientific Method.
Thanks!
Linda, giving money to Wuhan, giving any help to areas where the virus is proliferating helps the rest of the world, us included, because the virus needs to be stamped out and it doesn’t respect borders. Secondly, there is no such thing as “vaccine induced autism”. This has been debunked over and over. Listen to the science, not to influencers on Facebook.
Correction: the theory that autism is caused by vaccines has neither been scientifically disproved nor proven, and it was not invented by “influencers on Facebook.” The theory has undergone modifications over the years, however, leading some doctors to at least modify their recommendations on vaccine “schedules” and choices for infants and children, and for vaccine makers to have occasionally tinkered with adjuvant ingredients. It has also been at least partly responsible for vaccine makers obtaining immunity from lawsuits through their lobbying and gifting activities.
She is talking about all the money that Fauci gave Wuhan, funding research into coronavirus and bats BEFORE all of this happened (a couple years before).. you can look it up since it is our federally funded money. Also the autism vaccine link has NOT been debunked, there are tons of papers proving the link and also so many scientists have came out sharing how they were offered money to say that their research was wrong and unpublish their paper proving the connection. Then if you look into the scientist who have been murdered after publishing their work it’s astounding.
Well before Facebook, the controversy of mercury being used as a preservative in vaccines was alive and is true.
Can mercury cause health concerns we all know the answer is yes.
Decades ago, had a mouth full of mercury dental fillings removed.
With deep research one might find it is still being used in current times.
Yes, it improved my health, yet I still have autoimmune troubles.
Not- a conspiracy theorist
YES 100%!!! You didn’t see all these diseases back in the day, it only started to appear once they passed the 1986 act and started upping the childhood vaccine schedule.
It’s unbelievable that right now in the vaccine schedule that we are poisoning our children with 72 vaccines by the time they are 18!!!! Back in my parents day they only got 3!!! I don’t understand why people aren’t connecting the dots with these things!
It makes absolutely no sense why people are lining up to get this Covid vaccine when there’s only a 5% chance at worse of being hospitalized or death! Also there are several FDA approved treatments that completely 100% cure you of coronavirus! It’s all just so mind blowing seeing people going along with all of this madness!
It’s like why aren’t they sitting back looking at the situation and realizing that we AREN’T seeing people all around us dropping dead like they make it look like on tv!
Also why aren’t people wondering why HUNDREDS OF THOUSANDS of doctors and scientists are being completely censored for their opinion, we are always supposed to be open for scientific debate yet all of a sudden they want no debate! All these amazing good people are providing all the PROOF yet they can’t even get the word out to the people so they had to create their own website, it’s insane!!! So-called conspiracy theories have never been censored in the past yet all of a sudden this one conspiracy theory is being censored! It doesn’t make sense at all and should make everybody wonder why! There is always a motive, us smart people know what that motive is. I sure pray that everybody wakes up before it’s too late. It’s mind blowing that they are even saying it’s not true and being so strong with their opinion considering they haven’t even researched both sides of it, and if they don’t do that then their opinion is 100% invalid!!!
Im pretty sure that the vaccines in the current program do not usually contain mercury. Aluminium is another matter.
Thank you Cort for your great journalism and for continuing to push on the funding/research piece.
I don’t believe this is a left/right thing.
Fauci may be a Democrat, but it’s my understanding that Wellesley (UK – PACE trial) is a Conservative. We have the same situation here in Canada – no funding, no treatment, no awareness, lots of stigma – despite years of Conservative govt (under Harper) followed by years of radically left-wing Liberal govt. under Trudeau, through multiple successive health ministers. I don’t believe the situation is much better in Australia, and they seem to change govts (or at least Prime Ministers) like most of us change our underwear! 🙂 (Just kidding – no offence intended to our Aussie friends. 🙂 )
There is some other influence going on here that is negating our cause – that seems to be independent of political leanings. At least, that’s how I see it.
And I don’t think the driving issue is necessarily insurance, or public $$. Lots of diseases are ‘in favour’ and get lots of funding through insurance and otherwise, whilst many diseases languish ‘out of favour’ and are not funded anywhere near their needs nor their impact on society/the economy.
I think some examination of exactly how, and why, and when, ME/CFS fell SO FAR out of favour by public bodies everywhere – beyond what would be expected for any hard-to-diagnose disease – is in order.
Fauci is just the current example of that, but by far not the only one.
Cort, I hope that’s not the case that you’ll stop writing about any particular topic; I found this post to be extremely informative, and perhaps more hopeful than others precisely because you wrote frankly.
I just want to note that Fauci has served under 7 Presidents – four of which were Republicans. Last year was the first time I ever heard his political affiliations mentioned or questioned.
My thinking on this is like yours – ME/CFS has never been in favor. The fact that Fauci wasn’t interested in supporting it wasn’t all that unusual back then or now.Still kicking us out of NIAID had a real effect. I don’t know how involved he was in that decision but it did occur on his watch.
I think Fauci’s is more an example of a mindset that is hopefully turning. While Fauci and the NIAID didn’t get in front of the NIH’s small reinvigoration of ME/CFS research like Koroshetz did, they did support it. Now with long COVID in front of us Fauci seems to be more interested in ME/CFS. Let’s hope that translates to more funding for us.
Our field needs to grow in order to incorporate the findings that come out of long COVID. Studies that include both ME/CFS and long haulers would be VERY helpful with that. When the NIH offers grant opportunities they specify what they want to fund. If the NIH specifies that it wants studies that include both ME/CFS and long COVID patients that will be good. We don’t need a lot of studies but we need to be included in the mix.
Putting in a plug for Solve ME’s Patient Registry – it’s one way to provide enough patients for these studies. Finding patients is not easy….Finding long COVID patients will probably be easy. Finding enough people with ME/CFS will probably not be.
Both, corporate Right and corporate Left were not interested in CFS all these decades because there was not big money involved. HIV was a very different story, quite the opposite.
If there are billions for COVID research perhaps “heroe” Fauci would think about spending a bit for long COVID. Let’s pray hard but don’t hold our breath
Fauci and the NIH caught funding China’s covid bioweapons research
“There is some other influence going on here that is negating our cause – that seems to be independent of political leanings. At least, that’s how I see it.
And I don’t think the driving issue is necessarily insurance, or public $$.”
ME was, and still is, sort of the “impossible diseasse”. By so much what doctors learned, a pathogen that is removed from the body and no remaining clearly vissible tissue damage from the diseasse *shouldn’t* be able to affect the patient in any way let alone so badly. By so much they learned, that would require a sort of magic to work.
If that “impossible dissease” could happen right under their noses and they be clueless as to how on Earth it is possible that it happens, then it would cast doubts on so much of what they learned and it would confront them directly with the limits of their knowledge. It would be a rather sobering thought for many of them, and a rather scary thought that they are clueless on this one.
If they could be clueless on this one, on what else could they be clueless as well? Such doubts could freeze many in imobility, inaction. For many doctors, the thought this could happen is IMO too scary and needs to be banned to a dark corner of their mind.
That is why I believe a clear explanation HOW this “impossible” thing like post viral diseasse could even exist is so important. Once that is there, we’ll have IMO far better chances at being heared. Getting to that point requires research. But that research requires the courage to face this “ghost” wandering the halls of medical practice, medical knowledge and the seeming doom of its limitations.
Great insight DeJurgen! Courage is a necessary ingredient in beating ME/CFS. It takes courage to admit that you were wrong, that people with ME/CFS or FM aren’t a bunch of whining hysterics – that something REALLY is going on – and you’ve been ignoring it and lots of people for a long time. That takes guts.
It takes guts to recognize that something entirely different that you don’t understand is going on. Much easier to push it into some handy box you’ve been using for years.
We are like a ghost haunting the medical profession. We’re a ghost hovering about the heads of all the doctors who’ve turned patients away, all the bureaucrats who never stepped up to the plate for us, all the reviewers who found something, anything to mark our grants down, all those who belittled these diseases to cover up their ignorance or found doing so a way to sound smart and kiss up to their colleagues.
What a great analogy! 🙂
“Jung stated the shadow to be the unknown dark side of the personality. According to Jung, the shadow, in being instinctive and irrational, is prone to psychological projection, in which a perceived personal inferiority is recognized as a perceived moral deficiency in someone else.
Shadow (psychology) – Wikipediahttps://en.wikipedia.org › wiki › Shadow_(psychology)”
I’ve sometimes wondered if the dark flipside of the medical profession’s very insistence on high professionalism, adherence to scientific principles, and depth and breadth of knowledge, is a stronger than average fear of losing control. Of NOT understanding, being out of one’s depth. Feeling like an idiot.
If this is true, when a mysterious illness appears that they can neither detect nor explain in any of the usual ways, it might be the shadow’s default, instinctive response to blame the patient, and by extension, the entire patient population. Only one step further and the very existence of the illness and its impact on sufferers may be doubted or denied, as the baffled medic projects their sense of ‘personal inferiority’ in this situation onto ME/CFS and its sufferers, as having some inherent ‘moral deficiency’.
The way around this might seem to be simply to re-empower them with the belief in the possibility of a breakthrough, in which they could pay a significant part. But it may be that the patient and research community’s previous over-hyping of certain aetiological explanations and treatments, that turned out not to hold water when put to the test, could have freaked them out, sending them scuttling back to that default ‘shadow’ response of ignoring and downplaying the illness.
There are lots of medical conditions of unknown origin….
Idiopathic: Of unknown cause. Any disease that is of uncertain or unknown origin may be termed idiopathic. For example, acute idiopathic polyneuritis, diffuse idiopathic skeletal hyperostosis, idiopathic pulmonary fibrosis, idiopathic scoliosis, etc.Mar. 29, 2021
Well, said from you both!!
Some really wonderful replies here – thank you all. I very much like the “ghosts wandering the halls of medical practice” metaphor, and dejurgen and Elizabeth’s comments re: the shadow inability to face the unknown by the medical profession.
However, there is still something that doesn’t add up here – and I believe yet more unknown influences driving the stigma and ostracization of ME/CFS. Re: ‘the impossibility of post-viral illness’ – something is off. Very off.
The first signal that something is very ‘off’ in the entire consideration of ME/CFS is the awareness – routine throughout all of medicine – of the existence of post-polio syndrome. To say that physicians don’t understand how it all works is one thing, but to say that they can’t entertain that this is possible, is something else entirely. Something stinks to high heaven here. If that knowledge has been conveniently ‘forgotten’, there has to be yet another driver behind that as well.
Here is a reference from the CDC: https://www.cdc.gov/polio/what-is-polio/pps.html
And just try to tell me that this detailed description of post polio syndrome by NINDS doesn’t sound suspiciously like ME/CFS in many regards: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Post-Polio-Syndrome-Fact-Sheet
This fact sheet from the Mayo Clinic at least attempts to theorize what the underlying aetiology is: https://www.mayoclinic.org/diseases-conditions/post-polio-syndrome/symptoms-causes/syc-20355669 (Yes, I know I’ve used aetiology incorrectly…)
So it’s not just the “ghosts” of ME/CFS wandering the halls, it’s the “ghosts” of polio too. And who knows how many other viruses. And fungi. Especially fungi. I believe mold is a very significant issue for many of us – as do some researchers – but it never gets studied with any thoroughness, despite the known issue of apergillosis: https://www.mayoclinic.org/diseases-conditions/aspergillosis/diagnosis-treatment/drc-20369623 Not to mention the whole mold area seems to be full of scams and opportunists, with no valid research in sight to help people navigate.
I think the ultimate drivers of ME/CFS ostracization are likely to be related to cost containment, and possibly covering up fraud and corruption, but I think a big part of the answer is just that as a disease we’re the easiest targets. We don’t look ill, our initial virus – unlike polio – didn’t produce any deformities, and as long as efforts to prevent detection or acceptance of a biomarker are successful this whole charade can go on indefinitely. Paint very ill people as hypochondriac whiners, feed them to the ‘mental health’ and psychiatric systems, and ‘viola’! A self-perpetuating system requiring no public investment.
I’m not saying this lightly either: many years ago I worked for a health informatics division in a major hospital and heard some pretty astoundingly immoral and unethical reasoning made for future research and clinic directions, by executives whose hubris was so off-the-charts they felt comfortable saying this out loud to an entire division of people. Proudly, in fact. Including asserting that in the immediate future (five year plan if memory serves) investment in kidney disease research would go up significantly, and go down for liver disease… (loosely quoted from memory) “because no-one ever dies on kidney transplant lists because of dialysis, which is very expensive for the hospital, but people die on liver transplant lists all the time – no big deal. No extra cost to keep them alive.”
I honestly believe that this is the stuff we’re fighting, and all the efforts into soliciting grants etc.. won’t amount to a hill of beans unless and until this can be overcome.
I think dejurgen is on track with his comments here. I recall a nursing professor of mine joking about how some doctors confuse the “MD” behind their names as “medical deity”. They, and we in society in general, place them on this pedestal of all knowing, all healing. If something is really outside the box and isn’t easily explained by their training, some, unfortunately, find it easier to dismiss the patient.
I recall a very early incident in one of my own clinical rotations in nursing when I was a student being shadowed by one of my professors for a procedure I was doing. When I answered a question with a rising intonation, she gave me an angry look and pulled me aside. It wasn’t that I had given her the wrong answer; it was the tentative nature indicated by the rising intonation she took fault with. So even among nurses there seemed to be this idea that you should always project certainty – even when you’re not.
Fauci and I aren’t all that young anymore. I’d like to think (I hope) that this has changed. I’d like to think you CAN teach an old dog new tricks. COVID has pushed the issue of lingering symptoms from viral infections to the forefront. It’s undeniable. I think he and the rest of the medical community can’t ignore and dismiss this. There was no internet when we went through our respective training, but now, there will be social groups popping up all over to discuss the issue. There will be sites that evaluate medical professionals. In a sense, the internet will hold these professionals more accountable. He really has no choice but to get on board.
Good article, Cort.
Mr Johnson,
Thank you for the article. It was very interesting. You are arming many of us with information that we would not be able to get otherwise, and that is invaluable. Regardless of what we think of Fauci or others in leadership positions, those in the me/cfs community need to hear the types of things you write about. Keep up the great work, and keep it coming.
Thanks!
As an ME/CFS patient since 2008, and a former member of the board of Solve ME/CFS Initiative, I can attest to our efforts to get Dr Fauci to take our illness under his purview without success. However, I think we should be looking forward and working to get him committed to the connection to long haul COVID now. I have been telling everyone I know about the connection and it’s still a tough sell to the lay audience. Hopefully the key researchers do “get it” now!
I must admit it’s hard, given my feelings about Fauci and ME/CFS, not to just slam the guy! It’s not easy to give up resentment. It is necessary if we are to work towards the future. It’s the only way to go if we want to get this solved as quickly as possible.
The abuse won’t stop until someone takes a legal steamhose to NIH and a few of the biggest cockroaches get an all-expense-paid vacation at the Greybar Hotel.
NIH’s recent refusal to publicly correct the record regarding alleged “ME Evildoers who threaten researchers” tells us all we need to know about NIH policy of No Research for ME.
NIH is still running an ME public relations campaign instead of a research program. They exhibit a pattern and practice of blatant discrimination in clear violation of Section 504 of the Rehabilitation Act.
And we let them get away with it. Where are the disability rights activists? They should be all over NIH and CDC like flies on manure. But all we hear is… crickets.
I’ve been wondering about Dr F’s position since being diagnosed–thanks for the write up.
One of the major consequences of Fauci and NIAID, Reeves and CDC, and Sharpe/Wessely in Britain has been that it has been extremely difficult for people with ME/CFS and related illnesses to receive benefits for long-term disability. Many available policies in the marketplace, including those underwritten by private insurers such as UNUM, Liberty Mutual have exclusions for “Mental Illness”. Some of these “researchers” acted as paid consultants to the various insurers to make it very difficult for patients to collect, causing significant poverty to patients. In my experience, it was necessary to hire an attorney familiar with ME/CFS, have numerous tests (at my own expense) and to be subjected to being surveiled by some bozo private investigators.
There are many heroes who have hung in there with us since the 1980s: Peterson and Cheney, Leonard Jason, Nancy Klimas, David Bell and many others. More recently OMF and Solve ME/CFS have done amazing work educating the public and the scientific community as well as significant fund raising. The current group of scientists researching ME/CFS recruited by OMF and Ron Davis are multi-disciplinary. They are international experts in their respective fields.
For the 23 years that I have been coping with ME/CFS, Fauci has either supported the somatic theories or stood down and done nothing (with a NIAID annual budget pre-Covid of $5.9 BILLION).
It is time for Fauci to retire. He has lost a lot of credibility as he ducks and weaves his way through Covid. He will only deal with ME/CFS as a serious illness because even he cannot deny long-Covid and its similarity to ME/CFS. Not my hero…
This very interesting and needed post highlights once again the problem ME/CFS has in not having a big name donor/advocate in the private sector. I bring up the comparison once again with Cystic Fibrosis. Bill Gates Senior donated $20 MM to CF research in, I believe, 1988, and they’ve taken huge strides. I fear that as long as we have to depend on the government for research and research funding, we’re going to continue floundering around.
PS Check the New Yorker article in, I believe, 1996 re genetic research and CF and the history of research into the disease and funding for that research.
Thanks for the great article Cort. And as always you handle even the misinformed responses from left-field (or right field, as it were) with grace.
My view of Koroshetz has not been so favorable. Even in recent months I’ve seen him miss many opportunities to commit to meaningful action for ME/CFS, always merely “hoping” or voicing “optimism” that Long Covid learnings will trickle down. I appreciate your historic perspective. I don’t fully understand why Koroshetz will not or cannot allocate more discretionary funding that the NIH already has access to, but as you say we’ve long known now it will likely come down Congress appropriating new set-aside funding for our disease. Apart from funding the biggest factor is clearly whether ME/CFS controls will be included in forthcoming Long Covid studies. It appears Congress has left the door open to that. Unclear to me who the stakeholders are in deciding whether this comes to be.
Yes, I understand the upset with Koroshetz and I was so disappointed when Collins – after asking us to “watch him” said four years later, in the midst of declining grant applications, that there would be no funding increases in the near future.
Still, I wanted to appreciate how different it is now and pre-Collins/Koroshetz. We never dreamed back then that the NIH director would even acknowledge ME/CFS or that an Institute director would – let alone support it. Some people say get rid of Collins or Koroshetz but that would surely be a disaster.
Our best course in my opinion is to master the fine art of pressing them to move forward faster while honoring the fact that they alone have stood up for us.
Your comment is right on! It’s all about money. It is not that they hate ppl with CFS
The biopyschosocial is alive and kicking in treating Long Covid in the UK. Don’t believe otherwise. It’s in the press as a lever to be pulled and getting some traction in the NHS. Michael Sharpe is running one of the Long Covid rehabilitation clinics in the UK. Have a read through this and you will see some very familiar narrative.
https://www.swissre.com/dam/jcr:788aa287-7026-430a-8c14-f656421b6e71/swiss-re-institute-event-secondary-covid19-impacts-presentation-michael-sharpe.pdf
I have never doubted the benefits of psychological support for people with a wide range of Neurological disorders. It is something to be welcomed. What sets Michael Sharpe et al out from others is their continued insistence that their PACE like paradigm to restore normal function should play the lead fiddle in any multi-disciplinary team. Single recovery cases (such as Paul Garner, who I wish well) are being held up as drivers for treatment, as opposed to proper balanced research.
A group of psychiatrists who have almost single handedly constrained research into ME for three decades seem surprised that they have lost the support and trust of those afflicted. A lack of honestly and a fair and balanced approach on their part has created this situation; nothing more.
It’s a sad state of affairs, not for them, but for those who have spent decades in hardship, pain and suffering due to a lack of investment in biomedical research.
I’m sure the biopsychosocial field in the UK is absolutely shocked and its no surprise there is pushback. I predict the same results we’ve seen before. I think it’s probably more the lack of really significant results over time that has done them in over time.
You’ve kind of summed pretty much exactly how I feel.
“I have never doubted the benefits of psychological support for people with a wide range of Neurological disorders. It is something to be welcomed. What sets Michael Sharpe et al out from others is their continued insistence that their PACE like paradigm to restore normal function should play the lead fiddle in any multi-disciplinary team. “
Fauchi said “We’ve been chasing myalgic encephalomyelitis and chronic fatigue syndrome without ever knowing what the etiologic agent was”. Bullshit to that.
Epstein Barr virus is well known as the most common trigger virus for ME/CFS, and has been for decades.
Ha!…(Good point which somehow I completely missed…) We even have very recent studies showing that young people with infectious mononucleosis can end up with ME/CFS! We know exactly what caused that.
Of course the Dubbo (with Coxsackie, etc.)and Giardia studies showed the same thing. It’s always been there for the tracking – if Fauci or others wanted to do that. No need to wait for coronavirus.
Thanks for mentioning that!
I’ve never been able to get anywhere with the virus that gave me FM, RA and ME… histoplasmosis. I don’t know if it’s rare or just not talked about…yet. One gets sick from breathing the spores coming off of bat shit. This happened at an outdoor wedding about 37 years ago. Three of us were hospitalized out of about 130 who got sick. I lost 25 lbs in three weeks. I had a fever and horrible body pain for six months. One guy nearly died. There are levels of how sick one may get, not unlike Covid. But docs didn’t know what we had until it was too late. I believe there are a plethora of viruses we don’t even know exist and many people have caught them and will never know. I asked my doc once what she thought would be the demise of mankind. (I know, negative!!) She said virus!
That’s a rare one – but if Coxiella, EBV, Coxsackie, Giardia, SARS, Sars-COV-2 and others can trigger ME/CFS why not histoplasmosis. Did they confirm that it was no longer present?
Thank you, Cort for everything you do. Thank you, Wayne for mentioning EBV. I have always believed that the precursor for the Mono I had in college and the onset of ME/CFS are connected. Add severe stressors to an EBV infected body and voila… severe illness. I was diagnosed with CFS in 1994. It’s been a long haul.
Histoplasmosis is a fungal infection and Giardia is caused by a protozoan, I think. If they all produce lingering symptoms that get classified as CFS/ME, there clearly are multiple causative agents for this diagnosis. These, however, could either be misdiagnoses; other causative agents at work; or the possibility of non-viral agents activating a viral cause – which puts us squarely back at a viral source. Obviously the one source cause would be easier to investigate. This is the big unknown, dark pit of CFS/ME.
It absolutely blows my mind that people act like there is no known trigger. Sure, that might be the case for some people, but for many of us, there was. I was fine. I got EBV. I was never fine again.
This Saturday, May 1 the OMF partner scientists will be presenting their current work.
https://www.omf.ngo/sign-up-today-may-1-2021-omf-virtual-open-house/
Thanks – looking forward to it 🙂
There’s no active test result now but further effects can happen at any time, such as blindness. I haven’t read up on it for years.
Cort, though not to dismiss the interesting comments above since your comments: I did not try to access the video for the hearing. But I think it is distressing that our government continues to be hampered, probably at all levels and in all its functions, by outdated and dysfunction computer systems. I am not a techie, and have no solutions to offer, but trying to work with this galumph of a computer system is messing up things in all the departments.
I probably won’t stay up to hear Biden tonight, but it would seem to me that Infrastructure improvement should include a big and smart investment in improving our government’s computers!
As for Sharpe, I wish he’d find another interest. He’s done too much harm already.
Thanks Cort. Like you’ve seen, DR Fauci is a very touchy subject. Don’t ask anyone with “chronic” Lyme about him! As of Jan 2020 a group of Senators are still trying to get answers from him. In 2012 he made the statement that NIH would never entertain the possibility of “chronic” Lyme and acute Lyme was easily curable. https://www.lymedisease.org/senators-letter-fauci-niaid/
Thank you as always Cort for some excellent info, always appreciated.
I think Fauci is just acting out his part in the medical culture in this country which has no place for diseases that cannot be fit neatly into some specialty or another. Perhaps Fauci dismissed ME/CFS from his institute because he felt it was not caused by an specific infectious agent (no one infection causes ME/CFS), it is not an allergy (by the narrow definition of what allergists consider allergy) and did not seem to be an immunological disorder (again within a narrow definition of something that is primarily a disorder of the immune system) and therefore did not fit with the mission of his institute.
What the NIH needs is a whole new institute of holistic health where they study the body as a whole and hire some folks who are interested in integrating the knowledge from all the specialties and truly thinking outside the box.
It has also not helped that ME/CFS has historically had woefully inadequate patient and research organizations (and so has had very little visibility among government officials or the general public). Despite some dedicated individuals they have been underfunded and understaffed and not always had a clear direction. Just comparing ME/CFS with Parkinson’s disease (which also has about a million patients in the United States) Solve ME/CFS had gross receipts of just $2.5 million in 2018 compared to Parkinson’s Foundation which raised over $41 million in 2019. And that is just one of the Parkinson’s organizations, Michael J Fox’s foundation had gross receipts in 2019 of $246 Million! Hopefully between the new staff at Solve ME/CFS and ME Action we will begin to change the political and public perceptions of this disease and continue to build organizations that can compete financially and marketing wise with comparable diseases.
I remember a comment by Prof Ron Davis. It was at the Australian EMERGE conference I think. He commented that when he mentioned to MS researchers that perhaps there were multiple diseases involved in symptoms for MS patients, they just couldn’t get their heads around it. Their perspective was that all symptoms were a result of MS and nothing else. In other words, the overlapping symptoms (with ME/CFS) could not possibly be due to multiple diseases being at play, resulting in the combination of two (or more) sets of symptoms.
The multiple overlapping disease symptoms explanation seems to me to be a possibility for the symptoms presenting in long Covid patients. This reinforces the need for ME/CFS diagnostics. Long story short, the scaled up nanoneedle is the best way forward.
A diagnosis of long covid experiences its own difficulties, to say the least. However, it isn’t as complicated a diagnosis for post covid-19 test result positive patients. So I doubt there will be a lot of emphasis on novel biological diagnostics for post covid. I suspect the thinking will be (from the researcher perspective) “I’ve got as big a certified post covid 19 patient cohort as I can manage, many expressing certifiable symptoms (e.g. chest x-ray) – I’m not going to worry about biological diagnostics that don’t already exist”. In the short term at least.
Subsequently, I suspect, that for the millions of long covid patients that did not get a covid 19 positive test result, and don’t have easily diagnostically certifiable symptoms, they are not going to get any focus. I admit, this is because I am cynical about many researchers chasing low hanging fruit or “pet” interests. The whole notion of “what disease causes the biggest problem” will still not be in the driver’s seat. This is of course, a travesty, though a predictable one, though one that ME/CFS is used to.
So I see the risk being that long covid research funding will be directed into the symptoms that are covid 19 specific, identifiable by existing diagnostics. To me, this then excludes the ME/CFS like symptoms in long covid. Subsequently, I can imagine a period of time when promising ME/CFS research is going to have to be repeated on long covid patient cohorts, to get some points on the score board. Will that funding come from the long covid bucket? I worry about that given the seeming lack of public recognition of a connection between the two diseases. But then again, maybe I am being too cynical. The inevitable scientific outcome (i.e. a connection) seems obvious enough to me, and perhaps I grossly underestimate the power of curiosity and talented researchers.
Regardless, keeping money flowing directly into ME/CFS research seems as important as ever. And as likely as anything to provide benefit to ME/CFS and long covid patients.
Thanks for this much-needed article! If we don’t pressure Fauci and other health officials, who will?
The conspiracy theorists have their own agendas. All distract from real and important issues. Don’t let them deter you from writing about Fauci. Or dissuade you from getting out important truths about how our government has treated ME/CFS patients.
For me, seeing the legitimization, media, and funding that long-haulers have gotten versus what PWME have gotten, has been the hardest thing to deal with in my entire disease.
I would not hold out a lot of hope for anything Fauci is associated with – unfortunately. He changes his POV more often than the wind changes direction. He’s unpredictable, inconsistent and unreliable IMNHO. Perhaps it’s senility but he’s quite a disappointment.
Let’s hope that in the studies of long covid ME / CFS / POTS / FM will be used as a control group. What strikes me is that there are always few ME / CFS patients available in studies compared to the suggestion that there are millions of ME / CFS patients. Either one is unaware or there are no millions ME / CFS patients at all or they are too sick to participate. This interferes with a good selection of patients, which requires a good investigation. I would like to see subgroups of CFS patients. With a different classification in which the genesis plays the main role, both subjective and objective. But it is all complex. i still think ME / CFS is reversible.
One thing I’m concerned about conflating long-covid and ME/CFS is that long-covid may turn out to be an ME/CFS with a specific cause. For example, inflamed blood vessels resulting in BBB leaks and neuroinflammation. If something like that turned out to be the case, then those without such specific cause could again be at the danger of getting labeled “psychological”. Though the scientific community may be more circumspect than that, the media may run with it. It’s just something to watch out for.
That said, long-covid indeed has been a catalyst and I do hope it’ll pan out, not fizzle out as covid recedes after the vaccination. I guess we’ll have to stay vigilant and keep the fire burning.
This is a reminder of how ME/CFS has suffered from the fact that it doesn’t fit easily into a box. Research funding is granted by medical category: viral, neurological, etc., and our disease, so far, defies clear categorization. I think Fauci is excellent in his field, but he sticks with a narrow version of that field. Perhaps he had to: after all, his department was/is allergies and infectious diseases, and it’s not clear that ME/CFS fits into that category. His crime was tossing us out of NIAID without providing us some other landing spot.
I don’t mean to downplay that sin. As a 32-year ME/CFS sufferer, that kind of thinking has deprived me of decades of functional life, even as my health begins to worsen to intolerable levels. But it’s a sin in which there’s plenty of blame to go around, and Fauci is not the only offender.
It’s unfortunate that it took an epidemic of Long COVID to get his attention, but I’ll take it any way I can get it.
For those who want to watch Friday’s long-haul Covid hearing, here it is:
I haven’t watched, but would love to hear if this recording has a clear recording of the question(s) about ME/CFS and what was said.
https://www.pbs.org/newshour/health/watch-live-house-energy-and-commerce-committee-holds-hearing-on-effects-of-long-haul-covid-19
Great article. Very informative, thank you. I do hope you continue to write about Dr. Fauci and his position on ME/CFS and not allow personal opinions on Fauci to discourage you (my previous comment included, lol!).
I’m watching/listening to the committee hearing replay on YT now. On a lighter note, I can’t watch these virtual meetings without imagining the suits wearing boxers or pajama bottoms and slippers 😀
That you, A, for posting the long covid-19 hearings. I recall the remarks in the hearing about the possible stigma attached to long covid-19 especially when all tests show negative and the need for a name that reflects the seriousness of the condition. (CFS)?
I know that she’s controversial, but Dr. Judy Mikovits book, “Plague,” was just a wealth of knowledge about her long experience and intimate knowledge of CFS. It eliminated any doubts I ever had about credibility of the disease (after 30 years of it) and may do so for others who have credibility issues with family and friends.
Thanks Cort – great article. Can only hope that the ME/CFS research and hypotheses generated in the past 5 years or so is in the minds/knowledge base of those who will now seek funding from the $1.6 B pool and those who will be reviewing funding applications.
Over 3 decades among the lowest quality of life and functionality.
Two things can be true.
Fact, Fauci took the oxygen out of any biomedical research for myalgic encephalomyelitis and left millions for decades without correct care.
Please advocates, don’t be sabotaged by equating LC to ME. Science matters. Different epidemiologies and different mechanisms.
This has held up for decades, Ramsay said, “The failure to agree on a firm
diagnostic criteria has distorted
the database for epidemiological
and other research, thus denying
recognition of the unique
epidemiological pattern of
Myalgic Encephaloymyelitis.” Melvin Ramsay
Myalgic encephalomyelitis has evolved with criteria but still remains a neurological disease.
And Maureen Hanson cautions LC is not ME.