I was invited to talk about 'Long COVID' and share some lessons from
#MEcfs
by the Mass General/Harvard Med researchers calling themselves the "MGB Center for COVID Innovation Clinical Trial Tools & PHS Covid-19 Data Mart Working Group"
@MGH_RI
#LongCOVID
It's a good historical moment to reflect on the fact that M.S. was commonly called a "hysterical paralysis" conversion disorder until neuroimaging made it possible to see the lesions.
Multiple sclerosis, a progressive disease that affects 2.8 million people worldwide and for which there is no definitive cure, is likely caused by infection with the Epstein-Barr virus
Important new study from a very influential assay inventor. Circulating viral proteins (mostly spike) found in the blood of ~2/3 with long-COVID, but not found in people fully recovered from COVID. Consistent with- but not proving- ongoing viral reservoir.
Recruiting adults who had acute COVID19 and still have ongoing symptoms like trouble concentrating and abnormally strong fatigue. Must be in the Boston area, as the study is done in-person.
#LongCOVID
Some prelim data from my ongoing neuroinflammation study at Harvard Med/
@MGHMartinos
/
@MGH_RI
. Longer-term ICC-ME and more recent-onset 'Long-COVID,' both with increased [11C]PBR28 uptake in cingulate cortex vs. age and genotype-matched healthy controls.
@PolyBioRF
Thankful that an NIH R21 grant that we submitted last February was accepted for funding on the first round of review: a deep characterization of neutrophils in ME/CFS and PASC.
Mass. General Psychiatry held a mini-conference yesterday, and we presented some data from an undergraduate project showing that when anxiety and depression questionnaires are given to chronically ill people, the results can be misinterpreted.
Prediction: A major shift in medicine will happen over the next 15 years as Establishment Medicine starts to figure out that pathogens drive risk for many many forms of chronic illness.
New preprint of a
#longCOVID
study from us:
"Neuroinflammation in post-acute sequelae of COVID-19 (PASC) as assessed by [11C]PBR28 PET correlates with vascular disease measures"
It's a true scandal that this simple message is still not being communicated:
"The virus can be transmitted in an aerosol fashion - it can hang in the air like second-hand smoke - and so fans and cracked windows are nearly as important as masks and social distance."
Reminder that within 5 months after Pearl Harbor, the US was turning out 1500 tanks per month. There is no reason or excuse to not mass-produce free N95 masks and rapid tests for the public
@RyManMD
Lots of organic illnesses can have psych consequences, including anxiety, that are literally biological effects of the illness and not an expression of frustration and despair. Immune and stress systems are deeply co-evolved. (can be important for some chronically ill patients)
If there's one thing I could communicate to MDs, it would be that when there is "no clear cause," it is highly possible that it's because your testing is inadequate. I have no idea what makes some MDs seemingly believe they can test for everything happening in the human body.
All pain is real. Invalidating patient symptoms that have no clear cause is damaging. Sadly, most people with chronic pain have a story of being invalidated by a medical provider at some point. Itโs past time to change this.
@JAMANeuro
I really appreciate those MDs who understand that medical school did not teach them everything there is to know about the human body and brain, and who understand that clinical testing cannot capture everything happening in the human body and brain. Humility is important.
These symptoms are in the International Consensus Criteria definition of ME:
If we'd spent the last half century listening to
#MEcfs
patients instead of focusing on alleged shared personality traits or coping style, we'd be better prepared for
#LongCOVID
.
The Netherlands government allocated ~$30million USD to start a proper nationwide ME/cfs biomedical research program. I was asked to advise the steering committee of clinicians, scientists, and advocates:
"Model for a Dutch collaborative research pipeline"
Patients who've survived other serious acute infectious illnesses have had the same experience with long-term neurological symptoms, and have frankly been utterly failed by science & medicine. Maybe we can finally stop psychologizing these patients due to our own ignorance.
A longtime nurse instantly forgets what patients tell her. A lawyer can't recognize her own car. A neurologist can't remember the word "work" in a work meeting. Covid brain fog is debilitating, frightening and "very real."
@lieholepiehole
"Napalm," by Robert Neer. But if you want to learn more about the Korean War, I would recommend reading Prof. Bruce Cumings "The Korean War, A History" (includes the above history and much more). It's at most libraries, but here's a PDF copy:
This is the poster we presented at the recent
#IACFSME
conference. Very preliminary, but a promising proof-of-concept that EEG/ERP brainwave signature during cognitive testing was able to discriminate patients versus controls.
Neuroimaging legend Ken Kwong is on our ME/cfs post-exertional-malaise study team. He scans with us on weekends, and has even paid for some of the scans with his own development funds. He approached me, not the other way around, because he wants to help figure this condition out.
#TBT
to the time when the Center's Ken Kwong discovered the key to noninvasive
#fMRI
! Twenty-eight years ago today, Kwong performed the experiment that opened the door to widespread functional
#neuroimaging
with the technique. Read about it here:
#MGH
This potential association has been clear for a while to anyone paying attention but it is really nice to see it so forcefully evidenced. Over the next few years we will find out that EBV can drive several chronic conditions, depending on where it is and what it's doing.
22 years of neurological symptoms without ever even getting an MRI, another 8 years before an obvious follow-up question gets asked. Largely because
#MEcfs
is inappropriately psychologized, this is the rule not the exception, and it's just so frustrating.
@microbeminded2
@MBVanElzakker
Fascinating. Many excellent points made. 30 yrs sick. Took me 22 years to get an MRI.. no remarkable findings. At 30 years a SPECT scan multiple abnormal findings with evidence of tbi. I agree all
#pwME
should get brain scans. Drs need guidance on which ones & what to look for.
@MGHMartinos
@MGH_RI
@polybioRF
As a disclaimer, say it with me: "Just because inflammation is seen in a condition, does not mean that inflammation is the core cause of that condition."
If anyone wants to support my neuroimaging work, the best and most direct way is to do so here:
I've fundraised every dime of all the ME/CFS work I've ever done. Please don't donate if you are on disability or struggling.
#HarvardMECFS
There is sex-based variance in many immune responses. This may be part of sex-based differences in the prevalence of many diseases- many of which are stigmatized and psychologized. I presented a poster about this at the first
#SEXXandIMMUNITY
conference
It is a searing national scandal that schools are re-opening without publicly-manufactured HEPA filters in every classroom. They should be in every Post Office and library, etc. Utter leadership failure. Again: 5 months after Pearl Harbor the US was making 1500 tanks per month.
The White House said months ago that it expects 100 million COVID infections this fall/winter. Biden *still* hasnโt secured the funding to prepare for this surge. A timeline:
I appreciate the chance to tell the "NeuroImmune Axis"
#CSNeuroImmune
conference in CA about why
#MEcfs
should be added to the list of neuroimmune-linked illnesses that this field regularly studies.
#MillionsMissing
@CellSymposia
Important preprint just out from a large NIH and U-Maryland based team. The title make the point clearly: "SARS-CoV-2 Infection and Persistence Throughout the Human Body and Brain."
As would be expected, this includes mild and even asymptomatic cases.
We are recruiting for studies on an ongoing basis. If you write to our superstar research coordinator Deena and tell her you're interested, she can get you involved. Both people with
#LongCOVID
and people with pre-COVID
#MEcfs
. Also seeking healthy COVID-recovered family members.
I'll keep saying it until I see that it has penetrated the ME/CFS field: You cannot always learn what's happening in the central nervous system by looking in peripheral blood.
the take away is:
1. a localized, divergent CNS immune response can occur distinct from the periphery
2. When treating systemic diseases like SARS-CoV-2, we need to consider organ specific treatments (especially for the brain!)
fin/n
My from-quarantine teletalk to the
#CMRC2020
conference, describing some myalgic encephalomyelitis/chronic fatigue syndrome (
#MEcfs
) history, then recent research into cerebrovascular reactivity & enlarged perivascular spaces
Please excuse the raspy voice
I wonder if he was asked, "Senator, have you been under a lot of stress lately? Are you sure these aren't just the normal aches & pains of normal aging? Do you suppose you might be elaborating symptoms because your spouse is nicer to you when you're sick?"
Wow - Sen. Tim Kaine has long covid.
โI tell people it feels like all my nerves have had like five cups of coffee." It's a โ24/7โ tingling sensation, he says.
Introduces legislation to study it:
"Dr. Nath, some researchers have been claiming that everything happening in the body should be detectable in blood if assays are sensitive enough. Does this fit with your experience?"
One thing I'd like
#medtwitter
to understand about the putative relationship between
#LongCovid
&
#MEcfs
is that we *know* that 'LongCovid' starts with
#COVID19
. Several outbreaks of
#ME
were never properly investigated before being hijacked by psychiatry.
Not enough is being done to understand the incidence,, time course and underpinnings of
#LongCovid
, the common, lingering and often debilitating symptoms of
#COVID19
. This essay helps awareness and why preventing spread is paramount
by
@henryimiller
Neuroinflammation in the Brain of Patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
Great to see Nakatomi, Kuratsune & Watanabe continuing/ replicating their work on this, looking forward to reading the technical details of what they did.
The college students I teach enter classrooms with signs saying "please clean surfaces when you leave" - the fact that
#COVIDisAirborne
is still not communicated. When I take a few minutes to explain, crack a window, and pass around a box of N95s, they all mask up.
Our recent review of potential biological mechanisms behind
#LongCOVID
. The complex, challenging reality is that it's unlikely that every patient suffering long-term consequences will have the exact same underlying pathophysiology.
@PolyBioRF
New Research: Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms
#microbiology
This important figure is related to why so many people misinterpreted the Ann. Internal Med long COVID study: Long COVID is not a single thing, so studies recruiting anyone with any ongoing symptoms or signs will struggle to pull signal from noise.
Recruiting Boston-area individuals with pre-COVID
#MEcfs
for a brain scan study, measuring a type of neuroinflammation. Contact DSAADI
@mgh
.harvard.edu to learn more and find out if you qualify.
Giving a talk on ME/CFS at MGH on Wednesday; planning to do a lot of context for why the diagnosis is misperceived the way it is. Please post images from media portrayals - "white person with head on laptop = CFS" and that sort of thing. Example here:
Retraction: Music therapy for people living with long-term consequences of a viral infection.
I hope learning about 'long-COVID' makes clear how badly medicine currently patronizes the chronically ill.
BIG NEWS on this
#OMFScienceWednesday
: We are proud to announce OMF has funded $1.8 million to establish a new ME/CFS Collaborative Research Center at Harvard and will expand the Stanford Data Center for the Severely Ill Patients (SIPS) Study. More info:
This kind of thing happens all the time at good conferences: I had never met Daniel before and didn't know about his work. I learned new things from him, and found out he works 1 building over. We chatted, and I think he can help me solve a problem we've been having. Good stuff!
Thankful this team of top researchers pulled together to review the current state of evidence for this central question, and to describe of the kind of research program needed to actually address the constraints & challenges imposed by biology:
@polyBioRF
Significant numbers of people show long-term physical damage to heart and lung after acute COVID-19 resolves. 78% showed heart tissue problems in one study. This is part of why I think we should be cautious with the assumption that "long-haul COVID" is the same thing as ME/cfs.
@jenbrea
Helped a kid diagnosed with CFS get better; discovered that his appendix was filled with herpesvirus. Recovered since having it removed. Imagine telling him to jump into a circle labeled "STOP" whenever his symptoms flared. Absolute trash.
Yes, this seems like bad advice. What is it that makes people think that everything from infectious illness to cancer can be fixed with a plucky attitude and some exercise? It feels like an expression of the just-world fallacy, which itself feels like false belief in meritocracy?
Glad to see this crucial study now published in Nature, the most prestigious scientific journal in the world. It made quite an impact among researchers working in the space when the data were first shared nearly 7 months ago, recorded video here:
COVID NEWS: Autopsies of people who died from COVID19 show that the virus spread throughout the body and remained in tissue for months. The study broadened scientistsโ perspectives on where SARS-CoV-2 could cause infection and persist, including the brain.
Feeling genuinely optimistic & enthusiastic about the 'official' launch of a long-term goal: PolyBio Research Foundation.
We have an entire research program mapped out, including new collaborators who want to dig in and start finding answers.
#PolyBio
Asking people with an ME or CFS diagnosis to participant in this online study:
The study is about questionnaires used in research, and will give you the chance to say whether those questionnaires are clear or suitable.
Tony Komaroff just emailed me this really interesting new paper Sensory (afferent) vagus nerve detects inflammation and triggers the feeling of sickness, & the motor (efferent) branch creates anti-inflammatory signals. This paper describes that mechanism.
We could - and should - have mass production and free distribution of n95 masks, free at-home antigen testing, genetic sequencing of a high percentage of positive tests, open-source licensing for global vaccine production, and public education about aerosol transmission.
Within 5 months of Pearl Harbor, the US was producing 1500 tanks per month. Don't ever forget - it's a choice that we lack masks & PPE for vulnerable people & workers, and that we are on the cusp of having to triage who deserves to be kept alive by one of the limited ventilators.
This is a must-listen, Dr Fasano articulates many of the points we've been drilling on for years, including
-"mild" disease can have severe long-term consequences
-"autoimmunity" is usually driven by infection
-apex pathogens can drive pre-existing microbiome to further dysbiosis
New
@polybioRF
podcast: I interviewed Dr. Alessio Fasano: Chief of the Division of Pediatric Gastroenterology & Nutrition at MassGeneral Hospital for Children. Watch on Youtube () or listen on an App like Spotify ()
Worth noting that many survivors of acute Ebola experience a 'Post (sic) Ebola Syndrome' that often includes neurological problems, pain, and vision problems like photophobia
The
#Ebola
virus can persist and relapse in the brains of animals that survived infections and received monoclonal antibodies, show new findings from
#USAMRIID
that stress the importance of long-term follow-up for human survivors.
#InfectiousDisease
I've decided to change tactics. From now on I'm just going to agree with the story that "studying chronic fatigue syndrome is super duper extra hard" because it makes me seem like a badass.
1/2 Tomorrow on
#r4today
: Another scientist withdraws from research on Chronic Fatigue Syndrome citing the "toxic" debate about the condition online and relentless harrassment
Infectious disease doc Donna Felsenstein MD introducing the clinical picture, and giving some history & context. As someone who has worked with
#pwME
for 38 years, she was moved to tears to see a big group of clinicians and scientists finally starting to dig in.
#HarvardMECFS
I'm glad this is being reported, but reading it you'd never know that scores of scientists & clinicians - not just "patient activists" - have been arguing for years that evidence for graded exercise therapy is much too flawed to justify its recommendation.
Installing the newest 7Tesla strength ultrahigh field MRI scanner at
@MGHMartinos
. This will provide very high resolution images and allow more accurate characterization of metabolites like lactate. (Junkyard magnets used to pick up old cars use a field strength of about 1Tesla.)
Not everything happening in the body is detectable in blood. If you're assaying blood or other body fluids but not finding a microorganism you logically should find, it might be in tissue.
Shown by
@VogelsChantal
&
@NathanGrubaugh
, the mother had detectable levels of
#SARSCoV2
in her saliva and urine, but not in her blood. However, the level of virus in the placenta was sky high. How did the virus get to the placenta? (3/n)
I'm teaching Abnormal Psychology at Tufts U this semester; one of my students just wrote on the
@TuftsAdmissions
blog about a lecture that resonated with her:
Willing to bet that this patient was seen by at least a half-dozen arrogant, ignorant male MDs obsessed with "anxiety" and (ironically) "hysteria" before this image was taken
Imagine the level of suffering, we have known about this for so long and Endo is so common but the paucity of research done on Endometriosis is just shameful
I appreciate this research group so very much. But I'd ask everyone in the field: Please don't use rhetoric like this: "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is arguably the last major disease we know almost nothing about." It just isn't true. We know a lot.
Potential biomarker! This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. We are proceeding to design new devices that will make a clear distinction between patients and healthy controls.
@OpenMedF
We're raising funds to pay for
#MEcfs
brain scanning in a dual MR-PET machine using the [11C]-PBR28 ligand. This will let us look for glial activation (neuroinflammation) in brainstem. These scans cost $5,980 each (incl. indirects).
This is why I tell patients: accurately & honestly describe your symptoms & medical history, but don't tell doctors that you have "ME" or "CFS." If you tell them that, they may
drop their investigative instinct and say "Mystery illness. Go back to bed, wait for more research."
@MBVanElzakker
There was anAustralian ME brain study a few years ago, who had 2 of their subjects excluded from their cohort (out of 25) : one was found to have a brain tumor, and the other one was missing their cerebellum. Sick for several years too.
There's been a lot of confusion so I want to clear it up: OMF has never given me a dime of support, and they have not supported any of my research at all. Not even when I have asked, including for a $7000 microscope.
Today, we roll our eyes at some of last decade's assumptions (autism is caused by cold mothering!). In 50 years, people will be astounded by today's passive, unthinking assumption of sterility in 'autoimmune' and chronic illness.
It drives me crazy when
#inflammation
is connected to a symptom/condition and the immediate response is to โblameโ the human
#immune
response alone...when there are 100,000+ pathobionts in human tissue/blood/gut capable of driving a very broad range of inflammatory processes
@sapinker
@Kdcfsme
The Dark Side of Powerful People Having Access To Media: Deeply entrenched establishment figures hold a politically sacred theory & are able to get wide and disingenuous press coverage when reality seems inconsistent with it.
Instead of using media to apologize for, mitigate and undo the harmful effects of psychologizing this illness, once again media is used to center the complaints of a dozen psychologists who receive mean tweets from disabled people.
Scientists researching treatments for chronic fatigue syndrome say they face online abuse and harassment. Itโs a โnew normal,โ and some say they are leaving the field because of it
The amyloid-beta (Aฮฒ) peptide of Alzheimer's disease has been evolutionarily preserved for ~400million years: not a trait of something with no function that only drives disease. Aฮฒ functions as an antimicrobial peptide to trap & lyse pathogens that have made it into the brain.
Risk for Developing
#Alzheimer
โs Disease Increases by 50-80% In Older Adults Who Caught
#COVID19
Within a Year
According to a study of more than 6 million patients 65 and older.
via
@neurosciencenew
@icyblue57
@chrislhayes
Our society is so profoundly imperialist & racist that people can literally think 100,000s of dead Iraqi civilians isn't as bad as rudeness.
One of the many surreal things about the pandemic is that South Africa will be "blamed" as the source of this variant - when in reality they found it because they are simply doing what WE should be doing too, which is fully sequencing lots of positive tests.
Today, I'm thankful for the South African scientists
Who are working on the Nu variant with great expertise, speed, and transparency
Their openness makes the world safer
Thank you ๐ฟ๐ฆ
Viruses *always* hijack host cells - that's what they do. They aren't "alive" and need a source for raw materials and energy. And when they are inside brain cells they are both difficult to completely clear and difficult to detect by peripheral blood.
That's over 143ยฐF.
Just like COVID, it's not going away without revolutionary change, just like COVID it will disproportionately kill and harm the elderly and sick and poor, and just like COVID those deaths will be minimized as a social-Darwinist inevitability.
Many people probably don't know this: I have to pay my own salary with grants or fundraising. It's part of why so many scientists give up and go into private industry.
In September, the US signed a sole-source contract to buy $13.3Billion of nuclear missiles.
These are choices.
Requiring researchers to spend a great deal of time fundraising their own salaries through grants is an utter waste of time, money, and effort. Pay them a salary. They can apply for grants if they need to buy stuff or want to hire people.
One of the most important talks of
#MECFSatNIH19
. This team understands that pathogens often manipulate or commandeer mitochondria for their own benefit.
(This does not mean "all patients have one undiscovered virus that wrecks mitochondria function.")
Live from Day 2 of the
@NIH
Conf: Bhupesh Prusty from
@Uni_WUE
presents โPathogenic alterations of mitochondrial dynamics: A working model for ME/CFS.โ Watch:
#MECFSatNIH19
Totally agree with everything in this thread. I'd add that I don't believe vulnerable people - or those defending them - are obligated to be polite to people who are causing harm, and that people in positions of power should learn to absorb and think about the cause of criticism.
With reports of suicide, there's always the risk of copycat suicides. That's why they are generally not reported on the news. I understand that people with ME/cfs are suffering - sometimes badly - but implore you all to hang on. Reach out if you're thinking about suicide, please.
Our lab is currently hiring a clinical research coordinator (CRC). Areas of research include 'Long-COVID' and ME/cfs. Apply through this page:
This is an ideal position for the ~2yrs between undergraduate and pre-neuro medical or graduate school.
Happy Halloween from the
#VagabondLab
! We dressed as a research paper: Neurotropic viruses HHV-6 and HHV-3 (zoster) crowding a nervous vagus nerve
#VNIH
Autoimmunity is a feminist issue, hormone resistance is a racial justice issue, neuroinflammation is a poverty issue, PTSD is an issue of violent imperialism and misogyny. Science and medicine are not independent from the societies in which they occur.
This was such a great event. Sincere thanks to
@Invest_in_ME
for inviting me. I made so many connections, shared so many ideas, and expanded, confirmed, & changed my thinking in many ways. I can't wait to get started on the Collaborative Research Center when I get back to Boston.
@matthewjdowd
@DLGahres
Be sure to spread this 'civility' message to police that spray down peaceful Indigenous protesters with water in the Dakota freeze, & police who fire tear gas into anti-brutality protests. Prioritization of civility is a mark of privilege. Many people have to prioritize survival.
@MECFSNews
@MTackCVS
@RobinNDurham
@jenbrea
@WKCosmo
Franz Alexander is considered the ยfounder of psychosomatic medicine; his "Holy Seven Psychosomatic Diseases" were
Hypertension
Thyrotoxicosis
Bronchial asthma
Rheumatoid arthritis
Peptic Ulcer
Ulcerative colitis
Neurodermitis
So... his accuracy rate didn't turn out super well.