COVID news & more, 5/11/24
Like last week nationally, SARS-CoV-2 is at “MINIMAL” levels across most of the U.S. Oklahoma and Hawaii have moderate levels of COVID in wastewater at this time. Palo Alto and San Jose are still at “MEDIUM” wastewater levels. Only about 1 in 205 people is currently infected with COVID in the United States as a whole. As of April 27 when last reported, hospitalizations were the lowest of the pandemic. England and Germany are seeing an uptick in wastewater COVID levels which is probably related to FLiRT variants like KP.2.
National SARS-CoV-2 data from Sara Anne Willette through May 7, 2024: https://iowacovid19tracker.org/
KP.2 is pushing out JN.1 and the JN.1 descendants and now represents 28.2% of cases in the U.S. When looking at national wastewater SCAN reports, we see that although SARS-CoV-2 levels are “LOW” nationally, Influenza A is noted as “HIGH”. Since flu season is over, this uptick may represent Avian Flu H5N1 which is currently infecting some dairy cattle in several states. H5N1 is an Influenza A virus and it could be running off and ending up in wastewater measurements.
Acute COVID infections
In Yorkshire, England, rheumatologist Dr. McGonagle noticed an uptick of a very rare autoimmune disease called MDA5, autoantibody associated dermatomyositis, that was being seen in people who may have had a COVID infection. The patients had severe lung scarring, often with interstitial lung disease (ILD), often some had rheumatologic symptoms such as rashes, arthritis, muscle pain and the fatality rate was very high. Dr. McGonagle contacted Dr. Ghosh of UCSD and her team to see if they could use their BoNE (Boolean Network Explorer) to evaluate the data. Together, they discovered an entirely new COVID-related syndrome which they named MIP-C. MIP-C stands for MDA5-autoimmunity and Interstitial Pneumonitis Contemporaneous with COVID-19 and is pronounced "mipsy". Patients who showed the highest level of MDA5 response also showed high levels of interleukin-15.
Paxlovid has been used to help high risk outpatients reduce risks of hospitalization and death from COVID infection. A new retrospective cohort study of almost 39,000 people shows that for patients hospitalized for COVID, treatment with Paxlovid was associated with 38% lower inpatient death, 30% less congestive heart failure, 37% less atrial fibrillation, 29% decrease in coronary artery disease, 32% lower chronic pulmonary disease, 29% less acute respiratory distress syndrome (ARDS), 83% lower risk of interstitial lung disease, and 43% lower end-stage renal disease.
Although Paxlovid is indicated for high risk people, several studies have demonstrated that Paxlovid does not improve time to symptom resolution or hospitalization or death from COVID for average risk people. A randomized, placebo-controlled trial of outpatient treatment of SARS-CoV-2 in average risk people with a BMI of 25+ shows that Metformin significantly reduced SARS-CoV-2 viral load. The standard risk population studied were 30 years or older, had a BMI of 25+ and were not hospitalized for COVID infection. Metformin was found to reduce SARS-CoV-2 viral load by 3.6-fold by day 10. Those who took Metformin were more likely to have no detectable viral load by day 5 and day 10 of infection (odds ratio, 0.72). “Metformin reduced the odds of hospitalization or death through 28 days by 58%; emergency department visits, hospitalizations, and death through 14 days by 42%; and Long COVID through 10 months by 42%.” In addition, viral rebound was almost halved with Metformin (3.3%) versus placebo (5.9%).
Figure 1: Effect of metformin versus placebo on viral load over time
From https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciae159/7660393
The WHO system for tracking viral changes, variants of interest (VOIs) and variants of concern (VOCs) were discussed in a new article in Nature magazine. The article also discusses the unpredictability of viral evolution.
Pediatrics
There is a misconception that children do not get Long COVID. An eye-opening new study presented at the Pediatric Academic Societies meeting shows that children, teens and young adults can get Long COVID symptoms that are specific to their age group. Long COVID was found even in babies. Infants with prior COVID infection had general symptoms of poor appetite, sleep difficulties, and cough compared to non-infected babies. Pre-schoolers had those symptoms plus gastrointestinal symptoms and stuffy nose.
"School-age children, adolescents, and young adults with a history of a COVID-19 infection had many prolonged symptoms in common, including low energy; tiring after walking; headaches; body, muscle, and joint pains; lightheadedness or dizziness; trouble concentrating or focusing; and gastrointestinal symptoms, like nausea and vomiting.” School-age children were also noted to have new phobias and often refused to go to school. Teens had more panic attacks and claustrophobia than teens without a history of COVID infection. In addition to low energy, joint pain and trouble focusing, young adults suffered from chest pain and palpitations as well.
We need to realize that COVID infections are not benign in children. This comprehensive review of Long COVID in children and young adults was published in Pediatrics in February 2024.
From https://publications.aap.org/pediatrics/article/153/3/e2023062570/196606/Postacute-Sequelae-of-SARS-CoV-2-in-Children
A study from China shows that grandchildren have a positive influence on their grandparents. Teaching college students in China about the benefits of COVID vaccination boosters for older adults resulted in an increased number of their grandparents getting a COVID booster.
Long COVID
The “Unite to Fight” conference on Long COVID and on ME/CFS will take place next week on May 15 and May 16. There are many amazing speakers scheduled. Note: Conference times listed are in the Central Europe Time Zone (9 hours ahead of San Francisco).
This week, I included some educational resources for health care providers regarding Long COVID assessment and treatments in my notes below. I also included a link to a consensus article written by Mayo Clinic on diagnosis and management of ME/CFS that includes which blood tests to order and what treatments are available. One treatment for cognitive impairment or brain fog is low dose Naltrexone. A new small study shows how Naltrexone may be working. Like in ME/CFS, people with Long COVID also have Transient Receptor Potential Melastatin 3 (TRPM3) ion channel dysfunction in their Natural Killer (NK) immune cells. Naltrexone treatment restored TRPM3 function in NK cells in ME/CFS and in Long COVID.
The NIH will be starting four new trials for Long COVID. RECOVER-SLEEP will test modafinil, solriamfetol and melatonin. RECOVER-ENERGIZE will test exercise and pacing in Long COVID. People on Twitter asked why the NIH would study exercise therapy in people with Long COVID because exercise can cause muscle necrosis in these patients and can be very dangerous to people with Post-Exertional Malaise (PEM). The NIH posted a news release that "All participants in RECOVER-ENERGIZE trials will be screened for PEM. Participants who are identified as having PEM, via a validated PEM questionnaire, will not be included in this trial."
Countries around the world are finding that Long COVID is impacting inflation and their economies because many young people in their 20s, 30s, and 40s are disabled from Long COVID and can no longer work. Talking about therapies for Long COVID and associated diseases, Dr. Svetlana Blitshteyn tweeted this week that “it's cheaper for society to make these therapies [IVIG, SCIG, PLEX] affordable and accessible than to have millions of young chronically-ill and disabled people being out of work.”
The Harvard Business Review put out a new guide for managers on Long COVID and potential workplace accommodations. This week, I found this excellent resource on how to get disability for people with chronic illnesses such as ME/CFS and Long COVID.
In other news, Eric Topol wrote an interesting article entitled When Medical A.I. is Lifesaving about a randomized trial in real world medical practice using AI to evaluate cardiac arrhythmias. It showed that the AI-ECG alert led to reduced mortality.
NutraSweet (neotame) was found to damage important bacteria in the gut microbiome.
Compared to the general population, women physicians are more likely to experience miscarriage, infertility and pregnancy complications, although often they are unaware of these risks. The authors of a new study recommend family planning education and support for women doctors.
Non-COVID Infectious Disease news
The government announced that they will pay dairy farmers to “protect workers and cover costs incurred treating and testing sick cows [with H5N1 avian flu]…Producers may also receive payments for lost milk production on farms with confirmed bird flu cases.” Virologist and Immunologist Rick Bright tweeted that if there is a large amount of H5N1 virus in milk, the pasteurization process may need to be adjusted to inactivate it.
RFK Jr reported “severe brain fog” and “trouble retrieving words” from a brain-eating worm and from mercury poisoning caused by eating fish with high mercury levels. Three people got drug-resistant Mycobacterium abscessus infections from stem-cell injections in Mexico. Europe is seeing a 10-fold increase in whooping cough (pertussis) this year. Vaccination protects against whooping cough.
Have a good rest of your weekend,
Ruth Ann Crystal MD
COVID news notes:
US Variant tracker: https://covid.cdc.gov/covid-data-tracker/#variant-proportions
KP.2 is 28%. JN.1 and assorted other JN.1 subvariants make up the rest.
Variants around the world: https://outbreak.info/
World wastewater maps (reflects COVID cases): https://www.arcgis.com/apps/dashboards/c778145ea5bb4daeb58d31afee389082
CDC COVID data tracker: https://covid.cdc.gov/covid-data-tracker/index.html#datatracker-home
CDC COVID Hospitalizations (blue) and Emergency Room (orange) visits tracker: https://covid.cdc.gov/covid-data-tracker/index.html#trends_weeklyhospitaladmissions_7dayeddiagnosed_00
Data up until 4/27/24 which was two weeks ago
Walgreens positivity rate: https://www.walgreens.com/businesssolutions/covid-19-index.jsp
US Wastewater Monitoring:
CDC wastewater reporting: https://www.cdc.gov/nwss/rv/COVID19-nationaltrend.html
CDC wastewater map: https://www.cdc.gov/nwss/rv/COVID19-currentlevels.html
Biobot: https://biobot.io/data/
National SARS-CoV-2 data from Sara Anne Willette: https://iowacovid19tracker.org/
Data through May 7, 2024
Oklahoma and Hawaii are at moderate level of SARS-CoV-2 in wastewater
Wastewater SCAN: https://data.wastewaterscan.org/
Reminder, H5N1 would be picked up as Influenza A if it washed into wastewater.
Oakland CA
Los Angeles, CA
Las Vegas, NV seeing a little uptick
Sewer Coronavirus Alert Network (SCAN) project by Stanford University:
Santa Clara County wastewater: https://covid19.sccgov.org/dashboard-wastewater
As of May 10, 2024
Marin county: https://coronavirus.marinhhs.org/surveillance
JP Weiland: https://twitter.com/JPWeiland
https://twitter.com/JPWeiland/status/1787963647819403291
5/7/24
https://twitter.com/RajlabN/status/1787973533835919521
https://twitter.com/JPWeiland/status/1789066558876045412
UK, wave going up in England
Michael Hoerger modeling: http://pmc19.com/data/, https://twitter.com/michael_hoerger
Acute COVID infections, General COVID info
5/8/24 Nature Medicine (WHO): An updated framework for SARS-CoV-2 variants reflects the unpredictability of viral evolution https://buff.ly/3y7RWqE
5/8/24 Eurekalert: An entirely new COVID-related syndrome https://buff.ly/3WC6KZ2
In Yorkshire, England, rheumatologist Dr. McGonagle found that a very rare autoimmune disease called MDA5 — autoantibody associated dermatomyositis (DM) was being seen in people who may have had a COVID infection. The patients had severe lung scarring, often with interstitial lung disease (ILD) and some had rheumatologic symptoms such as rashes, arthritis, muscle pain and there was a high fatality rate. Dr. McGonagle contacted Dr. Ghosh of UCSD and her team to see if they could use their BoNE (Boolean Network Explorer) to evaluate the data. Together, they discovered an entirely new syndrome which they named MIP-C.
MIP-C (MDA5-autoimmunity and Interstitial Pneumonitis Contemporaneous with COVID-19), pronounced "mipsy". Patients who showed the highest level of MDA5 response also showed high levels of interleukin-15.
5/8/24 Lancet eBio medicine: MDA5-autoimmunity and interstitial pneumonitis contemporaneous with the COVID-19 pandemic (MIP-C) https://buff.ly/3UxBzeF
Retrospective observational study of a surge in MDA5 autoimmunity related to COVID circulation in Yorkshire, UK.
“MDA5+ dermatomyositis (DM) is a rare and intractable known pre-pandemic entity which is characterized by a high mortality due to rapid-progressive interstitial lung disease (ILD; in ∼50–100% of the cases). MDA5 is a key sensor for viral RNA.”
The data science group from UCSD looked at the similarities and differences between MIP-C and MDA5+ disease.
MIP-C occurred when there was high community SARS-CoV2 circulation. MIP-C had less ILD (∼40%) and more Raynaud's and cutaneous manifestations than typical MDA5+ disease, but bioinformatic analysis showed that these are shared immunophenotypes that can cause ILD.
From: https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(24)00171-3/fulltext
5/3/24 CIDRAP: Common diabetes drug Metformin lowers SARS-CoV-2 levels, clinical trial finds https://buff.ly/3QAKDhA
Study of Metformin for acute COVID infection for a standard risk population that were 30 years or older, had a BMI of 25+ and were not hospitalized for COVID infection.
Paxlovid did not improve time to symptom resolution or hospitalization or death for average risk people in several studies.
However, Metformin reduced SARS-CoV-2 viral load by 3.6-fold by day 10 in this study. People in this study who took Metformin were more likely to have no detectable viral load by day 5 and day 10 of infection (odds ratio, 0.72).
“Metformin reduced the odds of hospitalization or death through 28 days by 58%; emergency department visits, hospitalizations, and death through 14 days by 42%; and Long COVID through 10 months by 42%.”
Viral rebound was lower with Metformin (3.3%) than placebo (5.9%).
The study:
5/1/24 Clinical Infectious Diseases: Favorable Antiviral Effect of Metformin on Severe Acute Respiratory Syndrome Coronavirus 2 Viral Load in a Randomized, Placebo-Controlled Clinical Trial https://buff.ly/3USQNv5
"In this randomized, placebo-controlled trial of outpatient treatment of SARS-CoV-2, metformin significantly reduced SARS-CoV-2 viral load, which may explain the clinical benefits in this trial."
5/3/24 Lancet ID: Association of nirmatrelvir–ritonavir (Paxlovid) with post-acute sequelae and mortality in patients admitted to hospital with COVID-19: a retrospective cohort study https://buff.ly/3WQT7W3
n = 15,242 and n = 23,756 controls, retrospective study.
Patients hospitalized with COVID infection in 2022 to 2023 in Hong Kong received Paxlovid.
Paxlovid was associated with 38% lower inpatient death, 30% less congestive heart failure, 37% less atrial fibrillation, 29% decrease in coronary artery disease, 32% lower chronic pulmonary disease, 29% less acute respiratory distress syndrome (ARDS), 83% lower risk of interstitial lung disease, and 43% lower end-stage renal disease.
There was no difference in deep vein thrombosis, seizure, anxiety, post-traumatic stress disorder, acute kidney injury, and pancreatitis.
Social and Advocacy
https://twitter.com/dysclinic/status/1788588723849793856
“it's cheaper for society to make these therapies [IVIG, SCIG, PLEX] affordable and accessible than to have millions of young chronically-ill and disabled people being out of work.” -Svetlana Blitshteyn MD
How To Get On Disability
https://howtogeton.wordpress.com/
https://howtogeton.wordpress.com/sample-residual-functional-capacity-forms-rfc-forms/
5/7/24 Harvard Business Review: Long Covid at Work: A Manager’s Guide https://buff.ly/3WzJfj8
10 Common Symptoms of Long Covid and Associated Chronic Illnesses and potential workplace accommodations for each.
Pediatrics
5/3/24 Eurekalert at PAS: Study: Long COVID symptoms in children vary by age https://buff.ly/4bhXUnO
A study of children ages birth to young adult aged 25 years shows that for all age groups, children and young adults who had a prior COVID infection had post-acute COVID symptoms.
"An excess symptom burden between infected and uninfected was detected across multiple body systems, even in infancy. Symptoms with the highest excess burden differed with age: infants exhibited primarily general and respiratory (e.g., cough) symptoms; preschoolers had those plus GI and ENT (e.g., stuffy nose) symptoms; school-age children mostly exhibited general and ENT symptoms; and adolescents/young adults had loss of taste/smell and pain."
"Young children between birth and five years old with a prior COVID-19 infection were more likely to have general symptoms, including poor appetite, trouble sleeping, and fussiness, and prolonged respiratory symptoms like stuffy nose and cough, compared to young children without a known prior COVID-19 infection."
"school-age children, adolescents, and young adults with a history of a COVID-19 infection had many prolonged symptoms in common, including low energy; tiring after walking; headaches; body, muscle, and joint pains; lightheadedness or dizziness; trouble concentrating or focusing; and gastrointestinal symptoms, like nausea and vomiting.
Compared to children without a history of COVID infection, school-age children had more prolonged phobias or fears of specific things and school refusal.
Teens had more claustrophobia and panic attacks than teens without a history of COVID infection. Adolescents and young adults also had changes in smell or taste more commonly. Chest pain and palpitations were more common in young adults.
2/2024 Pediatrics: Comprehensive Review of Long COVID in Children and Young Adults https://publications.aap.org/pediatrics/article/153/3/e2023062570/196606/Postacute-Sequelae-of-SARS-CoV-2-in-Children
Vaccines
5/9/24 Nature Aging: Influence of grandchildren on COVID-19 vaccination uptake among older adults in China: a parallel-group, cluster-randomized controlled trial https://buff.ly/3UAOkoJ
Teaching college students in China about the benefits of COVID vaccination boosters for older adults resulted in an increased number of their grandparents getting a COVID booster.
Antiviral treatments
5/8/24 Nature: Computationally restoring the potency of a clinical antibody against Omicron https://buff.ly/3wrBHEx
SARS-CoV-2 viral escape of both prophylactic and therapeutic monoclonal antibodies (mAbs).
The authors recommend using a computational approach to making new mAbs that are more potent and would work against the latest variants as well as prior variants and future variants. The would use an artificial intelligence-backed platform w/ supercomputing to redesign & restore the effectiveness of antibodies whose ability to fight viruses has been compromised by viral evolution.
Long COVID
Massive under reporting of Long COVID in UK EHRs.
5/7/24 Lancet: The long COVID evidence gap in England https://buff.ly/3y4OPje
‘We found a striking discrepancy between occurrence of long COVID as perceived and reported by participants in longitudinal population-based studies and evidence recorded in electronic health records’
14% of people self-reported Long COVID, but only 5.4% were identified as having Long COVID-related codes in EHRs.
Unite to Fight conference next week on Long COVID and on ME/CFS
Wed May 15 and Thurs May 16, Central Europe Time Zone (9 hours ahead of San Francisco)
https://unitetofight2024.world/program/
5/2/24 Frontiers Immunology (Australia): Investigation into the restoration of TRPM3 ion channel activity in post-COVID-19 condition: a potential pharmacotherapeutic target https://buff.ly/3WvTbKm
n = 9 and n = 9
Like in ME/CFS, people with Long COVID also have Transient Receptor Potential Melastatin 3 (TRPM3) ion channel dysfunction in Natural Killer immune cells.
Naltrexone restored TRPM3 function in NK cells in ME/CFS and in Long COVID.
5/8/24 NIH News: NIH to open Long COVID clinical trials to study sleep disturbances, exercise intolerance, and post exertional malaise https://buff.ly/3wtd3mW
NIH RECOVER trials
RECOVER-SLEEP to test modafinil and solriamfetol and melatonin
RECOVER-ENERGIZE to test exercise and pacing.
"All participants in RECOVER-ENERGIZE trials will be screened for PEM (Post-Exertional Malaise). Participants who are identified as having PEM, via a validated PEM questionnaire, will not be included in this trial."
5/8/24
https://twitter.com/NeurologistMom/status/1788382228143366407
Education for Healthcare Providers on Long COVID
AskMayoExpert COVID-19 Navigator https://askmayoexpert.mayoclinic.org/navigator/covid-19
Post-COVID Syndrome (Long COVID)
Symptoms https://askmayoexpert.mayoclinic.org/topic/clinical-answers/gnt-20511319/sec-20511329
Initial Workup https://askmayoexpert.mayoclinic.org/topic/clinical-answers/gnt-20511319/sec-20511331
Persistent COVID infection https://askmayoexpert.mayoclinic.org/topic/clinical-answers/gnt-20511319/sec-20514630
Treatment Referrals within the Mayo Clinic system https://askmayoexpert.mayoclinic.org/topic/clinical-answers/gnt-20511319/sec-20511334
Treatment https://askmayoexpert.mayoclinic.org/search/section-search?kmSearchTerm=myalgic
Mayo Clinic: LC Treatment
Paced breathing
Mindfulness training
Paced activity
Biofeedback
Acupuncture
Low-dose naltrexone (4.5 mg daily; may be taken in the morning if vivid dreams or insomnia occur)
Requires compounding
Not FDA approved
Typically well-tolerated (If concern for medication sensitivity, start at 1.5 mg and titrate to 4.5 mg)
Pyridostigmine (30 to 60 mg daily)
Guanfacine 1 mg extended release taken at 2 pm daily
Low-dose aripiprazole (0.5 to 2 mg daily)
Dietary supplements
Fisetin 500 mg twice daily
Coenzyme Q10 200 mg twice daily
Fish oil 4,000 mg daily (combined with aspirin 81 mg daily for activation)
Acyl L-carnitine 500 mg daily
L-arginine 1,500 mg twice daily
Vitamin C 500 mg twice daily
Referral for wellness coaching, physical therapy, and/or occupational therapy biofeedback at the Healthy Living Program (Mayo Clinic Rochester) (Epic: REF1531)
In patients whose symptoms worsen significantly after physical, cognitive, or emotional exertion, consider a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome.
Non-opioid pain medications (particularly those used to treat fibromyalgia)
Amitriptyline (Elavil), initiated at 10 mg daily and titrated to effect
Duloxetine (Cymbalta), initiated at 20 mg daily and titrated to effect
Pregabalin (Lyrica), initiated at 25 mg daily and titrated to effect
Gabapentin (Neurontin, Gralise, Horizant), initiated at 300 mg nightly and titrated to effect
Low-dose naltrexone 4.5 mg may help with pain as well as fatigue (If concern for medication sensitivity, start at 1.5 mg and titrate to 4.5 mg)
Magnesium (may be helpful for muscle spasms; sometimes associated with diarrhea)
Paced activity
Physical and/or occupational therapy referral targeting major symptom areas (Epic: EZ PMR)
Pain rehabilitation referral if pain persists >3 months (Epic: REF461)
Mindfulness training
Paced activity
Respiratory muscle training (eg, BreatherFit)
Pulmonary rehabilitation
Inhaled corticosteroids (if positive methacholine challenge)
Impaired short-term memory or poor concentration (brain fog)
Mindfulness training
Speech therapy referral (Epic: SLP2) for assessment and rehabilitation of cognition (including attention, memory, problem solving, and executive function)
Guanfacine 1 mg extended release taken at 2 pm daily
Low-dose naltrexone (4.5 mg daily; may be taken in the morning if vivid dreams or insomnia occur)
See: COVID-19: Brain fog
Orthostatic intolerance and/or tachycardia
Postural orthostatic tachycardia syndrome (POTS) management can be helpful in patients with POTS or orthostatic intolerance not meeting criteria for POTS.
Drinking 2 to 3 liters of rehydration solution or dietary sodium for a goal of 4 g daily at a minimum is recommended if there are no medical contraindications. Compression garments at the abdomen, thighs, and pelvis can also be helpful. Compression stockings (40 mm Hg pressure) are recommended in addition to lower-extremity strengthening exercises.
Orthostatic intolerance and/or tachycardia is typically hyperadrenergic when isolated, or hyperadrenergic or neuropathic when in the presence of severe fatigue.
Consider Autonomic Neurology referral for diagnosis and management of POTS
Consider propranolol (initiated at 10 mg three times daily and titrated to effect) in patients who have high heart rates without low blood pressure
Consider low-dose pyridostigmine (initiated at 30 mg daily and titrated to 60 mg three times daily or to effect) in patients who have symptomatic orthostatic tolerance without excessive heart rates or low blood pressure
Consider midodrine for non-hyperadrenergic POTS (initiated at 2.5 mg 2 to 3 times daily and increased to 5 mg 3 times daily if symptoms do not improve)
Consider fludrocortisone for hypovolemic POTS (initiated at 0.1 mg daily and increased to 0.2 mg daily after 2 weeks if symptoms do not improve; use should not be continued beyond a few months)
See: POTS (adult) and POTS (adolescent)
Anosmia typically resolves on its own, though olfactory training is helpful for some patients.
For chest wall pain, consider:
Topical analgesics (eg, lidocaine)
Diclofenac (eg, Flector, Cambia)
Oral NSAIDs
Amitriptyline
Patients who work may benefit from a temporarily reduced work schedule accompanied by frequent follow-up with a local care team. Work activity may be increased under guidance of the local care team.
See also: COVID-19: Postinfection return to exercise
Reviewers: Michael Mueller, MD, Ravindra Ganesh, MBBS, MD, Greg Vanichkachorn, MD, MPH, Bala Munipalli, MD, Stephanie Grach, MD, MS, Heather Huffman, RN, Sara Seegmiller, RN, Ryan Hurt, MD, PhD, Liz Gilman, MD Reviewed May 21, 2023
MEAction & Mayo ME/CFS Algorithm Is Live! https://buff.ly/3JTNmPA
If you have access to AskMayoExpert, you can follow this algorithm on ME/CFS.
50% to 70% of people with Long COVID meet criteria for ME/CFS
ME/CFS evaluation and treatment
10/1/2023 Mayo Clinic Proceedings: Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
The Centers for Disease Control and Prevention recommend the 2015 Institute of Medicine/National Academy of Medicine criteria to diagnose ME/CFS. ( Figure 1 ).
Post-Exertional Malaise (PEM)
Other chronic complex diseases commonly diagnosed in people with ME/CFS include hypermobile Ehlers-Danlos syndrome; disorders of autonomic function, often manifesting as postural orthostatic tachycardia syndrome; and mast cell activation syndrome.
Lab tests used by Mayo Clinic for ME/CFS evaluation
ME/CFS Treatments by symptom
https://twitter.com/KLebedevaite/status/1787757187902615559
Thread: Opening a new Long COVID, ME/CFS, Dysautonomia clinic in Lithuania and asking for educational references
People suggested:
https://batemanhornecenter.org/providers/top-resources/
NASA 10 minute lean test (instead of tilt table test) https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-LeanTest-Instructions-April-2018.pdf
https://www.ehlers-danlos.com/eds-echo-healthcare-professionals/
2012 MYALGIC ENCEPHALOMYELITIS – Adult & Paediatric: International Consensus Primer for Medical Practitioners
PERSONALIZED CLINICAL ASSESSMENT & DIAGNOSTIC WORKSHEET FOR ME, page 10
Appendix 1: Myalgic Encephalomyelitis: INTERNATIONAL CONSENSUS CRITERIA (ICC) Short Form Adult and Pediatric ● Clinical and Research, Page 25
Mayo Clinic ME/CFS paper (same paper as above)
10/1/2023 Mayo Clinic Proceedings: Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
Resources for Medical Providers Caring for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://mecfscliniciancoalition.org/
https://mecfscliniciancoalition.org/clinical-management/
https://mecfscliniciancoalition.org/resources/
Translation to European languages
Disability letters, Accommodations (work, school, university)
Open Medicine Foundation- centers that study ME/CFS
Bateman Horne, Stanford, Harvard, Uppsala, Montreal, Melbourne
5/4/24 Harry Boby on YouTube: How to Fund Long Covid Research? | Lessons From Cystic Fibrosis https://buff.ly/4boUiQw
Venture Philanthropy
AI:
4/29/24 Eric Topol MD: When Medical A.I. is Lifesaving https://buff.ly/4bc38RL
“Most medical #AI studies are not in the real world; they are in silico, retrospective, non-randomized and contrived (e.g. scenarios, patient actors).
This one is randomized, in real world medical practice, and showed AI can save lives”
Original article in Nature: AI-enabled electrocardiography alert intervention and all-cause mortality: a pragmatic RCT https://buff.ly/44pJUFF
Other News:
5/9/24 CIDRAP: Three drug-resistant infections of Mycobacterium abscessus in US tied to stem-cell injections in Mexico https://buff.ly/4duVF1H
H5N1 Avian Flu
5/8/24 https://twitter.com/RickABright/status/1788319868917362849
5/10/24 NY Times: Biden Administration to Pay Dairy Farmers for Bird Flu Protective Measures https://buff.ly/4bA5UAi
"Under the program, dairy farms would receive up to $28,000 to protect workers and cover costs incurred treating and testing sick cows."
Producers may also receive payments for lost milk production on farms with confirmed bird flu cases.”
Who had brain worms and mercury poisoning on their bingo card?
5/8/24 NY Times: R.F.K. Jr. Says Doctors Found a Dead Worm in His Brain https://buff.ly/3ycg7V4
He states that he had a worm that ate part of his brain AND mercury poisoning from eating too much fish. Both can cause memory loss.
"Dr. Gardner said it was possible a worm would cause memory loss. However, severe memory loss is more often associated with another health scare Mr. Kennedy said he had at the time: mercury poisoning.
…he said that he had experienced “severe brain fog” and had trouble retrieving words."
"He also said in the deposition and the interview that he had contracted hepatitis C through intravenous drug use in his youth. He said he had been treated and had no lingering effects from the infection."
5/8/24 CIDRAP: ECDC warns of surge in pertussis (Whooping Cough) cases in Europe https://buff.ly/4ajZcNA
10-fold increase in whooping cough in Europe this year.
5/8/24 Healio: Family planning support, education needed for women physicians https://buff.ly/3UxX52V
Women physicians are more likely to experience miscarriage, infertility and pregnancy complications compared with the general population, yet only 8% of survey respondents received education on the risks of delaying pregnancy.
4/24/24 Eurekalert: Artificial sweetener has potential to damage gut https://buff.ly/3JSDe9R
New research finds Neotame (NutraSweet) can cause healthy gut bacteria to become diseased.