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"CDC Expert Commentary: Treating Long-COVID Brain Fog With ME/CFS Guidelines" [1]
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Date: 2023-04-05
We’re approaching the fair-use limit for blockquoting from an source article, and regrettably —and oddly— this collaborative item doesn’t seem to have been published anywhere else to allow further blockquoting from there. ...at least that I could find in this google search. (It did pull up a fair amount of related material that may be educational for anyone not aware of the LongCovid-ME/CFS connection.) If any readers do find our source article elsewhere, please comment the link in the thread, and I’ll gladly edit it into this dk post with attribution to the finder.
Briefly, the five things for healthcare professionals to know, and worth our knowing as well, are:
[1] Cognitive symptoms —a.k.a. “brain fog”— occur in about 20% of people who’ve had COVID-19, no matter how severely or mildly, and can persist indefinitely.
[2] The American Academy of Physical Medicine & Rehabilitation recently published a consensus of guidance for assessing and treating Covid brainfog, as a resource for clinicians with those patients [The first blue box below ] and some of the tests may be findable via the internet — ■ Montreal Cognitive Assessment (MoCA) ■ Mini-Mental State Examination (MMSE) ■ Mini-Cog ■ Short Test of Mental Status — but AAPM&R emphasizes that the tests don’t always detect abnormalities, and normal results don’t necessarily mean the patient is not suffering impairment.
[3] Best findings in ME/CFS cognitive care can help guide treatment for long COVID–related cognitive symptoms,” e.g., a discovery process by which patients find their individual limits for physical and mental activity, and then develop self-pacing, using energy conservation, memory aids, etc., in order to mitigate flare-ups of symptoms that mutually aggravate. But a key hazard is the Push-And-Crash cycle: when patients experience some symptom reduction, they push themselves to try to achieve more normally, over-reach and “crash” with severely worsened symptoms, rest/rein in, start to feel a little better, do too much again, and around and around.
The urge/temptation to try to “be normal” can feel irresistible...
[4] Each patient is unique, and their own symptoms will vary in intensity at any given time, so clinicians should adopt an individualized, patient-centered approach, practice transparency, and work closely with them, including on issues of quality of life, taking into account existing barriers such as economic stability, literacy, social stressors, and access to quality care and supportive resources. Clinicians should ensure equitability of treatment resources, especially for patients from marginalized communities.
[5] Be very cautious about risks and benefits before prescribing or recommending drugs or/and nutritional supplements. For example, “’Though some [FDA]–approved supplements or vitamins have been used to alleviate long-COVID symptoms by supporting the immune system and reducing inflammation, there is limited evidence to support their effectiveness”; and drugs typically prescribed for ADHD-type symptoms incur risks for triggering push-and-crash cycles. (Other popular types of drugs such as sleep meds or antidepressants may cause hazardous over-sedation or create yet more memory problems. And so on.)
But note: if these 5 points suggest that all ME/CFS patients —and those with similar ailments such as fibromyalgia, or Lyme disease, etc., — get wonderful care... the reality is faaaar more often the opposite: extremely few have the resources to meet the costs for healthcare of this quality, and the extensive healthworker time and thought it involves. Researchers and specialized clinics simply have found and verified some things that work, if only patients could have them… true of many human afflictions, yes?
The RESOURCES section of the article lists:
Multi-Disciplinary Collaborative Consensus Guidance Statement LINK CDC: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) LINK CDC: Long COVID or Post-COVID Conditions LINK CDC: Post-COVID Conditions: Information for Healthcare Providers LINK
and the article’s references are:
Ceban F, Ling S, Lui LMW, et al. Fatigue and cognitive impairment in Post-COVID-19 syndrome: a systematic review and meta-analysis. Brain Behav Immun. 2022;101:93-135. SOURCE Rass V, Beer R, Schiefecker AJ, et al. Neurological outcomes 1 year after COVID-19 diagnosis: a prospective longitudinal cohort study. Eur J Neurol. 2022;29:1685-1696. SOURCE Fine, JS, Ambrose, AF, Didehbani, N, et al. Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of cognitive symptoms in patients with post-acute sequelae of SARS-CoV-2 infection (PASC). PM R. 2022;14:96-111. SOURCE Chevinsky JR, Coleman King SM, Bonacci RA, et al. CDC Case Challenge: a woman with fatigue, palpitations, and headache. Medscape CDC Expert Commentary. September 2, 2021. SOURCE Centers for Disease Control and Prevention, National Center for Emerging and Zoonotic Infectious Diseases, Division of High-Consequence Pathogens and Pathology. Treatment of ME/CFS. Reviewed January 28, 2021. SOURCE
Folks who’ve followed the funding may be aware that some very major government grants have recently been put into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research since roughly the midpoint (up to now) of the Covid pandemic, as similarities so powerfully emerged, notably involving inflammation issues, and also overlapping symptoms of Dysautonomia, Fibromyalgia, perhaps Functional Neurological Disorders, and more. Commenters please do add other diagnoses you’ve seen hypothesized as within the post-acute infectious viral category.
Some related DK posts:
November 14, 2022 by Mark Hennon Covid ALERT! 10 LARGE Problems:
..9. In addition to the one-million-funerals American death count, Long Covid has been exposed as a painfully debilitating disease of mind and body, including severe fatigue and “brain fog.” It has affected between 22 and 43 million Americans, and 7 to 14 million are expected to suffer for years, descending into poverty and overwhelming physical and mental distress from “disabling long covid” (DLC) that withers them for who knows how long ... it could be for life. 10. Financial damage to the full Disabling Long Covid (DLC) U.S. population is estimated at almost $400 billion as of January 2022. That is only the short-term financial carnage to American victims of disabling long covid, not including pain and suffering, loss of self-esteem, and frequent prolonged symptoms of persistent fatigue, brain fog, and depleted energy. [ Probably a heap of depression, too.]...
October 19, 2022 A mass disabling event: The effects of long COVID don’t stop at the individual by Matthew Braunginn for Daily Kos Emerging Fellows
..The exact number of people with long COVID will fluctuate. Most people will fully recover over time, but many will not. What do we know? The exact percentage is hard to pin down because this is a new phenomenon; according to the Solve Long Covid Initiative, an enterprise out of Solve M.E., 10-30% of people with a COVID infection will develop long COVID. (Solve M.E. is a non-profit organization working to deepen research and treatment for post-infection diseases. M.E. is short for Myalgic encephalomyelitis, better known as chronic fatigue syndrome [CFS].)...
September 19, 2022 by Eccaba Millions Missing day of action: take a moment to help ME/CFS folks and long haulers
August 6, 2022 by mettle fatigue Conference: Increasing Data Link ME/CFS, Long COVID, and Dysautonomia
January 26, 2022 by Mark Sumner (dk staff) Sequela: Long after a pandemic is 'over,' new and terrible symptoms can appear
April 11, 2021 by mettle fatigue Lancet: 1/3 of COVID Survivors Will Likely Suffer Prolonged Neurological or Mental Disorders
by mettle fatigue March 29, 2021 by mettle fatigue NIH: Long-COVID Patients Meet Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
..This debilitating disease causes pain, cognitive difficulties, severe fatigue that does not improve with rest, and an increase in symptoms following physical or mental exertion (called post-exertional malaise). The disease can have widespread effects throughout the body including in the immune, metabolic, cardiovascular, gastrointestinal, and nervous systems. Moreover, for the past several months similar symptoms have been reported in people who were infected with COVID-19. Although many people fully recover from the novel coronavirus, there is a subset of individuals who continue to experience severe and life-changing symptoms on a long-term basis, a condition that has been referred to as “Long COVID syndrome.” The knowledge gained through research on Long COVID syndrome may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases. For more, please read NINDS Deputy Director Dr. Nina Schor’s post on The Schor Line... This step-up follows the creation of four dedicated research centers by a large NIH funding increase for ME/CFS research in 2017. In a 2-day April 19 2019 conference reporting on progress, Avindra “Avi” Nath, MD, NINDS clinical director, described a comprehensive ongoing ME/CFS intramural study he's been leading since 2016. He's now also overseeing two long-COVID studies, one of which has a similar protocol to the ME/CFS study and will include individuals who are still experiencing long-term symptoms following confirmed cases of COVID-19. The aim is to screen about 1300 patients. Several task forces are now examining all of these data together….
August 25, 2020 by mettle fatigue Conference: links betw 'Long COVID', 'chronic fatigue syndrome' & other energy-deficit ills.
Weeks and months of symptom persistence among post-COVID-19 patients testing negative has prompted research into mechanisms underlying myalgic encephalomyelitis / chronic fatigue syndrome and other chronic post-viral illnesses. ...In two recent reports — one published in the Journal of the American Medical Association in July and another published in Morbidity and Mortality Weekly Report this month — chronic fatigue was listed as the top [persisting] symptom... Although [cough, chest pain, and dyspnea] appear specific to SARS-CoV-2 … [other symptoms reiterate] the diagnostic criteria for ME/CFS, which is defined by substantial, profound fatigue for at least 6 months, post-exertional malaise, unrefreshing sleep, and one or both of orthostatic intolerance and/or cognitive impairment. Although the etiology of ME/CFS is unclear, the condition commonly arises following a viral illness.,,, source: Medscape (a professional site
free to the public with registration) On August 21, the International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME)’s annual conference met via Zoom, opening with this topic. IACFS/ME co-vice-president Lily Chu, MD remarked that much of the research on ME/CFS may provide insight for this COVID-19 issue, present COVID-19 findings may lluminate how CF/ME arises and develops (cf. wikipedia article section on etiology of cfs), and indicate whether a patient with persistent COVID-19 symptoms might be progressing to ME/CFS. (Another shared symptom is persistent pain.)…...
Possibly also of interest:
Reuters - October 18, 2022 Addiction drug shows promise lifting long COVID brain fog, fatigue
Lauren Nichols, a 34-year-old logistics expert for the U.S. Department of Transportation in Boston, has been suffering from impaired thinking and focus, fatigue, seizures, headache and pain since her COVID-19 infection in the spring of 2020. Last June, her doctor suggested low doses of naltrexone, a generic drug typically used to treat alcohol and opioid addiction. After more than two years of living in "a thick, foggy cloud," she said, "I can actually think clearly...."
National Library of Medicine - July 3, 2022 Safety and efficacy of low dose naltrexone in a long covid cohort; an interventional pre-post study — From the Abstract:
CONCLUSIONS [Low-dose Naltrexone] is safe in patients with [Post COVID-19 Syndrome] and may improve well-being and reduce symptomatology in this cohort. Randomised control trials are needed to further explore this.
Additional links are welcome in the comments.
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