Tag: long Covid

Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study

Abstract:

Objective: Characterization of the clinical features of patients with persistent symptoms after mild to moderate COVID-19 infection and exploration of factors associated with the development of Chronic COVID-19 Syndrome (CCS). Methods: Setting: Charite Fatigue Center with clinical immunologists and rheumatologist, neurologists and cardiologists at Charite University hospital.

Participants: 42 patients who presented with persistent moderate to severe fatigue six months following a mostly mild SARS-CoV-2 infection at the Charite Fatigue Center from July to November 2020.

Main outcome measures: The primary outcomes were clinical and paraclinical data and meeting diagnostic criteria for Chronic Fatigue Syndrome (ME/CFS). Relevant neurological and cardiopulmonary morbidity was excluded.

Results: The median age was 36.5, range 22-62, 29 patients were female and 13 male. At six months post acute COVID-19 all patients had fatigue (Chalder Fatigue Score median 25 of 33, range 14-32), the most frequent other symptoms were post exertional malaise (n=41), cognitive symptoms (n=40), headache (n=38), and muscle pain (n=35). Most patients were moderately to severely impaired in daily live with a median Bell disability score of 50 (range 15-90) of 100 (healthy) and Short Form 36 (SF36) physical function score of 63 (range 15-80) of 100. 19 of 42 patients fulfilled the 2003 Canadian Consensus Criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). These patients reported more fatigue in the Chalder Fatigue Score (p=0.006), more stress intolerance (p=0.042) and more frequent and longer post exertional malaise (PEM) (p= 0.003), and hypersensitivity to noise (p=0.029), light (p=0.0143) and temperature (0.024) compared to patients not meeting ME/CFS criteria. Handgrip force was diminished in most patients compared to healthy control values, and lower in CCS/CFS compared to non-CFS CCS (Fmax1 p=0.085, Fmax2, p=0.050, Fmean1 p=0.043, Fmean2 p=0.034, mean of 10 repeat handgrips, 29 female patients). Mannose-binding lectin (MBL) deficiency was observed frequently (22% of all patients) and elevated IL-8 levels were found in 43% of patients.

Conclusions: Chronic COVID-19 Syndrome at months 6 is a multisymptomatic frequently debilitating disease fulfilling diagnostic criteria of ME/CFS in about half of the patients in our study. Research in mechanisms and clinical trials are urgently needed.

Source: Claudia Kedor, Helma Freitag, Lil-Antonia Meyer-Arndt, Kirsten Wittke, thomas Zoller, Fridolin Steinbeis, Milan Haffke, Rudolf Gordon, Bettina Heidecker, Hans Dieter Volk, Carsten Skurk, Friedemann Paul, Judith Bellmann-Strobl, Carmen Scheibenbogen. Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study. medRxiv 2021.02.06.21249256; doi: https://doi.org/10.1101/2021.02.06.21249256 https://www.medrxiv.org/content/10.1101/2021.02.06.21249256v1

Will COVID-19 Lead to ME/CFS?

INTRODUCTION:

“Recovering” from COVID-19 does not guarantee a return to a person’s usual state of health. For one thing, some people with multi-system injury—particularly to the brain, heart and kidneys—may develop permanent dysfunction of those organs.
In addition, a more subtle form of chronic illness may develop. For some people with COVID-19, even those who are mildly affected at first, the ensuing weeks and months of “recovery” bring a surprise and a betrayal: they do not return to full health. Although nucleic acid tests no longer detect the virus, people still suffer from ongoing symptoms. They call themselves “long haulers”, and the condition is being called “long COVID”.

Source: Anthony L. Komaroff and Lucinda Bateman. Will COVID-19 Lead to ME/CFS? Front. Med. | doi: 10.3389/fmed.2020.606824 https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full (Full text)

COVID-19 and chronic fatigue syndrome: Is the worst yet to come?

Abstract:

There has been concern about possible long-term sequelae resembling myalgic encephalomyelitis/chronic fatigue syndrome in COVID-19 patients. Clarifying the mechanisms underlying such a “post-COVID-19 fatigue syndrome” is essential for the development of preventive and early treatment methods for this syndrome.

In the present paper, by integrating insights pertaining to the glymphatic system and the nasal cerebrospinal fluid outflow pathway with findings in patients with chronic fatigue syndrome, idiopathic intracranial hypertension, and COVID-19, I provide a coherent conceptual framework for understanding the pathophysiology of post-COVID-19 fatigue syndrome. According to this hypothesis, this syndrome may result from damage to olfactory sensory neurons, causing reduced outflow of cerebrospinal fluid through the cribriform plate, and further leading to congestion of the glymphatic system with subsequent toxic build-up within the central nervous system. I further postulate that patients with post-COVID-19 fatigue syndrome may benefit from cerebrospinal fluid drainage by restoring glymphatic transport and waste removal from the brain.

Obviously, further research is required to provide further evidence for the presence of this post-viral syndrome, and to provide additional insight regarding the relative contribution of the glymphatic-lymphatic system to it. Other mechanisms may also be involved. If confirmed, the glymphatic-lymphatic system could represent a target in combating post-COVID-19 fatigue syndrome. Moreover, further research in this area could also provide new insights into the understanding of chronic fatigue syndrome.

Source: Wostyn P. COVID-19 and chronic fatigue syndrome: Is the worst yet to come? Med Hypotheses. 2021 Jan 2;146:110469. doi: 10.1016/j.mehy.2020.110469. Epub ahead of print. PMID: 33401106. https://pubmed.ncbi.nlm.nih.gov/33401106/

Could Cognitive Behavioural Therapy Be an Effective Treatment for Long COVID and Post COVID-19 Fatigue Syndrome? Lessons from the Qure Study for Q-Fever Fatigue Syndrome

Abstract:

An increasing number of young and previously fit and healthy people who did not require hospitalisation continue to have symptoms months after mild cases of COVID-19. Rehabilitation clinics are already offering cognitive behavioural therapy (CBT) as an effective treatment for long COVID and post-COVID-19 fatigue syndrome based on the claims that it is effective for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)-the most common post-infectious syndrome-as no study into the efficacy of CBT for post-COVID-19 fatigue syndrome has been published. Re-analyses of these studies, however, showed that CBT did not lead to objective improvements in heterogeneous groups of ME/CFS patients, nor did it restore the ability to work.

The group of patients with long COVID and post-COVID-19 fatigue syndrome, on the other hand, is homogeneous. We therefore analysed the Dutch Qure study, as it studied the efficacy of CBT in a homogeneous group of patients who developed Q-fever fatigue syndrome-which affects up to 30% of patients-after the largest reported outbreak of Q-fever, to see if CBT might potentially be an effective treatment for long-haulers after COVID-19 infection.

Our reanalysis found that the Qure study suffered from many serious methodological problems, which included relying on one subjective primary outcome in a study without a control group for the non-blinded CBT treatment group, using a post hoc definition of improvement, waiting 2 years before publishing their objective actometer results and ignoring the null effect of said results. Moreover, only 10% of participants achieved a clinically meaningful subjective improvement in fatigue as a result of CBT according to the study’s own figures.

Consequently, CBT has no subjective clinically meaningful effect in nine out of every ten patients that are treated with it. Additionally, the subjective improvement in fatigue was not matched by an improvement in disability, even though the disability was fatigue related according to the researchers. On top of this, CBT did not lead to an objective improvement in physical performance. Therefore, it cannot be said that CBT is an effective treatment for Q-fever fatigue syndrome either. It seems therefore unlikely that CBT will reduce disability or lead to objective improvement in long COVID or in post-COVID-19 fatigue syndrome.

Source: Vink M, Vink-Niese A. Could Cognitive Behavioural Therapy Be an Effective Treatment for Long COVID and Post COVID-19 Fatigue Syndrome? Lessons from the Qure Study for Q-Fever Fatigue Syndrome. Healthcare (Basel). 2020 Dec 11;8(4):E552. doi: 10.3390/healthcare8040552. PMID: 33322316. https://www.mdpi.com/2227-9032/8/4/552 (Full text)

Chronic Disease Stakeholders Join SOLVE M.E. in Push for Federally Funded Research into Long COVID

Press Release: LOS ANGELES, Dec. 4, 2020 /PRNewswire/ — Twenty leading chronic disease stakeholders joined the Solve ME/CFS Initiative (Solve M.E.) in authoring a powerful letter urging Congress to fund millions of dollars in new National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for long-term COVID-19 (Long COVID) survivors. To view a copy of the letter, click here.

With more than 13.9 million coronavirus infections in the U.S., the letter emphasizes the importance of research into chronic conditions known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), among others. Authors of the letter include: Solve ME/CFS Initiative, National Health Council, National Organization for Women, #MEAction, Open Medicine Foundation, Dysautonomia International, The Mast Cell Disease Society, Body Politic, COVID-19 Longhauler Advocacy Project, Hadassah, American Medical Women’s Association, Nurse Practitioners in Women’s Health, HealthyWomen, Bateman-Horne Center, Institute for Neuro-immune Medicine, Pandora.Org, Sex and Gender Health Collaborative, Minnesota ME/CFS Alliance, The Shane Foundation, Massachusetts ME/CFS & FM Association, & The American Dysautonomia Institute.

Letter serves as a warning about the increasing number of COVID-19 patients experiencing post-viral complications.

“Preliminary evidence suggests that nearly five million Americans will experience Long COVID regardless of infection severity, which will likely result in a post-viral chronic fatigue crisis,” said Oved Amitay, CEO of Solve M.E. “Solve M.E. and our stakeholder allies call on Congress to act now to support new NIH and CDC funding for research into the health needs of this rapidly growing patient population.”

The letter cites warnings from leading public health officials — including Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases — about the estimated 3.2 million Americans that could be temporarily or permanently disabled by Long COVID symptoms. Indeed, studies show that 66 percent of patients with post-viral acute respiratory distress syndrome report experiencing severe fatigue after 12 months, consistent with Dr. Fauci’s analysis that Long COVID symptoms are “highly suggestive” of ME/CFS. These alarming statistics underscore the urgent need for funding, research, diagnostics, and treatment into Long COVID.

Chronic disease experts unanimously agree that in order to adequately address Long COVID complications, Congress must act immediately and appropriate the following funds:

$110 million for the establishment of Long COVID Collaborative Research Centers and Centers of Excellence;
$60 million toward expanding post-viral disease research;
$3.5 million for the development and issuance of medical guidance about Long COVID to medical providers and front-line health professionals; and
$300,000 toward convening experts and stakeholders to establish data harmonization.

“We strongly encourage these funds be allocated to the NIH and CDC by way of the congressional appropriations process or a future COVID-19 relief package so this critically important research can begin immediately,” said Amitay.

About Solve ME/CFS Initiative

Solve M.E. is the leading, national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. Solve M.E. works to accelerate the discovery of safe and effective treatments and strives for an aggressive expansion of funding for research that will lead to a cure.

To learn more, visit our website at www.solveCFS.org

Media Inquiries Only Contact
Emily Taylor
Director of Advocacy and Communications
714-296-1661
ETaylor@solvecfs.org