News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Annals of Internal Medicine is a high impact US-based general medical journal

https://www.acpjournals.org/doi/full/10.7326/M21-1043
Special Articles
30 March 2021
Toward Understanding COVID-19 Recovery: National Institutes of Health Workshop on Postacute COVID-19
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Andrea M. Lerner, MD
,
Daphne A. Robinson, PhD
,
Linda Yang, PhD
,
Carolyn F. Williams, PhD, MPH
,
Lori M. Newman, MD
,
Joseph J. Breen, PhD
,
Robert W. Eisinger, PhD
,
Johanna S. Schneider, PhD
,
Adaora A. Adimora, MD, MPH*
,
Emily J. Erbelding, MD, MPH*
Author, Article and Disclosure Information
https://doi.org/10.7326/M21-1043



Abstract
Over the past year, the SARS-CoV-2 pandemic has swept the globe, resulting in an enormous worldwide burden of infection and mortality. However, the additional toll resulting from long-term consequences of the pandemic has yet to be tallied. Heterogeneous disease manifestations and syndromes are now recognized among some persons after their initial recovery from SARS-CoV-2 infection, representing in the broadest sense a failure to return to a baseline state of health after acute SARS-CoV-2 infection. On 3 to 4 December 2020, the National Institute of Allergy and Infectious Diseases, in collaboration with other Institutes and Centers of the National Institutes of Health, convened a virtual workshop to summarize existing knowledge on postacute COVID-19 and to identify key knowledge gaps regarding this condition.
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The workshop also highlighted the need to recognize the full clinical spectrum of postacute COVID-19, as well as the need to characterize the phenotypes of disease that are beginning to emerge and identify risk factors for their development. Weakness, cognitive dysfunction, and psychological disorders after hospitalization for severe COVID-19 may overlap with the well-described post–intensive care syndrome seen with other critical illnesses (14). Persistent fatigue, cognitive dysfunction, and other multisystemic symptoms after COVID-19 in persons who did not require hospitalization for their acute infection may characterize another distinct phenotype. Autonomic dysfunction and postural tachycardia may represent yet another. Comparisons have been drawn between postacute sequelae of COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome because many symptoms overlap. Care must be taken not to conflate the 2 conditions because neither is completely understood. Lessons learned from several decades of studying myalgic encephalomyelitis/chronic fatigue syndrome may be applied to studies of postacute COVID-19—and in fact, better understanding of both conditions may be mutually beneficial to patients in both groups.
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Key Gap: A Need to Understand Pathophysiology
The pathophysiology that drives the diversity of postacute COVID-19 manifestations is poorly understood. Elucidating the pathophysiology not only will be critical for developing treatment of postacute COVID-19 but may also improve our understanding of the sequelae of other viral infections (for example, influenza, chikungunya, Ebola, and Epstein–Barr viruses) or conditions where viral infection may be suspected but not confirmed (such as some cases of myalgic encephalomyelitis/chronic fatigue syndrome). Workshop speakers and participants discussed potential disease mechanisms underlying postacute COVID-19.
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This is the only reason something may actually be done in the end. Rarely is "a taste of their own medicine" meant literally but nothing beats ending up on the wrong side of institutional bullying to see the light.


Strain on NHS as tens of thousands of staff suffer long Covid

https://www.theguardian.com/society/2021/apr/03/nhs-feels-strain-tens-thousands-staff-long-covid

Intense pressures on the already overstretched NHS are being exacerbated by the tens of thousands of health staff who are sick with long Covid, doctors and hospital bosses say.

At least 122,000 NHS personnel have the condition, the Office for National Statistics disclosed in a detailed report that showed 1.1 million people in the UK were affected by the condition. That is more than any other occupational group and ahead of teachers, of whom 114,000 have it.
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Patient care is being hit because many of those struggling with long Covid are only able to work part-time, are too unwell to perform their usual duties, or often need time off because they are in pain, exhausted or have “brain fog”.
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Dr Sarah Burns and Dr Sue Warren, the GPs who set up the group, said recently in the BMJ that doctors incapacitated due to long Covid feel “intense feelings of failure and grief for leaving colleagues with increased workloads and not personally contributing to the ‘fight against Covid’. This self-stigmatisation and shame is common among sick doctors.”
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Institutional bullying stems from the culture in which it festers.
A spokesperson said: “Our network of long Covid clinics is already supporting healthcare staff who are experiencing ongoing coronavirus symptoms, to make sure they get the right support.

“We have also put in place a comprehensive package of support for the mental health impacts of the pandemic, including dedicated staff mental health hubs across the country, 24/7 text and phone support and free access to self-help apps.”
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Ah, well, problem solved, then. Nevermind it's all good, they have mental health support for their chronic illness so they'll be back to work chip-chop, if they want to.
 
The American Academy of Pediatrics posted a summary of a "virtual town hall meeting" on long covid on the website. (Sorry if this was already mentioned, in that case I missed it.) This is the article: https://www.aappublications.org/news/2021/03/23/townhall03-18-21

Peter Rowe was among the participants of the online discussion. The article only quoted part of what he said:

Peter C. Rowe, M.D., FAAP, director and professor of pediatrics at Children’s Center Chronic Fatigue Clinic/Johns Hopkins, is following a large cohort of adolescents and young adults who have developed long-term MECFS after COVID-19 infection. MECFS can cause substantial impairment in previously tolerated activities and profound fatigue, unrefreshing sleep and post-exertional malaise after activity, according to the Institute of Medicine. Dr. Rowe said patients also may experience orthostatic intolerance and cognitive problems that emerge suddenly and resemble attention-deficit/hyperactivity disorder (inattentive type).

“These people can’t even sit up … they can’t stand for two minutes to microwave their food. It’s really quite extraordinary. They have terrible brain fog. … they’re fatigued from the beginning,” he said. “This orthostatic intolerance is not something that you can blame on deconditioning and inactivity.”

Telemedicine has been a valuable resource for these patients to access care because the physical demands of coming in for a clinic visit could cause a flareup of MECFS symptoms, he said.
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You can also find the link to the video in the article (it's 1 hour long). I didn't watch it in its entirety, just stopped at certain points to check for ME/CFS related parts. But at the very end he talks about how ME/CFS is not behavioral and it needs to be educated better and even adult patients, some of them seriously disabled suffer alone without proper care and this is a shame, we have brought this on ourselves. More specialists and a coordinated effort are needed because ME/CFS is the number one reason for prolonged absence from school and no one does anything about it.
 
http://annalsofrscb.ro/index.php/journal/article/download/2390/2009

Annals of R.S.C.B., ISSN:1583-6258, Vol. 25, Issue 3, 2021, Pages. 8460 - 8466
Received 16 Fe bruary 2021; Accepted 08 March 2021.
8460
http://annalsofrscb.ro

Causes of Chronic Fatigue Syndrome in Covid-19 Patients and Treatment Recommendations

Parisa Delkash1, Roya Vaziri-Harami2* 1Assistant Professor of Rheumatology, Imam Hossein Hospital, Behavioral Since Research Center of Shahid Beheshti University of Medical Sciences, Tehran, Iran. 2*Assistant Professor of Psychiatry Imam Hossein Hospital, Behavioral Since Research Center of Shahid Beheshti University of Medical Sciences, Tehran, Iran. E-mail: Roya832003@yahoo.com

ABSTRACT

COVID-19 virus infection mainly affects the respiratory system and presents with the initial symptoms of fever, cough, and body aches. It has been observed that in cases of corona disease, patients show signs of chronic fatigue after the disease.

Chronic Fatigue Syndrome (CFS) is referred to as chronic fatigue caused by diseases and can include long-term symptoms such as deep fatigue, difficulty concentrating, and problems in controlling the autonomic system. Studies show that the cytokine response is effective in causing this problem.

The cytokine response is an over-inflammatory process that results in complications such as multiple organ failure.

Delayed expression of interferons, as an essential part of the innate defense against viral infections such as COVID-19, plays a key role in creating the "cytokine storm", which is observed in patients with COVID-19.

This disruption of the immune system and increased immune response in people with corona disease can lead to chronic fatigue syndrome.

But the important point is that chronic fatigue, with changes in neuropsychiatric health, can affect the activity and function of the immune system of people with the disease, predisposing them to other diseases.

Paying attention to effective factors and treatments can play an important role in improving the health of people with chronic fatigue syndrome.

KEYWORDS Chronic Fatigue, Fatigue Syndrome, Coronavirus, Covid 19.
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When I got ill and asked my GP about "CFS", he said that diagnosis wouldnt get me anywhere.

It does because then at least I know what not to do.

Same thing happens with endometriosis, even though there is treatment.

Doctors seem to underestimate what it means for a patient to not have a diagnosis. Not only treatmentwise, but also psychologically, socially, being believed by family and work.

They seem to think giving you the diagnosis of a complicated illness means to doom you when in fact it can be a relief.
 
Leila said:
When I got ill and asked my GP about "CFS", he said that diagnosis wouldnt get me anywhere.

It does because then at least I know what not to do.

Same thing happens with endometriosis, even though there is treatment.

Doctors seem to underestimate what it means for a patient to not have a diagnosis. Not only treatmentwise, but also psychologically, socially, being believed by family and work.

They seem to think giving you the diagnosis of a complicated illness means to doom you when in fact it can be a relief.
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I had exactly the same experience ‘oh we don’t like to give that diagnosis, it’s better to focus on the symptoms...’ she wrote fatigue as the reason for signing me off work. I never went back to that surgery.
 
Long Covid isn’t as unique as we thought
If Spencer’s constellation of ongoing symptoms — fatigue, muscle and joint pain, memory issues — sounds familiar, it’s because it has become a frightening feature of some coronavirus infections, an epidemic of long-term illness within the pandemic. For the Covid-19 “long-haulers,” symptoms can persist for weeks or even months, long after being discharged from the hospital or testing positive for the virus, if they even saw a doctor or got diagnosed at all.

But Spencer never had Covid-19. His persistent aches, pains, and memory problems arose after contracting Ebola in late 2014
The experience led him to join the growing chorus of health professionals, patient advocates, and researchers who argue we need to reframe how we think about coronavirus long-haulers.
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It’s not just viruses that can trigger long-haul illnesses
Myalgic encephalomyelitis/chronic fatigue syndrome is one of those persistently under-recognized, underfunded, chronic conditions. ME/CFS, as it’s known, afflicts up to 2.5 million Americans every year, mostly women, with persistent symptoms ranging from fatigue and dizziness to sore throat and muscle pain. Recently, ME/CFS patients and their doctors have been pointing to the overlap with long Covid, conditions that US health official Anthony Fauci has called “very strikingly similar.”

“A proportion — usually around 30 percent — of survivors of any medical condition report high rates of fatigue, sleep disturbance, brain fog, pain, depression, and anxiety”
Diagnoses of ME/CFS are made on the basis of symptoms, and some long-Covid patients meet the diagnostic criteria for the syndrome. Post-exertional malaise, for example, is considered “the cardinal symptom” of ME/CFS, said Jaime Seltzer, director of scientific and medical outreach at the ME/CFS advocacy group ME Action. It’s also something nearly 75 percent of long-Covid patients reported in the recent long-hauler preprint. In another recent paper, researchers called on physicians to familiarize themselves with ME/CFS as the pandemic could “at least double” the number of cases.

There’s debate about what causes ME/CFS. The dominant view among researchers is that it’s a genetic disease triggered by an immunological stressor, like a viral infection. A 2006 study followed 253 patients who’d been diagnosed with Epstein-Barr virus (the cause of mono), Coxiella burnetii (Q fever), or Ross River virus (epidemic polyarthritis) for a year and found 12 percent were diagnosed with ME/CFS within six months.
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https://www.vox.com/22298751/long-term-side-effects-covid-19-hauler-symptoms
 
I had exactly the same experience ‘oh we don’t like to give that diagnosis, it’s better to focus on the symptoms...’ she wrote fatigue as the reason for signing me off work. I never went back to that surgery.
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This is the other side of the psychosomatic quack theories. The proponents have convinced doctors that patients will develop an illness if they hear about it so giving them a name to latch onto will make them worse. Horror, they may even join a support group and doom themselves to a lifetime of illness.
 
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