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

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I copied this from Healthrising :
All of the studies below are following coronavirus patients for at least one year. The one that requires hospitalization will include less severe hospitalized patients.

  • Nancy Klimas will be following 2,200 COVID-19 patients over time South Florida in a $4 million study.
  • Avindra Nath is following 1,200 COVID-19 patients over time.
  • Leonard Jason is tracking several hundred COVID-19 college students over time.
  • A 900-person study assessing COVID-19 outcomes is slated to last through 2027.
  • A 150-person observational COVID-19 Norwegian study runs through 2023.
  • A 250-person Columbia study tracks COVID-19 patients over one year.
  • A 250-person Johns Hopkins study will compare inflammatory/immunological, physical, pulmonary, and neuropsychological status in severely ill patients vs patients who simply received oxygen during hospitalization over 12 months.
  • A 400-person French study will study sleep, exercise capacity and respiration in COVID-19 patients for five years.
  • A huge (4,000-person) European study will follow anyone with respiratory issues (such as cough, sore throat, etc.) after an infectious illness for two years.
  • A 350-person New York University study will assess COVID-19 outcomes over several years in its survivorship database of coronavirus patients.
  • A year-long Australian study at St. Vincent’s Hospital in Sydney is following 100 COVID-19 patients.
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I got an email update about a date change for one of the Solve M.E. webinars. The webinar scheduled for Wednesday, Dec. 9, has been moved to Thursday, Dec. 10, at the same time.

Cut/paste from the email:
================

**CHANGE OF DATE!**
Thursday, December 10, 2020 Webinar

COVID Long Haulers and the ME/CFS Community:
Joining Forces for Progress

Presented by Global Pandemic Coalition CEO Hunter Howard,
Covid-19 Long Hauler Advocacy Project Founder Karyn Bishof,
Solve M.E. President & CEO Oved Amitay, and
Solve M.E. Advocacy & Community Relations Director Emily Taylor


longhaulers_webinar_dec_10_min.png



Webinar description:

The term “long haulers” refers to the growing number of people who contracted COVID-19 and continue to suffer from symptoms past the anticipated recovery time — even though tests might reveal no virus left in the body. COVID-19 “long haulers” continue to struggle with debilitating symptoms, often alone, in the shadows of this devastating disease. Having escaped the worst, they nevertheless struggle with symptoms that in many cases are indistinguishable from ME/CFS.

After contracting COVID-19 early in the pandemic, Hormone Therapeutics CEO Hunter Howard endured a long, painful recovery process. Shocked by the lack of solutions to the epidemic, he launched the Global Pandemic Coalition to drive much needed services and connected with other survivors to start the search for answers.

The Coalition now spans six continents and pursues COVID-related solutions with the hope of introducing them to the general public and governmental agencies. The Coalition aims to collaborate with government agencies and hospitals to make health recommendations for the reopening of public spaces, and is investigating efficient contact tracing for widespread use to help slow the spread of the virus.

Karyn Bishof is a firefighter and paramedic who has been dealing with the lingering effects of COVID-19, many of which are reminiscent of ME/CFS, for eight months. Ms. Bishof founded the COVID-19 Long Hauler Advocacy Project, which is focused on advocacy for survivors, long haulers and their care.

The group focuses on advocating for long haulers by pushing for comprehensive post-COVID care centers which includes communications with lawmakers and hospital systems. The group also provides resources and tips for how patients can organize and advocate for themselves with their own physicians and participates in community outreach via media appearances, articles, blogs and a PSA. The group values the support of other chronic illness communities and works with them to collaborate on common goals.

In this webinar, Solve M.E. President & CEO Oved Amitay and Advocacy & Community Relations Director Emily Taylor will talk to Howard and Bishof about their experiences with long-COVID and how their respective backgrounds in IT, health care, and emergency medical services have informed their approaches to gaining community-based knowledge. We’ll explore how COVID-19 long haulers and the ME/CFS community can join forces for progress in the study, understanding and management of both COVID-19 and ME/CFS.

When:
**New date**
Thursday, December 10 at 10 am PT/1 pm ET
Register here.
 
Insurers must prepare for 'Long Covid'
Preparedness for claims should include physical and mental health support for long-term effects, RedArc warns

Holistic and personalised support - similar to that already provided by insurers for condition such as cancer, ME and diabetes - is required for Long Covid, RedArc has urged.

The recommendation comes in light of concerns raised by the National Institute for Health Research (NIHR) about the potentially devastating psychological impact of the condition, which can include patients suffering from post-intensive-care syndrome and post-viral fatigue syndrome.
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Chronic fatigue syndrome

The RedArc guidance comes after debate around how best to treat Long Covid, with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) experts becoming increasingly concerned about its apparent crossover with the new condition, which can lead to headaches, brain fog, prolonged tiredness and joint and muscle pain.

"It's extraordinary how many people have a postviral syndrome that's very strikingly similar to ME/CFS," a key US public health official, Dr Anthony Fauci, said in July. "They just don't get back to normal energy or normal feeling of good health."

Just last month, the National Institute for Health and Care Excellence (NICE) decided to no longer recommend graded exercise therapy (GET), which entails incremental increases in physical activity to build tolerance, as a suitable way to treat ME/CFS.

Separate NICE guidelines for Long Covid are expected soon and it remains to be seen if graded exercise therapy will be included as part of its recommendations.
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https://www.covermagazine.co.uk/news/4024359/insurers-prepare-‘long-covid’
 
alktipping said:
one year just isn't long enough their are many who take 18mnths or more to recover from viral infections . hence the mythical recovery stories various people like to promote pvs is not the same as m e .
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It's possible that some will experience permanent loss of stamina, like those who contracted EBV but never developed ME. They're still functional, but can no longer exercise like they once did before the infection.
 
From: Dr. Marc-Alexander Fluks

Source: Contagion Live
Date: December 1, 2020
Author: John Parkinson
URL:
https://www.contagionlive.com/view/can-covid-19-morph-into-other-serious-health-issues-


Can COVID-19 morph into other serious health issues?
----------------------------------------------------

A team at Columbia University's Mailman School of Public Health is
partnering with a chronic fatigue syndrome (CFS) organization to study
COVID-19 and CFS.

For the condition previously called chronic fatigue syndrome (CFS), and
now referred to as myalgic encephalomyelitis (ME), people suffering from
the condition are marked by overwhelming fatigue as well as potentially
other multi-system conditions that can be chronic in nature. The cause
of ME is not truly understood and there are no definitive tests to
diagnose it or therapies to treat it.

Mady Hornig, MA, MD, is an associate professor of epidemiology at
Columbia University's Mailman School of Public Health, and she had
COVID-19 earlier this year. She has had a continuation of symptoms and
health issues several months after initially having a fever, and has
been characterized as being a COVID-19 long-hauler.

These subset of patients report having a number of health problems after
their initial bout with COVID-19 including a loss of taste and smell,
severe fatigue, or neurological issues.

As with other viruses, there is a long-term concern with COVID-19 that
some lingering health effects post virus might morph into more serious
conditions. For example, Post Ebola Syndrome illustrates that some
people who beat the virus end up having other health issues including
eye problems up to blindness, neurological issues, as well as muscular
and joint pain. The syndrome can be quite debilitating to the point of
leaving people unable to work.

Hornig and her team have partnered with Solve ME, which is a non-profit
organization dedicated to accelerating the discovery of treatments,
expanding funding for cure research, and engaging the ME/CFS community
in research, advocacy, and patient support.

Solve ME has developed a tracker to help report both ME and COVID-19
cases.The Hornig team is looking to collect clinical data and biological
samples to further understand ME as well as COVID-19 in the participant
population.

For Hornig and her team they are going to study further areas related to
chronic fatigue syndrome symptoms and the overlap with the long-hauler
phenomenon. She notes that 10% to 12% of those who suffer infectious
mononucleosis, for example, get diagnosed with chronic fatigue syndrome.

In the third segment of an interview with Contagion, Hornig offers a
glimpse about the 3 potential outcomes they are looking to gain from
these studies.

[Video]
https://www.contagionlive.com/view/can-covid-19-morph-into-other-serious-health-issues-

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Dealing With a COVID-19 Diagnosis
---------------------------------

Mady Hornig, MA, MD, discusses the mental and emotional aspects of
dealing with a diagnosis and the evolution of how people are processing
the virus many months later after it started.

Mady Hornig knows firsthand the full COVID-19 experience. Hornig MA, MD,
is a psychiatrist who works in New York City and has had COVID-19
herself. She has even been characterized as being a COVID-19
long-hauler, where she has had lingering symptoms for months.

Although in the spring there was an overwhelming fear in the public
sphere especially in New York according to Hornig, as the months have
gone by and people have a better understanding of the virus, patients'
emotions might be more tempered. However she says they still need
reassurance today when they are diagnosed.

One of the interesting phenomenons of COVID-19 has been the'happy
hypoxics.' This is a smaller subset of patients with severe COVID-19 who
have low blood-oxygen levels, but rather than struggling to breathe,
they say they feel comfortable and are able to do normal things like
talk with medical staff.

'These happy hypoxics were having these oxygen saturation levels in the
high 70s and low 80s and their lips would start to turn blue and they
didn't feel short of breath,' Hornig said. 'And so the question was, is
it neurological circuitry that is being blunted from the emotional side
because of the virus or because of the immune response induced by the
virus?'

In the fourth segment of an interview with Contagion(r), Hornig
discusses how the cytokine system, which can play a role in COVID-19
patients, can affect their emotions as well as the importance of medical
providers giving their patients objective measures to help them with
reassurance and know that their care is being taken seriously.

[Video]
https://www.contagionlive.com/view/dealing-with-a-covid-19-diagnosis

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Studying COVID-19 Long-Haulers
------------------------------

Even before Mady Hornig's experience with COVID-19 and her being a
long-hauler, her team at Columbia University's Mailman School of Public
Health was planning to study the long-term effects SARS-COV-2 on people
with it.

Hornig, MA, MD, is an associate professor of epidemiology at Columbia
University's Mailman School of Public Health.

'We had planned to do these studies well before I had any evidence of
the illness,' Hornig said. 'The long-hauler situation was one we
anticipated might occur because of knowledge of other post-viral
syndromes.'

Hornig has had a number of what would typically be unrelated symptoms
including fever to COVID toes to hypertension. While she has maintained
a battle with an overwhelming fatigue she has been gradually feeling
better.

One of the interesting aspects the research is looking at is the
connection of chronic fatigue syndrome symptoms and the overlap with the
long-hauler phenomenon. Hornig notes that 10%-to 12% of those who suffer
infectious mononucleosis get diagnosed with chronic fatigue syndrome.

In the second segment of an interview with Contagion, Hornig offers
insights into the specifics of their studies including addressing who is
more at risk, inequities in care, and looking for potential solutions
for precision medicine.

[Video]
https://www.contagionlive.com/view/studying-covid-19-long-haulers
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Dolphin said:
From: Dr. Marc-Alexander Fluks
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It's still amazing that after months of a group of people having sounded the alarm, even prepared research and advocacy, long before medicine had generally started noticing anything, that absolutely no attention is being paid to those people who predicted something that still confuses the hell out of everyone, with no clue where to begin work. Zero interest. They are allowed to do their thing but otherwise no one pays attention.

I get that everyone hates Cassandras but you'd really expect that medicine, of all things, would find people who predict a massive problem and try to benefit from that knowledge. Predicting the future accurately is kind of a big deal, people rarely do that by pure chance, especially on scientific matters. I mean if people call out a disaster long before anyone else notices, surely they must have other useful bits of knowledge to contribute.

And yet, nope. People prefer to cling to the "mystery", the thing that "no one could have predicted", even though "we've always known about post-viral fatigue". Many people literally mapped the way forward, literally did predict it, and no one is interested.

And mostly because this is an explanation that no one wants to be true, it's completely irrational to the point of being self-defeating. Months are being wasted while people still refuse to ask the people who freaking predicted the whole thing and get them to lead on. Because surely it must be something different and new than "those" damn freaking "patients" who have said the very same things and yet, somehow, people claim loudly that they've never heard of this before. Not ever. Many have severe dysautonomia. Which obviously must exist, too. Prior to now. But it absolutely, somehow, MUST be all brand-new, or something.

Amazing. Amazingly bad, that is.
 
Supporting recovery from COVID-19, British journal of Nursing

https://www.magonlinelibrary.com/doi/abs/10.12968/bjon.2020.29.21.1272

Way too much emphasis on PTSD, still that damn anchoring that severe cases must be a significant factor, but mostly OK.

COVID-19 is a new disease. Most research into the disease has focused on prevention of viral spread and treatment, but little is known about how patients recover. Nurses, whether in hospital, the community or in primary care, have a key role in supporting recovery from COVID-19. In this article, direct evidence from studies of COVID-19, and indirect evidence from studies of infections caused by other coronaviruses (eg SARS, MERS) and of the ICU experience are explored to identify the potential course of recovery and areas where nurses can help. Most people will have an uncomplicated recovery. However, it appears that a more complicated recovery is likely to be associated with severe disease. A minority, possibly those needing hospitalisation, and/or with pre-existing physical or psychological comorbidities, may experience long-term physical effects, fatigue and mental health difficulties. The support that nurses, as part of a multidisciplinary team, can provide to facilitate recovery is discussed.
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Has a few dubious bits but the important parts are at least somewhat in the direction of actual reality, which is nice:

Post-viral fatigue (PVF) can range from tiredness to extreme exhaustion (Ahlberg et al, 2003) and is relatively common after many viral illnesses. Most people will gradually return to normal functioning within a few weeks (WHO, 2020). Persistent fatigue, which continues for about 4 months and interferes with the person’s capacity to carry out their day-to-day activities may lead to a diagnosis of post-viral fatigue syndrome (PVFS), also known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) (National Institute for Health and Care Excellence, 2007). Patients experiencing this prolonged fatigue should be referred to their GP for further investigation and specialist management. The ME Association website also offers useful information (Box 1). It is important for nurses, and all healthcare providers, to remember that PVFS and other medically unexplained syndromes (MUS) are poorly understood and that distrust can develop between patients and health professionals if symptoms are dismissed as ‘all in the mind’ (Dirkzwager and Verhaak, 2007).

The experience of fatigue in most people can be minimised by ensuring that the return to normal activities, including work, is gradual (Kos et al, 2015). Nurses should encourage patients to ‘pace themselves’ by using behavioural strategies, such as prioritising, goal setting and action planning (ie setting small achievable goals and a manageable strategy as to how these can be achieved), gradually increasing exercise, taking scheduled breaks and practising good sleep hygiene. For some patients who work, a phased return or temporary change of role to minimise the need to undertake particularly strenuous activities may be required. Nurses can support patients to approach their employers, many of whom will have sickness/absence policies which cover this.

Whatever their situation, patients should be advised not to ‘push through fatigue’ but to ‘listen to their body’ and to stop before they become tired (Kos et al, 2015). Patients should be encouraged to manage expectations and ‘sit with’ rather than ‘act on’ self-critical thoughts, which might encourage over-exertion such as ‘I should be able to do more’ or ‘I am useless if I can’t achieve what I could before’. Paying attention to thoughts and emotions and how they can influence behaviour is key to managing mental health (Hayes and Hofmann, 2017) including during recovery from COVID-19.​

I see no need to turn this into a "behavioral strategy", just standard useless BPS fluff, but whatever the advice is mostly not so bad.
 
Opinion piece in the journal of the Swedish Medical Association. 70 physicians from the support group for physicians with covid-19 are demanding better medical care for people suffering from long covid, and share some of their personal experiences/symptoms.

Sverige behöver en tydlig strategi för hantering av långtidscovid
https://lakartidningen.se/opinion/d...dlig-strategi-for-hantering-av-langtidscovid/
Google Translate said:
Sweden needs clear guidelines for investigation, treatment and rehabilitation in covid-19. More resources are also needed for research on the long-term effects of the disease.

In April 2020, a district physician noted that a dozen patients with covid-19 exhibited symptoms such as difficulty breathing, heaviness in the chest, fatigue, and headaches for just over a month. This is the first case description in Sweden of «long-term covid«. Covid-19 has since been shown to be a systemic disease that eludes the profession as it varies greatly in how it presents itself clinically, both between individuals and over time. Most people have short-term and mild symptoms, but some have had symptoms for up to eight months without getting better (see testimonies from doctors affected below).

The theories of pathophysiology are several: effects on immune systems / autoantibodies, endothelial and RAAS systems or genetic predisposition. Most of the long-term sufferers were previously healthy, in good physical condition and did not belong to any risk group [1]. We - a group of doctors who have long-term illness in covid-19 - believe that the following measures are necessary:

Investigation and treatment. [...]

Rehabilitation. [...]

Follow-up and research. [...]

Patient involvement. [...]

In the case of a new infectious disease, it is also obviously important to

take on the new situation with humility in the face of what we have no knowledge of

assume that what the patient says is true

take an interest in the patient's data and stories. [...]
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Letter to: Long covid: doctors must assess and investigate patients properly

https://www.bmj.com/content/371/bmj...8LGjXFxWozyzZ3c8QpV3FQrXLUnmjL6s3G2cTAa8pmk_s

Of course it is important to “show you care” and empathise with the patient. But, as part of an online group of over 500 doctors (ever growing in number) affected by long covid, we are disappointed that the learning points don’t include “doctors should assess and investigate patients properly.” Before the covid-19 pandemic, symptoms such as low oxygen levels, tachycardia, and shortness of breath would warrant examination and investigation, especially when persistent and in previously fit and healthy patients.
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Who's gonna tell them that, actually, this usually gets the most cursory investigation in normal times, at best? Usually after a whole lot of "doctor shopping" and being assured, without a doubt, that it's "anxiety".

There's a really big trend in medical professionals who experience standard clinical care for chronic health problems and are outraged that it is completely inadequate. Which, yeah, "those patients" have been saying so for... ever, really. And anyway, standard investigations usually show nothing. So now what? Maybe let's pay attention to all of this? No? Not the time? Because only this affects you and only this should be treated with priority?

Turns out medicine ignoring illness is kind of bad. Who knew?!

Mod note: An excellent response here: BMJ Rapid Response: Dr Nina Muirhead
 
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Long COVID in the Faroe Islands - a longitudinal study among non-hospitalized patients

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa1792/6012625

All consecutive patients with confirmed RT-PCR testing from April to June 2020 were invited to participate in this study for the assessment of long COVID. Demographic and clinical characteristics and self-reported acute and persistent symptoms were assessed using a standardized detailed questionnaire administered at enrollment and at repeated phone interviews in the period 22 th April to Aug 16 th
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Of the 180 participants (96.3% of the 187 eligible COVID-19 patients), 53.1% reported persistence of at least one symptom after a mean of 125 days after symptoms onset, 33.3% reported one or two symptoms and 19.4% three or more symptoms. At the last follow-up, 46.7% were asymptomatic compared with 4.4 % during the acute phase. The most prevalent persistent symptoms were fatigue, loss of smell and taste, and arthralgias.
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Our results show that it might take months for symptoms to resolve, even among non-hospitalized persons with mild illness course in the acute phase. Continued monitoring for long COVID is needed.
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One trend I've noticed is that initially the word was 2 weeks. Then in the early days of Long Covid it was up to 3 months, then 3-6 months. Now I've seen recently people being told by physicians that it may take 12-18 months. This is a terrible way to go about things, just kicking the can down the calendar, leaving people to fend for themselves in the hope that it will just magically go away. Reckless and irresponsible.


Some highlights:

 
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