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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Pyrrhus

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Two more upcoming online meetings of note:


US National Institute for Allergy and Infectious Disease (NIAID) presents:
"Workshop on Post-Acute Sequelae of COVID-19"
December 3, 2020—December 4, 2020 10:00 AM-5:00 PM (East coast time)
https://web.cvent.com/event/cf41e3b5-04e7-4e09-b25d-f33dfcd16fed/summary
NIAID is hosting a virtual Workshop on Post-Acute Sequelae of COVID-19 on December 3-4, 2020 to summarize existing knowledge on post-acute manifestations of COVID-19 and to identify key knowledge gaps. Be sure to register to receive updated information about the workshop. Workshop links will be sent closer to the date of the workshop.
For more information, see this discussion which describes how this workshop was boycotted by a large Long Covid patient organization:
https://forums.phoenixrising.me/threads/nih-workshop-post-acute-sequelae-of-covid19-december-3-4-2020.82038/


International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC) presents:
Long COVID-19 Research Forum
https://isaric.org/event/long-covid-joint-research-forum-virtual-events-9-10-december-2020/
Currently very little is known about the clinical, biological, psychological and socio-environmental impact of Coronavirus Disease 2019 (COVID-19). While most people have uncomplicated recoveries, some continue to live with prolonged illness and symptoms. The most common of these are fatigue, breathing difficulties, joint pain and chest pain. In those whose symptoms persist, COVID-19 has been associated with a worsened quality of life for almost half of them. These on-going difficulties affect not only patients who were hospitalised but also those with mild COVID-19 who were not hospitalised.
[...]
With this need in mind, ISARIC and GloPID-R are organizing the Long COVID Joint Research Forum on December 9 & 10, 2020. The objectives of the forum will be:
  • to gain a better understanding of Long COVID; the science and the personal impact
  • to define research gaps for funders and researchers to take forward
Speakers & Participants
  • The speakers and participants will be from the research community, patient groups, research funders, policy makers and public health representatives.
 
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Pyrrhus

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Attached is an excellent discussion of the NAD+ theory- long haul COVID.

Conditions which result in low NAD+ seem to lead to a higher likelihood of long haul COVID.

This discusses supplementation with NAD+, Zinc, Vit C, Vit D, Selenium....and Quercitin

https://nkalex.medium.com/the-team-...o-seem-to-have-solved-long-covid-5f9852f1101d
Thanks @Rufous McKinney !

Also Discussion here:
https://forums.phoenixrising.me/threads/long-covid-being-treated-with-nad.82106/
 

Pyrrhus

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Good news:
There was a conference held specifically on Long Covid that was attended by the head of the World Health Organization.

Bad news:
ME/CFS wasn't mentioned once.

Good news:
The British Medical Journal (BMJ) published an editorial calling for more research into Long Covid:
https://blogs.bmj.com/bmj/2020/12/09/confronting-the-pathophysiology-of-long-covid/

Bad news:
The editorial doesn't mention ME/CFS once.

Good news:
The Lancet published an editorial calling for more research into Long Covid:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32662-3/fulltext

Bad news:
The editorial doesn't mention ME/CFS once.
https://meassociation.org.uk/2020/1...gnise-the-surge-in-post-covid-me-cfs-illness/
 
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Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
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Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
US National Institute for Allergy and Infectious Disease (NIAID) presents:
"Workshop on Post-Acute Sequelae of COVID-19"
December 3, 2020—December 4, 2020 10:00 AM-5:00 PM (East coast time)
https://web.cvent.com/event/cf41e3b5-04e7-4e09-b25d-f33dfcd16fed/summary
For more information, see this discussion which describes how this workshop was boycotted by a large Long Covid patient organization:
https://forums.phoenixrising.me/threads/nih-workshop-post-acute-sequelae-of-covid19-december-3-4-2020.82038/

Video recording of DAY ONE:
https://videocast.nih.gov/watch=38878

Twitter thread about DAY TWO:
 

Pyrrhus

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This is a webinar December 9, 2020, I noticed in a recent email from some of the gurus from solveMECFS and the COVIDs group, likely or certainly appropriate pursuant to the information referenced in this thread:
I'll put that on my calendar....but @Stretched, would you kindly remind us again? Thanks. Yours, Lenora.


The recorded event is now available in this discussion:
Long Covid and ME Advocacy Groups Join Forces!
https://forums.phoenixrising.me/threads/long-covid-and-me-advocacy-groups-join-forces.82329/
 

Pyrrhus

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So, after all these discussions about Long Covid, are we able to now say what Long Covid is?

We know that there is some overlap with ME, but also some differences. We know that different people can have very different symptoms. We know that some people appear to recover after 9 months or so, while other people show no signs of recovery. But it still seems too early to know anything for sure.

Fortunately, the folks at Patient-led Research have pre-published a fairly comprehensive picture of the symptoms in Long Covid:

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and
Their Impact

https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2.full.pdf

EDIT:
now published in the Lancet: https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext

Davis et al 2021 said:
Objective. To characterize the symptom profile and time course in patients with Long COVID, along with the
impact on daily life, work, and return to baseline health.

Design. International web-based survey of suspected and confirmed COVID-19 cases with illness lasting over
28 days and onset prior to June 2020.

Setting. Survey distribution via online COVID-19 support groups and social media

Participants. 3,762 respondents from 56 countries completed the survey. 1166 (33.7%) were 40-49 years old,
937 (27.1%) were 50-59 years old, and 905 (26.1%) were 30-39 years old. 2961 (78.9%) were women, 718
(19.1%) were men, and 63 (1.7%) were nonbinary. 8.4% reported being hospitalized. 27% reported receiving
a laboratory-confirmed diagnosis of COVID-19. 96% reported symptoms beyond 90 days.

Results. Prevalence of 205 symptoms in 10 organ systems was estimated in this cohort, with 66 symptoms
traced over seven months. Respondents experienced symptoms in an average of 9.08 (95% confidence
interval 9.04 to 9.13) organ systems. The most frequent symptoms reported after month 6 were: fatigue
(77.7%, 74.9% to 80.3%), post-exertional malaise (72.2%, 69.3% to 75.0%), and cognitive dysfunction
(55.4%, 52.4% to 58.8%). These three symptoms were also the three most commonly reported overall. In
those who recovered in less than 90 days, the average number of symptoms peaked at week 2 (11.4, 9.4 to
13.6), and in those who did not recover in 90 days, the average number of symptoms peaked at month 2 (17.2,
16.5 to 17.8). Respondents with symptoms over 6 months experienced an average of 13.8 (12.7 to 14.9)
symptoms in month 7. 85.9% (84.8% to 87.0%) experienced relapses, with exercise, physical or mental activity,
and stress as the main triggers. 86.7% (85.6% to 92.5%) of unrecovered respondents were experiencing
fatigue at the time of survey, compared to 44.7% (38.5% to 50.5%) of recovered respondents. 45.2% (42.9%
to 47.2%) reported requiring a reduced work schedule compared to pre-illness and 22.3% (20.5% to 24.3%)
were not working at the time of survey due to their health conditions.

Conclusions. Patients with Long COVID report prolonged multisystem involvement and significant disability.
Most had not returned to previous levels of work by 6 months. Many patients are not recovered by 7 months,
and continue to experience significant symptom burden.
 
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Pyrrhus

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An interesting editorial from Anthony Komaroff and Lucinda Bateman:

Will COVID-19 Lead to ME/CFS?
https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full
Discussion:
https://forums.phoenixrising.me/thr...phalomyelitis-chronic-fatigue-syndrome.83012/

Excerpt:
Komaroff and Bateman 2021 said:
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”.

[...]

CONCLUSION
The COVID-19 pandemic has been a tragedy. It has devastated the health and financial well-being of many people around the world. An unprecedented effort is underway to understand, prevent and treat the disease.
We should not forget the importance of studying all people who become infected with SARS-CoV-2, even those with only mild initial illnesses, and to study the recovery period and the long-term health consequences of COVID-19. We need to know how to prevent and treat “long COVID”. What we learn may apply to the prevention and treatment of ME/CFS, as well.
 
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