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

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This one is courtesy of the Daily Telegraph:

http://www.msn.com/en-gb/news/coron...for-months/ar-BB14pDLq?li=BBoPRmx&ocid=ASUDHP

Perhaps most interestingly, she said that patients can have a milder reaction to the virus and have symptoms persisting, whereas severe symptoms can go away quicker.

This is something that Professor Spector has also found: so far, he said, it’s looking like people with a very acute onset during the first two days tend to get it out of their system after about ten days, whereas the patients who have “more strange” symptoms seem to have them for longer in a “coming and going” pattern.

Prof Bolton also said that some younger people who contracted the virus are reporting periods of forgetfulness. “They’re feeling better in many ways, returning to work, but then their cognition is affected. They’re reporting it now because a few weeks on it’s returning. We need to be aware there is a whole spectrum of responses and outcomes from this condition.”
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Not a bad article, but not a single mention of PEM distinguishing ME from other fatiguing conditions. And says ME is hard to diagnose - surely that's mainly because doctors don't learn about it. If you understand the pattern of symptoms, and particularly have a really good understanding of PEM, and test properly to eliminate other causes, it shouldn't be too difficult to diagnose even without a biological test.
 
lycaena said:
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A first step being to use adequate language for it. Fatigue isn't appropriate. We don't call a car a steering wheel just because most cars have one. And actually since fatigue isn't even necessary it would be like calling cars a spoiler or clutch or whatever else is common but not universal on cars.

I don't know how this kind of conversation happens in medicine but the language used today will impact all future efforts, short-, medium- and long-term. In this case the impact will be strongly negative by injecting confusion into an already complex topic. It's clear that the use of fatigue is causing massive confusion when it is not the problem people are dealing with and it's not even necessary. Everyone experiencing struggles with the same confusion, it's maddening.

Chronic post-infectious illness? Something like that. I think it's important to distinguish infectious from viral because even though viruses seem to be the most common infectious trigger it also includes bacteria and other parasites. Clearly there will be sub-types but it's important to at least get the supercategory right this time.
 
From:Royal College of Occupational Therapists



https://www.rcot.co.uk/recovering-covid-19-post-viral-fatigue-and-conserving-energy

Recovering from COVID-19: Post viral-fatigue and conserving energy


Rehabilitation is fast becoming the new priority in dealing with the impact of this pandemic and is crucial for people recovering from COVID-19 infection.

We’ve published three guides to support people to manage post-viral fatigue and conserve their energy as they recover from COVID-19. These guides are endorsed by the Intensive Care Society.

These guides are available as PDFs to download and share with people who are recovering from COVID-19.

How to manage post-viral fatigue after COVID-19

Our post-viral fatigue guides are designed for people who have been hospitalised and for people who have recovered at home. They are filled with practical advice to support people to gradually and safely resume their activities of daily living.

How to conserve your energy

Our guide on conserving energy uses the 3 Ps principle (Pace, Plan, Prioritise) to support people to conserve their energy as you go about their daily tasks, so they have more energy throughout the day. The guide is filled with practical tips for different activities of daily living, including washing, cooking and shopping.

See the guide 'Practical advice for people during and after having COVID-19'

These three guides are produced by the Critical Care Forum, Royal College of Occupational Therapists Specialist Section – Trauma and Musculoskeletal Health in partnership with the Yorkshire Fatigue Clinic. They are published by the Royal College of Occupational Therapists and are endorsed by the Intensive Care Society
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rvallee said:
A first step being to use adequate language for it. Fatigue isn't appropriate. We don't call a car a steering wheel just because most cars have one. And actually since fatigue isn't even necessary it would be like calling cars a spoiler or clutch or whatever else is common but not universal on cars.

I don't know how this kind of conversation happens in medicine but the language used today will impact all future efforts, short-, medium- and long-term. In this case the impact will be strongly negative by injecting confusion into an already complex topic. It's clear that the use of fatigue is causing massive confusion when it is not the problem people are dealing with and it's not even necessary. Everyone experiencing struggles with the same confusion, it's maddening.
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They are talking about fatigue/exhaustion as symptoms, no? Not as a name for a disease. If they claim to have exhaustion and fatigue, I believe them.
 
Seizing the Moment: International ME/CFS COVID-19 Research Effort Begins

Carpe diem. The Romans breathed it. Goethe implored his readers to do it. Boldness, he said, has genius, power and magic in it. Seize the moment.

The moment for ME/CFS - the world's biggest infectious outbreak ever - has appeared, and the Open Medicine Foundation is seizing it with both hands.

With COVID-19 "unrecoveries" already showing up in the media, the OMF has begun an international effort to use the COVID-19 outbreak to understand how an infection can turn into a potentially life-long illness.

Find out about more about that and other COVID-19 studies that may help understand ME/CFS in.

Seizing the Moment: International ME/CFS COVID-19 Research Effort Begins
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https://www.healthrising.org/blog/2020/05/22/covid-19-omf-chronic-fatigue-syndrome-study/
 
"Belgian pandemic expert Peter Piot helped discover the Ebola virus, and is currently advising the EU on the COVID-19 pandemic. He is also a survivor of the disease, and found it much worse than he had expected."
DER SPIEGEL: Have you now overcome the sickness?

Piot: No, I’m far from being over it. I still can’t make it up the stairs without stopping. I tried jogging because I miss it, but I very quickly gave that up. I still take blood thinners because I have atrial fibrillation, and that might continue for the rest of my life. One of the reasons I’m giving this interview is because I want to direct people’s attention to precisely this. Many people think that for people who get COVID-19, it is a kind of flu for 99 percent, and that 1 percent die. I want it to get it into people's heads that there is also something in between – large numbers of people who survive, but who are seriously ill for a very long time.
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https://www.spiegel.de/internationa...vid-19-a-92cdf795-3378-44c8-b565-3294596e410c
 
This mentions CFS briefly a few times.

https://www.jpma.org.pk/supplement-article-details/476

May 2020, Volume 70, Issue 5
Commentary

[paste:font size="4"]Abstract
With the ongoing pandemic of COVID-19 having caught the world almost unaware millions of people across the globe are presently grappling to deal with its acute effects . Our previous experience with members of the same corona virus family (SARS and MERS) which have caused two major epidemics in the past albeit of much lower magnitude , has taught us that the harmful effect of such outbreaks are not limited to acute complications alone .Long term cardiopulmonary, glucometabolic and neuropsychiatric complications have been documented following these infections .In the given circumstance it is therefore imperative to keep in mind the possible complications that may occur after the acute phase of the disease subsides and to prepare the healthcare system for such challenges.

Keywords: COVID 19, Long Term Complications, Cardiopulmonary, Glucometabolic, Neuropsychiatric.
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DOI: https://doi.org/10.5455/JPMA.32


Psychiatric Complications



Psychiatric morbidities, chronic fatigue and resultant functional disabilities have been persistently noted to be high and clinically significant amongst SARS survivors. A 4-year study of SARS survivors has shown that active psychiatric illnesses was reported in more than 40% and chronic fatigue was reported by 40.3% (while 27.1% met the criterion for modified 1994 Centers for Disease Control and Prevention criteria for chronic fatigue syndrome.18 Another study reported high incidence of depression, post-traumatic stress disorder, somatoform pain disorder, and panic disorder in SARS survivors after 3 years.19 Interestingly a trend of progressive rise in psychiatric morbidities has been noted after the event which continued to increase with the passage of time. Assessment by standardized questionnaires showed figures around 10% to 35%20 in the acute phase of the infection (acute stage to 1 month) that increased to 64% at 1-year follow-up.21 A role of immunological dysfunctions, including cytokine disturbances has also been suggested.22 During acute SARS infection, cytokine storm has been demonstrated and prospective studies among survivors will be needed to clearly understand their long-term role in such conditions. Alterations in the insertion/deletion (I/D) polymorphism in the ACE gene have been associated with increased risk of chronic fatigue syndrome and as SARS-CoV utilizes the angiotensin-converting enzyme-2 ACE2 as a portal of cellular entry that could be a link in the explanation of association between SARS and chronic fatigue syndrome.23 In view of the high figures of long-term psychiatric dysfunction, it is important to optimize the diagnosis and treatment of mental health morbidities by a multidisciplinary approach aimed at long-term rehabilitation. Adequate measures to dispel perceived social stigmatization and proper functional rehabilitation would have strong roles to play in this context.

Apart from these complications an association between COVID 19 and a rise in cancer biomarkers like CYFRA21-1 and HE4 have also been noted which raise an alarm of potential malignancy in the future and need follow up.24
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rvallee said:
Simply calling it post-viral fatigue will confuse the crap out of people and likely do more harm than good. It really seems too much to ask for basic competence.
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Yup – it even led to Prof Garner saying early on that he didn't have post-viral fatigue, because the name isn't in any way descriptive of the condition.

Using a name like post-viral syndrome could potentially help. The lack of specificity might signpost people to the fact that there's a whole list of possible symptoms, not just one.
 
Kitty said:
Yup – it even led to Prof Garner saying early on that he didn't have post-viral fatigue, because the name isn't in any way descriptive of the condition.

Using a name like post-viral syndrome could potentially help. The lack of specificity might signpost people to the fact that there's a whole list of possible symptoms, not just one.
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And very telling that in COVID forums they basically say the exact same thing ME advocates have been saying all along, to the effect of "I don't feel fatigued I feel sick". I'm not saying it could confuse people, it already is confusing the crap out of people, things are FUBAR. And I've seen many comments saying something like "I hope this really is just CFS and what remains is just the fatigue and not all the symptoms", thinking it must be different than what they're dealing it if it's just fatigue remaining and not more of less the same symptoms remaining chronically.

Seriously gigantic messy failure that does not have anything comparable anywhere in any other field of science, the most pathetic failure in a field already filled to the brim with catastrophic failures. And then there are decades of very strongly voiced warnings saying exactly that would be the end result of fabricating this fake-ass syndrome of one symptom that isn't even the main symptom.
 
Kitty said:
Using a name like post-viral syndrome could potentially help
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the correct name (WHO) is Postviral fatigue syndrome

https://dxrevisionwatch.com/2018/08...ation-of-pvfs-me-and-cfs-for-icd-11-part-one/

but as with CFS being shortened to chronic fatigue, PVFS is also incorrectly abbreviated to post-viral fatigue. Obviously one being the name of the condition and the other being a symptom.

So, often in these articles it is not always clear which they are referring to and as the bPS lot like to mix the two on a regular basis, they have become almost synonymous.

Yet another reason(if we needed one) to ditch CFS and get rid of the 'fatigue' in PVFS as long as they are both listed alongside ME.
 
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