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

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don't know if this has already been posted
ECHAlliance member Joan McParland gives a patients view on Myalgic Encephalomyelitis: What do we need to know, while expecting a rise in cases post Covid-19?
4th May 2020
The unique and defining feature of M.E. is called post-exertional malaise (PEM) a worsening of symptoms brought on by physical activities, mental activities, or both.

This 3 minute video helps identify and explain PEM
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M.E. is also sometimes referred to as chronic fatigue syndrome (CFS) or ME/CFS, also referred to as post-viral fatigue syndrome. We will not debate the name at this time but healthcare providers do need to be aware of the emerging post-covid health threat we face as a result of Covid-19.

There is an abundance of evidence on post-viral states developing into M.E., if susceptible patients are not properly identified and early, preventative interventions not applied.

An increased risk of developing ME/CFS has already been associated with a previous viral pandemic.

The British Medical Journal (BMJ) published a study. It found that in the case of four different viruses, 9% of people affected ended up with ME.

Covid-19 also has the potential of producing a large number of new cases of M.E. and will add to the thousands of patients who never recover from virally induced chronic fatigue.
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full article here
https://echalliance.com/myalgic-enc...hile-expecting-a-rise-in-cases-post-covid-19/
 
Hi there a Tweet chat tonight (13th May) at 9pm (British Summer Time) #IrishMed post coronavirus illness
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I saw this posted somewhere.

Weds 13 May, 9 pm UK/Ire (BST), 4pm ET.

Co-host Dr Kit Byatt @Laconic_Doc

If the pandemic reminds of of anything, it’s that science is not an exact science. Uncertainty still abounds e.g the exact number of deaths, the exact number of people infected.

But what about those who have had the infection, but have got better? Are there any longer-term health issues as a consequence of infection?

1) What are the important developments since last week?

2) What have you experienced or seen as after effects of Covid-19 infection?

3) Do patients with more severe symptoms in the acute illness have more problems during recovery?

4) What advice have you for people getting over Covid-19?

5) Which aspects of recovery do you think should be researched?
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https://irishmed.wordpress.com/2020/05/12/the-coronavirus-crisis-8-post-cv-illness
 
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Haven't been able to follow this thread closely, just wanted to mention that the Lam et al. 2009 study that found that 27.1% of their SARS cohort "met the modified 1994 Centers for Disease Control and Prevention criteria for chronic fatigue syndrome", probably didn't do a thorough clinical examination as the criteria required. The authors write:
The other limitation of this study is that the information on medical complications was retrieved from medical records and reports from study participants. Additional physical workup, especially on hormonal profiles, would provide more information and directions for future studies.
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From epidemiologic studies, we know that around 80% who meet the criteria based on questionnaire screening (CFS-like illness), turn out to not have CFS when they receive a thorough clinical examination. The other SARS study that is frequently quoted by Moldofsky & Patcai also didn't assess CFS criteria, they simply noted that the symptoms seen in their small cohort of 22 SARS patients reminded them of CFS. So I think it's still unclear whether the first and second SARS coronavirus will lead to an increased risk of ME/CFS.
 
Copied post - discussion of this study continues here
JOGO Health Launches COVID-19 Chronic Fatigue Syndrome Study May 2020
BRIDGEWATER, N.J., May 13, 2020 /PRNewswire/ -- JOGOHEALTH Inc., a Bridgewater, New Jersey based privately held digital therapeutics company focused on the development and commercialization of treatments for neuromuscular (NM) and chronic pain conditions today announced that it will launch a study on COVID-19 related Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

According to the patient advocacy group Solve ME/CFS Initiative, nearly 35% of COVID-19 patients are experiencing ME/CFS symptoms post infection. Since the onset of ME/CFS usually follows a viral infection, experts estimate up to 3,570,000 new ME/CFS cases following the COVID-19 pandemic. This would more than double the existing cases of ME/CFS in the United States in just 36 months, according to Solve ME/CFS Initiative.

"The science behind JOGO has shown to work for Fibromyalgia in many peer reviewed studies. Fibromyalgia and CFS/ME are both illnesses characterized by extreme amounts of fatigue. In fact, the conditions seem to be so intertwined that the medical community continues to debate whether fibromyalgia fatigue is simply a different expression of the same disorder that causes CFS. So, we approached some of the top experts in this field and the researchers were convinced, JOGO is a potential candidate for ME/CFS," said Siva Nadarajah, Co-Founder and President of JOGO Health Inc.

"We are excited by the opportunity to help patients, during post COVID-19 recovery phase. There are no treatments for ME/CFS yet – CDC has shown special interest in this condition as it impacts patients' return to normal life. In a befitting honor to the memory of Florence Nightingale – who suffered from ME/CFS – her birthday, May12th, is marked as World ME/CFS Day," said Sanjai Murali, Founder and CEO of JOGO Health Inc.

According to CDC, prior to COVID-19, ME/CFS affected up to 2.5 million Americans. The Arthritis Foundation estimates that 50 to 70 percent of people with fibromyalgia also fit the criteria of ME/CFS
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https://www.prnewswire.com/news-rel...chronic-fatigue-syndrome-study-301058714.html
 
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rvallee said:
I lost the bookmark but a virologist got a severe case and mentioned something to the effect that "it wasn't just fatigue, this was exhaustion". Because what they're taught about fatigue is so completely wrong that when they actually experience it themselves they are in total disbelief about it. "This can't be post-viral syndrome, this is serious!", is also the substance of disbelief, but even for an acute infection the severe exhaustion level is not supposed to be such a damn surprise. Coming from virologists and infectious disease specialists is such an incredible level of failure.
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It was Peter Piot of LSHTM. He told the Guardian: "I constantly felt exhausted, while normally I’m always buzzing with energy. It wasn’t just fatigue, but complete exhaustion; I’ll never forget that feeling. I had to be hospitalised, although I tested negative for the virus in the meantime. This is also typical for Covid-19: the virus disappears, but its consequences linger for weeks."

Perhaps Cure ME, also at LSHTM, could explain to Prof. Piot that in M.E., "complete exhaustion" lingers not "for weeks" but for months, years and decades.
 
Dolphin said:
(Not important at all)
From a medical Twitter chat today on the after effects of covid-19:


Groan. He is a retired doctor from Scotland
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What about fairies? Cosmic dragons? Karma:Thetans ratio? Humour imbalance? Planetary alignment? Wait, that last one is a bad example it's actually testable.

Later admits it's untestable so what's even the point in suggesting what's been obsessively promoted for decades to massive institutional failure? It's basically the main focus of the BPS model so it's been suggested plenty.

Blaming the patient never goes out of fashion. Literally the only remaining barbaric practice of its kind anywhere outside of hostile politics and it has a prominent place at the heart of life sciences. Good grief the mediocrity of this ideology never ceases to disgust me.
 
Would it be controversial to suggest that premorbid personality will be an important factor in the outcome?
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Given the high disease burden on some ethnic minority groups, are you sure you wouldn't like to rephrase this question?

The type of jobs people do, their housing, the quality of food they have access to, plus how genetic components affect immune systems and response to infection are more pertinent than whether the person has a sunny disposition or not.

Or perhaps he's suggesting the elderly have poor outcomes because of their mindset. Despite the fact they've clearly managed to survive all sorts of life crisis so far.

Perhaps he feels those with underlying conditions have a rougher time with covid because of their attitude? Yet many people with serious underlying conditions manage to work full time, raise families and contribute to society.

Could he be suggesting the mentally ill have poorer outcomes? Many of those with mental health conditions still manage to live fairly normal lives despite the burden of mental ill health. Those with severe mental health conditions are much more likely to be at risk because of lack of proper support and extreme poverty.

There are all sorts of valid reasons some bear a higher burden in this pandemic than others. Interesting how some always want to sit in judgement of those who suffer ill fortune or ill health through no fault of their own. Perhaps they're throwbacks to the dark ages and they think sitting in judgement will protect them from bad luck?

Edit - just in case I was breaching forum rules
 
The Guardian has a corona virus article today that includes an interview with Garner

Since his piece was published, Garner has received emails and tearful phone calls from grateful readers who thought they were going mad. “I’m a public health person,” he says. “The virus is certainly causing lots of immunological changes in the body, lots of strange pathology that we don’t yet understand. This is a novel disease. And an outrageous one. The textbooks haven’t been written.”

Prof. Tim Spector of King's College London says:
“These people may be going back to work and not performing at the top of their game,” Spector says. “There is a whole other side to the virus which has not had attention because of the idea that ‘if you are not dead you are fine.’”

The article ends with:
Meanwhile Covid “long-termers” have been comparing notes via a Slack support group. It has #60plus-days and #30plus-days chat groups. The dominant feeling is relief that others are in the same grim situation, and that their health problems are not imaginary

https://www.theguardian.com/world/2...advent-calendar-covid-19-symptoms-paul-garner

Copied to the Paul Garner thread
 
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Spoonseeker has written a blog about this:
Sadly, COVID-19 Could Just Be The Start Of Your Problems..


I know you have enough to worry about already with the pandemic situation the way it is, but there is something else important that you should know. The sad truth is that if you get COVID – 19 and survive, it could just be the start of your problems.

Ever since we first heard of this new virus, those of us who have experienced ongoing life-altering symptoms over many years following viral infection have feared that it would leave a great many more people in a similar condition to ourselves. It gives me no satisfaction whatsoever to report that this appears to be the way things are heading.
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https://spoonseeker.com/2020/05/15/sadly-covid-19-could-just-be-the-start-of-your-problems/
 
From ME Action's Jaime Seltzer.
Citizen science highlights non-recovery in COVID-19 patients

Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team.

The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights into disease-presentation and long-term issues in recovery.
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Article: https://www.meaction.net/2020/05/15/citizen-science-highlights-non-recovery-in-covid-19-patients/
Report from Body Politic COVID-19 Support Group: https://docs.google.com/document/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk
 
I don't think people who use "post viral fatigue syndrome" necessarily believe the virus is definitely gone but simply that the symptoms followed after (post) a virus.

And indeed, in the Oxford criteria, there is a subgroup for "postinfectious fatigue syndrome" (admittedly not the same term as postviral fatigue syndrome): "This is a subtype of CFS which either follows an infection or is associated with a current infection".

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

Also, there hasn't been a huge push from the medical profession in general up to now to separate the groups of patients into separate categories based on the initial infection that triggered the syndrome. Generally it's the medical profession that have bundled them altogether.
 
Dolphin said:
Also, there hasn't been a huge push from the medical profession in general up to now to separate the groups of patients into separate categories based on the initial infection that triggered the syndrome. Generally it's the medical profession that have bundled them altogether.
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I partly agree, but there has been some separation. For instance, Q-fever fatigue syndrome has tended to be separated out. I recall the comment made by an (off-screen) doctor during the 2019 Emerge conference that QFS and CFS were definitely different because the people who get QFS are quite different to the people who get CFS (i.e. presumably, in his mind, more male, rural, phlegmatic).

Possibly even post-Ciguatera fatigue will eventually be seen as part of ME/CFS. It's difficult to know exactly what should and shouldn't go together when we don't know the causes.
 
If ME/CFS/post-viral fatigue syndrome isn't mentioned in discussions about post-Covid symptoms and impairments, then connections could easily not be made about possible similarities and learning points (e.g. about the problems with the BPS approach).

Also we could easily get forgotten. This is possibly a once-in-a-lifetime opportunity for us. It looks like billions this year and maybe tens of billions in the coming years could be spent on COVID-19 research.
 
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