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

[Jonathan Edwards]

Probably one for @Jonathan Edwards, given the strong assertion of a "definitive" case:

First flare of ACPA-positive rheumatoid arthritis after SARS-CoV-2 infection

Since loads of people have had Covid and loads of people have RA with flares there are going to be cases of RA after Covid and flares of RA after covid. The theorising is empty speculation based on ideas from the last century that never panned out.

 

[Tom Kindlon]

Thread about this article here:
https://www.s4me.info/threads/role-...s-cov-2-‘long-haulers’-2020-tate-et-al.18008/

 

[alex3619]

Most scientists right now would say the symptoms are alarmingly similar and they don’t know yet.

That is where the evidence is. As we get more evidence we have to pay attention.

 

[rvallee]

Annoying to see the BBC always bungling their reporting of ME. For the last few months, it is mostly the ME and chronic illness communities that have helped with LC, providing advice that goes completely against conventional wisdom. I've never seen "official" sources being shared as helpful, always stuff made by or for the ME community. There is no "may help", it's already been the case the whole time.

And figures they'd say it's not the same by completely botching its definition as just fatigue. Lazy reporters? Malicious editors? The BBC has been especially incompetent in its reporting on the matter so far. Shamefully bad at times. And yet again.

No, LC and ME and not the same. But the overlap is immense, I'd say about 80% of LC is ME and it's probably higher. Depending on the definition of ME, of course.

 

[Kalliope]

 

[rvallee]

They had coronavirus. Now they’re showing up at memory clinics with serious cognitive loss

Somehow, in hindsight, such reaction as "what, you think you have actual fog IN your brain?" on and on for decades was not exactly smart. Then again, it was obviously very not smart at the time but in hindsight it's a special kind of very not smart.

https://www.nj.com/coronavirus/2020...mory-clinics-with-serious-cognitive-loss.html

These new patients were referred to the Montclair Memory Clinic in recent months with one thing in common. They had coronavirus, and now they’re experiencing significant cognitive impairment — the kind more typically seen in someone who is at risk for dementia.

“We’re talking about people who were functioning normally (prior to contracting coronavirus), but now they’re not able to function the way they used to,” she says. “There can be neurocognitive impairment. There can be neurobehavioral impairment, or emotional impairment.”

Somewhere between 40% and 50% of percent of Covid-19 patients develop neurological or psychiatric problems while they are still in the hospital, according to Dr. Robert Stevens, a Johns Hopkins University neurologist.

Again, nothing new:

That is a potential outcome that Rondeau says she saw coming even back in February, as coronavirus was turning into a full-bore global pandemic.

Rondeau, who founded the Montclair Memory Clinic in 2001, had seen instances in the past where a virus similar to COVID-19 led to perplexing cognitive loss in a person who had no previous memory issues. She recalls the case of “Amy,” a well-educated woman in her 40s who was a working mother with a thriving career as a civil engineer.

“This was pre-coronavirus and she had a viral infection that caused brain damage or brain lesions, around 2013,” Rondeau says. “She came into my practice after she had survived the virus. The first stage can be apathy or fatigue. She was an engineer, but she couldn’t get herself up to make breakfast for herself, or take care of her child.”

In fact, four out of every five patients who end up in the hospital with COVID-19 experienced neurological problems during their illness, based on research done at Northwestern University’s Feinberg School of Medicine.

The trauma of having a major, life-threatening medical condition can leave people functioning at less than their cognitive best, Rondeau adds.

“We know very well the mental health aspect of this, as well as the neurocognitive aspect,” she says. “If a person has been in ICU or hospitalized in general, there’s going to be trauma. There is going to be an acute stress reaction. They have a very strong foundation for anxiety that may develop into PTSD.”

Rondeau says anxiety is the “enemy of the brain,” and when the traumatic impact of a major illness is combined with the neurological damage that a virus can potentially cause, it becomes even more concerning.

Actually you absolutely definitely do not, in no way, "know this very well" and it's precisely this unexplained belief that makes it impossible for medicine to learn from experience here. Stop it and get learning.

“Basically, you’ve got problems with attention, with short-term memory and with language as well,” she says. “There are word-finding difficulties, there are problems with fluency in speech. All these areas can be affected. The profile of cognitive deficits may vary depending on the person’s pre-COVID status. This is true for any acute medical condition.”

So far everything indicates that there no such risk factors so stop speculating what you hope to find and do the science thing where you just follow the evidence.

“We are going to have a population of people with some level of disability that may be on the path to cognitive impairment,” she says. “We’re trying to reverse that impact. That’s what you can do with rehabilitation. We are starting to formulate programs.”

She says rehabilitation therapy can help as can improvements in health behaviors. “Once we’ve started some activation therapies and addressing these foundational issues, then we want to educate the family as much as we can,” she says. “I would stress nutrition, hydration and some level of physical activity, whatever they can do initially.”

OK we're all fucked. Until people capable of learning from experience have the opportunity to do the science thing instead of... whatever this is.

 

[Mij]

"The trauma of having a major, life-threatening medical condition can leave people functioning at less than their cognitive best, Rondeau adds".

So it's the 'trauma' of having an illness that is driving them to remain sick, and not the actual infectious pathology.

 

[chrisb]

Some journalist ought to interview Paul Cheney to discuss the cognitive impairment he found in his patients, what he reported to the CDC, and what they did about it.

 

[alex3619]

Somehow, in hindsight, such reaction as "what, you think you have actual fog IN your brain?" on and on for decades was not exactly smart. Then again, it was obviously very not smart at the time but in hindsight it's a special kind of very not smart.

The medicos proposing the psychobabble views are indeed not very rational. They are so special that [satire warning] they should have their very own institutions where they can propose all these things to their heart's content and never be bothered with the real world again.

 

[Fizzlou]

BBC video with Dr Shepherd saying LC and ME not the same. As per the above comments, how can he be so definite? Or was there some BBC editing?

In ME Essential Magazine P4, he writes under the subtitle post/Long Covid is not simply the same as MECFS " ..some people with Post/Long covid have an illness and symptoms that are almost certainly the same as PVFS that often precede a diagnosis of ME/CFS where an infection is believed to be the trigger. Some people with Post/long covid are being diagnosed with MECFS as their symptoms persist for more than 3-4 months.."

This magazine contains a report on the IACFS-ME 2020 conference including studies tracking the conversion to ME.

 

[rvallee]

Q&A: Neurological symptoms of COVID-19 remain an ‘evolving story’

https://www.healio.com/news/neurolo...-symptoms-of-covid19-remain-an-evolving-story

Worth reading in full, interesting discussion on broad neurological aspects.

There’s some concern, too, that you could look at some of the symptoms as similar to chronic fatigue syndrome, another cluster of symptoms that we don’t really understand. With chronic fatigue syndrome, one of the key theories has always been that there’s been exposure to some kind of infectious agent, whether it’s a post-Lyme infection or post-viral infection. Longer term, with COVID-19, we might see systemic inflammatory processes still smoldering in the background that somehow affects the brain’s ability to focus and do some of these complex, higher-level organizational things that are correlates of feeling like we’re able to focus and pay attention.

It's far more difficult to dismiss when medical colleagues echo the same facts as the patients:

What I’ve seen, in the patients I’m now starting to see in clinic, or people I know or colleagues who have confided in me about their symptoms, are issues with all of those symptoms, really – primarily difficulty concentrating and focus, the sense of fatigue, things that people colloquially refer to as ‘brain fog,’ persistent muscle aches, headaches, sense of taste and sense of smell not returning. I don’t dare speculate yet about the longer-term consequences.

We’re still in a phase, I think, where it’s accepted that people who have had COVID-19 may not return to work in a 100% productive manner. If we think about chronic fatigue syndrome, some patients who have that never return to work in a 100% productive manner. Those symptoms seem to last. We still really don’t understand what that is, or why it is, or what really to do about it. It becomes controversial because it’s not something we can see. We still don’t see, with chronic fatigue syndrome, objective evidence in ways that we all accept. One of my worries would be is if some of these COVID-19 symptoms don’t get better; what does that mean?

 

[rvallee]

Ultra-marathon runner, 40, reveals how he manages 'living hell' of long COVID

https://ca.news.yahoo.com/long-covid-management-support-152422792.html


Especially interesting on the "pushing through" mindset and how harmful it is.

After enduring mild fatigue, aches and brain fog with the infection itself, the symptoms became more severe over time.

Used to running ultra-marathons, Hanson continued to train, until the strain of vigorous exercise and home schooling his two children left him “struggling to get through a day”.

Things took a turn for the worse when Hanson was too exhausted to get out of the bath, leaving him lying in the water for hours.

Deciding to take matters into his own hands, Hanson came across a psychotherapist and self-professed “fatigue coach” online at the beginning of September.

She taught Hanson the importance of resting, with the father-of-two now lying on his bed for around an hour twice a day.

Hanson believes this scheduled downtime has enabled him to manage his long COVID, with the keen cyclist now able to ride his bike for up to three hours.

“I was relatively fine initially,” Hanson told Yahoo UK.

“I’m not unusual in that my symptoms deteriorated over time.

“I tried to continue with normal life, which I think was to my detriment.

“I was trying to be active – run, ski, cycle, do gym work.

“Being an athlete you teach yourself to ignore pain, which is the worst thing you can do with COVID [the disease caused by the coronavirus].”

“By April I couldn’t run anymore,” he said. “By May I just struggled to get through a day really.

“Some days I’d be sort of okay and other days phenomenally fatigued.

“I had a really hard day and had a bath. I couldn’t get out. I sat there for a number of hours then managed to summon the strength.”

“When I really started to struggle by May, my mental health completely fell apart,” he said.

“I didn’t know if I was going mad or developing ME [myalgic encephalomyelitis or chronic fatigue syndrome].

“My mental health went into a complete tailspin, the saving grace being that my wife is a psychologist.”

The father-of-two believes speaking to someone who grasped chronic fatigue was the first step in his recovery.

“A really key point was allyship; another human being who fully understood what I was going through,” he said.

Rose taught Hanson about the importance of pacing yourself throughout the day.

“You need to imagine your energy levels as a battery and use that energy throughout the day,” he said.

“For me, resting was [once] watching the telly or reading a book, but you need to include cognitive effort.”

Hanson began taking regular breaks, even if he felt energetic at the time.

“I would put myself to bed and close my eyes, possibly sleep, but really doing nothing,” he said.

“I would cut the lawn, have a rest, maybe cut the rest of the lawn later – prioritising my health rather than thinking about what needs doing.

“Also planning your rest rather than waiting until you’re tired, when it’s already too late.

“If you overdo it one day because you’re feeling good, 24 to 48 hours later you get massively taken down.”

 

[rvallee]

Comprehensive health assessment three months after recovery from acute COVID-19

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa1750/5998118

All patients discharged after COVID-19 from the Radboud university medical centre, Nijmegen, The Netherlands, were consecutively invited to a multidisciplinary outpatient facility. Also, non-admitted patients with mild disease but with symptoms persisting >6 weeks could be referred by general practitioners. Patients underwent a standardized assessment including measurements of lung function, chest CT/X-ray, 6-minute walking test, body composition, and questionnaires on mental, cognitive, health status and quality of life (QoL).

124 patients (age 59±14 years, 60% male) were included; 27 with mild, 51 with moderate, 26 with severe and 20 with critical disease. Lung diffusion capacity was below lower limit of normal in 42% of discharged patients. Ninety-nine percent of discharged patients had reduced ground-glass opacification on repeat CT imaging, and normal chest X-rays were found in 93% of patients with mild diseases. Residual pulmonary parenchymal abnormalities were present in 91% of discharged patients, and correlated with reduced lung diffusion capacity. Twenty-two percent had low exercise capacity, 19% low fat-free mass index, and problems in mental and/or cognitive function were found in 36% of the patients. Health status was generally poor, particularly in the domains functional impairment (64%), fatigue (69%) and QoL (72%).

This comprehensive health assessment revealed severe problems in several health domains in a substantial number of ex-COVID-19 patients. Longer follow-up studies are warranted to elucidate natural trajectories and to find predictors of complicated long-term trajectories of recovery.

 

[Ravn]

Kiwi Covid-19 long-haulers reveal 'heart-breaking' ongoing battles as group feels abandoned by health system

https://www.tvnz.co.nz/one-news/new...g-battles-group-feels-abandoned-health-system

May be a case of be careful what you wish for.

She [a long-hauler] says New Zealand needs to follow the example of other countries when dealing with the virus’ lasting damage.

“In the UK they’re going about it the right way, 40 clinics are being set up in there to track people who have had Covid-19 and ensure they are getting the specialist care they need, they are not expected to self-advocate like here in New Zealand,” Crossan says.

Well-meaning but he doesn't quite get it, does he:

Infectious disease and respiratory physician Dr Michael Maze - who lectures at Otago University - says GPs here have the skills to help once the condition is recognised.

"Perhaps the most important thing healthcare professionals can do is acknowledge the problem and walk the recovery journey alongside their patients.

"GPs have these skills and can help people with long-Covid. They manage the recovery of people from many severe and debilitating infectious illnesses already," he told 1 NEWS.

The article links to this Ministry of Health document: Guidance for the rehabilitation of people with or recovering from COVID-19 in Aotearoa New Zealand

It tries to cover all the different kinds of post-covid problems so this bit is sensible enough, albeit so vague as to be almost meaningless:

Some people may require a fatigue and energy management plan, others will require a return to sport or exercise programme.

But then it gets drowned in stuff like this (aimed generally, without distinguishing whether the patient's issues are lung damage or post-viral fatigue syndrome; risk of ME isn't mentioned, no surprises there):

Exercise is likely to be needed to overcome deconditioning therefore the person may be provided with an individualised exercise plan.

The person may require a strategy to manage fatigue and reduced exercise tolerance which would include a staged exercise or mobility plan.

https://www.health.govt.nz/system/f...g-covid-19-aotearoa-new-zealand-8july2020.pdf

 

[Andy]

Covid-19 patients with persistent symptoms who recover at home are MORE likely to have health problems three months later than those who were treated in ICU, study finds

Three months after infection, around 22 per cent of mild referred cases were still unable to complete a six-minute walking test, compared to just 16 per cent of critical cases.

https://www.dailymail.co.uk/science...worse-overall-health-long-term-going-ICU.html

 

[MeSci]

If we think about chronic fatigue syndrome, some patients who have that never return to work in a 100% productive manner.

Some? Rather an understatement!

 

[leokitten]

Some? Rather an understatement!

Most that have a CCC diagnosis can’t work.

 

[Dolphin]

https://register.gotowebinar.com/register/6393499997621332750

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

1. Wed, Dec 9, 2020 6:00 PM - 7:00 PM GMT

Show in My Time Zone
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 continue to 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. 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. 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 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.

 

[rvallee]

One difficult issue with ME is to explain the cases that don't have a clear infectious origin, or at least not as clear as the 80% of cases that do. I've long strongly suspected that it was likely due to mild cases that seem so benign as to be forgotten and a slower onset. I'm in that camp. There was that weird episode a few months before it all went to hell, some really weird insomnia and odd dizziness that came and went. I couldn't sleep at all for a night. Mostly that. It was weird but otherwise unremarkable since it mostly went away.

I've posted a few times with examples of testimonies that fit that pattern, people initially either barely ill or who have "recovered" from acute Covid, to the point of being able to function normally for weeks, sometimes months, before the typical ME course began. Sometimes there is little remarkable improvement in-between. Sometimes there is, creating a separation in the timeline that makes a remarkable event seem unimportant.

This trend continues unabated. I am pretty certain this explains most of those cases. An initial mild infection that resolves enough to feel back to normal, with a slower onset of ME symptoms happening later. Enough that people would normally not even think about it, given how usual it is to have such mild illness.

The sheer number of those cases, people who were "recovered" for weeks, months, before they developed the symptoms may be the missing link, if not for all cases certainly a solid % of them. Explaining a large % of a remaining 20% or so gets us very close to a full deck.

Of course there are still some cases that are harder to explain, from accidents, even pregnancies, or surgeries. But can anyone name a more iconic duo than pathogens and opportunistic infection, taking advantage of a weakened body state, especially if latent pathogens, of which there are many, play some role?

This is one example of many, I don't keep rigorous track, I couldn't even if I wanted to. But threads like this one are pretty representative of that pattern: Am I a long-hauler?. A pattern that would normally be missed entirely. It's so unremarkable otherwise. This is the stuff that completely breaks standard medical practice. It takes special care to notice it. Or a pandemic. Whichever comes first, I guess.

 

[ahimsa]

https://register.gotowebinar.com/register/6393499997621332750

Found this article about Karyn Bishof, the woman who created The COVID-19 Long Hauler Advocacy Project and who will be participating in this Dec. 9th webinar.

Here's the twitter announcement of the same webinar:

https://twitter.com/C19LH_Advocacy/status/1330980623805198337