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

[Kalliope]

Study Finds: Virtually all children infected with COVID-19 show sign of blood vessel damage, study shows

The news about coronavirus and children just got a lot worse. A troubling study by researchers at the Children’s Hospital of Philadelphia reports a “high proportion” of children infected with SARS-CoV-2 show elevated levels of a biomarker tied to blood vessel damage. Making matters worse, this sign of cardiovascular damage is being seen in asymptomatic children as well as kids experiencing COVID-19symptoms.

 

[rvallee]

CNN: Covid-19's effects include seizures and movement disorders -- even in some moderate cases, study finds - by Ryan Prior

Covid-19 can lead to neurological complications, including strokes, seizures and movement disorders, researchers have found.

The complications, which go well beyond cognitive impairment, can occur even in moderate cases, according to a study published Wednesday in the journal Neurology: Clinical Practice.

"These particular complications of Covid, and neurological disorders more generally, are about your ability to interact meaningfully with the world," said lead study author Dr. Pria Anand, an assistant professor of neurology at Boston University School of Medicine. "I think that's one of the unique and devastating things about this (virus)."

This either breaks FND or it breaks the patients.

There is an obvious counter-current in neurology, which accepts the premise of the severity of what gets cast under FND but doesn't think much of the psychobabble. Hopefully this gives reason the edge and pushes out the last bits of Freudian nonsense.

I have seen many reports of this, but it was hard to tell how prominent. This makes the... whatever... trial about "psychogenic" seizures especially dangerous. No doubt the leading minds at KCL will be trying to seize the opportunity.

Apparently there is a documentary coming out soon about the massive $1B brain project that was a kind of disaster. Hopefully this kicks the project right back in, incredible opportunity to measure symptoms and impairments along with imagery.

It's unclear whether some will get their life as they knew it back again.

"For so many people, that's just as important as the question of survival or not," she said.

If this is what it takes for medicine to take morbidity seriously, at least that much will be gained from this disaster. And about time.

 

[rvallee]

Hmmm...


Facing up to long COVID - Lancet editorial


https://www.thelancet.com/action/showPdf?pii=S0140-6736(20)32662-3

Robust data and scientific evidence are essential to answer these questions. Large and long-term cohort studies are urgently needed to help better understand the trajectory, complications, and biological mechanisms that drive the long-term health consequences of COVID-19.

Patient perspectives regarding terminology of symptoms and recovery should be incorporated into study designs to ensure clinically meaningful research questions and outcomes. Multidisciplinary, multicentre, and multinational collaborations and approaches to data collection are required. Digital services and systems should be able to collect data on symptoms in real time.

Many patients already feel dismissed or overlooked. Without clear clinical definitions of long COVID, and in the absence of either a diagnostic test or an effective treatment, health professionals are in a difficult position to help their patients. The slowly evolving knowledge of other poorly understood conditions (such as chronic pain and functional disorders) shows the risks for patients who feel that their symptoms are being diminished or ignored. Without clear acknowledgment, honest communication, and careful patient-centred research, patients face unsatisfactory outcomes. Such mistakes must not be repeated for long COVID.

Somehow actually managed to not name it while naming comparables. Amazing. Just straight up amazing. And talks about not repeating mistakes... without saying those mistakes should perhaps be fixed, maybe? No? Ok, then.

Second, discharged patients should have long term access to multidisciplinary health care, including rehabilitation services and telehealth, as well as social and financial support

Acknowledging the potential scale of the problem now and the complexities and variabilities of the disease course, and pressing for better research and care, could avoid years of struggle and mismanagement for patients with long COVID.

Yes, one would definitely not want to do something like that. Again.

This deserves a response. Many responses, actually.

 

[Andy]

Alternate version of the above article, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32662-3/fulltext

@dave30th @Jonathan Edwards Tagging you to make sure you see the U-turn that the Lancet seems to be committing itself to.

 

[Trish]

For Nina Muirhead's excellent letter about long COVID and ME/CFS see this thread: BMJ Rapid Response: Dr Nina Muirhead

 

[Sean]

other poorly understood conditions (such as chronic pain and functional disorders)

Surely if a condition is poorly understood, it cannot be safely classified as 'functional'?

 

[Andy]

Could Cognitive Behavioural Therapy Be an Effective Treatment for Long COVID and Post COVID-19 Fatigue Syndrome? Lessons from the Qure Study for Q-Fever Fatigue Syndrome

An increasing number of young and previously fit and healthy people who did not require hospitalisation continue to have symptoms months after mild cases of COVID-19. Rehabilitation clinics are already offering cognitive behavioural therapy (CBT) as an effective treatment for long COVID and post-COVID-19 fatigue syndrome based on the claims that it is effective for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—the most common post-infectious syndrome—as no study into the efficacy of CBT for post-COVID-19 fatigue syndrome has been published.

Re-analyses of these studies, however, showed that CBT did not lead to objective improvements in heterogeneous groups of ME/CFS patients, nor did it restore the ability to work. The group of patients with long COVID and post-COVID-19 fatigue syndrome, on the other hand, is homogeneous. We therefore analysed the Dutch Qure study, as it studied the efficacy of CBT in a homogeneous group of patients who developed Q-fever fatigue syndrome—which affects up to 30% of patients—after the largest reported outbreak of Q-fever, to see if CBT might potentially be an effective treatment for long-haulers after COVID-19 infection.

Our reanalysis found that the Qure study suffered from many serious methodological problems, which included relying on one subjective primary outcome in a study without a control group for the non-blinded CBT treatment group, using a post hoc definition of improvement, waiting 2 years before publishing their objective actometer results and ignoring the null effect of said results. Moreover, only 10% of participants achieved a clinically meaningful subjective improvement in fatigue as a result of CBT according to the study’s own figures.

Consequently, CBT has no subjective clinically meaningful effect in nine out of every ten patients that are treated with it. Additionally, the subjective improvement in fatigue was not matched by an improvement in disability, even though the disability was fatigue related according to the researchers. On top of this, CBT did not lead to an objective improvement in physical performance.

Therefore, it cannot be said that CBT is an effective treatment for Q-fever fatigue syndrome either. It seems therefore unlikely that CBT will reduce disability or lead to objective improvement in long COVID or in post-COVID-19 fatigue syndrome.

Open access, https://www.mdpi.com/2227-9032/8/4/552/htm

Thread about this study here:
healthcare: Could Cognitive Behavioural Therapy Be an Effective Treatment for Long COVID and Post COVID-19 Fatigue Syndrome?... - 2020 - Vink et al

 

[Kalliope]

Hmmm...


Facing up to long COVID - Lancet editorial


https://www.thelancet.com/action/showPdf?pii=S0140-6736(20)32662-3




Somehow actually managed to not name it while naming comparables. Amazing. Just straight up amazing. And talks about not repeating mistakes... without saying those mistakes should perhaps be fixed, maybe? No? Ok, then.


Yes, one would definitely not want to do something like that. Again.

This deserves a response. Many responses, actually.

The ME Association did a write up with statement from dr. Shepherd

The Lancet still doesn't seem to recognise the surge in post-COVID ME/CFS illness

One of Britain’s leading medical journals has still to acknowledge that one of the long-term medical consequences of Long COVID infection seems to be a surge in post-COVID ME/CFS-type illness.

ME Association medical adviser Dr Charles Shepherd takes issue with an editorial on Long COVID in this weekend’s The Lancet.
He says: “It is disappointing to find there is no information on the important clinical and pathological overlaps between ME/CFS and Long COVID that we have been highlighting since May.”

 

[Jonathan Edwards]

@dave30th @Jonathan Edwards Tagging you to make sure you see the U-turn that the Lancet seems to be committing itself to.

All I read was the usual blather. Where was the U turn? @Andy
They seem to deal with the ME activists by deliberately mentioning chronic pain instead, just to make sure that they don't stir up any more hornets.

Usual drivel about multidisciplinary care.

Nothing about how none of this would be relevant if the medical profession had insisted that the pandemic was dealt with properly at the start.

 

[rvallee]

The NY state department of health has included a bit about the relevance of ME on a newsletter about Long Covid.

https://www1.nyc.gov/assets/doh/dow...OxCFPsa7sFTXi_X14exI2YXNMA#nameddest=sequelae

Patients have described symptoms of exhaustion, post-exertional malaise, lethargy and difficulties with memory and concentration lasting for weeks following COVID-19 illness (Townsend 2020; Garrigues 2020). Even people who have recovered from mild COVID-19 report persistent “brain fog” (Kingstone Back to Top 2020). These symptoms are typical of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) that has been described in patients who survived infections of other coronaviruses such as Middle East Respiratory Syndrome (MERS) and Severe Acute Respiratory Syndrome (SARS) (Lee 2019; Hickie 2006; Perrin 2020). ME/CFS is a disease with no specific laboratory-based biomarker (Bested 2015). Diagnosis depends on meeting specific clinical criteria and excluding other potential causes.

Clinical Management The Food and Drug Administration has not approved drugs to treat ME/CFS.
● Focus care on alleviating symptoms, beginning with the most bothersome.
● Consider referral to rehabilitation physicians or specialists in ME/CFS.
● Rule out alternate causes. Consider referral to a neurologist or other appropriate specialist to rule out previously undiagnosed chronic disease or autoimmune neurologic disorders.

Not sure I think much of the notion of "alleviating the most bothersome symptoms". If we know how to do that reliably, it would have been common practice a long time ago.

 

[rvallee]

Thread on some ongoing LC studies:











The second-to-last one kinda perturbed me because I realized nobody had ever done such a basic thing as asking about the needs of ME patients. One would think that needs would be sort of pertinent to ask at some point in the course of several decades. Of course it's the fact that the needs are all practical things of daily living and thus your basic disability needs. As expected, yet someone not interesting, I guess.

 

[Arnie Pye]

There is a reference to brain fog in the quote in post #2919

One thing I've noticed when anyone describes brain fog...

If someone has never had it they don't seem to be able to grasp what it is. But once someone has developed it, temporarily or permanently, they never seem to have any problems identifying it.

 

[Andy]

All I read was the usual blather. Where was the U turn? @Andy
They seem to deal with the ME activists by deliberately mentioning chronic pain instead, just to make sure that they don't stir up any more hornets.

Usual drivel about multidisciplinary care.

Nothing about how none of this would be relevant if the medical profession had insisted that the pandemic was dealt with properly at the start.

It was more the principle committed to in this paragraph

First, health professionals must listen to patients to understand their concerns, validate their experiences, and manage their symptoms and comorbidities, referring patients as needed. Many patients already feel dismissed or overlooked. Without clear clinical definitions of long COVID, and in the absence of either a diagnostic test or an effective treatment, health professionals are in a difficult position to help their patients. The slowly evolving knowledge of other poorly understood conditions (such as chronic pain and functional disorders) shows the risks for patients who feel that their symptoms are being diminished or ignored. Without clear acknowledgment, honest communication, and careful patient-centred research, patients face unsatisfactory outcomes. Such mistakes must not be repeated for long COVID.

You are obviously right that it doesn't mention ME, possibly deliberately, but I would like to think that with what they write strengthens any arguments against the PACE trial, especially in light of the assessment from NICE of its quality. Perhaps I'm being too optimistic though.

 

[Snow Leopard]

There is a reference to brain fog in the quote in post #2919

One thing I've noticed when anyone describes brain fog...

If someone has never had it they don't seem to be able to grasp what it is. But once someone has developed it, temporarily or permanently, they never seem to have any problems identifying it.

But "brain fog" doesn't mean the same thing to all people.

Someone I knew with bipolar disorder described their "brain fog" as more like a high level of background thought or noise, that made it hard to focus. Their experience of "brain fog" was exacerbated when feeling a state of anxiety as this increased the 'noise'.

That isn't how I experience it. For me "fog" isn't noise, so much as absence - I'm expecting a response that doesn't happen at all, it's like the thought just fades into nothingness. The common link is the difficulty focusing/concentrating.

 

[Jonathan Edwards]

Without clear acknowledgment, honest communication, and careful patient-centred research, patients face unsatisfactory outcomes. Such mistakes must not be repeated for long COVID.

I am afraid I read this as:
Make sure you keep telling these people their illness is 'real' (they like that).
Sound sincere even if its tough.
Make everything qualitative and tailored so that you don't need to worry about any proper evidence.
It is important not to let these patients make us look stupid again.

 

[JemPD]

That isn't how I experience it. For me "fog" isn't noise, so much as absence - I'm expecting a response that doesn't happen at all, it's like the thought just fades into nothingness. The common link is the difficulty focusing/concentrating.

absolutely.

I also frankly find it frustrating when people talk about 'difficulty concentrating' because that is something i experience when anxious - easily distracted, cant keep my mind on what i'm supposed to be doing & so just unable to pay attention... Which is qualitatively 'chalk & cheese' from ME cognitive issues.
Mental health difficulties with concentrating/focus - ie what i have experienced in PTSD & depression, are the experience of brain/cognitive function working normally but a total inability to force it to 'go' or to keep it on task - like driving a car with the accelerator pedal & steering column disconnected but the engine still working.
ME cognitive problems are like half the engine missing, so whether the accelerator/pedal or steering wheel work is irrelevant. They are like being drugged to the point of being unconscious while still awake. It's like someone scooped out various areas of brain matter & stuffed the holes with cotton wool.

 

[oldtimer]

It feels like a continuum to me. At best I can make myself think for short periods with extreme effort. At worst I literally can't trust myself to count on my fingers let alone add say 7 and 8 in my head.

At no time am I able to comprehend analogies and relate them to what they are trying to make simpler. It's an added layer of thought connections that are impossible to corral.

I'm sorry to hear @JemPD that half the engine fell out of your car.

 

[Arnie Pye]

But "brain fog" doesn't mean the same thing to all people.

Someone I knew with bipolar disorder described their "brain fog" as more like a high level of background thought or noise, that made it hard to focus. Their experience of "brain fog" was exacerbated when feeling a state of anxiety as this increased the 'noise'.

I wasn't aware of that.

That isn't how I experience it. For me "fog" isn't noise, so much as absence - I'm expecting a response that doesn't happen at all, it's like the thought just fades into nothingness. The common link is the difficulty focusing/concentrating.

That's more like how I experience it.

 

[Mij]

I don't experience 'brain fog' as described by others, but my cognitive issues does include focusing/concentrating. I feel ill/nauseous during this time. It feels like a lack of power/energy that isn't available to go on until I lie down, blank everything out and rest for at least an hour.

 

[Sly Saint]

What Now: POST COVID-19 Syndrome, Long Haulers & Multi-System Inflammatory Syndrome (MIS)

Post COVID-19 Chronic Fatigue

One of the most common symptoms reported in COVID-19 survivors is fatigue. (20) In a study completed in Dublin, more than half of recovered COVID-19 patients experienced post-viral fatigue syndrome, regardless of the severity of their initial COVID-19 symptoms. (21) Fatigue, along with many other symptoms of Post COVID syndrome, resemble Chronic Fatigue Syndrome, also known as Myalgic Encephalitis (ME), a chronic condition characterized by at least 6 months of fatigue, in addition to other symptoms such as sore throat, headache, muscle pain, joint pain, post-exertional fatigue, sleep disruption, cognitive disturbance (or ‘brain fog’), and secondary anxiety or depression. (22,23)

CFS/ME has long been misunderstood, but recent research suggests viral-mediated neuroinflammation, (24) reduced ability for cells to utilize ATP, a small molecule that provides energy to our cells; (25) and viral-mediated gene up regulation may be play a role in pathogenesis. (26) Many patients diagnosed with CFS/ME report that their illness began following a bout of an acute infectious disease, often mononucleosis or the flu. (27)

Chronic fatigue following a viral infection is not unheard of; studies of SARS-CoV-1 patients reported chronic fatigue for years following infection. (28, 29) Persistent fatigue has also been noted following cases of H1N1, (30) and the West Nile virus. (31) Although this link has been made, the mechanism remains murky.

But CFS/ME may hold the key to understanding Post COVID syndrome, particularly with respect to lymphatic involvement. Lymphatic drainage from the brain occurs via a space surrounding the olfactory nerves, through the cribriform plate, into the nasal mucosa. (32) A proposed component of the pathogenesis of CFS/ME is a disturbance in lymph drainage along this pathway, and subsequent build-up of pro-inflammatory cytokines within the central nervous system.(33, 34) Without adequate drainage, various molecules can accumulate within the brain.

If these molecules are pro-inflammatory, chronic inflammation within the nervous system can ensue, leading to detrimental effects on the nervous system. SARS-CoV-2 is suspected to penetrate the nervous system via the neuro-mucosal interface of olfactory mucosa, which may explain the anosmia (loss of smell) associated with COVID-19. (35) As a result, SARS-CoV-2 may disrupt lymph drainage from the brain, leading to an accumulation of pro-inflammatory cytokines, similar to the proposed mechanism of CFS/ME. (36,37) Inflammation triggered by these cytokines could instigate short-term symptoms, such as fever, as well as long-term symptoms, such as chronic fatigue, altered sleep-wake cycle, and cognitive dysfunction, symptoms characteristic of Post COVID ‘long-haulers’. (36)

Unfortunately, symptoms of CFS/ME patients were initially believed to be psychosomatic when doctors first identified this condition more than 70 years ago, and this stigma remained until fairly recently. The lack of a formalized test to diagnose this condition hindered clinical progress, as diagnosis relied solely on self-reporting of symptoms.

However, research connecting viruses as triggers for CFS/ME has helped begin the process of de-stigmatization. CFS/ME may provide the key to understanding Post COVID Syndrome. In turn, the attention Post COVID syndrome has garnered may finally provide solace for the CFS/ME community that was largely neglected by academia, or worse - told to ’try to exercise’ or go to psychotherapy, in order to feel better.(27, 38)

https://integrative.ca/blog/what-no...aulers-multi-system-inflammatory-syndrome-mis