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

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A study running in France has published first results of their ongoing study of Long Covid. Nothing ground-breaking but they went pretty wide with symptoms reporting, compared to most studies, and generally found the same (very) long list of symptoms found in earlier patient-led research. 600 participants, 50 symptoms reported.

https://www.aphp.fr/contenu/compare...-la-recherche-de-lap-hp-presente-les-premiers

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rvallee said:
A study running in France has published first results of their ongoing study of Long Covid. Nothing ground-breaking but they went pretty wide with symptoms reporting, compared to most studies, and generally found the same (very) long list of symptoms found in earlier patient-led research. 600 participants, 50 symptoms reported.

https://www.aphp.fr/contenu/compare...-la-recherche-de-lap-hp-presente-les-premiers
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Many doctors have told me that "real diseases" don't present with a large number of wide-ranging symptoms like this. In fact, such conditions are usually "all in the head" of the patient, ie, these symptoms are all "imaginary". Apparently the patient conjures up these imaginary symptoms by "unduly focussing on their symptoms". (If this doesn't make sense to you, you clearly do not have what it takes to become a doctor).

No doubt covid longhaulers will be reassured to know that their long list of symptoms means that they don't have a real illness. After some "evidence-based" therapy that will will teach them to ignore their imaginary symptoms they will soon be able to resume their lives.
 
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The idea that lots of symptoms means an illness is psychological is very widespread but a few moments thought shows that it is nonsense. Any apparent validity is because most diseases are diagnosed by a few main symptoms and the rest don't get much attention.

Think about undiagnosed diabetes; the symptoms would be thirst, frequent urination, loss of weight or weight gain, fatigue, blurred vision, itches, rash on face, pain in feet, numb toes, slow healing of wounds, thrush, fruity smelling breath and more as secondary complications develop.

It is possible to list lots of symptoms for most diseases with some on them being important to patients but ignored by doctors.
 
Dolphin said:
Photophobia which seems to be the medical term in general is an odd one as it suggests a phobia to light which could give the wrong impression particularly for people badly affected by the symptom whose behaviour could appear particularly odd.
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In medical terms photophobia means extreme sensitivity to light. I used to get migraines years ago, my medical record listed 'photophobia'. It is a bit odd though.
 
Haven't listened to, no transcript or accompanying text. Unsure given the "new condition" of POTS. Discriminating and mocking for decades does not make something "new" once it starts getting some attention when it grows out of control because of extraordinary circumstances. It just means the discrimination and mockery was completely out of place and unprofessional and this needs serious course correction.

Anyway...


New Condition Sheds Light On Plight Of COVID-19 'Long Haulers'

https://www.npr.org/2020/12/05/9434...heds-light-on-plight-of-covid-19-long-haulers

NPR's Scott Simon talks to Lauren Stiles, the president of Dysautonomia International, about a new diagnosis that could answer why some people still suffer symptoms months after contracting COVID-19.
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Deleterious Outcomes in Long-Hauler COVID-19: The Effects of SARS-CoV-2 on the CNS in Chronic COVID Syndrome

https://pubs.acs.org/doi/10.1021/acschemneuro.0c00725

Amid our understanding of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and the mechanisms involved in the causation of acute-phase coronavirus disease (COVID-19), we have come across clinical cases that have been shown to run a protracted course of COVID-19 with complex clinical findings related to organ systems in general and the CNS in particular that deserve to be addressed in the COVID long-haulers, for which the more clinically-related term chronic COVID syndrome (CCS) has been coined recently. An in-depth understanding of the mechanism that forms the basis of CCS and neurological deficits in CCS is needed as this can help in determining the management of cases of neuro-COVID, which is emerging as a less lethal but more disabling disease state. This Viewpoint highlights this syndrome, the possible pathogenetic pathways involved, and the treatment approaches that can be taken to help manage COVID long-haulers in CCS.
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New clinical update from Dr. Daniel Griffin in This Week In Virology.
Towards the end, at 29.40 minutes in he is questioned about long Covid and what can be done about it.

He says it's recognised that this is a phenomenon and talks about the website United in Research.

We’re going to basically create a Covid positive community. And we’re going to basically give people a way to go on the web to register as citizen scientists and to basically participate in the different trials and the different approaches to how do we understand what’s going on with people who continue to suffer from Covid. And we’re going to be following serologies, there’ll be questionnaires, there’ll be all kinds of biomarker analysis. There’s going to be a lot of individuals looking at this. I will say at this point we still have sort of primitive where we focus on symptoms, but this is going to be moving hopefully to better therapeutics. But there are thousands and thousands, hundreds of thousands, individuals suffering with this post Covid syndrome and we’re committed to finding out this.

 
rvallee said:
Haven't listened to, no transcript or accompanying text. Unsure given the "new condition" of POTS. Discriminating and mocking for decades does not make something "new" once it starts getting some attention when it grows out of control because of extraordinary circumstances. It just means the discrimination and mockery was completely out of place and unprofessional and this needs serious course correction.
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POTS population is 90% female. They don't yet how it will affect the long-COVID population because COVID affects children and adults in a different way.
 
Healio: Fauci: COVID-19 can be crushed, 'but it's not going to happen in a few months'

Long-haulers might be individuals who are infected and symptomatic, taking weeks to recover, but never require hospitalization, Fauci said.

“That group has a persistence of symptoms and signs that are characterized by profound weakness, shortness of breath, sleep disturbance, inability to concentrate or ‘brain fog,’ but when you look at objective laboratory data, you don’t find anything,” he said. “It has something about it resembling, but different from, myalgic encephalomyelitis/chronic fatigue syndrome.”

Fauci said this group needs to be distinguished from patients who might have acute respiratory distress syndrome, microthrombi in organs or lung infiltrates that heal with scarring, who ultimately improve virologically.

“If you look at them, they have decreased diffusion capacity, stroke volumes in their heart, predisposition to arrhythmias,” he said. “That’s not ‘post-COVID syndrome.’ That’s the residue of damage to organ systems. I think as we study this more, we’re going to see these are two different components. The only way to know it is ... by looking at large cohort studies to see the nature of this symptomatology and if it is associated with some identifiable markers.”
 
(Letter to the editor, Journal of Infection)

Clinical, virological and imaging profile in patients with Persistent or Resurgent forms of COVID-19: a cross-sectional study

https://www.sciencedirect.com/science/article/pii/S0163445320307623

We established in May 2020, in COCHIN HOTEL DIEU Hospital of Paris, an out-patient clinic for adult patients with persistent and/or recurrent symptoms after a confirmed COVID-19 and performed a cross-sectional monocenter survey on consecutive patients
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Among 70 consecutive patients with a documented SARS-CoV-2 infection, median age was 45 (range 23-75), 78.6% were female.
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OK this is really interesting:
A symptom-free interval was noted between the first episode and the following episodes in 32/65 cases with a mean interval of 25 days (SD=20). During the prolonged phase, 54.3% patients had symptoms that persisted from the 1st episode, 50% that disappeared and reappeared and 75.7% presented new symptoms that were absent during the 1st episode appeared.
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Characteristics of late symptoms could be classified in 7 main categories (Figure 1):
Major fatigue or exhaustion for 51 patients (72.9 %)

Neurological symptoms, in 54 (77.1%).Those were divided into neuro-cognitive disorders (such as memory, mood or attention disorders), headaches, sensory disturbances (such as balance disorders, tingling, burning sensations and neurogenic pains), or others (swallowing or speech disorders, thermoregulation disorders).

Cardiothoracic symptoms in 50 patients (71.4%): chest pain and tightness, palpitations, cough, dyspnea.

Muscular or/and articular pains for 20 (25.7%).

ENT symptoms: persistent or recurrent anosmia, hyposmia and/or dysgeusia for 21 (30%).

Gastro-intestinal symptoms for 17 (24.3%): diarrhea, nausea/vomiting, epigastric or abdominal pain.

Skin and vascular symptoms in 10 (14.4%).​
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Other symptoms included odynophagia, low-grade fever, rhinorrhea, conjunctivitis and deafness. The majority of the patients (n=63, 90%) had more than three category of symptoms. The course of symptoms was intermittent in 42.9% of the cases, alternating symptoms-free intervals of a few days or hours with sudden relapses, often worsening after physical or intellectual exercise.
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Perhaps the whole "post-" terminology is a bit... flawed.
During the prolonged COVID-19 phase, the SARS-CoV-2 RT-PCR was still positive in rhino pharyngeal swabs in 11/43 patients and remained positive more than 3 months for 3 subjects (Supplementary Fig S1). SARS-CoV-2 serology was positive in most of the cases (n=64/69, 92.8%).
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It was striking that these patients had essentially made a benign form of COVID-19 and consisted mainly of young women. The phenotype was dominated by a major fatigue, associated with neurological and cardiovascular symptoms.
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A last hypothesis is that of a condition similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). After SARS epidemic in Hong Kong, a follow-up study of 233 patients infected with SARS showed that 27% met the diagnostic criteria for ME/CSF9. A subset of patients with prolonged COVID-19 symptoms have symptoms that overlap with ME/CFS.
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Finally, we cannot exclude at this stage the possibility of a post-traumatic stress induced by the COVID-19 pandemic and/or exacerbated by these symptoms themselves.
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Actually, you definitely can.
One strength of this study it that it focused on patients tested positive for SARS-COV-2 infection, in order to reduce the risk of attributing to COVID 19 symptoms that could be of psycho somatic origin.
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1-s2.0-S0163445320307623-gr1.jpg

Figure 1. Distribution of the symptoms of the acute COVID-19 phase versus those of the prolonged -COVID phase in 70 patients presenting with persistent and/or remerging late symptoms of COVID after a confirmed SARS-CoV-2 infection. Legend of the figure: 1. sensory disturbances include balance disorders, tingling, burning sensations and neurogenic pains. 2. mucco cutaneo signs include acrocyanosis, rash, flash face, eczema, tongue swelling, pruritus, spontaneous ecchymosis. 3. other cardiological signs include sudden malaise, desaturation. 4. cognitive psycho disorders include memory, humor or attention disturbances and disorientation. 5. other neurological signs include or swallowing disorders, thermal dysregulation and speech
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