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

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

 

@rvallee, apologies my French is virtually non existent. Does that list above include sensitivity to noise, light, touch etc? Thank you.

 

In the apparent absence of rvallee, yes, to noise and light, anyway (it's under "Yeux").

 

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.

 

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.

 

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.

 

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.

 

It will be named "Chronic Covid Syndrome'.

 

https://twitter.com/user/status/1335239335336153090

 

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

 

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

 

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.

https://www.youtube.com/watch?v=zs4KfmUbiqg

 

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.

 

Interesting article:

The Potential for COVID-19 Long Hauler Research To Explain ME/CFS – Will it Pan Out?
https://www.healthrising.org/blog/2020/12/01/long-haulers-chronic-fatigue-syndrome-potential/

 

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.”

 

Someone on the Covid long haulers sub-reddit has been doing news round-up and this week's is pretty beefy.

Covid Long Haulers News & Articles Roundup! (Week of 11/28-12/5)

 

Bit odd guide from Johns Hopkins on recovery from Long Covid, advising exercise rehabilitation, unless experiencing LC symptoms. Which... OK. I don't think they understand much here, basically this is typical pulmonary/ICU rehabilitation that is inadvisable for LC but this is specifically for LC so... weird.

https://www.hopkinsmedicine.org/phy...n/_files/impact-of-covid-patient-recovery.pdf

 

Programme for a Long Covid forum happening this week, December 9-10. Doesn't seem to be any red flags in terms of presenters and topics.

https://www.glopid-r.org/wp-content/uploads/2020/11/long-covid-joint-research-forum-2020.pdf

 

(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

OK this is really interesting:

Perhaps the whole "post-" terminology is a bit... flawed.

Actually, you definitely can.

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Does that mean that patients would still be infectious?