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

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.

 

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.

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.

 

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.

 

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.

 

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

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

 

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.”

 

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.

 

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

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.

 

Thread on some ongoing LC studies:

https://twitter.com/user/status/1337116860777705474


https://twitter.com/user/status/1337116861666897922


https://twitter.com/user/status/1337116862568669185


https://twitter.com/user/status/1337116863927562241


https://twitter.com/user/status/1337116865185910784


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.

 

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.

 

It was more the principle committed to in this paragraph

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.

 

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.

 

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.

 

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.

 

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.

 

I wasn't aware of that.

That's more like how I experience it.

 

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.

 

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

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