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

I’ve just come across this series of videos on YouTube which looks like a group of NHS doctors who have come together and are offering private support for patients with long covid symptoms. They have called themselves ‘OneWelbeck’.

Although some of them are honest that we just don’t know, they largely dismiss the issue of long term ongoing symptoms (say past a year) and state when extrapolating from data on previous coronavirus outbreaks that the “majority of patients do recover”.

As a whole it’s very promotional and empowers the patient to recover with guidance from a multidisciplinary team. Where have we heard that before!

https://www.youtube.com/watch?v=A2VYC6BmFSg

The autonomic dysfunction videos are particularly enlightening, not...

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

 

Opinion piece by a Swedish professor of infectious diseases. (He's a member of the Swedish ME/CFS patient organisation's scientific advisory board.)

Post-covid ger chans till viktig forskning
https://www.dagensarena.se/opinion/post-covid-ger-chans-till-viktig-forskning/

Google Translate, English

 

Vaccines and Long COVID: Top NIH Leaders Weigh in at Neurology Meeting
— Can research on long COVID help people with chronic fatigue?
by Judy George, Senior Staff Writer, MedPage Today April 21, 2021


https://www.medpagetoday.com/meetingcoverage/aan/92209

 

Hm, this sounds like before covid-19, we had no idea what other viruses could trigger ME/CFS.

Also, about long covid Koroshetz said: "We do know, unfortunately, that it's not a minor problem," he added. "We also know now that the hope that this might be something like infectious mononucleosis where it might take you six months to recover and then you're going to be fine -- there's certainly evidence now that for some people that's not happening; that people still are having trouble out past six months. So this is a real challenge to us."

Glad to hear I'm fine!

 

I'm not sure how much it's going to help to know what the virus is. It will save some wasted time that researchers would have spent looking for other pathogens, but that's about it. EBV has been known for decades to cause postviral fatigue syndrome in a fraction of people who get ill with mononucleosis, yet we are none the wiser as to why it happens. Clearly research in the past has been looking at the wrong things and if the same mistakes are repeated, I'm afraid the result will be no different.

 

This is better than it used to be but to pretend that this is the first time we know the causative agent is a blatant lie. Can we just stop it with all the lies here? I understand it's to deflect legitimate blame on medicine's massive failure but this is exactly how it failed to begin with.

There have been many chances at a breakthrough. The NIH rejected them all. As did every last medical and public health institution in the world. Those PR exercises are frankly repulsive, even when they manage to give the right message, but they did that with us as well so...

 

New Statesman "Long Covid" has spurred a big research effort, which promises to do more than help sufferers by Phil Whitaker

quotes:

The other group of illnesses are the “functional” conditions. In these, blood tests, scans and biopsies all appear normal; no objective cause for the patient’s symptoms can be identified. Common examples include irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

The term “functional” is often taken to mean that, because there is no identifiable organic pathology, the symptoms must arise from ill-understood disturbances in otherwise healthy organs or bodily systems.

...

The effort to elucidate the condition will help not only LC sufferers, but will also yield insights into other illnesses such as CFS/ME and fibromyalgia. As the science evolves, the artificial divide between organic and functional illness should eventually be broken down.

 

Hmm, perhaps, but it's often used to mean that the patient is, or is assumed to be, thinking in a way that the person using the term functional doesn't agree with.

That sort of use is the reason why there is seen to be a divide between organic illnesses and those labelled functional.

 

One of the big problems is pretty much that it means whatever the person using it wants it to mean. To some it is a rational interpretation based on temporary ignorance, to others it means the usual tropes of lazy malingering whatever. It plays the same role as "quantum" in various pseudosciences, a generic word that can be substituted for anything, including pure imagination.

In the "scientific" literature it is explicitly used as equivalent to hysteria, not quite the Freudian kind but 90% identical in all regards. So everything else is just branding. And when professionals are tweaking branding about what they claim is a scientific construct, well, we are obviously not dealing with a scientific construct. Which should end the debate, certainly one about using this in actual practice. At best it should be kept in the labs for several decades, it's not as if anything will come out of it anyway.

As long as lies dominate the debate, it's not a debate worth having. Let them debate in their echo chamber, but they need to leave us alone and respect consent, they have serious difficulty accepting that no means no and that's always a very bad thing, so much worse with a complete statutory power imbalance that has, in effect, equivalent power to the law.

 

My bold...

I've posted this before, so this isn't the first time I've made this point. It is an n=1 anecdote.

This idea that "there is no identifiable organic pathology" suggests that doctors all do their utmost to look for all possibilities and find nothing. But what they really mean is that there is no pathology that they want to spend money on looking for. So, I was diagnosed with IBS repeatedly throughout my 20s, 30s and early 40s. I may even have got my first diagnosis of IBS in my teens but I don't remember for sure. The diagnosis of IBS was based purely on a recitation of my symptoms and where my worst pain was, and the fact that nothing startling showed up on blood tests. I did get a barium enema in my 40s which showed nothing, and that was when the word "functional" in a medical context first came into my life. I didn't know what it meant at the time.

But eventually, I got given a laparoscopy (I still don't know how this happened - it was, frankly, a miracle) and they discovered that my bowel was anchored to my abdomen by dense adhesions. What they were actually looking for was endometriosis lesions, and since they apparently found none where they were looking I was judged to have been someone who got surgery under false pretences. They had to free up these adhesions in order to look for endometriosis lesions and had accidentally created an almost complete cure for my IBS by doing so.

I remember going to a post-op appointment a few weeks after the surgery, walking in to the doctor's office and he was scowling ferociously at me. I could tell he was really furious with me. But I couldn't understand where all the anger was coming from, and had to tell him that the pain I had before the surgery was now just a pale shadow of it's former self. And the number of episodes of any level of pain at all had dramatically reduced too. So this surgeon had almost completely cured my IBS and didn't know it. I really put him on the back foot when I told him that and he got very flustered. The surgery maintained my "almost complete cure" for many years, and I still don't have the same level of pain that I had previously in the area that was operated on all those years ago. I can practically guarantee though that one of my list of diagnoses in my medical records is still going to be "IBS". Why waste a diagnosis that can allow a doctor to dismiss the patient without spending any money?

 

So blood tests are negative and there is no identifiable pathology. All that means is that medicine has not identified a way to recognise the pathology and has not developed a diagnostic test.

For one thing, that is not unusual, migraine is still a symptom based diagnosis. Polymyalgia rheumatica has no diagnostic test but if treating with steroids helps that's probably what it is.

So the answer to "functional" disease is to put research money into finding the pathology and blood tests not to fund more and more studies of an emotional problem that only exists in the imagination of a cult of medics.

 

One of the larger studies so far but it doesn't really add much that wasn't known so unsure if it deserves its own thread. Although one of the findings seems to be a significant mortality for months after hospital discharge, but that was also reported earlier, so this is confirmation.


High-dimensional characterization of post-acute sequalae of COVID-19

We show that beyond the first 30 days of illness, people with COVID-19 exhibit higher risk of death and health resource utilization. Our high dimensional approach identifies incident sequalae in the respiratory system and several others including nervous system and neurocognitive disorders, mental health disorders, metabolic disorders, cardiovascular disorders, gastrointestinal disorders, malaise, fatigue, musculoskeletal pain, and anemia.

We show increased incident use of several therapeutics including pain medications (opioids and non-opioids), antidepressants, anxiolytics, antihypertensives, and oral hypoglycemics and evidence of laboratory abnormalities in multiple organ systems.

Analysis of an array of pre-specified outcomes reveals a risk gradient that increased across severity of the acute COVID-19 infection (non-hospitalized, hospitalized, admitted to intensive care). The findings show that beyond the acute illness, substantial burden of health loss — spanning pulmonary and several extrapulmonary organ systems — is experienced by COVID-19 survivors. The results provide a roadmap to inform health system planning and development of multidisciplinary care strategies to reduce chronic health loss among COVID-19 survivors.​

Pre-print: https://www.nature.com/articles/s41586-021-03553-9

Abstract is a bit rambly and unfocused so (numbers are reversed, though, 70K non-hospitalized and 13K hospitalized):

https://twitter.com/user/status/1385250702209945600

 

My bold

When results of blood tests are judged to be normal, I always assume this just means that the results land somewhere in the reference interval for the test. If someone has a test done with a result of X and the reference interval is B to C, then doctors declare X to be normal if it lies between B and C. But in quite a lot of tests the difference between B and C is absolutely huge. Doctors can declare someone with a test result between B and C to be "normal", even if C is can be more than 30 times what B is. Another problem is that when reference intervals start to become elastic (to save money and allow the patient to be dismissed), doctors sometimes declare a result to be "fine" if it isn't in the reference interval but is a bit below or a bit above.

The other thing that sometimes happens, is that doctors make results "stretchier and stretchier" in comparison to healthy people, so that what they deem to be normal differs hugely from what the average healthy person will have. In the end doctors end up with no clue what type of results a truly healthy person would actually have and start to declare hugely out of range abnormal results as "normal".

Edit : Changed "out of range" to "abnormal".

 

@rvallee

Your graphic from Eric Topol's tweet has the bottom chopped off and I think the missing info is necessary to understand what is being shown, so I've posted it again in the hope it can be seen in its entirety. But even then I'm not certain I understand what is being shown. Is column 1 showing the health problems that patients had before catching Covid or what health problems they had after getting a positive test or after treatment ended? Because I'm sure that very few people became obese (for example) as a result of catching Covid, so I'm not clear on which population of patients is being depicted in column 1.

My understanding of these types of plots of data is that the red dashed line going down the picture represents "normal" or "average" people, and if the horizontal lines in green, orange and purple (which make me think of Star Wars TIE fighters) cross that red line then they are not statistically significantly different from "normal" or "average". The further right the little fighters are the further from "normal" or "average" the result is. So, in that sense, the results may be interesting but they are hardly surprising - they seem to show that unhealthy or sick people who catch a serious virus will get a lot sicker than people who aren't sick before they catch the virus.

 

MEpedia can sometimes have great articles that I can refer people to. Somebody is dealing with a media enquiry and asked me for suggestions. I was about to recommend MEpedia, but the article actually looks quite out of date:
https://me-pedia.org/wiki/Long_COVID
Just in case anyone was inclined to try to update it.

 

Coronavirus Does Not Infect the Brain But Still Inflicts Damage

https://www.cuimc.columbia.edu/news/coronavirus-does-not-infect-brain-still-inflicts-damage

A more surprising finding, Goldman says, was the large number of activated microglia they found in the brains of most patients. Microglia are immune cells that reside in the brain and can be activated by pathogens.

“We found clusters of microglia attacking neurons, a process called ‘neuronophagia,’” says Canoll. Since no virus was found in the brain, it’s possible the microglia may have been activated by inflammatory cytokines, such as Interleukin-6, associated with SARS-CoV-2 infection.

...

The activated microglia were found predominantly in the lower brain stem, which regulates heart and breathing rhythms, as well as levels of consciousness, and in the hippocampus, which is involved in memory and mood.​

Paper "COVID-19 neuropathology at Columbia University Irving Medical Center/New York Presbyterian Hospital" discussed in this thread: https://www.s4me.info/threads/covid...resbyterian-hospital-2021-thakur-et-al.20287/.

 

This is trending on Twitter. However, the Twitter event currently doesn't give any more info.

 

Linked to this new article: https://www.thetimes.co.uk/article/...=Social&utm_source=Twitter#Echobox=1619284754

Looks like largely a description of the problems people are facing. Includes a cautiously presented recovery story from an MP:

 

A few days ago Emmanuel Macron tweeted about Long Covid

Google translated:

Not everything is known about these persistent signs and symptoms of “long COVID”. And yet, a part of our fellow citizens already live with it. Research is underway and our health system is adapting. We need to learn, recognize and care for patients.

All over France, hospital staff are adapting and innovating to take care of “long COVID” patients. Their work is essential, it helps us to better understand the different forms of the disease. Thanks to them, we know her better every day.

 

Definitely not the case. Most of them are in fact quite furious that nothing significant is being done and denial remains the standard everywhere, they sure as hell don't accept that. Why put such false words in their mouths when they are clearly saying the exact opposite? They have to endure it, no question about that, but they absolutely do not "accept" that this is how it should be.