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

Ableds have such overly romanticized ideas about medicine. "Surely they can't ignore this many sick people", they say. I mean it's not as if it's already the case or anything like that. That would be scandalous, right? Except it's not considered a scandal, therefore it's not happening. And so couldn't possibly happen. Certainly not again. Certainly not for the very same reasons with the same motivations and even involving the same people. Nope, unthinkable. QED.


Long Covid cannot be ignored – it’s vital we determine its true scale in society
https://www.independent.co.uk/news/science/long-covid-uk-cases-latest-b1897453.html

Although it kind of answers itself here:

For the NHS in particular, the burden of long Covid – if larger than feared – could prove to be devastating. The ONS estimates that some 380,000 people have been living with the syndrome for a year, with a further 600,000 or so suffering from the condition for less time. It’s unclear how the NHS intends to assess, treat and support these individuals moving forward, with its dedicated long-Covid clinics already in high demand.​

If it's unclear how they intend to assess, not do something, anything, just assess, sometime maybe in the future, that's because they have no intention of doing anything.

It's been 16 months. The time to assess was 12+ months ago. We are even passed the time to react too late since to do anything useful would first require to undo the counterproductive things that have been done with the intent to be counterproductive (flipping reality in one's mind tends to do that). At least where the NHS is concerned.

There is simply no reaction at all, just the same old indifference and failed patterns. This is like people discovering that police exist to enforce the law, not to help people and serve the community, that's just PR. No one has to do anything, certainly not here. People have to choose to do something, and so far they keep choosing no.

 

So, the NYT published an article arguing that people becoming chronically ill from Covid is a risk they tolerate. Who's "we"? Well, those to whom it doesn't happen, obviously. As long as it happens to others, get fracked, basically. Can't miss a champagne brunch for that.

Really missing an understanding that those to whom this happens are dropped dead like they never even existed. Or maybe they do understand it.

https://twitter.com/user/status/1423486748085170190


There are risks we tolerate. People get injured and die in car accidents every single day. And although some will never get the medical care and support they need, most will. It's completely different to tolerate a risk when those victim to that risk are left to fend for themselves on purpose.

 

https://twitter.com/user/status/1423901434794463235

 

Not very compelling or informative but I really like Hari's questions and framing, such a great news anchor.

https://www.youtube.com/watch?v=zZDWh0IpX58

 

Especially relevant as the Lancet study is making the rounds as "good news". It's kind of interesting seeing Dr Gurdasani being attacked by people who like what the study concludes. So much interpretation goes into medical evidence. In some cases it's nothing but interpretation. Medicine without science is just as dysfunctional and irrational as politics, too many opinions, too much confidence in opinions, too much certainty in one's intuitions.


Poorly designed study minimises long COVID in children.
https://vip.politicsmeanspolitics.c...igned-study-minimises-long-covid-in-children/

 

The New York Times 'This Is Really Scary': Kids Struggle With Long Covid

quotes:
“The potential impact is huge,” said Dr. Avindra Nath, chief of infections of the nervous system at the National Institute of Neurological Disorders and Stroke. “I mean, they’re in their formative years. Once you start falling behind, it’s very hard because the kids lose their own self-confidence too. It’s a downward spiral.”
...

Dr. Amanda Morrow, co-director of the pediatric post-Covid-19 clinic at the Kennedy Krieger Institute in Baltimore, said getting treatment early might help recovery. Post-Covid clinics find they need multiple specialists and approaches including exercise, cognitive behavioral therapy, sleep modification and medication for issues such as respiratory and gastrointestinal problems.
...

Much about long Covid remains mysterious. Some symptoms resemble aftereffects of concussions and other brain injuries. Some, like post-exertional malaise — when physical or mental exertion increases exhaustion — echo symptoms of chronic fatigue syndrome, experts say.
...

During that May appointment, which The New York Times observed, Dr. Jane Newburger, a vice chair of cardiology, told Sierra: “Part of what can happen is you feel rotten and so, you know, you sit all day. You get deconditioned, and you get into a little bit of a cycle where it’s hard to pull out.”

Still, Dr. Newburger said, “You can’t throw someone back into exercise because you’ll take one step forward and two backward.

 

Ugh. Every lateral step is met with a half-step forward and 2 steps back. Horrible. Complete fail. Even Nath with this junk about self-confidence. They hear the words but the words mean nothing to them, there is simply no understanding at all. At this point I'd rather bet everything teaching old dogs trick because they usually can pull it off.

Seriously though at this point most of the LC patients know more about this than 99% of physicians, or at least they understand it. And they know almost nothing, but at least what they know is accurate. What a disaster this has been so far, complete faceplant.

Edit: this article is getting shared a lot, huge interest, which makes the unnecessary junk about deconditioning and exercise really problematic, really pissed off by this, most articles do not have such quotes and one of the most shared articles in a while includes harmful misinformation, ugh

 

There has been an onslaught of news coverage over the last 2 weeks that basically amounts to: won't somebody think of the children?!

In hindsight declaring that children must be immune from an airborne infectious disease may probably be one of the dumbest things anyone has ever done in the entire history of humankind. And that's seriously a high bar, our history is basically defined by doing the stupidest things and then doubling down several times just to be sure. Then doing it all over again for several generations because no one learns anything anyway. It's not as if infectious diseases have killed literally half of all humans that have ever been born in childhood, or something like that. Nope, you can safely declare that this never happened and can't ever happen and still be respected. Somehow.

Unfortunately the people who have declared this, without evidence, are still listened to and continue to influence public health policy because they continue saying things that people in power like to hear. Which is probably where medicine overlaps most with politics: being right doesn't mean a damn thing while being wrong gives you a large audience. At least until science settles things. Just like in politics. Weird how this works, it's almost like medicine without science isn't especially useful.

Just posting one but wow have there been many articles on this in the past week, going back and forth between this and the flawed Lancet study used to argue the opposite of reality. Because if there's one thing that's good during a pandemic is for the entire profession dealing with health being massively dysfunctional over basic facts and present multiple versions of the truth. No problem here, everything's going great. People will keep on trusting, just like they have all along, for the same reasons.


Fauci Sounds Covid Alarm: Our ‘Kids Are Getting Sick’
https://www.rollingstone.com/politics/politics-news/fauci-covid-kids-are-getting-sick-1209302/

 

(Because this also mentions Long COVID/PASC, wanted to share, mods feel free to move if best fit elsewhere)

Passing along this Twitter thread today from a Mayo Clinic MD on Severe ME Awareness Day. Many of us know how difficult it has been to inspire change at this specific facility, so this acknowledgment was a pleasant surprise.

For those that don't have Twitter, it reads:

"As we continue to learn more about the Post-COVID Syndrome, AKA Long COVID or PASC, I want to recognize the Millions Missing from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome on this Severe ME Day.

After countless decades of being unheard - as has historically been the case of the differently-abled and female-predominant diseases - I hope that the research, medical care, and advocacy that Post-COVID is driving finally brings the attention you deserve

While I can't speak for all, know that many of us are hoping that our Post-COVID work may also help those with ME/CFS and other conditions (based on phenotypes similar to POTS, fibromyalgia, etc.). We hear you and we see you. Hopefully soon, we can support you too. #SevereMEDay”

(and she referenced that she essentially learned of ME/CFS through Unrest, once again proving advocacy matters)

https://twitter.com/user/status/1424414771181465607

 

How illnesses become psychologised: Long COVID, ME, and the ‘All-In-Your-Head’ cartel

"I was delighted to be part of this panel discussion on Gez Medinger‘s YouTube channel, RUN-DMC. As many readers will know, Gez is a London-based film producer and director who has been debilitated with severe Long COVID ever since contracting Covid early in the pandemic. His YouTube channel is now dedicated to medical journalism, where he produces films on all aspects of Long COVID and post-viral illness.

These films were prepared by Gez along with Asad Khan, a Respiratory Consultant from Manchester who also has Long COVID.

Our panel discussion focused on the problem of Long COVID scepticism, and the way in which this illness is so frequently dismissed as a mental health problem caused by faulty thinking on the part of patients and media-driven mass hysteria. Quite apart from all the politics and medical history, we heard first-hand accounts from a number of doctors who themselves have suffered terribly with Long COVID and ME. Despite their own medical training, however, even these doctors continue to encounter rejection and dismissal from many of their own peers."

https://thesciencebit.net/2021/08/0...ong-covid-me-and-the-all-in-your-head-cartel/

 

Here is some excerpts from her recent research:

The Female Predominant Persistent Immune Dysregulation of the Post COVID Syndrome: A Cohort Study
https://www.medrxiv.org/content/10.1101/2021.05.25.21257820v1.full-text

PROMIS Scales for Assessment of Persistent Post-COVID Symptoms: A Cross Sectional Study
https://www.medrxiv.org/content/10.1101/2021.05.25.21257817v1

Central Sensitization Phenotypes in Post Acute Sequelae of SARS-CoV-2 Infection (PASC): Defining the Post COVID Syndrome
https://journals.sagepub.com/doi/full/10.1177/21501327211030826

Discussed here: https://www.s4me.info/threads/centr...-post-covid-syndrome-2021-bierle-et-al.21374/

 

Seems like Pam Belluck writes this same type of article every few months—where she does NOT say that people who have Long Covid with the exact same symptoms as MECFS for more than 6 months in fact have MECFS.

I’ve emailed her and provided comments in the comment section to no avail.

 

I was going to listen to the panel discussion with Brian Hughes and others from the link provided in the blog -- Gez’s channel.

While this may be excellent and I will still have a listen I see some of the other offerings on the channel include Ashok Gupta and other 'medical experts' offering to variously fix your metabolism or your dysautonomia. I don't recognise the names of most of them but that in itself is a problem as I would think I would have heard of them by now if they had something to offer.

I confess I find the site off-putting as the images tend to make me think of someone shilling for a multi level marketing scheme.

Perhaps my caution isn't warranted and these are also excellent videos but I'm not inclined to personally take the time to find out.

 

Please do watch the two-parter panel discussion - I think it's really good. I also very much appreciated the discussion between Asad Khan (long Covid) and Ben Marsh (ME) on the similarities between the two diseases. Gez Medinger is a professional film-maker, so his productions, intros and outros are high quality. The discussions themselves are held over Zoom, so they have the more relatable vibe we've all come to love.

The unfamiliar speakers on e.g. POTS, dysautonomia are generally very good too. Perhaps they are newly moving their related expertise in to this disease area.

Personally, I would not watch anything Gupta-related and hadn't noticed he was on there. I assume that as a recent patient, Gez has been looking at all angles and no doubt learning as he goes. My local patient group (many old hands) have really valued these videos.

 

An hour-long video summarising the latest neuroscience concepts around long Covid as a specific form of ME/CFS.

What Long-COVID may be and how to study it Learning from ME/CFS
Michael VanElzakker, Harvard Medical School

(Executive summary: the neuroimmune relationship to systemic symptoms is crystallising and there are new neuro-imaging modalities that indicate the potential for non-invasive diagnostics. 5/5 recommended.)

YouTube link

 

Heavy Twitter activity today about Pam Belluck NYT article—most of it on the skeptical side—I think I need to tune out— it’s wearing me down.

https://twitter.com/user/status/1424523818832367618

 

The Guardian 'What is happening to me?' The teenagers trying to make sense of Long Covid

Quotes:
“We can definitely say that children get long Covid,” says Dr Elaine Maxwell of the National Institute for Health Research. “But the problem with long Covid is that it’s not one definition.” Common symptoms of long Covid listed by the NHS include sensory problems, such as loss of smell and taste, brain fog and cardiac-respiratory symptoms. But children tend to have slightly different symptoms – a recent study of 2m insurance claims from the US organisation Fair Health found that under-18s were more likely to report intestinal issues and “adjustment disorders” (emotional or behavioural reactions to stressful life events).

Due to this divergence, these symptoms are sometimes treated with scepticism. “We are still at the stage where some people are saying that children don’t have long Covid,” says Maxwell. “Is it just anxiety? Anxious parents?” This disbelief can extend to teachers, social workers and even medical professionals, compounding the stress and uncertainty of life as a teen with long Covid. (People with similar syndromes, such as chronic fatigue, often report being dismissed by healthcare workers.)
...

There are signs of hope and recovery, however. Niamh has visited a long Covid clinic and is doing much better. “They were great,” she says. “They don’t have the answers; there isn’t a magic pill they can give you to sort you out. But my psychologist assessed me and gave me advice for dealing with it as a young person.” She is gradually increasing her time socialising with friends and has festivals booked this summer. “I have to have rest days before, to build up my strength, and to recover afterwards,” she says.

 

Nature - Communcations Biology - At the frontline of COVID research: an interview with Akiko Iwasaki on her groundbreaking COVID projects and advocacy for women and minorities in STEM

Quote:
Now that we are beginning to enter a new normal, what non-COVID research are you excited to pick up again?

- Even after the COVID spread is contained by vaccines, millions of people are suffering from devastating long term consequences of post-acute COVID-19 syndrome every day.

We are focusing on the disease pathogenesis and based on that insight come up with rational therapy.

I hypothesized that long COVID can be caused by persistent virus infection, viral remnants, or autoimmune reaction.

We are now probing these hypotheses by studying blood of long haulers in collaboration with Dr. David Putrino’s group at Mt. Sinai.

We are also collaborating with Drs. Harlan Krumholz, Aaron Ring and others on how vaccines might impact long COVID.

Survivor Corps has reported that about 40% of long haulers experienced improvement in their symptoms, while 15% worsened.

We are trying to correlate immune changes to the symptom changes to figure out what is making people feel better, and to come up with the proper therapy based on that insight.

We believe this insight may also help those suffering from other post infection syndromes including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

 

Neuron How COVID-18 has transformed by science by Akiko Iwasaki

Quote:

Looking toward the future
One pivotal event that ignited my desire to work on long COVID was an interview with Ed Yong. When he asked me about how long hauler disease might happen from an acute viral infection in May of 2020, I thought about it, and came up with a couple of hypotheses. Long-lasting symptoms may be a result of lingering virus infection, remnants of the virus that persist (I called it viral ghost), or autoimmune reaction (https://www.theatlantic.com/health/...-coronavirus-longterm-symptoms-months/612679/).

In another article by Ed, Dr. David Putrino, the director of Rehabilitation Innovation at Icahn School of Medicine at Mount Sinai, was being interviewed. David provides therapy to those suffering from long COVID, and I decided to reach out to him to collaborate to find out what is causing this disease. He immediately responded with a yes! Now, David and I are collaborating daily to figure out the pathobiology of long COVID.

With David’s team, my lab is dedicated to understanding the pathobiology of long COVID and other post-infection syndromes that result in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is a huge unmet medical need and frankly an area that has been dismissed by many physicians and scientists.

Just because something is complicated and difficult, we cannot ignore the patients and dismiss their suffering. I believe ME/CFS is an immunological disorder. Even after we contain the pandemic with vaccines, there will be tens of millions of people suffering from long-term debilitating symptoms.

I would like to contribute to the understanding of this enigmatic disease. Actually, I suspect that there are likely multiple diseases that are currently considered under the umbrella of post-acute COVID-19 syndrome—one driven by persistent viral infection, another driven by purely autoimmunity, and yet another that is a combination.

There may also be disease caused by tissue damage that is unrepaired or due to reactivation of existing viruses (
Proal and VanElzakker, 2021). My dream would be to find biomarkers for these various disease types and to recommend an appropriate treatment for each based on the underlying disease mechanisms. Promising candidates can then be tested in randomized clinical trials to assess efficacy.