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

[Andy]

@Jaybee00 What is an OG infection?

My guess would be it's slang for original.

 

[Shinygleamy]

Some of the comments I have seen from Collins are very disingenuous. I don't know how much of this is the need to play politics because of widespread hostility that could bring him trouble if he dared go against a culture that harbors too much genuine contempt for us, and how much is just trying to spin the fact that the NIH completely failed at doing anything here and he's just trying to make it sound not as horrible as it really is.

Maybe we just are that hated and there really is nothing more he could have done without risking his tenure as NIH director, and his reputation as a result. I don't know how much it would be to ask of him to just come out and say so, rather than continuing to play politician.

But the simple truth is that the NIH failed and Collins is insulting is by pretending they put anything more than a token effort going nowhere. They did nothing significant and it's clear that without Covid the entire thing would have fizzled out with nothing to show for it. And that doesn't bring much hope, because to learn from mistakes it is necessary to acknowledge them. And as failures go, this one goes all the way to 11. Sometimes he says the right things but there is never any action backing those words.

Maybe it's possible that had he done anything more he would have face some rebellion ending his tenure. If that's so then frankly medicine is even more broken than it seems and that's just a whole different set of systemic failure. But it sounds too much like a politician spinning failure into the illusion of "we tried, we really tried", when actually they laughed it all off privately and never intended to do anything than is legally required. As all evidence points towards.

But none of it is inspiring moving forward. I want politics out of medical matters and it's clear we are not anywhere close to that yet. This makes trust moving forward impossible, it will be necessary to hold them accountable down to every damn comma and word because medical institutions simply cannot be trusted to do the right thing without being instructed at every step.

My feeling is that Collins is not the problem and that there is extreme hostility within the NIH, from certain individuals. Like in the uk if you go near ME say goodbye to your career.

 

[Andy]

Scientists set out to connect the dots on long COVID

"Too many have died from COVID-19, but fortunately many have recovered, most without the need for hospitalization. Yet many recoverees are plagued by often life-derailing symptoms such as breathing problems, deep fatigue, joint pain, ‘brain fog’ and heart palpitations. Long COVID will affect, and already is affecting, millions of people and needs to be taken seriously, says Adrian Hayday, an immunologist at the Francis Crick Institute. Data are still emerging, says Karolinska Institute researcher Petter Brodin, but to a first approximation it appears that 70–80% of people experiencing severe acute reactions to COVID-19 are men, whereas women comprise 70–80% of those suffering from long COVID. The average age of long-haul patients is 40, says neuroimmunologist Avi Nath, who is intramural clinical director of the National Institute for Neurological Disorders and Stroke (NINDS) at the US National Institutes of Health (NIH). “They are in the most productive phases of their lives.”"

https://www.nature.com/articles/s41592-021-01145-z

[Contains a passing mention of ME]

 

[Kalliope]

Scientists set out to connect the dots on long COVID

"Too many have died from COVID-19, but fortunately many have recovered, most without the need for hospitalization. Yet many recoverees are plagued by often life-derailing symptoms such as breathing problems, deep fatigue, joint pain, ‘brain fog’ and heart palpitations. Long COVID will affect, and already is affecting, millions of people and needs to be taken seriously, says Adrian Hayday, an immunologist at the Francis Crick Institute. Data are still emerging, says Karolinska Institute researcher Petter Brodin, but to a first approximation it appears that 70–80% of people experiencing severe acute reactions to COVID-19 are men, whereas women comprise 70–80% of those suffering from long COVID. The average age of long-haul patients is 40, says neuroimmunologist Avi Nath, who is intramural clinical director of the National Institute for Neurological Disorders and Stroke (NINDS) at the US National Institutes of Health (NIH). “They are in the most productive phases of their lives.”"

https://www.nature.com/articles/s41592-021-01145-z

[Contains a passing mention of ME]

The journalist Vivien Marx has tweeted a thread about the article, including links to three podcasts that she made with those interviewed in the article (haven't heard them myself yet)

 

[Kalliope]

The journalist Vivien Marx has tweeted a thread about the article, including links to three podcasts that she made with those interviewed in the article (haven't heard them myself yet)

There's a transcript of the podcasts. After a quick skim it seems that it's only in the podcast with dr. Avindra Nath that ME is mentioned. He also talked among other things about exercise intolerance in Long Covid. Here's link to podcast episode and transcript.

Quote:
And I've talked to a lot of people now after the first phase, a month later, they were developing all these symptoms, I followed up with them. And some are getting better. Not everybody has gotten better. But, you know, more and more time lapses, more and more people do spontaneously keep getting better to some degree. So that is really there. Now, do they get better to the degree where they can resume their normal activities, that varies from individual to individual But yes, there is a little bit of hope in that regard.

Vivien: Some people with long-COVID say that they feel better when they receive the vaccination against SARS-CoV-2 the virus that causes COVID-19.

Avi Nath 9:45

It's an interesting phenomenon. The thing is, this is known to occur in other diseases. Patients with ME/CFS or Chronic fatigue syndrome, they will also tell you they got the flu vaccine or something, they actually got better. But what they will also tell you, it doesn't last that long. Yeah. So about a month or something or whatever. And then it comes back. If they have undergo surgery or something, they'll feel better for a little while.

 

[rvallee]

I get the impression that his understanding of the nature of ME is minimal. During the hearing today when he talked about ME, he said patients could be almost bedbound for months. There was also a CDC doctor, whose name I've forgotten, who seemed to believe ME is mainly about fatigue. PEM was mentioned by others in relation to Long Covid, not ME.

He made a weird comment about how it affects school performance in kids. What an odd thing to focus on. He really doesn't get it at all, the severity and totality of how much it disrupts life. Very disappointing, though unsurprising.

But to dare claim that they are doing a lot is sheer dishonesty. Sounds like something he likes to tell people at parties. This was not an investigative hearing, it was friendly chit-chat about misbehaving children, or something of similar importance. Zero urgency or appreciation of what they did to us.

 

[rvallee]

French study on LC patients. Used text analysis for free-form reporting of symptoms by 492 patients. Identified PEM without asking for it or knowing what it is. Doesn't add much we didn't know but yet more confirmation.

Thread by a research in French but gonna be lazy and use someone's translation:


Paper:

Development and validation of the long covid symptom and impact tools, a set of patient-reported instruments constructed from patients’ lived experience

Open access: https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciab352/6252414

 

[rvallee]

One of the weirdest things in all of this disaster is how precisely and effectively everything is lined up to guarantee the worst possible outcomes. Whether it's ME or LC or whatever, this is exactly how to achieve the maximum harm and the absolute worst possible outcomes for everyone.

It's a really fine-tuned machine, truly the best at being the worst. But of course if you never look back and assume you are infallible, that's the only possible outcome.

As the NHS teaches and uses in clinical practice, I guess the bastards don't want to get better. Not my words, this is effectively NHS policy and a widespread medical belief. Turns out relying on beliefs and fraudulent mediocre research is a bad idea. Who knew?


Long Covid: NHS staff 'pressured' to go back to work

https://www.bbc.com/news/uk-wales-56909635

 

[rvallee]

It appears that the CDC will produce guidelines for LC, possibly recognizing the overlap with ME, before they produce guidelines on ME, a process that started... what, 3 years ago?

 

[alktipping]

oh hells the political parties are talking about counselling and wellness . i guess a lot of nhs staff are going to learn the hard way about how their services are being dragged into the dark ages .

 

[Amw66]

oh hells the political parties are talking about counselling and wellness . i guess a lot of nhs staff are going to learn the hard way about how their services are being dragged into the dark ages .

Coyne has some good comments re exactly this

 

[Wyva]

Medical News Today: Long COVID and children: The unseen casualties of COVID-19

https://www.medicalnewstoday.com/articles/long-covid-and-children-the-unseen-casualties-of-covid-19

Quite a long article, focusing a bit more on personal experiences (coming from the moms who mostly get blown off by doctors). Here are some parts I liked or found interesting (chronic fatigue syndrome is mentioned once or twice):

Many of the doctors that Gemma consulted told her that her 9-year-old’s symptoms were the effect of stress. In-between hospital stays, she did her best to care for her son in a home setting, but this was not enough.

As time went on, her son gradually lost mobility and had to use a wheelchair, until he found it too difficult to do even that:

“Just the effort of getting to and from appointments was exhausting for him, and he continued to worsen over the weeks we spent at home. He went from running around the yard in mid-February to using a walker to a wheelchair, then became so weak he could barely use the wheelchair.”

While her son is doing well in his current inpatient rehabilitation stay, being separated in this way is taking its toll on the entire family, Gemma told us.

Even in rehab, however, Gemma is uncertain whether her son’s care is what he exactly needs to recover from long COVID. “[T]here is definitely still tension,” she said.

“The team here is taking a very traditional rehab approach, but there is research suggesting long COVID acts more like chronic fatigue syndrome; exercise intolerance is a key feature of both,” Gemma explained.

She went on to say that “it’s hard to find the line between enough rehab to help restore function, but not so much that [my son] will feel worse.”

“And while cognitive behavioral techniques, such as ‘your body can do hard things’ and ‘you will get a little better every day’ have their place, there’s a danger of ignoring or belittling the very real physiological things my son is experiencing,” Gemma noted, adding:

“We have both felt gaslighted in conversations with our [healthcare] providers, more than once. His anxiety and stress [are] produced by his symptoms, not the other way around.”

The test result came back positive, and an X-ray scan also revealed that Rachel’s daughter had sustained lung damage — even though cough had not featured among her symptoms.

After undergoing further tests and evaluations, the 10-year-old received a long COVID diagnosis and was referred for care to the chronic fatigue team.

This experience, Jane told MNT, “profoundly […] affected [her] trust in the medical profession.”

Jane also sought the opinion of another pediatric neurologist and a pulmonologist. However, their diagnoses and ensuing prescriptions did not help with her son’s symptoms and, in some cases, even made them worse.

“I am untrained in medicine, yet I feel that I’ve not only been on my own to try to diagnose and treat my son, but that I’ve actually been misled by several of the doctors we saw, and given [medications] on two occasions which exacerbated [my son’s] symptoms,” she went on to say.

“After these negative experiences with medications, along with the many blood tests, imaging, etc., my son has suffered medical trauma,” Jane added.

In adults, some researchers have speculated that long COVID symptoms may be due to the persistence of the active virus in the system, reinfection with either the same or a new SARS-CoV-2 variant, issues with immune response, or a preexisting condition such as chronic fatigue syndrome.

MNT asked Drs. Morrow and Malone what they would advise pediatricians looking after children who may have ongoing symptoms of COVID-19.

“We recommend a multidisciplinary and holistic treatment approach, where individual symptoms are addressed in the context of other psychosocial and environmental needs,” they said.

“We recommend starting with environmental and lifestyle interventions, such as optimizing sleep, hydration, and nutritional intake, and providing psychological support to address any comorbid mood concerns with the help of a psychologist as needed. In addition, any activity limitations should be addressed through an individualized exercise program, which can be done in conjunction with oversight from a physical therapist.”

...


“For cognitive or school-based concerns, consider testing by a neuropsychologist in order to identify specific cognitive or attention deficits,” they said.

Jane encouraged other parents whose children are experiencing ongoing COVID-19 symptoms “not to accept diagnoses from a doctor when [they don’t] fit all the facts.”

She also had a plea for medical professionals: “I beg you to please find the strength within yourself to say ‘I don’t know,’ rather than offering […] incorrect diagnoses, particularly if the diagnoses are outside of your specialty.”

 

[rvallee]

The mother of a child patient is clearly and obviously more informed on the condition than the doctors they consult and others interviewed for this piece, literally recommending the very thing that makes patients worse, showing they are unable to learn from experience. Hell, the child probably is. The doctors sure know a whole lot more about what it isn't, but they know nothing about what it is, have a completely distorted perception of reality.

Medicine's failure to address chronic illness and its explosion in Long Covid is probably the single biggest boost to the alternative medicine industry ever, and a boon for anti-science propagandists. So many people will have lost any trust in medicine and they have every reason to. The implications of this are massive and no doubt have a significant effect on vaccination rates. Certainly not as much as propaganda but those impacts will remain for decades to come.

It's a pretty regular topic in LC forums, people are shocked and outraged that something this barbaric still exists. Medical professionals massively underestimate the impact of losing people's trust in their profession, they don't seem to think that it matters at all, and of course they never examine the possibility so they can't even find out. They can only know this by listening, which if they did they wouldn't be doing. Ideological echo chambers are an undeniable cause of Dunning-Kruger effect, even in the best circumstances.

 

[Sean]

It's a pretty regular topic in LC forums, people are shocked and outraged that something this barbaric still exists. Medical professionals massively underestimate the impact of losing people's trust in their profession,...

And right at the time the profession most needs it, in the middle of a global pandemic.

It is so obviously self-defeating you have to wonder about the intelligence of some senior medical professionals.

 

[rvallee]

Continuing on the topic above of LC children being gaslighted. Irony is truly the eternal force of our universe if it just keeps getting killed every day and yet is still around.

Is it their perspectives that need to be heard? Or a wild misinterpretation of those perspectives?


Long COVID in children: the perspectives of parents and children need to be heard
Frances Simpson, Carolyn Chew-Graham and Amali Lokugamage

https://bjgp.org/content/71/706/216.long

Parents described desperation and fear of seeking further help, not wanting to be branded with the stigma of ‘Munchausen syndrome by proxy.’

And they have people like Chew-Graham to blame for this. As in really they should blame the hell out of them, personally and directly. How in the world does it make sense for someone to essentially "study" her own failures and seemingly fail to recognize this. The mind truly boggles.

When parents started to wonder why their children were becoming ill from COVID-19 and not making a full recovery, there was no narrative to enable them to make sense of this.

Straight from the mouth of someone who has been marketing elaborate narratives of the very same thing for years along with colleagues who have been doing the same for decades. And as if what people want is "narratives". Good grief the hubris.

This is like a prominent HIV denier doing HIV research without skipping a beat or feeling any need to justify this complete reversal. People can be weird like that but how is no one bothered by that? Seriously? Makes sense since no one actualy pays attention to the substance but still...

 

[Hutan]

Posts about the finding of epigenetic changes in lung cells that persist after Covid-19 'recovery' have been moved to The biology of coronavirus COVID-19 - including research and treatments

 

[Trish]

Some posts have been moved to a new thread. Please report any I've missed so they can be moved too. The effect of Covid-19 vaccination on people with Long Covid

 

[boolybooly]

I dont know if this has been covered but this looks like the right thread to mention that Dr William Weir has expressed an opinion on longcovid as ME.

https://meassociation.org.uk/wp-con...ome-and-MECFS-by-Dr-William-Weir-09.09.20.pdf

However if one reads the opinion it is clear that he believes ME is an inappropriate immune response without ongoing pathogenic cause.

One of the recognised immunological abnormalities in ME/CFS is inappropriate and ongoing immunological activity. This is at variance with the normal, healthy immune response to an acute infection. In the latter case, the immune system responds to the presence of an infecting organism, acts appropriately to clear it and then shuts down afterwards with resolution of the symptoms of the infection. In ME/CFS this does not happen, and immunological activity continues inappropriately despite the fact that the triggering organism is no longer present. The simplest analogy is that of an old fashioned gramophone needle getting stuck and replaying repeatedly in the same groove.

This is speculative and in my case definitely not true, as I have empirical evidence of recurring virus diagnosed by visible lesions and repeat PCR which I consider conclusive and indisputable evidence my own illness (diagnosed as ME /CFIDS) involves ongoing active viruses. From what I understand I am not alone but this kind of condition may represent only a subgroup of all PWME. It is possible that other PWME may have different kinds of ME.

IMHO I dont believe the perspective he expressed is evidence based and because of my evidence I (constructively) dispute this view and urge caution in making any such assumptions and instead we should regard this as an hypothesis which needs testing, in accord with the scientific method.

 

[Mij]

I've had ME for 30 years. Sudden viral onset and PVFS for 5 years or so. Started improving with no noticeable viruses for 6 years after that. After taking immune modulators in 2001 and relapsing (reactivating HHV6 and EBV), I continue to have reactivations for the last 20 years.

I've had PCR testing when I felt 'viral', but the tests come back negative for several viruses. I also get visible lesions but don't make appt's with my doctor to get tested. and she wouldn't do for me anyways.

I don't think I have 'ongoing viruses' despite reactivations. It's more complex than that, and I feel that my immune system is not keeping them in check. Taking antivirals for years is not going to 'fix' the problem, it can possibly make things worse long term according to Dr. Ron Davis.

However if one reads the opinion it is clear that he believes ME is an inappropriate immune response without ongoing pathogenic cause.

My lymphocyte phenotype indicates my CD4, CD8 etc are all below normal range and not functioning properly.

 

[Trish]

I dont know if this has been covered but this looks like the right thread to mention that Dr William Weir has expressed an opinion on longcovid as ME.

https://meassociation.org.uk/wp-con...ome-and-MECFS-by-Dr-William-Weir-09.09.20.pdf

However if one reads the opinion it is clear that he believes ME is an inappropriate immune response without ongoing pathogenic cause.

This is speculative and in my case definitely not true, as I have empirical evidence of recurring virus diagnosed by visible lesions and repeat PCR which I consider conclusive and indisputable evidence my own illness (diagnosed as ME /CFIDS) involves ongoing active viruses. From what I understand I am not alone but this kind of condition may represent only a subgroup of all PWME. It is possible that other PWME may have different kinds of ME.

IMHO I dont believe the perspective he expressed is evidence based and because of my evidence I (constructively) dispute this view and urge caution in making any such assumptions and instead we should regard this as an hypothesis which needs testing, in accord with the scientific method.

I wonder whether it would be possible for you both to be right. That sounds contradictory, but would it be possible for the initiating virus to trigger an abnormal ongoing immune response, like the stuck gramaphone needle, irrespective of whether the virus is still present or not. And for any flare up in active virus activity to be a result, not the cause of downturns in the ME. Otherwise, if the person has continuously active virus, they would surely be diagnosed with unresolved active viral infection, rather than ME/CFS.