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

https://twitter.com/user/status/1408112845758283781

 

Looks like the use of a limited denominator is all the rage these days. When standards are lowered all you get in outcome is lowered standards.


Long covid military rehab programme 'helping to save careers'

https://www.bbc.com/news/uk-england-nottinghamshire-57599256


Look at the sleights of language:

Nearly all the patients that took part last year were able to return to work within three months.

...

At the centre they are tested for signs of long-term organ damage and taught how to overcome the key symptoms - shortness of breath, fatigue, low mood and "brain fog".

So far, about 150 patients have taken part in the programme.

...

Lt Col Sadar Bahadur, a DMRC consultant, said more than 90% of the 55 patients who completed the programme last year were back in work after three months.​

Just like IAPT's 50% "recovery", as long as you only count the 10% or so who complete the program. It "works" as long as you define "work" as being compatible with "doesn't actually work".

Unless they mean that 55 took part last year and 95 this year, but it still would align with the 90% natural recovery rates and suggests no meaningful impact from that program.

 

Mm.
Is this the same team that the Cochrane patient rep tweeted about ?

 

Did you see this @dave30th ?

 

What?

"At the centre they are tested for signs of long-term organ damage and taught how to overcome the key symptoms - shortness of breath, fatigue, low mood and "brain fog"

 

One of the articles was already published (although it's paywalled) but Long Covid is this week's cover topic at New Scientist.

https://www.newscientist.com/issue/3340/

 

Prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized COVID-19 survivors: A systematic review and meta-analysis

Pre-print (or whatever else "online ahead of print means"): https://pubmed.ncbi.nlm.nih.gov/34167876/


Aim

Single studies support the presence of several post-COVID-19 symptoms; however, no meta-analysis differentiating hospitalized and non-hospitalized patients has been published to date. This meta-analysis analyses the prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized patients recovered from COVID-19 .​

Results

From 15,577 studies identified, 29 peer-reviewed studies and 4 preprints met inclusion criteria. The sample included 15,244 hospitalized and 9011 non-hospitalized patients. The methodological quality of most studies was fair. The results showed that 63.2, 71.9 and 45.9% of the sample exhibited ≥one post-COVID-19 symptom at 30, 60, or ≥90days after onset/hospitalization. Fatigue and dyspnea were the most prevalent symptoms with a pooled prevalence ranging from 35 to 60% depending on the follow-up. Other post-COVID-19 symptoms included cough (20-25%), anosmia (10-20%), ageusia (15-20%) or joint pain (15-20%). Time trend analysis revealed a decreased prevalence 30days after with an increase after 60days .​

Conclusions

This meta-analysis shows that post-COVID-19 symptoms are present in more than 60% of patients infected by SARS-CoV‑2. Fatigue and dyspnea were the most prevalent post-COVID-19 symptoms, particularly 60 and ≥90 days after.​

Mostly confirms what we know but one interesting detail is noting that symptoms slightly increase at 60 days. The Body Politic study was the only one really looking at temporal patterns so it's good that institutional researchers are paying attention to it. A full year later...

And of course when we consider that the most common symptoms are all common symptoms of ME, it shows the absurd level of failure in making such a complex symptomatic presentation to be about strictly and nothing but a single symptom. What an incredible failure this has been, ongoing to this day.

 

This study got quite a lot of coverage in the news here. One of the articles got translated into English

ScienceNorway: Norwegian study: More than half of young people with mild Covid-19 infections experienced Long Covid

Quote:
Blomberg says that few other studies have the same level of overview of their patients as the Haukeland study.

“Others have studied this by looking at patient registries and prescription registries, or they have recruited people through media or through apps. This makes it difficult to know for sure how many have actually experienced ailments, and the total population of people who have been ill,” Blomberg says to Aftenposten.

“One of the strengths of our study is that we have a good overview of nearly all those who have been ill, and we have followed them throughout this personally with regular consultations,” he says.

 

Fitting that with medicine having politicized this disease category into oblivion, that political leadership bypassing medicine will likely be the way out. Wherever it comes from, this is a problem that requires leadership and with medicine paralyzed by past failures, this is the only way it ever ends.

It was mentioned a few times but little has been made public. Basically there was a presentation made by long haulers and experts to a White House task force and this presentation is their takeaway of what they learned. Encouraging.

https://twitter.com/user/status/1408527238031720448

 

Informative graphic. Those numbers... Although this is for one symptom only so most are not significantly impaired. But it sure would be useful to know more about how symptoms occur, maybe learn something about them for once.

The gender ratio is closer to 60:40, not that big.

https://twitter.com/user/status/1408429472332881926

 

I happened to find this recording of the WNYC 2021 Health Convening discussion from Wednesday, June 23, 2021, which discusses Long COVID and ME/CFS.

https://thegreenespace.org/event/wnyc-2021-health-convening/

I have not watched this video myself (it's about 2.5 hours long).

I found out about it on twitter when the Solve M.E. account shared a quote from Dr. Walter Koroshetz (NINDS director):

The video includes three sessions on different topics. Here's a description of the session related to ME/CFS (starts at about 1:24 in the video):

 

During the Q&A session of the last weekly clinical update with dr. Daniel Griffin he's asked about similarities between Long Covid and CFS by an Australian clinician. Dr. Griffin says there certainly are similarities and that the CFS population has taught them that a subset can deteriorate with exercise and rehabilitation.

They see a very similar pattern in a subset of these patients. He says this might be good and it might be bad. There WAS a lot of research going on in CFS, but not a lot of headway was made. But the big difference according to him is that people got Long Covid at the same time. And he hopes the insights that will be gained from Long Covid will go back to the CFS patients.

YouTube video starts at the session with the question about Long Covid and ME.

https://www.youtube.com/watch?v=a00ypwfAMLk

 

Dr. Griffin also said that United States physicians need to be aware of that a medical code for Long COVID Will not be officially available until October 2021 and until that time period a different code was to used. It’s one of those seemingly small things that I’m sure makes a huge difference when researching records later on (not to mention the USA insurance issues that may arise).

 

Article in the Guardian written by Susan Evan - a gynaecologist and chair of the Pelvic Pain Foundation of Australia and
Mark Hutchinson - a professor at the Adelaide Medical School who specialises in pain research

What do you think? Is the connection they're pointing to between repeated TLR stimulation and chronic pain viable?

The Guardian Why women are more likely to suffer from long Covid

Post-Covid, Post-Sars and Post-Mers syndromes all include persistent fatigue and pain, and show strong similarities to Chronic Fatigue Syndrome, a condition more common in women than men.
Importantly, these conditions are all associated with excessive activation of immune cells in the blood (eg macrophages), and immune-competent cells in the brain (glia). The initial immune response occurs, at least in part, via special receptors on the surface of innate immune cells called Toll-Like Receptors. When TLRs recognise Covid-19 within the body, their cell releases molecular signals called cytokines that make us feel unwell. Cytokine storm, the extreme form of cytokine release, is a feature of the most severe aspects of Covid-19 infection. Repeated TLR stimulation provides a stimulus to chronic medical conditions, including chronic pain and the severity of symptoms is associated with the severity of glial activation within the brain.

...
Conditions including severe period pain, endometriosis and chronic pelvic pain are already associated with an increase in TLR activity, and the presence of Chronic Fatigue Syndrome is highly associated with pre-existing gynaecological pain conditions. Repeated stimulation of the immune system predisposes to chronic pain conditions, and infection with Covid-19 presents a major immune stimulus.

 

It sounds like something anyone could pull out of the textbooks as a trendy idea, no more than that.
It is also rather full of holes. Bacteria stimulate TLRs much better than viruses and ME does not occur after bacterial infection so much as viral. Covid does not show much cytokine storm. And so on.

 

This statement indicates the low level of analysis:

Women have a higher lifetime risk of inflammatory immune conditions such as chronic pain, chronic fatigue and autoimmune disease.

There is little or no evidence for chronic ('primary') pain being inflammatory. If it was it wouldn't be called chronic pain, it would be called by the type of inflammation. Chronic fatigue does not seem to be inflammatory at all. Even autoimmune disease is not inflammatory per se. Some autoantibodies induce inflammation (rheumatoid factor) but a lot do not (antibodies to platelets). The link to being female is not the inflammation it is the antibody response. So far I don't think any long term problems after Covid have been shown to link to antibodies.

 

Well, I have very little ME pain, and didn't get much in the way of period-type pain either.

 

@Jonathan Edwards Do you mean chronic fatigue syndrome?