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

I listened to this - very interesting. I thought it unusual to hear medical professionals with Long Covid talking about the same problems that ME sufferers have had for decades, i.e. no medical help and extreme worry about finances.

 

Double Down News asked for questions for Prof John Ashton.

I posted this and it was removed by an unseen hand.

 

The co-existence within a few sentences of "this is brand new I have never seen this" and "this is just like this other thing which we see a lot" is truly bizarre, in the hands of professionals who should know better it's straight up absurd.

Of course the author misunderstands the issue and seems to consider ME and FND to be legit but LC different because it's not conversion disorder. For the very same reasons why ME and FND are not. Which, again, is super weird coming from experts, because they use the same arguments for the same reasons and yet they have this binary flip applied to us. It has nothing to do with reality or evidence, it's just an automatic flip function that is applied mindlessly.

We've seen already, from alleged ME experts no less, but the whole "this isn't ME or CFS these people have PEM and that doesn't happen with ME or CFS" is going to be so damn annoying and foolish.

For this alone the author really should have waited to write this book, waited to know enough on the topic to justify writing a book.

 

I don't know but maybe inventing invalid models that have been challenged for decades by the patients suffering its consequences was not a good idea after all and neither was framing those challenges as a bunch of delusional hysterics. You know what they say: when the data contradict your model, ignore the data and promote the model even harder. Well, not so much saying it as doing exactly this.

In hindsight it looks really bad, but to be fair it looked bad the entire time, especially with all the bullying and efforts to discredit those challenges.

https://twitter.com/user/status/1395432678007115778

 

Interesting thread with some ongoing research. Still more questions than answers but overall more of the same we've already seen in ME and chronic illness in general, which none seem clued in on.

https://twitter.com/user/status/1395844621033525250


These patients and so many more like them. In fact probably for most patients, once you discount a high % of natural recovery and misdiagnosis that likely account for the vast majority of whatever "work" is supposed to mean:

https://twitter.com/user/status/1395849682941845509

 

Can anyone think why this would be?: "Non-hospitalized COVID patients had a slower recovery than hospitalized patients."

Some people can be hospitalised with glandular fever but I'm not aware of any data on how their long-term outcomes compare to others.

 

I am not aware of data .
Two of my kids had pvfs after glandular fever : my daughter developed ME, my son didn't.
Both had relatively mild glandular fever

Although more acute, hospitalization lets you rest. It also perhaps encourages those around you to help so aiding recovery.
Non hospitalised are probably expected to just get on with it as soon as possible.

 

That makes complete sense to me.

Symptoms that put you in hospital will be due to pneumonia, which will resolve fairly quickly. Symptoms for other reasons may well not.

I think bundling all these people into 'LongCovid' may be pretty unhelpful.

 

"A conversation with physiotherapist David Poulter and Pain Consultant Dr. Deepak Ravindran, consultant in Pain Medicine and lead for the Berkshire LongCovid Integrated Service (BLIS) in Reading, UK.

We discuss:

• The kinds of symptoms and problems people are experiencing when they present to the Long Covid clinic
• The finding that the vast majority – about 90% – of people with Long Covid are those who have had so-called “mild” disease, where they were not hospitalised.
• Theories of the mechanisms underlying development and persistence of LC
• Variability in how people respond to the virus
• The controversy around use of the term “biopsychosocial” as some patients feel that this term has been mis-used
• ME/CFS and other post-viral fatigue syndromes share many similarities with LC
• The hope that the recent public interest in LC may positively effect research and future outcomes for people with with ME
• In the year 2021, will anyone be diagnosed with ME/CFS, or will everyone presenting with these symptoms be diagnosed with Long Covid?
• It’s important to validate people’s lived experience of Long Covid. At the same time, is there a possibility that exposure to a lot of content about Long Covid may create a “nocebo effect” for those who catch the virus?
• Activism and its impact on funding
• Pacing; what is it? This term means wildly different things to different people.
• Physical and cognitive rest and “flight mode”"

https://getbetteronline.co.uk/whats-going-on-with-long-covid/

Unhelpfully, someone has replied to the tweet below promoting the above suggesting Vogt and Recovery Norge are worth a look.

 

I was watching it. Interesting discussion, but about halfway in they start rambling about A-personalities and too much social media being the cause for an infection turning into chronic illness.

Can't watch more.

 

When certain organs are attacked it can become life threatening very quickly but other organs can be badly damaged but you can keep going. Consider a bladder infection as opposed to a lung infection.

Not being hospitalized does not mean that the infection was milder or did not cause widespread damage.

The other thing is that being given steroids or the other drugs they used in hospitals for covid would have helped all infected organs not just the lungs or the heart damage that led to being there.

Also being in hospital means not having to do anything else. ME was said to be caused by people having an infection but being forced to carry on doing things. A mother of 3 kids will not be able to stop looking after them with a mild infection while being in hospital she could rest.

 

There have been some speculation that it could be down to some standard treatments used in hospital settings. Which could make sense, but another possibility raised is a difference in early immune response causing more acute illness but lowering long-term problems.

Then again it could be entirely a fluke based on a variety of factors like viral load, site of infection and so on. We're dealing with chaos here, few of the factors are linear.

 

no one has mentioned the reluctance of gps to actually send people with flu symptoms to hospitals . my case of beijing flu in 1990 put me to bed with a high fever for the best part of two weeks if i had not been visiting my parents when i got sick it would of been necessary to go into hospital . i have no idea whatsoever of just how many people where cared for at home in these circumstances .

 

Hospitals usually cost patients money, even in places with "free" hospitals. Fear of the financial burden, including potential medical bankruptcy, will keep a great many at home, especially if they are not alone and others can help.

 

There is an interesting paper in the BMJ (link, main PDF) entitled "Risk of clinical sequelae after the acute phase of SARS-CoV-2 infection: retrospective cohort study" using large coded health records data to estimate the excess risk of developing various conditions in the aftermath of a COVID-19 infection.

As can be seen from Table 3 (pp 19-24) in the supplemental data, the risk of a fatigue-related diagnosis is markedly elevated even at six months out relative to the 2020 comparator group (healthy controls).

Unfortunately, the authors chose to aggregate G93.3 (PVFS), chronic fatigue NOS (R53.82) and fatigue (R53) together to create a generic "fatigue diagnosis" category. I would have liked to have seen the data for G93.3 alone; they also failed to consider that some patients may have been diagnosed with CFS but had this recorded using the F48 fatigue syndrome (formerly neurasthenia) code.

Still, there's some interesting data here, including for myalgia (B33, M79) and POTS (I49.9).

 

In the Swedish newspaper Aftonbladet today:

Läkaren larmar: ME/CFS kommer öka dramatiskt efter pandemin
https://www.aftonbladet.se/nyheter/...r-me-cfs-kommer-oka-dramatiskt-efter-pandemin

Google Translate, English

ETA: There's another article today in Aftonbladet, about a man who experienced PVFS/ME symptoms, believed he had recovered, then came down with covid-19, and has now been diagnosed with ME. The article is more about daily life with ME than covid/postcovid, so I chose to post it in the News from Scandinavia thread, since I had already posted a video about him in that thread the other day.

 

Neurology Today: Drs. Anthony Fauci and Walter Koroshetz on the Turning Point for COVID-19 and the Work That Remains

quote:
What is post-acute sequelae of COVID-19, or TASC, and how is it different from other post-viral syndromes like chronic fatigue syndrome?

Dr. Koroshetz: We know very little about the biological underpinnings of what people are suffering with. But we do know, unfortunately, it's not a minor problem. The percentage of people could be below 10 percent, but given the fact that so many have been infected, that's still going to be a lot of people. We also know now that the hope that this might be something like infectious mononucleosis, that it might take six months and then you'll be fine—there's certainly evidence now that for some people that's not happening, that some still have problems past six months.

The most prominent symptom of the TASC is fatigue, along with memory and attention problems. Other symptoms include dysautonomia, postural orthostatic tachycardia, pain syndromes, abnormal sensations, and sleep disturbances.

Neurologists must play a really important role in getting to the bottom of this problem. Dr. Fauci and I have been asked by [NIH Director] Dr. Francis Collins to really push on chronic fatigue syndrome [CFS]. There are incredible parallels between the cluster of symptoms seen in those two conditions, and we've never been able to figure that one out. The CFS is a real mystery. But in that case, we never knew what the virus was. A lot of people said they had a viral illness, and then they had this trouble. Now, with TASC, we know what virus they had and when they had it. We can try to trace the biology, hopefully, get some clues to help us understand and treat patients with post-acute COVID-19, and potentially even for the tens of thousands with CFS.

Dr. Fauci: We've been chasing myalgic encephalomyelitis without knowing what the etiologic agent was. Now, we have an absolutely identified etiologic agent. That should be very helpful now in being able to help us understand it. I hope we do. It's been mysterious to us for years. Maybe this will give us a chance at a breakthrough.

 

!!! Tens of thousands?

 

Is "TASC" a typo in their article? Why not PASC?