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

I do wish sub-editors or editors would not insist on inserting themselves into the script. Where does that "purported" come from, before the respiratory infection? It may be other things in addition, but there seems to be nothing "purported" about it. I read the piece expecting an explanation. Finding none suggests that the editorial team wishes to cast doubts

 

I took it to mean that, whilst Covid-19 is often described as a respiratory infection, this may not be accurate; some doctors have, for instance, described it as a disease of the endothelial system. Not everyone agrees on how to classify it, meaning that the description isn't yet settled.

I may be wrong, though!

 

https://twitter.com/user/status/1310576030336323585

 

I think the difficulty with that is that the variety of symptoms and different causative factors of Long Covid mean that it cannot be regarded as a single unified concept. Many cases of Long Covid should probably be regarded as something other than ME. On the other hand, some, possibly many cases, should be regarded as falling within the condition we recognise as ME.

We should not overclaim. Neither should we underclaim.

 

I made a comparison with other infections. With those, neither I nor pretty much anyone else says everyone with sequelae have CFS. If one treats it the same, neither I nor pretty anyone else is saying everyone with sequelae after Covid have CFS (or ME).

 

There is no editorial or sub editorial control over these blogs on the Psychology Today blog platform. The article won't have been commissioned by Psychology Today.

Bloggers own the content on their blog platforms. They can edit articles, take them down entirely, or take any comments off and set a blog as "No Comments" if they don't like the comments they are receiving (as Ned Shorter did in 2015 - first he set the blog so no further comments could be posted on that blog, then he took his hate piece down and later published a slightly toned down commentary).

There are hundreds of these blogs for several countries and they are on a stand alone platform to the content of the Psychology Today magazine. The bloggers are subject to Terms of Use - but otherwise the owners of these blogs can publish whatever they like.

Dr Allen Frances' blog DSM5 in Distress is on the UK blogger platform, so is Edward Shorter's blog. Toni Bernhard (How to Be Sick) has one.

They are a means of providing psychologists, psychiatrists, therapists, counsellors and mental health advocates with a platform to promote their practices, publications, online courses, online therapy etc.

Edited to add:

Emily Deans, M.D., is a board certified adult psychiatrist practicing in Massachusetts. She graduated from the University of Texas Southwestern Medical School in 2000 and from the Harvard Longwood Psychiatry Residency in 2004, and was a Chief Resident at Brigham and Women's Hospital in Boston. She is currently an Instructor in Psychiatry, Part-Time at Harvard Medical School. This blog has no affiliation with and does not necessarily reflect the opinions of the institution.

 

https://twitter.com/user/status/1310595612975476736

 

That makes it very odd if the author is , below the title, modifying the effect of the article... and if the one doing the purporting, and the and the one pointing it out, are one and the same.

 

It's a British "red top":

https://en.wikipedia.org/wiki/The_Sunday_People

 

We already know most people recover from PVFS, so it wouldn't change much here. If medicine were to acknowledge and deal with the fact that it is actually common to take months to recover from infectious diseases, it would still be a massive improvement. Right now medicine is in that weird spot where PVFS has always been known but also it doesn't exist when most people present with it to a clinic. This doublethink is at the center of most of our problems, self-contradictions in the very assumptions that keep science out of the way.

There is danger that this would mean that only this medium-term recovery is accepted and anything beyond remains discriminated and denied as insubstantial psychological something-something, but it would still be a massive improvement that would eventually pave the way for a massive course correction. Any effective symptomatic treatment would still benefit us.

But the clincher is in being unable to differentiate COVID PVFS from other pathogens, and the large number of medical professionals affected, now facing a personal clash with the doublethink, having to reconcile that one of those thoughts was pure fiction. Many of them like Garner are angry and motivated to force change.

Regardless, we will be in a much better position than had this not happened. Mistakes will be made, but that is still a massive improvement over nothing but failure and psychopathic indifference to millions of human lives. Impossible to tell how soon this will help any of us personally, but there are far more upsides than downsides. Easy enough when living in a situation with nothing but the worst possible downsides, managed entirely by self-serving delusional charlatans.

 

Do we? It depends how you use the term. PVFS, in some usage, represented cases of ME of clear viral origin, and was distinguishable from "post viral fatigue" . Little is clear-cut.

 

https://twitter.com/user/status/1310635850359767040

 

Just to clarify, further to what I wrote above, I completely agree with Tom and others on this. If someone meets the case definition of ME/CFS then they have ME/CFS, whether their illness started with Covid-19 or anything else. I understand why such patients may look at the way people with ME/CFS are treated and think “I don’t want to be treated like that!” but I hope that will lead to improvements in the way we are treated rather than treating post-covid ME/CFS patients differently.

Having said that, I also think it is unhelpful if/when doctors/scientists assume that everybody who meets the diagnostic criteria for ME/CFS necessarily has the same illness, even when the more useful criteria are used. Until more is understood about the pathology(ies) I don’t see how we can know. And I am optimistic that post-covid ME/CFS will help to further understanding – whilst also being acutely aware of the pitfalls.

Finally, I am reminded of when I was in hospital last year. The man in the bed opposite asked me what was wrong with me. When I told him that, in addition to my acute problems, I had been diagnosed with ME since 1992, his wife told me, “Oh, I had that once.” I don’t doubt that, like Jonathan Edwards when he was younger and many others, she had had some type of post-viral syndrome but from how she spoke about it I would be very surprised if she had had the same illness that has crippled me for nearly 30 years. (Although, I acknowledge that I may be wrong.)

[edit: corrected typos for clarity.]

 

‘It’s Not in My Head’: They Survived the Coronavirus, but They Never Got Well

https://www.nytimes.com/2020/09/28/us/coronavirus-long-term-effects.html

But muh secondary benefits of the 'sick role'.

As much as they continue to be illuminating, that most reporting continues to be limited to personal testimonies because medicine is still paralyzed by indecision and doublethink is getting seriously embarrassing. Turns out denial has far-reaching consequences.

https://twitter.com/user/status/1310655571448811529

 

https://www.thesun.co.uk/news/12781191/long-covid-brits-months-after-virus/

 

BBC Northern Ireland
Dr Trinick interviewed on BBC Talkback just now. Says that GET is a "controversial" treatment. Says that Covid patients should avoid GET. Another consultant, from Dublin, agreed.
https://www.bbc.co.uk/programmes/b007cpt4
https://www.bbc.co.uk/sounds/play/m000mz4g
Supposedly the first item on the programme

 

Funny that, it's not anxiety. Where have I heard that? Doublethink is such a bummer.

 

The doctors still crippled by Covid-19 six months after they caught it

https://www.dailymail.co.uk/health/...s-crippled-Covid-19-six-months-caught-it.html


It mostly consists of short testimonies. Interesting to notice how typical they are to the ME experience, just with so much more clarity about what started it. I wonder what they think of medically unexplained symptoms. Especially what they think of the fact that the people behind MUS 100% believe what they are going through is almost entirely psychological. Because they would all have dismissed themselves had they presented last year as patients. Those are the guidelines.

It's remarkable that so few medical professionals see the disconnect with their experience being one their training has insisted is not medically relevant. After all this time and this level of clarity over why they are experiencing this nightmare is still rare. Or maybe they do and it just didn't make it here, but it'd be odd to not speak out about it for anyone who understands how this failure has been manufactured by a series of failures that were pushed strictly out of ideology.


Oh, and obligatory WE TOLD YOU SO.

 

One of them is a GP in Brixton who says:
When I'm feeling optimistic, I hope I will be better in 12 months. But on my pessimistic days, I get tearful and worried that it won't ever go away.
I've had patients left virtually disabled or housebound by post-viral chronic fatigue. I'm praying this doesn't happen to me.

 

Wow, some of their symptom descriptions match me perfectly! The similarities are astounding. A few examples:

I've had this for years. I get numbness feeling in my right calf periodically, it can last from a few days to a few weeks.

That's me. Even when the temperature is normal my feet and hands often get very cold.

Yep me too. I've developed dozens of food intolerances over the years: spices, gluten, dairy, MSG, aspartame, the list goes on.

Wow, this describes me perfectly. Almost every day I get a sudden fatigue and sleepiness attack, sometimes bad enough to send me to bed other times just making me confined to a chair. It happens very suddenly with no warning, it could take only a few minutes to come on.

It seems to me most of those people have full blown ME. Very unfortunate for them.