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

Do others have problems playing this too? Does anyone have another link to this segment? I couldn't find anything myself.

 

Discussion of BMJ articles from Paul Garner on this thread https://www.s4me.info/threads/paul-garner-covid-19-bmj-articles.15629/

Another excellent article from prof. Paul Garner.

BMJ Paul Garner on long haul covid 19 - Don't try to dominate this virus, accommodate it

I was desperate, tired, grumpy. I wanted someone to help me pace and thought occupational health could refer me to a specialist service. Instead, I was told I needed a course of cognitive behaviour therapy (CBT).

Did I? I turned to Cochrane, the first stop for reliable current medical thinking and evidence. “CBT facilitates the identification of unhelpful, anxiety‐provoking thoughts, and challenges these negative automatic thoughts and dysfunctional underlying assumptions”. Crickey, I thought. Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “exercise as treatment for chronic fatigue:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated).

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area.

 

It works fine for me.

 

After the Chris Como show Don Lemon asked if these symptoms were mostly psychosomatic. Chris Como's response "NO".

 

Ah, I figured some would have problems. Embeds are not always reliable.

Direct Facebook link:

Code:

https://www.facebook.com/ShelbyDHedgecock/videos/10223501115985158/

 

https://twitter.com/user/status/1301900579229270018

 

We have heard your message about long covid and we will act, says WHO

https://blogs.bmj.com/bmj/2020/09/0...ge-about-long-covid-and-we-will-act-says-who/

This is a good message and the emphasized points are the right approach. But the exact same needs to apply to the broader category, not just the COVID-19 subset, which to this day remains a blip compared to the whole chronic illness patient population. This does not only mean ME/CFS but the whole chronic illness superset. Which, yes, probably amounts to well above 100 million, something medicine is completely unequipped to deal with. Denial has consequences.

Had this been done decades ago we would not be in this mess. Medicine should always systematically take patient experience into account, it should not be a special deal. This is almost exactly the same strategy the ME community has been pushing for decades. There are lessons to learn from that, that something that was explicitly rejected with prejudice is now the obvious thing to do. This is an incredible level of failure.

Because this advice directly conflicts with the past several decades of increasing obsession with imaginary psychosomatic disorders, which are entirely incompatible with applying this framework. The entire BPS/FND/MUS ideology is mutually exclusive with making any progress. One has to give, and only one has the chance to actually create productive outcomes, while the other is a completely delusional belief system with catastrophic consequences. Should be an easy choice, but the wrong choice has been made decades ago and reaffirmed constantly ever since. Let's fix all of this moving forward, including correcting enormous mistakes that are still ongoing to this day.

 

Superb. Thank you!

 

Covid-19’s painful, lingering legacy

https://www.theaustralian.com.au/we...y/news-story/e0b9681eea62a31dd0be4dfe6242c47a

Good article overall, but this:

is fully explained by this:

Denial has consequences, generally but especially so in medicine. This type of chronic illness is literally dismissed as "lifestyle" and "behavioral", this is taught at medical school and ruthlessly enforced in practice. This stigma is entirely created and enforced by medicine, also in control of ending it. Belief in childish psychosomatic nonsense has serious life-ruining consequences.

We don't like those consequences. How about ending this nonsense once and for all? After all, it has brought nothing but death and misery, all the for the low low price of... trillions in economic losses, distilled in a few thousand mediocre careers. A very poor set of choices.

 

Struggling with post-COVID-19 syndrome in a First Nation with limited health services

https://www.cbc.ca/news/indigenous/covid-syndrome-symptoms-1.5712151

Gonna go on a limb here and suggest "has worked" means "the patients did not come back".

Where, in any of this, comes the absurd idea that people need to be stimulated to exercise? There is literally nothing that suggests that beyond the fact that it is the underlying assumption, baseless and easy to debunk.

 

Indeed, Gregory Dore's lack of understanding of the "stigma" of longcovid is notable, given that he is a colleague of Andrew Lloyd at UNSW (and regular coauthor).

 

This obsession with exercise is disturbing. There is a PACE exercise program "Progressively Accelerating Cardiopulmonary Exertion" developed by Al Sears in the US, so there might misunderstandings are all over the net depending which country?

Be Strong, in other words literally kill yourself

 

Don't be like that. It works for healthy people, so it must work for ill ones. Stands to reason.

 

She has explained further. I still don’t agree but a bit interesting to see the thought process:
https://twitter.com/user/status/1302179462553972737

https://twitter.com/user/status/1302179734005207041

 

From 3. Sept.

BMJ Living with covid-19 by Fiona Godlee

While most people recover quickly and completely from the virus, stories of persistent and troubling symptoms have now moved from anecdote to the evidence of crowd sourced cohorts. Reports suggest that one in three people have not fully recovered several weeks after initial illness. A smaller but still substantial proportion have symptoms and difficulties that persist for months. These are not people who have been seriously ill in hospital, whose difficult journey to recovery is better understood.2 These are often physically fit, younger people who report persistent exercise intolerance, breathlessness and cough,3 anxiety, palpitations, and poor concentration.

 

https://twitter.com/user/status/1302222109729579008

 

Paul Garner at approx. 16 min: The links to ME/CFS for MY condition are clear, and everybody sort of pussyfoots around this

...

And I also think we need to be realistic about the time needed for convalescence

 

Will people agree that 30+ years is realistic though?