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

https://twitter.com/user/status/1302964679598395393

 

It shows what we are up against. The opinion of a professor to whom a paper is sent for review is apparently ignored. Why, and by whom? Presumably he must have been considered a "safe pair of hands".

 

The review stage involves the editor, reviewers and the authors. Does the BMJ now have open access review now? If so, the info may be out there. The authors most likely included it in their draft and didn’t want to remove it.

 

maybe someone could tweet and suggest that as a start he might like to take part in the discussions here?

eta: I mean Prof Brendan Delaney

 

‘I’ve progressed very, very slowly’: B.C. COVID-19 ‘long-hauler’ shares recovery story

https://globalnews.ca/news/7319727/b-c-covid-long-hauler/

Has a few video interviews. At this point I'm really looking forward to reports moving away from single interviews with patients and building up on more data. I know everyone but us is slow at this but at this point they don't add much and continue to give the impression that cases are few enough that it's necessary to track down individuals, rather than reporting on the broader data.

 

For Long-Haulers, Covid-19 Takes a Toll on Mind as Well as Body

https://www.nytimes.com/2020/09/07/health/coronavirus-mental-health-long-hauler.html

Has some good bits but somehow they felt it necessary to talk with Jo "anyway, how's your shopping bag handling skill?" Daniels about how it's important to stay away from support groups, even though the article is mostly about how it's a lifeline for the community, how so many were on the verge of suicide and found strength in knowing they aren't alone. Go away Daniels, you are extremely bad at your job.

This is bordering on psychologizing but mostly because of Daniels' irrelevant comments. Otherwise it's certainly fair to think of the mental health consequences, although this article more than once somehow places fatigue as a mental health issue, which I can't even.

That those paragraphs actually follow the one talking about how the support groups are a lifeline is seriously irresponsible. The absurdity of "mass hysteria" has to end, it's clearly a fully invalid belief system that has no place in modern science. Enough.

I'll file this under "most 'mental health' issues are actually socioeconomic". Despair is easily confused with anxiety and depression in the minds of people who disagree that the despair is a rational response to impossible circumstances.

No. You have clearly failed at this for decades. You are incapable of doing this and are out of your element. As Paul Garner said: ENOUGH FAFFING.

 

No doubt Jo Daniels thinks what she has to say is intelligent and relevant and important.

It is none of those things. It's horrifying every time this woman is in print. So many people who've recently become ill with long-covid are coming forward and declaring how this is not at all as they imagined. And that's the problem. JD et al all think they know what it's about and what to do based on absolutely nothing but the conjuring of their own twisted minds.

Again, so many people realising that they had no idea what people with ME/cfs were on about and now they understand.

Take a hint JD and all the little minions that cling to this sickeningly abusive notion of being an expert while knowing less than nothing.

 

https://twitter.com/user/status/1302994850351063040


horrible disaster article--no mention of ME/CFS everything is a psycho problem--really bad

 

FWIW I just sent a request to the NYT for a correction of this sentence. "Immunologists speculate that long-haulers’ symptoms might persist because they harbor fragments of viral genes that are not infectious but that trigger violent immune reactions." I believe that Ron Davis' group has/had largely put this idea to rest. But even worse, the reporter should have quoted an actual immunologist!!!!!!!

 

If anyone else has energy and wants to point out any corrections to that article the email for the corrections department is nytnews@nytimes.com

 

That's what happens when you break the feedback mechanism and cheat the process to turn failure into the appearance of success. All useful feedback gets removed and it becomes possible to fail miserably for decades while genuinely believing to be highly successful.

They did the equivalent of surrounding themselves with drooling sycophants even as they were falling deeper into absurd woo, with their claque dutifully applauding every misstep simply because a step, any step, must be applauded at all times.

 

This letter on COVID-19 that was published in BMJ, mentions ME.

Source: https://www.bmj.com/content/370/bmj.m2923.full

 

I noticed in the mid 90s that my fatigue and energy moved separately quite a lot. I could have high energy and high fatigue (on protocols I was on back then), which included an increased capacity to walk long distances, I could also have high fatigue and low energy - the usual stuff. These symptoms moved separately for a long while. More usually they moved in tandem, so its easy to see how people get that idea, though its also possible we are talking different kinds of physical energy and fatigue states in combinations.

I have had "deconditioning" symptoms suddenly go away for hours or days, and return just as suddenly. No way that is regular deconditioning.

 

I wonder if anyone is doing a study on whether giving steroids to people when they have Covid results in a lower rate of long-Covid/ME? Wouldn’t that be interesting to know?

 

(referring to the BMJ letter)

Michael Peel, general practitioner

1. 
   Author affiliations

1. mpeel@doctors.org.uk

In inner London, where we saw some of the earliest cases of covid-19 in the United Kingdom, we are now seeing patients with prolonged symptoms like those described by Salisbury, who were only mildly unwell at the time, if at all.1 There are not many, but they are of all ages. They remind me of patients I saw in the mid-1980s with tiredness and muscle pain on the slightest exertion, but more severe. The term the patients used was ME, which became chronic fatigue syndrome, which described their situation more accurately. Most of my patients learned to slow down, something that they found difficult, and to increase their exercise gradually. They almost all returned to living a normal life, though it took up to a year. They did much better than the patients I am seeing with the same label now.

What can we say today to our patients? That we do not know what will happen, but there is always hope. Take a medium term view. Trying to do too much too quickly is counterproductive. Ask, “Can I do more than I did two weeks ago?” because it will be slow. Michael Mayne wrote A Year Lost and Found in 1987, towards the end of his recovery, and it gives a good perspective. We can’t make promises, and none of us has a magic wand, but we can be there, and perhaps that’s the most important tool in primary care.

 

Public Health England
Guidance: COVID-19: long-term health effects
Published 7 September 2o20

Persistent health problems reported following acute COVID-19 disease include:

• respiratory symptoms and conditions such as chronic cough, shortness of breath, lung inflammation and fibrosis, and pulmonary vascular disease
• cardiovascular symptoms and disease such as chest tightness, acute myocarditis and heart failure
• protracted loss or change of smell and taste
• mental health problems including depression, anxiety and cognitive difficulties
• inflammatory disorders such as myalgia, multisystem inflammatory syndrome, Guillain-Barre syndrome, or neuralgic amyotrophy
• gastrointestinal disturbance with diarrhoea
• continuing headaches
• fatigue, weakness and sleeplessness
• liver and kidney dysfunction
• clotting disorders and thrombosis
• lymphadenopathy
• skin rashes

https://www.gov.uk/government/publi...lqf4W3_2mpBe64ta2iweSt32WKHYP8WNV6k-K9-C8gqtI