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

The next step after "omicron is mild and we can all get back to our normal lives" will of course be "long covid is imaginary and we don't have to take care of the sufferers" or whatever other form of trivialization or denialism is convenient.

 

Could be. I'm really not at all sure how this will ultimately fall out. I think it might slowly turn out to be a slow burn. There are probably many, many people who have not yet spoken up about their situation. They may yet do so.

So much about the ending of this saga is unclear to me. It will be interesting to see if even just a small number of people shifting their position is enough to cause general perceptions to change. It may be down to who those people are (unfortunately for them).

 

This NZ article is a bit all over the place but the main message is clear: society urgently needs to start thinking about the implications of LC.

Contains everything from the speculation about the microclot hypothesis to some very sensible suggestions - which almost certainly won't be acted upon - like this one:

 

The lack of any 'tracing' is probably a pretty clear indication of intent.

Intent to do nothing.

Why would they, it's just a few unproven cases, and no one can prove otherwise, coz the authorities aren't collecting data. Several million patient reports is anecdotal, not evidence (that they see any reason to accept/acknowledge), and all can be dismissed/ignored just as 'we' have been.

They have a proven system, it works, why change it.

 

Sharing from the Communications Director at AAPD [American Association of People with Disabilities: AAPD]

From Jess Davidson on Twitter: https://twitter.com/user/status/1482447635671916545




Some quotes:

"I think just about any post-viral illness patient would tell you that the structure of our current medical system is not designed to catch, diagnose, or treat post-viral illness"

"I was in perfect health until I caught a run-of-the-mill, mild winter virus — not COVID, just something viral — which triggered post-viral illness very similar to Long COVID, including intractable chronic pain, dysautonomia, Postural Orthostatic Tachycardia Syndrome, and severe fatigue. What scared me most was not the fact that I was a 26 year old who one day could get out of bed and the next day I couldn’t, what scared me most was how ill-equipped more than 12 doctors in 6 months seemed to be to help me."

"We appreciate the significant research funding that has been invested to address Long COVID, but we believe that the CDC, and the federal government as a whole, must do more."

"People developing Long COVID are suffering and struggling to access care because of lack of research dollars dedicated to long-neglected conditions such as other post-viral illnesses, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, dysautonomia, and Fibromyalgia. Research initiatives on Long COVID must include these similarly presenting conditions."

"If the CDC cannot prevent these patients from getting COVID, then the very least that these patients are owed by their government is for the government to be extremely committed to responding to the ways in which their health and lives have now been forever changed by getting this virus."

"Becoming disabled is not a tragic thing. It is a normal part of life and the human experience. However, becoming disabled and being failed by society, the medical system, and the government is, in fact, tragic. And it is wrong. The CDC should be prepared to use all of the tools at its disposal to embrace being responsive and responsible to Long COVID patients, and work in a responsive, interagency approach".

 

I was expecting it to be awful, although it's in Reddit's AskScience, no doubt it would have been awful in AskMedicine (or AskDocs? can't remember), but it was actually mostly OK. Medicine is still barely catching up to the 90's but the general public is starting to see the evidence for what it is and seeing it rather clearly.

It took only a few months for the LC community to get up to speed with reality (with a little help but still), and now the general public appears to be achieving it faster than medicine. Totally normal for experts to be almost universally wrong about something the general public can easily understand.

Is long-Covid specific to Covid infection only, or can you get something similar from a regular cold?

 

Not sure if already posted, by this Twitter thread is worth reading

Thread on the study here, with links to the twitter thread.

 

The chairperson of the Swedish Covid Association:

 

just came across this

 

Paul Garner interviewed (yet again) in The Times. Though much of the interview is with Danny Altmann, professor of immunology at Imperial College, Resia Pretorius, from Stellenbosch University and Douglas Kell, from the University of Liverpool. Perhaps the journalist, Tom Whipple, interviewed Garner as well out of some misplaced sense of bringing 'balance' to the article.



You can read this Times article even if you don't have a subscription, because the person who posted it used a (legitimate) Times 'Share Token' which allows anyone to read the article, it remains accessible for a couple of weeks. You may be able to Comment on the article too with this link.

'Covid leaves wave of wearied souls in pandemic's wake'

https://www.thetimes.co.uk/article/...vX2x9MTrX0F3aHkl0Q-oZBLEwIPNihIZhh778ahzO58kw



Garner has resorted to quoting an early 20th century text on Neurasthenia -

'When Professor Garner thinks of long Covid, he has his own preferred historical example. Jamieson Hurry was a Cambridge-educated GP in Reading. In 1915 he wrote a book titled The Vicious Circles of Neurasthenia. It covered the “morbid irritability and fatiguability of the nervous system” — and its link to our own thoughts.......

The problem is, he argues, that particularly in a situation of high perceived danger — such as a pandemic — sometimes you stay shut down. Your brain sends the wrong messages, your body says it’s still ill, and the two feed on each other. Slowly, with difficulty — with accepting that his thoughts were themselves part of the problem — he got better.

Garner knows how he sounds.'


I really don't think Garner does know how he sounds. Unfortunately his gibberish is still fueling casual disease denial and gaslighting. If I read one more comment promoting the supposed "mind/body connection" my brain will explode - and ME research can have the remains.

This post has been copied and discussion moved to this thread:
Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

 

Neurology somehow continues to be deeper in woo than psychiatry. I can't even process how 10 years of education and training can end up like this. What a waste.

https://twitter.com/user/status/1483082480332775427

 

Sharing this note from Zeynep Tufekci, a sociologist/writer/columnist with NYT (480k+ followers on Twitter)

https://twitter.com/user/status/1483151611996299268

 

Sharing:

https://twitter.com/user/status/1483197878998765573

 

Opinion piece by Jennie Spotila in The Philadelphia Inquirer:
I have a chronic illness. During COVID, isn't my life worth protecting?

Quote:
Almost 30 years ago, I got sick with a virus that led to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — a debilitating neuroimmune disease that leaves me with widespread pain, brain fog, low blood pressure, and other symptoms. Since then, as is common for people with chronic illnesses, I have acquired several more overlapping conditions. My poor health means I am at high risk for complications if I catch COVID-19.

 

Royal Society of Medicine webinar: Spotlight on Long COVID: Part 2, Thu 20 Jan 2022 from 12:30pm to 3:30pm

"According to new figures from the Office for National Statistics (ONS), an estimated 1.3 million people in the UK reported suffering from long COVID in December. The prevalence of self-reported long COVID has remained highest in people living in more deprived areas and those working in health or social care.

Six months on from our first Spotlight on long COVID, this second episode will look at the current prevalence and cases of long COVID, how our understanding of symptoms and treatments has moved on, and the challenges around access to care."

https://www.rsm.ac.uk/events/rsm-studios/2021-22/ceq04/

 

The Norwegian Institute of Public Health has today published a report about Long Covid. One of the authors are KG Brurberg who also co-authored the Cochrane review on ME and graded exercise therapy. The report is peer reviewed by among others research director Signe Flottorp, who is very enthusiastic about Lightning Process and a BPS approach to ME.

Just skimmed it and see no references to ME, PEM or post-viral illness in general.

The report concludes:

Severe COVID-19, requiring hospitalisation or intensive care treatment, correlates with more symptoms after six to 12 months. The range of long-term symptoms for hospitalised patients is widest, with General, Neurological and Pulmonary symptoms the most common. Women stand out with a higher risk for developing long-term symptoms. Many patients who have had mild and moderate COVID-19 (non-hospitalised) report prevailing symptoms six to 12 months after infection, but controlled studies now show that many of these symptoms are also reported by uninfected controls. Symptoms in patients with mild and moderate COVID-19 are similar to those in the general population. The extent of long-term impact of COVID-19 on the quality of life in the general population remains unclear, as most studies included patients with severe COVID-19.

Summary and report here:

https://www.fhi.no/en/publ/2022/COVID-19-Post-COVID-19-condition/

 

Given that, as far as I have seen, virtually every other report/study on long covid concludes the opposite, that disease severity does not correlate with long covid, I can only assume that they are using a definition of long covid slanted towards complications of hospital treatment, organ damage, that sort of thing - which would of course be related to disease severity.

So not, IMO, the same thing as most mean by long covid.

Which isn't really a surprise - they have an agenda/viewpoint which reflects their own interests, and is fiercely against the interests of patients, at least those that don't align with their interests/careers.