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

Will COVID unlock the secrets of chronic fatigue?
The new focus on COVID-19 'long haulers' may be beneficial to understanding myalgic encephalomyelitis/chronic fatigue syndrome.

https://www.healthing.ca/diseases-and-conditions/will-covid-unlock-the-secrets-of-chronic-fatigue

 

Very good article overall. So many quotable bits, worth reading in full.

I made a comment on the article about a small correction: there is a comment on a Nature article attributed to a Peter White, not Peter D White, "chronic fatigue" researcher. The other Peter White is a patient.

Otherwise good research. And the author is an MD student, which is encouraging.

 

How to safely return to exercise after COVID-19

https://www.today.com/health/when-can-i-exercise-after-covid-doctor-shares-warnings-advice-t200443

No mention or awareness of ME, but:

Most physicians have either not been exposed to ME patients, or did so only unaware of it. But to anyone who sees enough of them, the pattern and features of the disease become obvious, it is simply not defensible to even suggest the possibility of a psychological issue here.

It's just sad that what it takes is an overwhelming mass of cases to see the obvious pattern. That does not speak well of the medical profession's ability to... observe. Just observe.

 

Name didn't ring a bell but doesn't look good.

https://twitter.com/user/status/1338484955236749313


http://www.margaretwilliams.me/2016/response-to-professor-fred-friedberg.pdf

 

It was obvious to Ramsey; sadly not to those who came after him.

 

"It’s why the doctor — who has been prescribing exercise “forever” for patients recovering from an illness — is changing his advice for the first time in 20 years."

FFS! Nobody who knows the first thing about exercise would recommend it to anyone still recovering from illness. The volunteer dads who coached us as kids in the 1960s and 70s insisted that if you're ill, you don't come back until you're completely better. Trainers working nowadays at our council gym for not much more than minimum wage tell customers this. Why do sodding medical degrees erase knowledge we've had for generations?

 

CPET testing shows that at least one section of people diagnosed with ME have a damaged aerobic respiration system. They may have fatigue the way other diseases do simply because the disease makes everything they do harder but in things like MS that fatigue is dealt with by a fully functioning energy system.

Before HIV no one suspected that a virus could infect the cells that protected the body against disease so the research money worked out lots of details of that system as well as how the virus worked.

Research into ME could elucidate details of the energy systems of the cell with implications for other diseases. Just think what we could have learnt.

 

https://twitter.com/user/status/1338850556656410624

 

Long COVID and periods: The unspoken impact on female well-being

https://www.medicalnewstoday.com/am...iods-the-unspoken-impact-on-female-well-being

I have been seeing reports of gynecological issues from the early days. Barely ever gets mentioned, too typical of issues mainly affecting women. I have seen roughly the same issues as with ME: changes, for example some who have always had very regular cycles are now out of whack, but also symptoms being highly increased during menstruation.

 

Podcast episode (in Swedish) by the Swedish National Board of Health and Welfare

https://twitter.com/user/status/1338833622510542848

 

Do we know if ME/CFS affects periods in the early stages?

 

That isn't strictly true.

It was well known that EBV could infect B-cells for example, and that this was a possible cause of B-cell lymphoma.

A study from 1974, for example:
https://academic.oup.com/jnci/article-abstract/52/4/1081/941478

Fauci talks about "an opportunity we cannot lose" but they (the CDC and NIH) have already dropped the ball. They could have conducted a large prospective population based study that studies people before they become infected with SARS-2, from the start of the pandemic. But instead, the idea of a widespread long-covid style post-viral illness was not considered at all. They ignored the illness for 6-9 months, time that they should have been studying it.

 

I am not sure whether this is the best thread for this post but as it addresses issues arising from early ME it might be. The question of exercise in the early stages has long been a point of contention. It was argued that we exercised and it did not help. We thought this was ignored by those who believed in GET. Apparently it was not. This is correspondence from the BMJ in 1990

How does such chronicity develop? Dr Ho-Yen criticizes the first stage of the model we proposed to explain such chronicity, and points out that far from initially adopting forced inactivity after a viral infection, many chronic sufferers did the opposite, and tried to exercise away the fatigue. We accept his observation. Dr HoYen's comments do indeed coincide with our own clinical impressions: many patients report initially adopting such strategies, and find that these are unsatisfactory, leading to a rapid recurrence of symptoms. However, we suggest this is an even more convincing explanation of the remainder of the model we propose Simple operant conditioning suggests that such a powerful experience of failure will lead to persistent avoidance, perhaps when the original need for it is no longer present. We also suggest that early and repeated exposure to uncontrollable, aversive and mysterious symptoms, such as the profound muscle pain that characterizes the syndrome, is another potent cause of the demoralization and helplessness so frequently found (Powell R, Wessely S, manuscript submitted for publication) and may in turn explain the high rates of mood disorder that have been observed in several studies.
ResearchGate

The Powell et al paper referred to is thisSci-Hub | Attributions and self-esteem in depression and chronic fatigue syndromes. Journal of Psychosomatic Research, 34(6), 665–673 | 10.1016/0022-3999(90)90111-G (sci-hub.se)

It is well worth reading the whole letter. Or re-reading it.

 

Coronavirus: 1 in 10 patients have symptoms lasting three months or more

https://www.independent.co.uk/news/health/coronavirus-long-covid-ons-data-b1774821.html

 

BBC: Coronavirus: 'Long Covid' impact estimated

This marks the start of the ONS's work in estimating the prevalence of long Covid - the longer-term health consequences of even mild coronavirus infections.

We can't yet be confident of exactly how many people have the condition.

The ONS said one in 10 people it surveyed who tested positive for Covid-19, still had symptoms 12 weeks later.

One in five had symptoms for five weeks or more.


...
The NHS also has a "Your Covid Recovery Plan" which has advice, particularly for those who needed hospital treatment.

It recommends the "three Ps" in order to conserve energy:

• Pace yourself so you don't push yourself too hard, and make sure you have plenty of rest
• Plan your days so your most tiring activities are spread out across the week
• Prioritise - think about what you need to do and what can be put off

 

https://twitter.com/user/status/1339220963544735744

 

But Hackett says even as the UK National Health System rolls out long-Covid clinics, he’s been disappointed to see these symptoms overlooked. “Their strategies include things like eating healthy, hydrating, and mindfulness,” he says. “How is this going to go down with seriously ill people? All they’re offering is platitudes.”

...

Lancaster says viruses may penetrate the blood-brain barrier more often than previously thought. “The Covid crisis has shined a light on overlooked post-viral chronic fatigue syndrome (CFS),” she says. “There’s a lot of indication that inflammation of the brain can lead to those symptoms. There’s a huge overlap between those conditions and long Covid.”

But though post-viral symptoms may linger for months or even years, it can be hard for doctors to find clues in neurological tests. While encephalitis can be seen on MRIs, damage to the cerebrospinal fluid might not be visible. (Doctors can, however, look for elevated biomarkers like cytokines.) “Unfortunately, that’s one of the reasons a lot of patients with CFS have been told it’s all in their heads. We’ve let those patients down,” says Lancaster.