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

[John Mac]

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.

Chronic fatigue has long been an unsolved mystery, yet medical experts never imagined that its secrets might be unlocked by a global pandemic.

The link between COVID-19 and the debilitating condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) stems from the large number of recovering patients — estimated at 20 to 30 per cent of the total — known as “long-haulers” who continue to feel overwhelmingly tired no matter how much rest they have had. Some describe feeling as if they have “been hit by a truck.” With so many more people now struggling with fatigue following COVID-19 infections, advocates and experts believe the pandemic could lead to more attention — and research — into ME/CFS.

What is ME/CFS?

ME/CFS is a complex disease, so disabling that it often confines patients to bed. Its hallmark symptom is known as post-exertional malaise, where fatigue worsens after any physical or mental activity. Patients have little option but to pace themselves by choosing between what they do during the day — ‘do I cook or take a shower?’

Despite its name, the symptoms of ME/CFS go well beyond fatigue. Patients also suffer from sleep problems, brain fog, pain, dizziness, and hypersensitivity to light and sound, among other symptoms.

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

 

[rvallee]

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.

 

[rvallee]

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:

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.

“In the old days, it was like: You don't feel that great, go out and go for a run. You'll perk up, you'll feel better,” said Metzl, who besides practicing sports medicine is an avid marathon runner and triathlete.

“But I think until we know more about this disease, things like exercising when you're not feeling so hot are really not very good ideas for some of these complications that can come when people push too hard on a body that's trying to recover from COVID. This seems to make it worse in some cases.”

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.

 

[rvallee]

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



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

Professor Fred Friedberg asks why cognitive behavioural therapy (CBT) is so vilified in the chronic fatigue syndrome community.

He opens his Editorial by stating: “Cognitive behaviour therapy (CBT) is a well-established psychosocial intervention for psychiatric disorders, pain management and stress related to medical conditions” (Editorial: Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community? Fatigue, Biomedicine, Health & Behavior 2016:vol 4: no:3:127-131) but ME/CFS is not, and never has been, a psychiatric disorder and CBT has no more role in its management than in the management of multiple sclerosis, MND, Parkinson’s Disease, malignancies or other autoimmune disorders such as lupus or RA.

 

[chrisb]

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

 

[Kitty]

"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?

 

[Hutan]

A number of posts about occupational therapy have been moved here:
Occupational therapy and ME/CFS

 

[Trish]

Moderator note:
Some posts have been moved to this thread about psychologising long Covid.
Some posts have been deleted as off topic.

Please try to keep your posts to the thread topic of the possibility of ME or PVFS after COVID-19, and avoid commenting on or speculating about any individual's health.

 

[Sly Saint]

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

The community is also learning how to plan and pace for post-exertional malaise. Clinicians used to make the mistake of encouraging ME/CFS patients to remain active when, in fact, rest has turned out to be the best medicine. They are now determined not to let COVID-19 long-haulers make the same mistake.

 

[Mithriel]

The Atlantic - How Science Beat the Virus - And what it lost in the process - Ed Yong

Anthony Fauci hopes so. His career was defined by HIV, and in 2019 he said in a paper he co-wrote that “the collateral advantages of” studying HIV “have been profound.” Research into HIV/AIDS revolutionized our understanding of the immune system and how diseases subvert it. It produced techniques for developing antiviral drugs that led to treatments for hepatitis C. Inactivated versions of HIV have been used to treat cancers and genetic disorders. From one disease came a cascade of benefits. COVID‑19 will be no different. Fauci had personally seen cases of prolonged symptoms after other viral infections, but “I didn’t really have a good scientific handle on it,” he told me. Such cases are hard to study, because it’s usually impossible to identify the instigating pathogen. But COVID‑19 has created “the most unusual situation imaginable,” Fauci said—a massive cohort of people with long-haul symptoms that are almost certainly caused by one known virus. “It’s an opportunity we cannot lose,” he said.

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.

 

[Tom Kindlon]

 

[rvallee]

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

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

Most of the people we spoke to told us that ever since they contracted COVID-19, they have been experiencing irregular periods, unusual clotting of their period blood, or worsened premenstrual syndrome (PMS).

However, while everyone we spoke to had experienced some changes to their menstrual cycle, the form of these disruptions varied.

One contributor, Rose, reported getting irregular periods since she developed COVID-19, months previously.

“I noticed that my menstrual cycles changed immediately when I became ill [with COVID-19],” Rose told MNT.

“[My periods] have changed in frequency, duration, flow, intensity, and pain level. I also experience COVID symptom flare-ups before my period starts, which is rather confusing because my periods are unpredictable,” she told MNT.

For instance, Jean explained that: “The reason I started birth control was due to incredibly painful periods and other debilitating PMS symptoms. Now, these are back, though not as bad as prior to taking the birth control. I am already housebound due to other symptoms.”

“One other thing is [that] my major issues, [and] emergency [hospital] visits, seem to all coincide with my cycle,” she added.

“[In] the days leading up to my period, my eczema would worsen, my breathing would start to get more difficult, my POTS [postural orthostatic tachycardia syndrome] would act up, I would get a migraine with aura, my fingertips would have sharp pains, my joints would start hurting, and my right leg would start tingling.”

“With regard to my period, my [gynecologist] just says it’s due to the stress that my body is going through due to this illness, while all other healthcare professionals do not care, since having periods is normal (they don’t put it into a context that I haven’t had periods for the past 10 years).”

“In general, medical […] advice is lacking for the entire COVID illness, [and more so] with regard to periods. I’ve been told [that it is due to] ‘stress and anxiety’ by the majority of doctors for every symptom. I’ve worked in the medical device field in women’s health, so I’m very aware of these issues — the gender bias is ingrained in medicine, and add [COVID] to that… I’ve been through lots of stress in certain periods of my life and have never had any of these symptoms.”

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.

 

[mango]

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

84. On covid-19 and the need for rehabilitation

Some of those who fell ill with covid-19 need long-term rehabilitation to be restored and be able to return after the illness. What efforts are needed? And how should health care respond to this need? Listen to Judith Bruchfeld, chief physician and associate professor of infectious diseases at Karolinska University Hospital and Karolinska Institutet, Cecilia Winberg, incoming union president of the professional and trade union Physiotherapists, and Thomas Lindén, head of the department of knowledge management for health and medical care. The conversation is led by the National Board of Health and Welfare's Director General Olivia Wigzell.

 

[leokitten]

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.

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

 

[Snow Leopard]

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.

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.

 

[chrisb]

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.

 

[Andy]

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

One in 10 people infected with coronavirus experience symptoms that last for three months or longer, the Office for National Statistics has said.

A new analysis to try and determine the extent of the ‘long Covid’ problem among infected patients also found one in five patients reported having symptoms that lasted for five weeks or longer.


The ONS said it estimated that during the week ending on 28 November there were around 186,000 people in England living with coronavirus symptoms that had lasted between five and 12 weeks.

This number could be as high as 221,000 the ONS warned.

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

 

[Kalliope]

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

 

[Dolphin]

 

[Kalliope]

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.