Rheumatology and Long COVID: lessons from the study of fibromyalgia 2023,Calabrese

[Sly Saint]

Abstract
Rheumatology, such as other subspecialties, has both a unique perspective to offer as well as an evolving role to play in the global COVID-19 pandemic. Our field has already contributed meaningfully to the development and repurposing of many of the immune-based therapeutics which are now standard treatments for severe forms of the disease as well as to the understanding of the epidemiology, risk factors and natural history of COVID-19 in immune-mediated inflammatory diseases.

Still in evolution is our potential to contribute to burgeoning research efforts in the next phase of the pandemic: the syndrome of postacute sequelae of COVID-19 or Long COVID. While our field brings many assets to the study of Long COVID including our expertise in the investigation of chronic inflammation and autoimmunity, our Viewpoint focuses on the strong similarities between fibromyalgia (FM) and Long COVID. While one can speculate on how embracing and confident practising rheumatologists already are regarding these interrelationships, we assert that in the emerging field of Long COVID the potential lessons from the field of fibromyalgia care and research have been underappreciated and marginalised and most importantly now deserve a critical appraisal.

https://ard.bmj.com/content/early/2023/05/24/ard-2023-224250?rss=1

 

[SNT Gatchaman]

FM and ME/CFS are now considered chronic overlapping pain conditions (COPCs), which include other common pain conditions such as tension headache, irritable bowel syndrome, low back pain, temporomandibular disorders and bladder pain syndrome.

These conditions all have nociplastic pain, a newly recognised third mechanism of pain, as their primary mechanism. Whereas nociceptive pain occurs because of inflammation or damage of peripheral tissues, and neuropathic pain is due to nerve injury, nociplastic pain is largely driven by the central nervous system (CNS)

These same nociplastic pain mechanisms are also commonly superimposed on nociceptive pain states such as autoimmune disorders, where up one-third or more are thought to have what used to be called secondary FM and then more recently central sensitisation. The risk factors for these conditions include female sex (which has 1.5–2×OR), SES factors, poor sleep, physical inactivity and cigarette smoking, which overlaps a tremendous amount with what is seen in Long COVID.

As rheumatologists, we know that even though there have been major advances in the therapeutics which enable us to much more effectively treat the inflammation and resultant tissue damage in individuals with autoimmune disorders, many or even most of our patients are still left with a constellation of fatigue, multifocal pain, sleep, memory and mood disturbances. So one lesson from the rheumatology community to the broader medical community is that even with established autoimmune disorders that often begin as very inflammatory conditions, the core symptoms of fatigue, sleep, multifocal pain, memory and mood problems seen in these nociplastic disorders often continue once the inflammation is successfully treated.

Moreover, the most effective treatments of these nociplastic pain conditions are non-pharmacological therapies such as various types of cognitive behavioural therapy, having individuals become more active and engaging in the use of a number of integrative therapies such as meditation, yoga, Tai Chi, physical and movement therapies, and acupuncture/acupressure.

It would seem that there are rheumatologists and then there are rheumatologists. Happily we have the pleasure of the company of the latter.

 

[Charles B.]

I’ve discussed Lenny Calabrese’s work elsewhere on the forum. I’ve always found it a rare amalgamation of arrogance, condescension, and charlatanry. Naturally, he’s treated as an expert opinion

 

[shak8]

The authors send greetings from the Hypothesis Nebula, a fictional realm.

 

[rvallee]

I’ve discussed Lenny Calabrese’s work elsewhere on the forum. I’ve always found it a rare amalgamation of arrogance, condescension, and charlatanry. Naturally, he’s treated as an expert opinion

Yeah, it seems that any initial hope of MDs experiencing LC would teach them something was badly misplaced. Turns out professional indoctrination beats personal experience most of the time. Good or bad intent, it often comes out the exact same. This isn't as damaging as what Garner is doing, but it ends up the exact same for all of us. The evidence for treating pain with this mumbo-jumbo is just as bad as the rest, it's all based on the same cheap logical fallacies and false attribution.

It really depends on how it ends up. If they recover, a few will have learned something, but more often than not they go back to the standard dogma. If they don't recover they simply cannot have any impact, so that most who can have an impact will end up doing mostly harm. Clearly there is no limit to how people can convince themselves that they were smart, when really they were just lucky.

 

[Holinger]

“A FM/CFS state can be experimentally induced in health individuals with sleep restriction and exercise cessation”
Quite unbelievable some of the stuff said in this study. Daniel Clauw seems to have little grasp of the concept of Me/cfs and keeps pushing the central sensitization barrow.

 

[RedFox]

A FM/CFS state can be experimentally induced in health individuals with sleep restriction and exercise cessation

The authors must think ME feels like being a little tired and that people with ME are just too weak-willed to get on with life. It's extremely arrogant and ableist. It makes me sick. Many times in my life I didn't exercise or sleep enough, and it's incomparably different. When I was sleep deprived I felt a little tired and irritable but not so much I couldn't get on with school. With ME I have pretty serious problems with executive function and often I'm so tired I can't think straight. Also the onset of PEM hours after exercise is nothing like being sleep-deprived, my brain is so "stuck" that I can hardly get myself to do anything.

 

[bobbler]

The authors must think ME feels like being a little tired and that people with ME are just too weak-willed to get on with life. It's extremely arrogant and ableist. It makes me sick. Many times in my life I didn't exercise or sleep enough, and it's incomparably different. When I was sleep deprived I felt a little tired and irritable but not so much I couldn't get on with school. With ME I have pretty serious problems with executive function and often I'm so tired I can't think straight. Also the onset of PEM hours after exercise is nothing like being sleep-deprived, my brain is so "stuck" that I can hardly get myself to do anything.

Stupid as well - I’d say sleep deprivation say for a decade at 3hrs per night excluding one weekend day to catch up enough to just keep slogging back for more + ‘overtraining’ until your calves start receding instead of getting larger and then having to push through enough you get bone pain every day that never goes away and at least once a week something with your arms (I’d suggest above your head so he might want to start with painting a ceiling) until you get to the point you can lift a drink to your mouth and have to support your own arms with pillows for at least 4yrs is what is the norm ON TOP of the me/cfs due to the enforced ‘won’t listen or acknowledge’

so if you want to get near to pretending to ape it then they’ll at least need volunteers to sign up to a decade of OVERexertion + sleep deprivation both enforced of course, because without the me/cfs underneath to ensure that the overexertion means you can sleep less well at night then I doubt most healthies could ape it even for a week. But I’d be interested in reading their diaries a few years in about what it feels like scraping out of bed to get to work on top of a Thursday - having had to set alarm at 5.30am because you have to be on time and it’ll take at least two hours to start waking up enough to even start trying to make your body move

if he thinks this it’s just bigotry and propaganda and he might want to be his own first volunteer in what I’ve annotated above and show us all how easy it feels even when you don’t have the disease there on top being made worse just ‘along some of the brutal regime’

 

[Turtle]

“A FM/CFS state can be experimentally induced in health individuals with sleep restriction and exercise cessation”
Quite unbelievable some of the stuff said in this study. Daniel Clauw seems to have little grasp of the concept of Me/cfs and keeps pushing the central sensitization barrow.

According to Clauw/Calabrese I'm having nociplastic pain because I was on my electric bike for 10 Km to get my covid vaccination yesterday. All the muscles I used are sore.

I also have a very bad knee, in need of replacement, shouldn't that cause me even more pain if their theory is correct? My knee is not painful! (Anti nociplastic pain?)
I do feel the spot where I was vaccinated, that's a normal side effect, isn't it?

Three pain/no pain experienxes and they come up with nociplastic pain just because they don't understand ME/CFS?