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

I wonder whether any people who were positive for Covid-19 but were asymptomatic at the start will be followed up and found to have an ME/CFS-like state. This could explain people with ME/CFS who say their illness didn't follow an infection.

I have always wondered whether people who say things like operations triggered their illness actually had ME previously and the operation simply triggered a relapse that made the symptom profile more obvious.

 

Not sure whether this paper has been posted already - let me know if it has, and I'll delete the post.

A PDF is also downloadable:

https://www.sciencedirect.com/science/article/pii/S0277953620306456

Callard, F., Perego, D.E., How and Why Patients Made Long Covid, Social Science & Medicine,

https://doi.org/10.1016/j.socscimed.2020.113426

Revised Date:3 October 2020
Accepted Date:5 October 2020

This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copy editing, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that,during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.© 2020 Published by Elsevier Ltd.

Highlights

• Patients made visible the persistence and heterogeneity of COVID-19 symptoms

• Patients experiencing long-term symptoms (‘long-haulers’) made Long Covid

• Long Covid challenges early clinical and governmental assumptions about Covid

• Knowledge travelled from patients through media to formal health and policy channels

• Patient expertise and knowledge should be incorporated in the pandemic evidence base

Abstract
Patients collectively made Long Covid – and cognate term ‘long-haul Covid’ – in the first months of the pandemic. Patients, many with initially ‘mild’ illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than laid out in initial reports from Wuhan. Long Covid has a strong claim to be the first illness created through patients finding one another on social media: it moved from patients, through various media, to formal clinical and policy channels in just a few months. This initial mapping of Long Covid – by two patients with this illness – focuses on actors in the UK and USA and demonstrates how patients marshalled epistemic authority. Patient knowledge needs to be incorporated into how COVID-19 is conceptualised, researched, and treated.

Keywords
Chronic illness COVID-19 expertise long-hauler patient activism patient groups SARS-CoV-2 social media

--------------------------------------------

 

The answer is to do both. When a Longcovid case has similar symptoms as ME/CFS, it fits under the same umbrella, but may have a few unique characteristics.

 

i do not disagree with you, and i would say we are still in the early days, where very little is known but no more than 7 months has elapsed since getting infected. Those who still have lingering symptoms may still be on their way to recovery. Then, persistent and long-term symptoms may not have settled yet following initial ‘convalescence’ from viral attack (which would include lung health and immune health in my mind)

 

We have to wait and see if this illness is a relapsing/remitting type after 'recovering' from the initial virus. It can take months and even a few years to get the full picture.

I was fooled into thinking I recovered after 9 months. I returned to work and normal non stressful activities etc. I relapsed in less than a month.

 

Dr Campbell on LongCovid.

I haven't watched him in a while but he has talked to longhaulers in his previous videos, he says.

Here, he summarizes different studies on the matter and possible patheogeneses.

He also mentions post SARS and how even after a flu people can have sequelae up to 1yr and post intensive care syndrome.

No word on ME or "CFS" though.

 

I'm wondering if he didn't dare say the stuff he's been selling for decades, and has been awarded for, or if the editor didn't think it was relevant. He is literally famous in part because of his arguing for post-viral illness clearly being somatization.

Either way this is kind of shocking in itself. This man has built his career, has been honored for it, on de-medicalizing ME, selling the idea that it is actually a mere psychological block. Here he had the perfect platform to dispense wisdom earned over decades of practice and research and yet... nothing. Just generic comments that may have been said by any random junior doctor who had never heard about ME or post-viral illness in his life.

It'd be like talking with Wakefield about upcoming COVID vaccines and never bring up any of the MMR controversy. Utterly bizarre in so many ways. These people know their stuff lacks credibility and will only admit to what they think to friendly audiences.

 

(Could be paywalled for some, maybe opening in private/incognito mode should work)


Why Covid-19’s Impact on Health Is a Long-Term Worry

https://www.washingtonpost.com/busi...8333b2-0928-11eb-8719-0df159d14794_story.html

I think it's just a re-print of a Bloomberg article that may not be paywalled.

 

full article here
https://knowridge.com/2020/10/what-...-condition-affecting-some-covid-19-survivors/

 

Mayo Clinic appears to be doing a stupid. Again. With "experts" like that... It's called COVID Activity Rehabilitation Program.


Rehabilitation after COVID-19

https://newsnetwork.mayoclinic.org/discussion/rehabilitation-after-covid-19/

Having millions of individualized treatment programs is economically absurd. The very idea should be laughed out of any room it is stated.

Appears to be a generic PACE-style rehabilitation approach.

 

He's a nurse teacher and has been covering the pandemic from early on, also been interviewed on main stream media.

Many comments mention ME/CFS and I'm sure he knows "of" it, but I don't know in what way.

Maybe it's better someone from the UK contacts him? I'm not very familiar with their advocacy groups.

 

'Brain fog': the people struggling to think clearly months after Covid

https://www.theguardian.com/world/2...truggling-to-think-clearly-months-after-covid

Yes, the fact that there is still no medical term for a highly disabling symptom that has been reported by millions of people for decades is a DAMN SERIOUS PROBLEM. Without fail every time I mentioned this to a physician the reply would be reassurance that I was not incoherent. Ridiculous.

Bit off-topic but one of the only credible representation of brain fog I have seen in popular media was a character with lupus on the show The Shield. I don't remember the episode but the character was having a flare and it was portrayed so well.

The similarities to concussion and TBIs have been noted so many times and yet it is not research because despite millions of reports over decades brain fog STILL HAS NO MEDICAL TERM. What an incredible waste of useful information.

And of course because people have to commit to the worst mistakes to the worst possible extent every single time, never learning from anything ever:

Showing that evidence is completely unnecessary to the practice of evidence-based medicine, because people have attempted to build this causative relation for decades, have failed, and yet people will still readily suggest to go for it for another decades or two, putting everything on hold in the interval because that's apparently how EBM works.

 

It's a fantastic marketing ploy this whole PTSD business.

If you can label someone with any poorly understood health condition & without a clear prognosis has having PTSD then you can divert them into mental healthcare they don't need, gaslight them by denying their reality and trying to impose your own wishful thinking while denying access to the healthcare they need. Perfect ingredients for a case of PTSD, which is lucky because you happen to know a lot about that.

 

Interesting to see that term "cognitive impairment". Round about 1990 the term "cognitive dysfunction" was used. This seems an accurate and descriptive term. Somehow we ended up with the term "dysfunctional cognitions", which is, to me at least, meaningless. I have not been able to find any source earlier than Wessely for this. There may be one.

 

A uniquely American problem but a very large one.


COVID-19 ‘Long-Haulers’ Worry About Coverage, Costs

https://www.pewtrusts.org/en/resear...id-19-long-haulers-worry-about-coverage-costs

Ah, well then, those organizations have a lot to answer for, now don't they? How's that "we hope it doesn't happen" working out for Dr Koroshetz now?

Not like thousands of people have been begging for this for decades.

The names have changed but their meaning hasn't. Modern day hysteria existing to this day is a civilizational threat.

 

https://link.springer.com/chapter/10.1007/978-981-15-8681-1_8

 

I caught the tail end of a radio Scotland show today whilst dropping car off at garage. Clare Gerrada was advising that she was very fatigued for 4 months after contracting COVID19, but she got better.

Gist of soundbite being NHS staff affected will have been through significant stress , and we must have the requisite mental health support to help them.
This was the end of a piece and I may have picked it up wrongly, but it sounded very like the perpetuating symptoms trope.

Old wine in new bottles