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

[Trish]

By the power of Sci hub!!
https://sci-hub.tw/10.1001/jama.1991.03460080032011

I could provide a sci-hub link but presume all can do that anyway.

Thanks. I'm having trouble finding sci hub links at the moment. I also found ProHealth republished it with permission in 1994
https://www.prohealth.com/library/skeptical-of-skeptics-11752

 

[Shinygleamy]

When I was growing up the people I knew and lived with and socialised with and went to school with (or their parents) were, to a large extent, imbued with the ideas behind the Protestant work ethic. I think this is extremely common. My father ran his life by it - hard work, early to bed and early to rise, frugality, sick people were attention-seeking shirkers and were usually assumed to be making it up and were just lazy. He would not have been happy to learn that some people simply couldn't exercise at all - it would go against all his beliefs about the right way to live one's life and he simply would not believe it. I think this is extremely common. Activity and being busy are right and good, sickness and immobility are wrong and evil, and nothing would have changed his mind.

I think the powers-that-be share these beliefs too. The poor, the long-term ill, the unlucky, are architects of their own misfortune in many people's minds. Compassion is in very short supply, in my opinion.

I think it might also have come from the 1920's with the heathly body is a healthy mind ethos. Where girls and boys where encouraged to take part in formation exercise. Before then only the upper classes did leisure exercise everyone else did hard labour/work.

 

[Cheshire]

Persistent symptoms after viral illnesses such as Covid-19 are common, but a challenge to study
BY @dave30th

From 2014 to 2018, DePaul University psychologist Leonard Jason and colleagues collected personal information and blood samples from more than 4,500 healthy college students. They followed the group as some students contracted mononucleosis and a small proportion of those subsequently developed chronic fatigue syndrome — the debilitating disease also called myalgic encephalomyelitis, or ME/CFS, that is frequently triggered by an acute viral illness.

As Jason and his team were analyzing data earlier this year — seeking patterns that might explain why some students remained healthy and others got sick and stayed sick — reports began emerging of troubling medical complaints lasting for weeks and months following cases of Covid-19. Some of these post-Covid symptoms, including profound exhaustion after exertion and deficits in memory and concentration, resembled those experienced by ME/CFS patients.

https://www.statnews.com/2020/09/11...m_source=twitter&utm_campaign=twitter_organic

Edit: thread there

 

[Dolphin]

Evidence and history show that chronic diseases like these aren’t either/or silos, so while I do respect Tuller he has no real evidence to say that they shouldn’t be conflated.

I don’t have bulletproof evidence other than the studies and surveys that have come out showing a striking resemblance in many core symptoms between long COVID and ME/CFS, plus the retrospective studies looking at SARS, EBV, Giardia, and other post infectious syndromes leading to ME/CFS. Each of these other infections caused unique long-term symptoms yet all had a common effect of causing ME/CFS in a significant percentage of people.

People with COVID can have lasting organ damage due to the fact that this novel coronavirus can be particularly damaging, but that doesn’t mean that they can’t also have ME/CFS too. It’s myopic to think it has to be either/or.

David Tuller is associated with ME/CFS so may need to be careful what he says on this.

Given long Covid is a collection of complications after Covid, one can probably say long Covid isn’t anything. Though at least some in the long Covid community seem to be more willing to be associated with other medical conditions than ME/CFS.

 

[Tom Kindlon]

https://www.irishtimes.com/news/hea...covid-19-survivor-five-months-later-1.4351767

 

[dave30th]

It’s myopic to think it has to be either/or.

Saying they should not be conflated is not the same as saying it's "either/or." Many people with post-Covid are clearly having symptoms related to specific organ damage that are not seen in ME, at least not that I've ever heard. That doesn't mean they can't have ME as well. But ME won't capture much of what is wrong in long-Covid, I'd guess.

Why would someone with shortness of breath because of lung-scarring or who has a stroke because of blood-clotting issues be said to have ME? How would that help people with ME and people who have lung-scarring post-Covid?

 

[Tom Kindlon]

https://www.wired.co.uk/article/coronavirus-long-haulers-negative-tests-covid-19

 

[Sly Saint]

Each patient will need individual assessment, just as all people with ME should have before being diagnosed with ME.

and therein lies the ongoing problem of abandoning any kind of investigation/tests after the minimal initial basic tests before diagnosis. There is no follow up plan (at least not in the UK), apart from referral to a fatigue clinic for 'therapy'.

 

[Trish]

https://www.wired.co.uk/article/coronavirus-long-haulers-negative-tests-covid-19

“Other patients are hanging on in the hope that their symptoms will eventually be classed as #chronicfatiguesyndrome (#CFS)”

and therein lies the ongoing problem of abandoning any kind of investigation/tests after the minimal initial basic tests before diagnosis. There is no follow up plan (at least not in the UK), apart from referral to a fatigue clinic for 'therapy'.

So sad to read the patient quoted in the Wired article who has long covid symptoms that sound very like ME, and hasn't been able to get a diagnosis or any help because the tests came back negative. They are described as looking forward to reaching the 6 month mark shortly so they can be diagnosed with ME/CFS and 'be sent to a specialist'. Sadly all they are likely to get is a long wait for a referral to a fatigue clinic and then another long wait to get useless CBT.

 

[rvallee]

Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?

https://openres.ersjournals.com/content/early/2020/09/01/23120541.00542-2020

Results 112 hospitalised patients and 2001 non-hospitalised patients (confirmed COVID-19, n=345; symptom-based COVID-19, n=882; and suspected COVID-19, n=774) were analysed. The median number of symptoms during the infection reduced significantly over time (14 (11–17) versus6 (4–9), p<0.001). Fatigue and dyspnoea were the most prevalent symptoms during the infection and at follow-up (fatigue: 95% versus 87%; dyspnoea: 90% versus 71%).

Conclusion In previously hospitalised and non-hospitalised patients with confirmed or suspected COVID-19, multiple symptoms are present about 3 months after symptoms onset. This suggests the presence of a “post-COVID-19 syndrome” and highlights the unmet healthcare needs in a subgroup of patients with “mild” or “severe” COVID-19.

https://openres.ersjournals.com/content/erjor/early/2020/09/01/23120541.00542-2020.full.pdf

 

[Dolphin]

Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?

https://openres.ersjournals.com/content/early/2020/09/01/23120541.00542-2020



https://openres.ersjournals.com/content/erjor/early/2020/09/01/23120541.00542-2020.full.pdf

I searched for “chronic fatigue”. This is all that showed up.

Previously, interventions for chronic fatigue syndrome or post-viral fatigue were developed [22]. Whether or not these interventions are effective post-COVID-19 remains unknown [23]

15. Lam MH, Wing YK, Yu MW, Leung CM, Ma RC, Kong AP, So WY, Fong SY, Lam SP. Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow- up. Arch Intern Med 2009; 169: 2142–7.
22. Rimes KA, Chalder T. Treatments for chronic fatigue syndrome. Occup Med (Lond) 2005; 55:32-9.
23. Torjesen I. NICE cautions against using graded exercise therapy for patients recovering from covid-19. BMJ 2020; 370: m2912.


Edited to add: here's the context of reference 15

Carfi and colleagues reported also fatigue and dyspnoea about 60 days after the onset of COVID-related symptoms in previously hospitalized COVID-19 patients [4]. This is also in line with findings in other post-viral/infectious syndromes [15-18] and findings from critically ill (non-COVID) patients that have been discharged from the ICU, who still experience a wide array of symptoms months after the hospitalization, also called the post-ICU syndrome [19].

15. Lam MH, Wing YK, Yu MW, Leung CM, Ma RC, Kong AP, So WY, Fong SY, Lam SP. Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up. Arch Intern Med 2009; 169: 2142–7.
16. Moldofsky H, Patcai J. Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study. BMC Neurol 2011; 11: 37.
17. Schanke AK, Stanghelle JK. Fatigue in polio survivors. Spinal Cord 2001; 39: 243–51.
18. Voss JG. Predictors and Correlates of Fatigue in HIV/AIDS. J Pain Symptom Manage 2005; 29: 173–84.
19. Svenningsen H, Langhorn L, Ågård AS, Dreyer P. Post-ICU symptoms, consequences, and follow-up: an integrative review. Nurs Crit Care 2017; 22: 212–20.

 

[Tom Kindlon]

https://www.wired.co.uk/article/coronavirus-long-haulers-negative-tests-covid-19

Avindra Nath is a neurologist at the National Institute of Neurological Disorders and Strokes in the US who specialises in understanding how infectious diseases impact the brain. When the Covid-19 pandemic took hold, he received a flood of emails from people reporting long-term neurological complications such as brain fog, tingling muscles and sleep problems. “We expected that to happen. A percentage of people [with viral illnesses] will end up with a syndrome called [myalgic encephalomyelitis or CFS]. That happens in almost all viral infections,” he says. “And this affected a large population, so it’s not a surprise that you have a significant number of people who are complaining of these post-viral syndromes”

 

[Snowdrop]

Kate Kelland continues her social distancing from ME while writing on long-covid sufferers. Predictably she quotes all the sources that are worse than useless:

https://www.reuters.com/article/us-...ead-haunt-covid-19-long-haulers-idUSKBN25U0ET

Rona Moss-Morris, head of psychology at the IPPN, says evidence from previous disease outbreaks and from studies of patients who have been in critical or intensive care shows a significant impact on levels of anxiety, depression and post-traumatic stress disorder (PTSD).

Because this obviously should be the only focus of concern for people who need medical help for their illness. <HUGE Sarcasm> Kowtowing to the usual eminences.

 

[Mij]

 

[Trish]

most noted improvement after gradually increasing exercise.

Or maybe they were improving anyway. Not all will end up with ME. Hopefully most will recover fully, as with other post viral patients.

 

[alktipping]

Thanks. I'm having trouble finding sci hub links at the moment. I also found ProHealth republished it with permission in 1994
https://www.prohealth.com/library/skeptical-of-skeptics-11752

thank you trish i cannot read anything on sci hub that waving hand is seriously distracting i think the woman there wants to be famous or something lol

 

[Arnie Pye]

Kate Kelland continues her social distancing from ME while writing on long-covid sufferers. Predictably she quotes all the sources that are worse than useless:

https://www.reuters.com/article/us-...ead-haunt-covid-19-long-haulers-idUSKBN25U0ET

Rona Moss-Morris, head of psychology at the IPPN, says evidence from previous disease outbreaks and from studies of patients who have been in critical or intensive care shows a significant impact on levels of anxiety, depression and post-traumatic stress disorder (PTSD).

Because this obviously should be the only focus of concern for people who need medical help for their illness. <HUGE Sarcasm> Kowtowing to the usual eminences.

I always get the impression that BPS stuff is all about diminishing and demeaning the patient. There appears to be nothing a patient can say that is ever taken at face value and just believed.

 

[leokitten]

I think it's too early to tell who has what. The point about not conflating seems to me to be reasonable in the sense that some will develop ME, but others will have organ damage and not ME which may need different, and sometimes emergency, testing and treatment. And some may have both.
If all are put in the ME category before adequate testing, some with organ damage may be missed. Each patient will need individual assessment, just as all people with ME should have before being diagnosed with ME. I suspect @dave30th and @leokitten agree about this, but are expressing it differently.

Definitely... I’ve said in my posts in this thread that not all long COVID will have ME, but a percentage will, especially the ones that have relatively mild illness and do not have any sign of organ damage but have such striking ME/CFS symptoms that, when looking over the surveys, make me do a double take.

 

[Snowdrop]

I always get the impression that BPS stuff is all about diminishing and demeaning the patient. There appears to be nothing a patient can say that is ever taken at face value and just believed.

Yes, in the case of this particular article it takes the anxiety over being sick very seriously but other than mentioning symptoms (and how they relate to anxiety) the article is completely silent on the topic of what might be going on physically or what might be done about it. Absolute silence. And I do find that demeaning.

Although I think by choosing this type of story where it's from a patient perspective makes it easier to get away with.

 

[Snowdrop]

thank you trish i cannot read anything on sci hub that waving hand is seriously distracting i think the woman there wants to be famous or something lol

If you click on Alexandra Elbakyan (she created Sci-Hub) it will open a second window and the first window will revert back to just the research study you want to view.