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

[Esther12]

I suspect that keeping some distance between ME/CFS and Long-Covid is likely to be good for us.

If Long Covid specific research finds anything useful then it's relevance to CFS is bound to be quickly checked. CFS researchers (good and bad) are clearly working to get involved in LC (and at least in the UK, it seems to be the bad who are getting more funding). We're in the midst of this pandemic and there are going to be a lot of unusual 'psychosocial' aspects to peoples' lives and we do not know how that could affect people.

I also worry that there are some instances of people (patients and doctors) giving advice to those with LC on the basis of views on ME/CFS and I think that this is a bad idea. We don't know what's best for ME/CFS, and those with LC tend to be only recently ill: those least studied, most likely to naturally recover, and for whom we have a particularly poor understanding of what is best for them.

I see tying LC to ME/CFS as something that poses a lot of risks with little real benefit.

Most of the ME/CFS patients I've seen commenting have been rightly cautious in what they say to those with LC but it just takes a few over-confident over-insistent people to come across like arse-holes - and there are a a couple of people like that who are very active on twitter. Personally, I understand why some LC people are pissed off by comments from people with ME/CFS, even if it's not fair to judge people on the basis of their diagnosis.

 

[Andy]

I suspect that keeping some distance between ME/CFS and Long-Covid is likely to be good for us.

If Long Covid specific research finds anything useful then it's relevance to CFS is bound to be quickly checked. CFS researchers (good and bad) are clearly working to get involved in LC (and at least in the UK, it seems to be the bad who are getting more funding). We're in the midst of this pandemic and there are going to be a lot of unusual 'psychosocial' aspects to peoples' lives and we do not know how that could affect people.

I also worry that there are some instances of people (patients and doctors) giving advice to those with LC on the basis of views on ME/CFS and I think that this is a bad idea. We don't know what's best for ME/CFS, and those with LC tend to be only recently ill: those least studied, most likely to naturally recover, and for whom we have a particularly poor understanding of what is best for them.

I see tying LC to ME/CFS as something that poses a lot of risks with little real benefit.

Most of the ME/CFS patients I've seen commenting have been rightly cautious in what they say to those with LC but it just takes a few over-confident over-insistent people to come across like arse-holes - and there are a a couple of people like that who are very active on twitter. Personally, I understand why some LC people are pissed off by comments from people with ME/CFS, even if it's not fair to judge people on the basis of their diagnosis.

And I disagree with pretty much all of this, but obviously only time will give us some idea which of us is right.

 

[Hoopoe]

I see tying LC to ME/CFS as something that poses a lot of risks with little real benefit.

I really don't understand the logic here. It's a bit like those people who seem to think that you can choose your reality. There is quite obviously a subset within LC that is very similar to ME/CFS and it doesn't help anyone to pretend otherwise.

Some people think there is something to be gained from not seeing the similarities.

 

[Esther12]

I really don't understand the logic here. It's a bit like those people who seem to think that you can choose your reality. There is quite obviously a subset within LC that is very similar to ME/CFS and it doesn't help anyone to pretend otherwise.

Some people think there is something to be gained from not seeing the similarities.

As you say, it's clear that Long Covid is a form of post-viral health problem. At the moment a lot of post-viral health problems are lumped in with ME/CFS (seemingly along with other, less clearly post-viral health problems). I don't think that anyone would deny that. But there are still judgements to be made about how to respond to that, the level of lumping and splitting, etc. Some people seem to think that we should start by assuming LC (or at least the significant portion of it not caused by verifiable lung damage, etc) is ME/CFS and that LC patients should be given advice that those suffering from long-term ME/CFS report finding useful, and I see that as an approach that risks causing needless problems. Given how little solid knowledge we have about ME/CFS, and how much quackery there is around ME/CFS, I don't see much disadvantage to starting from scratch with LC and seeing where that goes. Views on ME/CFS are likely to have an impact on LC research regardless of how explicitly they're linked, and any progress in either area is likely to benefit the other regardless of whether they're explicitly linked. Maintaining a distance might help LC patients avoid the worst forms of CFS quackery and help us minimise the harm done by the inevitable torrent of poor research and anecdotes that will surround LC.

 

[Hoopoe]

Long covid patients might be motivated to deny the similarity because they're afraid that the association with ME/CFS could burden LC and prevent progress. I think they have an inaccurate view of how stigma and neglect works. LC is at very high risk of being stigmatized and neglected because nobody understands postviral diseases and stigma and neglect is the end result of that.

 

[Esther12]

Long covid patients might be motivated to deny the similarity because they're afraid that the association with ME/CFS could burden LC and prevent progress. I think they have an inaccurate view of how stigma and neglect works. LC is at very high risk of being stigmatized and neglected because nobody understands postviral diseases and stigma and neglect is the end result of that.

I think that there's a lot of truth to that. Undoubtedly, some LC patients started with unfair attitudes about ME/CFS, and others a fair (though perhaps emotionally insulting) desire to just try to evade the stigma of ME/CFS. I can see that being frustrating to ME/CFS patients, but that's not to say that quickly lumping LC with ME/CFS would be good for us.

 

[Wonko]

The disadvantage is, if long covid 'is' a form of post viral sequelae, as seems likely, then the advice, up until fairly recent times has been resting/convalescence.

In more recent times, seemingly on the basis of merely opinion, not even the opinion of doctors but that of some psychiatrists, the advice/instruction is not to rest, but to get back to work, as soon as possible.

There may well have been good reason for telling people with post viral conditions to convalesce - telling them, effectively not to, can in a similar 'set' of conditions, with very similar symptoms, commonly known as ME/CFS, 'probably' lead to a 'deterioration' in patients health, which is supposed to be the opposite of what doctors and medical advice are for.

Any advantage is not to us, the non existent, but to those who might join us if they are told to follow the current mantra (get back to work as soon as any acute symptoms are gone), as opposed to the old one (rest, then rest, the rest, until life shows you you are ready, and even then start slow).

 

[Hoopoe]

As you say, it's clear that Long Covid is a form of post-viral health problem. At the moment a lot of post-viral health problems are lumped in with ME/CFS (seemingly along with other, less clearly post-viral health problems). I don't think that anyone would deny that. But there are still judgements to be made about how to respond to that, the level of lumping and splitting, etc. Some people seem to think that we should start by assuming LC (or at least the significant portion of it not caused by verifiable lung damage, etc) is ME/CFS and that LC patients should be given advice that those suffering from long-term ME/CFS report finding useful, and I see that as an approach that risks causing needless problems. Given how little solid knowledge we have about ME/CFS, and how much quackery there is around ME/CFS, I don't see much disadvantage to starting from scratch with LC and seeing where that goes.

At the moment, a lot of different health problems are being lumped into ME/CFS. So much gatekeeping in ME/CFS seems to based on the assumption that there is reliable method of separating one subset from the others.

The lumping is even more evident in LC (which to be fair, is intentionally inclusive and intended to draw attention to a neglected problem rather than be diagnostic criteria).

The reality appears to be that the situation is already a complete mess and that attempting to establish boundaries that separate subsets and diagnostic labels is not very realistic for either ME/CFS or LC. We simply aren't at the stage of knowledge yet where we could do this. Instead we need all the attention on getting large research projects done that could actually give us the knowledge we need for this task.

The LC community risks sabotaging their own research efforts if they exclude ME from the picture because a lot of time and effort could go towards repeating all the fruitless research paths that have been done in ME.

Also, having LC separated is I suspect exactly what BPS people want. For a awhile at least, it solves some of their problem and allows them to continue doing what they've done with ME/CFS. At the moment they're still waiting to see how the situation evolves, but when it becomes clear that LC (like all the other problems it resembles) isn't biomedically understood, they'll start their propaganda machine.

 

[Esther12]

The disadvantage is, if long covid 'is' a form of post viral sequelae, as seems likely, then the advice, up until fairly recent times has been resting/convalescence.

In more recent times, seemingly on the basis of merely opinion, not even the opinion of doctors but that of some psychiatrists, the advice/instruction is not to rest, but to get back to work, as soon as possible.

There may well have been good reason for telling people with post viral conditions to convalesce - telling them, effectively not to, can in a similar 'set' of conditions, with very similar symptoms, commonly known as ME/CFS, 'probably' lead to a 'deterioration' in patients health, which is supposed to be the opposite of what doctors and medical advice are for.

Any advantage is not to us, the non existent, but to those who might join us if they are told to follow the current mantra (get back to work as soon as any acute symptoms are gone), as opposed to the old one (rest, then rest, the rest, until life shows you you are ready, and even then start slow).

It seems that we have such a poor understanding of what's happening that I don't feel comfortable giving any advice. More selfishly, I also worry that giving advice on pacing etc prematurely risks backfiring. eg some people can promote overly restrained forms of 'pacing' that may be inappropriate for patients likely to be improving naturally and on their way to recovering. This could even come to be resented by those who overly restricted their own activity. Amongst those within LC some may benefit from GET. I think that it's fair to draw attention to some of the problems with things like GET and ME/CFS but ideally this would be done in a cautious and careful way, of the sort that twitter is not well suited to.

The reality appears to be that the situation is already a complete mess and that attempting to establish boundaries that separate subsets and diagnostic labels is not very realistic for either ME/CFS or LC. We simply aren't at the stage of knowledge yet where we could do this. Instead we need all the attention on getting large research projects done that could actually give us the knowledge we need for this task.

The LC community risks sabotaging their own research efforts if they exclude ME from the picture because a lot of time and effort could go towards repeating all the fruitless research paths that have been done in ME.

I'm not arguing for establishing clear boundaries, or pretending that we know LC and ME/CFS are different. Really I'm just arguing for people to acknowledge what a mess things are and that it's very difficult to say anything much about LC or ME/CFS with real confidence.

I'm not sure how many research paths can be confidently ruled out on the basis of ME/CFS research, and I expect that LC research funding is going to be influenced by ME/CFS research (though probable more likely for bad than good).

Also, having LC separated is I suspect exactly what BPS people want. For a awhile at least, it solves some of their problem and allows them to continue doing what they've done with ME/CFS. At the moment they're still waiting to see how the situation evolves, but when it becomes clear that LC (like all the other problems it resembles) isn't biomedically understood, they'll start their propaganda machine.

I don't know. We've made some tentative progress with ME/CFS and I suspect that LC will be seen as a useful way to jump over that progress by some BPS people. Crawley, Chalder, etc are already getting involved. To me, this looks likely to be a train crash and I don't see much that can be done to avoid it. I also expect that they'll have learnt a lot from PACE etc and will have find ways to present their work in a way that will be harder to criticise. Ideally, I'd like to not be in the middle of all that.

 

[Andy]

NINDS supports new initiative to understand long-term symptoms and promote recovery from COVID-19

Although the world is currently focused on the COVID-19 pandemic, I am hopeful that with the advent of vaccines and improved treatments we will ultimately be able to bring the spread of the virus under control. The lingering effects of the infection will continue to be a problem. However, these terrible circumstances will allow the scientific community to gain a deep understanding of the biological mechanisms underlying prolonged recovery from infections and ways in which coronaviruses can affect the nervous system. In addition, the results from these studies on PASC will teach us about other post-viral infections and diseases with similar symptoms, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

https://www.ninds.nih.gov/News-Even...s-Messages/NINDS-supports-new-PASC-initiative

 

[Hoopoe]

I'm not sorry to say that if you're a LC advocate who intentionally avoids acknowledging similarities to ME/CFS then you're massively unkind and should leave advocacy to others. No you don't owe it to ME/CFS patients, but it also doesn't cost you anything. It's simply disease denial.

 

[Kalliope]

Trial by Error by David Tuller: National Institutes of Health Director Francis Collins on Plans for Long COVID Research

Ramped up funding for research into Long COVID could be beneficial for ME/CFS patients. My sense is that many of the latter are hopeful that these investigations could reveal biological mechanisms and pharmaceutical treatments that could be relevent for them as well–especially given apparent similarities in symptoms like post-exertional malaise and cognitive impairment. (I never expected to see the phrase “brain fog” in news headlines all around the world.)

At the same time, there is cause to be wary. This pandemic is now early in its second year, so so-called Long COVID is still a relatively short phenomenon–especially when compared to the decades of illness experienced by many with ME/CFS. Reports of persistent symptoms are known to be common after many viral infections. It is also known that these cases self-resolve most of the time–even if it can take a year or more in some cases.

 

[ahimsa]

NINDS supports new initiative to understand long-term symptoms and promote recovery from COVID-19

https://www.ninds.nih.gov/News-Even...s-Messages/NINDS-supports-new-PASC-initiative

Thanks for posting, @Andy !

This part, describing Long Covid symptoms, will sound familiar to many ME/CFS patients:

A surprising number of these symptoms are neurological in nature, including pain, headaches, fatigue, postural orthostatic tachycardia, sleep disorders, post exertional malaise, and cognitive problems, such as difficulty with memory and concentration. Some individuals have reported that they are unable to work or engage in their normal, daily activities.

Here's a link to what NINDS Director Koroshetz tweeted this morning:

 

[leokitten]

As I understood his response to @Robert 1973 rather than having his mind changed by anyone Dr Strain explained he already didn’t think GET appropriate for people with ME but had misheard the question from the interviewer

It’s just he stated, and I’m paraphrasing, that LC and CFS are distinct because LC has what can be described as a old/broken battery. That why I didn’t understand how that answer could be a misunderstand of any question. So god knows how many BBC viewers saw that and they believe that now.

But you are right shortly after that statement he said something about GET and CFS which I think you are referring to.

 

[Dolphin]

Possibly more a curiosity than anything else. This is from their January 2021 newsletter so a little old at this stage.

Society to Improve Diagnosis in Medicine
909 Davis St. Suite 500
Evanston,
Il 60201
info@improvediagnosis.org

https://www.improvediagnosis.org/wp-content/uploads/2021/01/ImproveDx-1.12.2021.pdf

Long COVID Gains Acceptance as Many Questions Remain Unanswered By Susan Carr, Senior writer

[..]

The symptoms of long COVID are numerous, diverse and may indicate other conditions. Physicians, scientists, and patients have noted, for example, that some long COVID patients meet the CDC’s criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Ed Yong, staff writer for The Atlantic, reports that some have mixed feelings about correlating their condition with ME/CFS, resisting the prospect of chronic disability and hesitating to associate themselves with a community of patients who have long been trivialized and discounted. 15 On the other hand, some long COVID patients desperately want a more specific diagnosis for their condition and welcome the CFS/ME label, “treating any diagnosis as more of an anchor than an answer: It’s a starting point for understanding what’s happening to them.”15(np) It appears that the ME/CFS community may benefit from what is learned through research focused on long COVID and that COVID patients may benefit from what the ME/CFS community has learned about managing their disease and its impact on their daily lives. 15,16

 

[Forbin]

I would take no notice of Dr Rachel Pope's views on medical matters. As far as I can see she is a prehistorian, not a medical doctor. I wonder whether her twitter handle @preshitorian is a deliberate spelling error.

But I get all my medical advice from scholars of the Iron Age!

 

[Sean]

Particularly good discussion here in recent days, on a difficult issue. Thanks all.

I'm not sorry to say that if you're a LC advocate who intentionally avoids acknowledging similarities to ME/CFS then you're massively unkind and should leave advocacy to others. No you don't owe it to ME/CFS patients, but it also doesn't cost you anything. It's simply disease denial.

Yep. And more than a little ungrateful. But I also get why they might be easily scared off being associated with ME, given the new, opaque, and frightening health circumstances that is LC that they are trying to deal with.

“treating any diagnosis as more of an anchor than an answer: It’s a starting point for understanding what’s happening to them.”

This.

 

[Hoopoe]

The ME denying long covid advocates all seem to be from the UK. What is it with the UK and hatred towards ME? And after disrespecting ME patients, these people manage to feel like the victims too and complain about being unpopular.

I haven't seen this behaviour in American or Italian or German LC advocates who generally seem kind and curious and don't have a problem acknowledging any similarities to ME/CFS.

 

[Andy]

Fibromyalgia, chronic fatigue syndrome, and Long COVID: How patients push medical communities to recognise and treat their diseases

Though the long-term effects of the Sars-CoV-2 virus on human health has not yet been studied, some tendencies begin to manifest in the form of the so-called “Long COVID”. More and more patients have reported persistent symptoms for weeks and months after their recovery. COVID “long-haulers” have been finding one another on social networks, creating support and activist groups, and calling both medical and government officials to pay special attention to the issue. Though “Long COVID” has not been recognised as a medical condition yet, previous experience of HIV activists and chronic fatigue syndrome patients boosts long-haulers’ hopes.

https://rtd.rt.com/stories/fibromyalgia-long-covid-activists-push-for-new-diseases/

 

[Leila]

The ME denying long covid advocates all seem to be from the UK. What is it with the UK and hatred towards ME? And after disrespecting ME patients, these people manage to feel like the victims too and complain about being unpopular.

I haven't seen this behaviour in American or Italian or German LC advocates who generally seem kind and curious and don't have a problem acknowledging any similarities to ME/CFS.

Maybe ME has such a bad reputation in the UK that with LC you under no circumstances want to be associated with it. Even when you sit in the same sinking boat.