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

That's interesting. I had a friend with long term giardia but her disease was more like a post viral int hat she felt rotten for about 2 years then got better. None of the strange PEM with the 3 day time lag or weird neurological symptoms that characterise ME.

 

Though look at the outbreak of ME after giardia contaminated the water in Bergen Norway. While post-Giardia ME supposedly has more gastrointestinal/IBS symptoms than other infectious onset ME, the core symptoms are the same.

 

The distinction merely exists to account for denial of the infectious origin. Because of basic incompetence, of authorities responding slowly to outbreaks so that the link between the infection and the illness gets erased by time, the connection was always disputed. There was some acknowledgement that it played a role but always with the added caveat that "trauma", whatever is meant, or stress could also play a role.

COVID-19 obliterated that entirely, the path is as clear as it gets now, at least to those paying attention. It's possible that there are other paths to ME, but the infectious origin out of even benign viral infections is not possible to dispute anymore. Not that some people will not continue to say it's just a coincidence, but time will erase them.

 

https://twitter.com/user/status/1299091283395387403

 

I think this is going to be risky for some people.

 

https://twitter.com/user/status/1300214227463016449

 

This article is a perfect example of what’s grinding my gears, pretty much every article about long COVID is phrased like this article

The “COVID roller coaster” of daily symptom changes, the slight changes putting you over the edge, “like chronic fatigue syndrome” etc, pretty much everything described in the article except the breathing issues is not like ME/CFS it is exactly ME/CFS

We all have gone and are still going through all the symptoms. These past few months have just been surreal because I don’t have the energy but I just want to write to the long COVID world everything that is happening to you is ME/CFS and the millions of us have been living this nightmare for years!

 

I would be more cautious on this link.

Confounding symptoms between long Covid and ME

Aside from the (possibly long-term) pathologies induced by SARS-CoV-2 that can reduce tolerance to exertion and cause fatigue, such as heart, lung and neurological damage, some long-haulers don’t seem to have typical ME/CFS symptoms — PEM first and foremost. Or even if we’re talking about “classic ME”, lingering muscle fatigability that is consistently and abnormally worsened by exertion is not reported by all. Some do benefit from physiotherapy in regaining physical function.

So to begin with, it is crucial that all long-haulers are screened extensively through thorough blood tests, imaging, and clinical examination (especially for neurological, vascular and dermatological symptoms). In places where ME is conflated with chronic fatigue, and proper ME diagnostic criteria are unknown, such an assessment won't be offered to long-haulers who receive an unjustified "get out of my office" diagnosis of PVFS or ME. I fully understand their frustration about this, and I certainly wish ME wasn't a wastebasket diagnosis. (Thanks but not thanks to the BPS ideological brigade, who have framed it as a psychosomatic illness/MUS for over 3 decades.)

With this being said, I am as worried as you -- and probably everyone living with ME -- about the long-haulers who have PEM and other ME/CFS symptoms. First, they might not be aware of just how vital rest and pacing are in preventing severe, long-term deterioration. Second, and most paradoxically, for them receiving a diagnosis of ME will do more harm than good to their health if it comes with a prescription of graded exercise therapy and/or CBT-for-ME, both of which advise pushing through symptoms.

I sincerely hope that this subset of long-haulers will receive proper information about ME -- rest & pacing, diagnostic criteria, treatments for comorbidity --. Along with correct medical care, this is the single most important thing for them in the long run. Thankfully, some appear to have recovered at the 4-5 month mark but those who haven't need this information ASAP.

Research on long COVID concerns all of its forms, not only ME

Long Covid is the first massive research effort into understanding one specific (set of) post-viral syndrome(s), and we can plausibly hypothesize that it would in fact help understand PV(F)S and ME. But our own bias of suffering from post-viral ME shouldn’t convert this hypothesis into an assumption — there may be a part of the syndrome(s) that is specific to SARS-CoV-2 and as such doesn’t generalize.

I think it’s pretty important that researchers look into post-COVID syndrome(s) without any biases. That’s how research ought to function. Not that they should discard similarities with ME or any other known condition (they can get clues from previous research), but they shouldn’t assume anything either. Claiming associations with some conditions or biomolecular mechanisms without sufficient evidence would be detrimental. There is a risk that it might happen if research into long COVID research is not sufficiently funded.

At this point in time, with limited biological (and epidemiological) data from long-haulers being available, they should just come forward with some working hypotheses from looking at the preliminary data, test them more reliably once further data comes in, and adjust from there on.

Though, I agree, that it seems unlikely researchers would conflate long Covid with ME. Reasons include the lack of a distinct biological marker, or even tentative but precise biological leads, their lack of knowledge about ME (symptoms besides fatigue & previous research), stigma around the disease and long-haulers’ calls for not doing so (partly related to said stigma).

In any case, basic research into the often debilitating long-term consequences of a viral infection is being carried out. This is exactly what is needed. That this will help out long-haulers — they must not suffer with no end in sight as we have — and that this is finally happening are the only things that really matter to me.

What does long COVID research entail for ME?

Right now, I would argue that COVID research might be more beneficial for understanding ME than studying ME directly. COVID research may identify sufficiently homogeneous subsets of people who meet ME/CFS criteria that 1) have acceptable evidence of an unique triggering agent, SARS-CoV-2, either through a positive PCR or antibody test or, lacking this, from correlating the clinical picture with the time of disease onset (especially at the peaks of each country’s transmission of SARS-CoV-2), and 2) will have had other conditions excluded through fairly extensive testing.

This will increase the reliability of biological findings from these ME/CFS subsets, whereas cohort heterogeneity in ME research due to the difference in triggering factors among participants has consistently hindered it (even with the stricter CCC/ICC). Hopefully large COVID studies that aren’t focused on ME, e.g. the NIH and PHOSP-COVID studies, will investigate the ME/CFS subsets they identify, if any. This should happen if they are of significant size.

Large homogeneous cohorts followed up long-term with sufficiently-funded, high-quality basic research, and the opportunity of replication & validation across different studies, has not been achieved for ME yet. I'm not confident that it will ever happen, so focusing on COVID research for ME is an alternative.

I see it as a high-risk, high-reward bet: either it does not yield results thus wasting time and funding from ME research (especially if not many long-haulers go on to develop ME/CFS, which is the best case I deeply hope for), or it’s — as we speak — ME research "in the making" if it eventually successfully identifies and investigates ME/CFS subsets. We will only know in retrospect.

Once again, in the meantime, for the sakes of research and long-haulers' care, we mustn't turn our hypotheses about long Covid and ME into assumptions. I find myself wanting to do so because, as for all of us, I long for high-quality research on anything that could contribute to understanding the biological basis of ME. We all want treatments. But keeping this bias at bay, although very difficult, is necessary.

(I share these thoughts here on S4ME because there is, to say the least, awareness of how damaging biases can be in and for research).

EDIT: formatting for easier reading.

 

There is this is worth noting, which suggests it may be less like GET, and at least have something more in common with elements of pacing. Very possible that amongst long-Covid patients, a significant proportion of those maybe don't have an ME-like illness, but instead need to clear other Covid effects from their bodies.

 

I agree with you @cassava7, and it is actually important to map out the specific impacts and co-morbidities associated with COVID such as clotting disorders, cardiac and pulmonary pathologIes and strokes. These seem to have been reported throughout the spring and summer, and only through long term follow-up of these patients will we know whether these symptoms will become chronic or resolve, and whether a disease resembling ME is developing. I believe that those researching long term impact need to be aware of what ME is and its case definition. We do have epidemiologists (Drs Lipkin, Nacul) and i really hope they will be involved in such effort, in collaboration with those not so familiar with ME.

 

I don't suppose it matters much but on looking at old papers it seems

Apologies if this covers old ground, but I have been looking into this. I have some documents from the MEA from 1985. They referred to Myalgic Encephalomyelitis/ a Post Viral Syndrome. The suggestion seems to be that other post viral syndromes were available. ME was said to be "the name given to the symptoms of a person who seems not to recover from a viral like illness".

There is also an article by Charles Shepherd in GP Weekly Briefing from October 1985 referring to Royal Free Disease/myalgic encephalomyelitis or post viral fatigue syndrome (PVFS).

It is perhaps significant that post viral syndrome is often preceded by the indefinite article, whereas postviral fatigue syndrome is usually accorded the definite. I don't think too much should be read into the differences in these names. I was diagnosed with PVFS in 1985, and told it was the same as ME. I suspect that different groups of doctors used different names and that it was only in about 1987/8 when CFS emerged that it was considered important.

 

@cassava7 I do also agree with you, but in this nice discussion the central issue of time is important (@Trish @rvallee). I mentioned that with each type of post infectious syndrome there are chronic symptoms that are very specific to the initial infection, and of course these aspects are worth research.

For severe cases, some might be lifelong, such as heart and lung damage in the case of COVID. But I’m not necessarily focusing on that, as most cases of long COVID came from milder infections.

Eventually, the infectious specific symptoms should self-limit and the body should recover after 1 or maybe 2 years of lingering symptoms.

My hypothesis is that a significant percentage of people will have those infectious specific symptoms greatly reduce or disappear, but their ME/CFS symptoms and that disease continue indefinitely and evolve into the chronic phase of ME/CFS. As many of us have seen with certain users here, there are rarer cases of ME/CFS that don’t seem to have strong PEM, but they have other hallmark symptoms. I don’t understand it but then again the diagnostic criteria is a clinical criteria which is never the final answer, we need biomarker based criteria if possible. So the fact that some long COVID do not have PEM isn’t totally surprising. Time will tell if they continue with ME/CFS.

I had post EBV syndrome and specific symptoms that lasted about a couple years on top of the ME symptoms. For example one symptom, my cardiac arrhythmia, came on a couple weeks after the flu viral infection started and lasted about 7 months. The cardiologist measured that and it is one of the few findings I have that show something very terrible was happening.

Eventually, as I’ve read in each infectious syndrome retrospective paper that I’ve come across, a percentage of people continue with ME/CFS indefinitely, and I feel the same is going to happen to a percentage of COVID long haulers.

EDIT: my overall fear is, that by the time researchers realize long COVID suffers can continue with ME/CFS, that it’s too late to do anything and more difficult to see what led to it if they’ve only been focused on the COVID specific lingering symptoms. For those of us with ME/CFS, this is a once in a century situation to truly forward the understanding, diagnosis, and treatment of our disease, and I for one don’t want this opportunity to be squandered.

 

You just have to read about post polio syndrome, and how initial mild flu-like symptoms that went away only to return 35-40 years later. This happened to my neighbour years ago. She was walking to work one day and her legs just gave out.

I've had similar incidences over the years.

The cause of PPS is still not clear.

 

I think such groups should get clinical care but think it may be better for many projects to have a homogeneous sample and so be wary of including people who may not have had it, unless it proves hard to recruit sufficient numbers. Though it might depend on the research: if one is only doing cheap research per individual, it might not be such a problem.

 

https://www.scotsman.com/sport/foot...ling-cope-when-me-ended-his-career-29-2956359

 

The question is what do they do with the patients who don't improve. Do they eventually get frustrated and tell them to push anyway? Or are they able to admit their assumptions were wrong and follow the evidence? They allegedly accept that there is no guarantee of recovery, but what will they do once faced with it, what will they blame it on? Almost universally what I've seen is the idea that it may be even slower, but everyone should still recover. This is obviously inspired by the fraudulent model of ME/MUS/FND and assumes that all cases must recover, that failure is the patient's alone.

So far experience suggests they will do the wrong thing simply because of the assumptions they make, it's almost universally been the case. It's common practice to use deceit, to lie and manipulate in health psychology that no one can be trusted to do the right thing. Trust broken is almost impossible to repair when the responses to being told of that failure are to simply dismiss and keep going.

 

Unfortunately, there is yet a missing part of that awareness: that it should be informed and pertinent. Not there yet, most of the discussion so far assumes everyone must recover and pushes the usual "hope" trope that a good attitude is the best medicine. It's often even grossly misinformed, saying things like how medicine has known about this for decades, yet has done absolutely nothing about it, knows nothing about it and can do nothing about it. It's not a thing to have been known about something for decades but know nothing about it. Because contained within that lie is the assumption that it's a trivial thing that resolves itself magically, as long as you never say its name, never talk about it or pay attention to it.

I have yet to see actually informed discussion of the topic by medical professionals, so far it only comes from journalists like Ed Yong, people who did not come to the topic with massive prejudice. Outside of the ME community anyway, barring rare exceptions in physicians who still have significant post-viral illness. So far, medicine is still stuck with its head firmly up its own ass on this topic and shows no sign of being interested in moving out of that comforting-but-gassy zone.

 

Reading articles about longcovid and thinking about the PVFS/ME issue reminded me of an important point from those days. Ramsay did not like PVFS because he felt that the issue of whether ME was caused by a continuing viral infection or if it was actually post viral had never being resolved but using post viral in the name assumed it had been. I wonder if some doctors accepted CFS because it was neutral on that point?

We do not know if people are still experiencing covid symptoms because the virus is still there in parts of the body or if the disease is because of the damage it left behind.

Virus remaining in the body for years is not uncommon, herpes viruses, TB, syphilis are all long term.

 

https://twitter.com/user/status/1300474118970712071

She is involved in a post-COVID study. She previously said on Twitter that post-Ebola patients were different to ME/CFS patients. She has been involved in care of ME/CFS patients.

I haven’t listened so far.
Direct recording link:
http://itpd.mprw.co.uk/2020/08/31/from-ebola-to-long-covid/