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

[Dolphin]

With over 100 retweets already, Elisa Perego's thread is getting a lot of coverage on Twitter.
I could easily imagine this angle ending up influencing discussions in the long Covid community more generally including in their private discussion forums. Some of us remember how they wanted to distance themselves from us last year e.g. in comments to the APPG in the UK.

When I see her say she explicitly says she is happy for Myalgic Encephalomyelitis being used in media coverage about long Covid, I might trust her a bit more. Though as I say, her reasoning wouldn't seem to add up given what she said about why she dislikes the term "chronic fatigue syndrome":

"People are dying in #LongCovid. They are also having thrombotic events, cardiac events, strokes, and more. I am worried to seeing articles speaking of a "chronic fatigue syndrome" in the press."

"I am talking about #LongCovid being presented as a chronic fatigue syndrome in the press when it's clear it's a multi system disease with severe cardiovascular impact."

This makes it look that really it's the construct (whether it's called ME, ME/CFS, or CFS), which she has a problem with.

The study in question used the Fukuda CFS criteria so it seems reasonable that "chronic fatigue syndrome" would be used .

Edited to add: Some more tweets suggesting it isn't simply "chronic fatigue syndrome" she has a problem with:


Anyway I previously got frustrated with her and her reasoning in the past and decided I could probably use my energy in better way than spending too much time on her comments.

 

[hibiscuswahine]

She seems a bit confused, doesn’t matter what ME/CFS is classified as, eg. neurological etc, doesn’t stop you having a respiratory examination and tests. Neurological diseases can have respiratory symptoms. Sounds like she is worried about being dismissed or misdiagnosis occurring. You can also have lots of diseases at the same time at different severities. ME/CFS is multisystem too.

 

[Jonathan Edwards]

She does understand that as she was the one who invented the term LongCovid with the explicit aim of describing all long-term sequelae.

Maybe what I mean is that she doesn't understand that the concept of Long Covid that she has invented makes no sense.

Fat embolism in the lung, Sudeck's atrophy and a limp are all long term sequelae of a fracture. But we don't lump them together as 'Long Fracture' disease.

Getting people to take long term disability seriously is not helped by inventing new 'multisystem diseases' as we have seen before.

 

[Sly Saint]

She seems to have a problem with the term "a chronic fatigue syndrome" being used to describe LC. She feels that pwME should also distance themselves from using the term CFS.

"I think #pwME should also refuse to use the chronic fatigue syndrome terminology"

very simplistic idea and not that straightforward.

it might help if pwLC acknowledged that the terminology they are using like brain frog and PEM have been used by the ME/CFS community for the last 30 years, PEM almost exclusively, until LC came along.

 

[Hoopoe]

On the topic of case definitions, to me it seems that the advances in ME/CFS were either made possible by technological advances (metabolomics), came from listening to patients and figuring out how to measure some of the underlying biology (PEM and 2-day CPET studies), or from people making an effort to do good science (criticism of CBT/GET, the Rituximab trial), and demands for more funding (the ME/CFS research centers and program in the US and the Netherlands).

The 2-day CPET literature initially used patients diagnosed with Fukuda and it's arguably the biggest of the modest steps forward that have been made.

Case definition is important but they are not I think the ultimate solution to the problem. Once you get good researchers involved they don't need hand holding. More than anything else they need funding.

 

[rvallee]

Just a narrative review so not really worth its own thread IMO. This was among the first disabling symptoms I had. It's barely discussed or acknowledged so far even though it's pretty common in LC. Probably the easiest symptoms to put to "anxiety". What a mess this has been, so many common symptoms of infectious diseases were simply never looked at for decades.


Internal Tremors and Vibration Symptoms Among People with Post-Acute Sequelae of SARS-CoV-2: A narrative review of patient reports
https://www.medrxiv.org/content/10.1101/2021.12.03.21267146v1


This paper will sadly not add much understanding.

 

[SNT Gatchaman]

The problem I have is the lack of demarcation between severe and non-severe outcomes. Those severe outcomes can include heart/lung issues as well as ME/CFS type symptoms.

Maybe what I mean is that she doesn't understand that the concept of Long Covid that she has invented makes no sense.

Agree and it sounds like she has now recognised this problem.

Agree. More accurate divide is mild (no treatment) vs severe (treated with antivirals steroids anticoag etc). But location of treatment still useful- if v sick and stayed at home, would not receive anticoag & more likely to longhaul.

Yes this is one of the key points we have been making since early 2020. I unfortunately pay myself the price for poor classification in this regard. So I hope studies e.g. mentioned above from [Prof. Amitava Banerjee] and others take this issue into consideration

I think the patient-generated term "long COVID" has served its purpose as a rallying point for an ignored patient group, but can't be retired soon enough in favour of terms that more accurately reflect the pathology, as it comes to light. (Same for ME/CFS in due course.)

 

[Ariel]

Sorry I don't understand the point EP is making in your above post @SNT Gatchaman ? Is she saying she no longer thinks Long Covid is a useful term?

 

[Ariel]

Just a narrative review so not really worth its own thread IMO. This was among the first disabling symptoms I had. It's barely discussed or acknowledged so far even though it's pretty common in LC. Probably the easiest symptoms to put to "anxiety". What a mess this has been, so many common symptoms of infectious diseases were simply never looked at for decades.


Internal Tremors and Vibration Symptoms Among People with Post-Acute Sequelae of SARS-CoV-2: A narrative review of patient reports
https://www.medrxiv.org/content/10.1101/2021.12.03.21267146v1


This paper will sadly not add much understanding.

This was one of my worst symptoms when I first got ill in 2008. It was impossible to find anyone else who said they had it. I was told by a neurologist the symptom did not exist! It was not just that I was not experiencing it, according to him - nobody else was, either!

Has been surreal to see so many people experiencing it in a long covid context. (Mine has mostly gone away.)

 

[SNT Gatchaman]

Is [Perego] saying she no longer thinks Long Covid is a useful term?

I wouldn't assume she is going that far, but she does seem to be agreeing that there is a problem with the definition being too encompassing. I.e. all long-term effects of COVID. I think she recognises that there are (broadly) two groups: those that got more severe acute disease and have eg heart, lung issues as a continuation of that; and those that had mild/minimal/no acute symptoms, that go on to an ME-type picture.

Since being coined in May 2020, it's been useful, but I don't think the term "long-COVID" can now be rectified or sub-typed to make it fit-for-purpose. The term is moving out of the spheres of group formation, advocacy, media and politics and into that of formal science (where it is deficient). Unlikely a new patient-generated term could be helpful either. We're probably stuck with LC and PASC until scientific studies give us better terms.

 

[rvallee]

This was one of my worst symptoms when I first got ill in 2008. It was impossible to find anyone else who said they had it. I was told by a neurologist the symptom did not exist! It was not just that I was not experiencing it, according to him - nobody else was, either!

Has been surreal to see so many people experiencing it in a long covid context. (Mine has mostly gone away.)

I have seen tons of that in the long haulers sub-reddit. It's not rare. Not one of the most common but it's definitely not rare, probably more common than some of the symptoms that have been acknowledged. One that is too easy to dismiss and never write down, or generally mixed in with "anxiety", the all-encompassing and very unhelpful label medicine loves to use.

Very lossy compression, SMH.

 

[Kalliope]

I am unable to find the thread for the NIH RECOVER initiative so have to post it here, or PASC, or however name the thread uses.

https://patientresearchcovid19.com/open-letter-regarding-the-recover-initiative-to-study-long-covid/



Basically, the NIH needed oversight for this program. There is none. Therefore the NIH is floundering, for the same reasons it failed to do anything for the decades that lead to this:

An Open Letter to NIH, NHLBI, NYU and all RECOVER Initiative stakeholders, including people with Long COVID:

...

Many of the issues on our current List of Concerns have previously been raised in communication with both NIH and RECOVER leadership. But without any central, accountable system of community and patient engagement, we have no indication of what has been considered or how these concerns have been or will be addressed.

As Long COVID patients, we have an overriding interest in doing all we can to ensure that the RECOVER Initiative succeeds. Although it has been frustrating to experience barriers to collaboration thus far, we are nothing but eager to work proactively with you, your staff, and the leaders of the RECOVER Initiative in addressing pressing issues and moving forward together as productive collaborators.​

People who support the letter can sign it, both individuals and organisations. Link here


The letter states among other:

• Post-viral illness experts, including researchers, clinicians, and patient advocates with expertise in conditions seen in Long COVID (including ME/CFS, postural orthostatic tachycardia syndrome [POTS] and other dysautonomias, and mast cell activation syndrome [MCAS]) must be integrated into the Initiative, as well as supported as a collective advisory panel in the RECOVER structure, as noted in an open letter from Body Politic to the NIH in April 2021.
  
  

 

[Jonathan Edwards]

Agree and it sounds like she has now recognised this problem.

Has she? Her answer to Khan does not look much of an improvement.

The important distinction is between ME/CFS type problems - which no doubt can be severe - and specific cardiorespiratory pathology high I very much doubt needs any steroids, antivirals or anticoagulants in the 'Long' situation.

 

[rvallee]

I wouldn't assume she is going that far, but she does seem to be agreeing that there is a problem with the definition being too encompassing. I.e. all long-term effects of COVID. I think she recognises that there are (broadly) two groups: those that got more severe acute disease and have eg heart, lung issues as a continuation of that; and those that had mild/minimal/no acute symptoms, that go on to an ME-type picture.

Since being coined in May 2020, it's been useful, but I don't think the term "long-COVID" can now be rectified or sub-typed to make it fit-for-purpose. The term is moving out of the spheres of group formation, advocacy, media and politics and into that of formal science (where it is deficient). Unlikely a new patient-generated term could be helpful either. We're probably stuck with LC and PASC until scientific studies give us better terms.

The issue here is a simple case of "surely the people in charge will do the right thing when the truth comes out". It's truly unbelievable that such a thing could happen, and yet here we are. She can't process that medicine could genuinely screw this up, if only they knew. But this is exactly why LC is treated the same. But, oh yeah, they definitely can. Could even continue for many more decades.

It's nice to imagine that the truth wins every time. It doesn't, the truth always challenges people's interests and in the end everything is about power and self-interest. Even in medicine, especially when science is rejected.

 

[Ariel]

I do not think that Dr Perego really understands the subject area. She seems to think that "long covid" and ME/CFS are mutually exclusive diagnoses. I am also not sure what she is suggesting that the ME community do in that last tweet. I may have misunderstood, but I am concerned that she does not really understand the case definition(s) of ME, or the history given that she says the ME community have the power to "stand up" against "the psychiatrics" - particularly on their own without allies. In any case, she appears to reject the ME/CFS and LC overlap for spurious reasons; this does not read like she has much knowledge of the area. I cannot understand the position of those who do this after all this time.

 

[SNT Gatchaman]

I read the position more as the terms "LC" and "ME/CFS" are exclusive, not necessarily the diagnoses those terms refer to. But... I may be being too optimistic in my interpretation and @Ariel's view may be the correct one.

Dr. Perego is clearly very anti the term "chronic fatigue syndrome" and of course she is not alone in this.

I think she is attempting to avoid the "CFS" label by using the "LC" label as a shield against it, but not necessarily rejecting the "ME" label. If that is true, she could have been much more explicit about accepting the equivalence between LC and ME and I can't argue that many of her comments do read as a rejection of that idea. At any rate, it doesn't look as if she might move to adopt "ME" over "LC" anytime soon.

In the subsequent Twitter threads over the last few hours there have been good attempts to correct the narrative by pwME, but overall the original comments that incited them don't appear to have been helpful. Here are some of the stronger responses, for reference.

Oh, good. We hadn't thought of that. We should start doing that now.

it will fracture the CI community if well-intentioned pwME are blamed for a name we rejected. This helps the system that hurts all of us.

Yes. No one disagrees with you on this topic. What I am suggesting warmly is that patients not debate patients here about something we all actually agree on, but have to navigate differently depending on national context and the different medical/media systems still (ab)using it.

So much of our activism in the M.E community -for *decades*- has been spent trying to fix the problems the CFS label caused. You are now telling us to stand up? Don't lecture us on the thing we have been doing for decades. Long before you got here.

You want to reject the CFS label? Good. Get on board. Our community laid groundwork for that. Don't blame us for co-opting something a system imposed on us that we have been rejecting for years.

Insert <minefield> emoji here.

Needless to say, the sooner LC (in the postviral chronic illness form we are interested in) is shown to be ME, by virtue of biological mechanisms that are equivalent if not necessarily identical, the better. But as @rvallee says above, no guarantee that anything good will actually come from such a demonstration when so many interests are aligned against that good.

 

[Art Vandelay]

Just a narrative review so not really worth its own thread IMO. This was among the first disabling symptoms I had. It's barely discussed or acknowledged so far even though it's pretty common in LC. Probably the easiest symptoms to put to "anxiety". What a mess this has been, so many common symptoms of infectious diseases were simply never looked at for decades.

Internal Tremors and Vibration Symptoms Among People with Post-Acute Sequelae of SARS-CoV-2: A narrative review of patient reports

I've had this for 23 years. Whenever I've brought it up with a doctor, they look at me as if I've told them that I'm from Uranus.

It's one of the many ME symptoms you learn not to mention to medical professionals very early on. Yet, of course, they all insist that I have "fatigue", which is a symptom I don't really have.

The medical profession has been studying the wrong illness for 40 years. It's little wonder they've made no progress and are continuing to flounder.

 

[Wonko]

They've chosen to study a fictional illness when presented with a real one.

It's a choice, not a mistake or error on 'their' part - a deliberate choice.

and it's worse than that, given how they behave when told this, when told the actual symptoms and severity, and that their 'treatment' not only doesn't work but is actively harmful.

 

[Sean]

It's a choice, not a mistake or error on 'their' part - a deliberate choice.

It may have been an honest mistake at the start, but there is no way they can claim that now.

Since no later than the publication of PACE in 2011 they are clearly making a deliberate choice to ignore evidence and logic, and spin & bulldoze they way through, with no regard for the consequences for patients and the broader credibility of medicine.

 

[Andy]

I don't think she is demonstrating much insight here (which is the polite version of my reaction to what she has put here).