Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath

[Simon M]

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Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath


Understanding long covid: a shortcut to solving ME/CFS?
September 17, 2020 Simon McGrath Comments 0 Comment

Large numbers of people, around one in 10, don’t make a normal recovery from coronavirus but continue to be ill with “long covid”. The illness is likely to have several different causes, probably including ME/CFS. Post-exertional malaise appears to be a common symptom. Long covid patients have quickly put the illness on the map, helping to launch a wave of research. ME/CFS researchers are joining in, seeing an opportunity to make a breakthrough with ME/CFS. The World Health Organisation has promised action on long covid and on the back of this its director-general said to the ME/CFS community, “we hear you”.

It’s extraordinary how many people have a postviral syndrome [after Covid] that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome

Dr Anthony Fauci, the top US infectious diseases expert, talking to Medscape.
Over 30 million people have now tested positive for the coronavirus and sadly roughly 1 in a hundred of them died from it. Yet, as Professor Tim Spector pointed out in the Guardian, it is wrong to assume that ‘if you are not dead, you are fine’.

Long covid
Spector leads the app-based Covid Symptom study https://covid.joinzoe.com/, which found that while most people recover from the virus within two weeks, one in 10 still has symptoms after three.

This is a massive infection of millions and millions of people. I think one has to be really concerned about the long-term consequences.

Dr Avindra Nath, a neurovirologist at the US National Institutes of Health, in The Scientist.
Online groups have formed of people who call themselves “long-haulers”, those who haven’t made a good recovery from coronavirus. Many of them have been ill for months. Doctors now call their condition “long covid”, but what is it?

People with long covid experience a range of symptoms including fatigue, shortness of breath, fever, brain fog and trouble sleeping. Some of those symptoms will look familiar to people with ME/CFS.

Patients leading the way with the research

The best research to date on symptoms has come from the symptom experts — patients themselves. The Body Politic COVID-19 support group set up and published a groundbreaking and influential patient led symptom study.



...

 

[ukxmrv]

I wouldn't agree that these are difficult times "especially for those with long covid". It can be far worse for people with ME who have suffered for decades what some long covid people have suffered for months.

It's not a competition and It's very unfair I think to make that sort of statement. Can you change that please?

 

[Dx Revision Watch]

...Doctors now call their condition “long covid”, but what is it?...

The two terms currently submitted (subject to consultation with clinical bodies) for consideration for addition as a new Concept code to SNOMED CT are:

Post COVID-19 syndrome

and

Post Covid syndrome

 

[Andy]

For context, the entire quote is

These are difficult times, especially for those with long covid. Yet patient advocacy has put their illness firmly on the map, helping to launch a wave of studies. These studies may well lead in future to answers and treatments for long covid, and perhaps for ME/CFS too.

Personally, I have no issue with any of that quote. In recognising the additional difficulties faced by people with long covid during this pandemic in no way does Simon suggest that people with ME, diabetes, cancer, leg amputation or any other illness not have it as hard or harder, for a longer or shorter time, than people with long covid. Therefore, I don't see how it can be said that he is making a competition out of it.

So Simon, please don't change that.

 

[Dx Revision Watch]

The World Health Organisation has promised action on long covid and on the back of this its director-general said to the ME/CFS community, “we hear you”.

They hear us but are they listening?

Post #51

Post #52

 

[chrisb]

Is one syndrome sufficient? I presume those are intended as alternatives for the same range of symptoms

So Simon, please don't change that

I think exception is taken to the "especially". They may be equally, though differently, difficult for the families of those who have died from the illness. To grant special statue is to accede to the demands.

 

[Dx Revision Watch]

Is one syndrome sufficient? I presume those are intended as alternatives for the same range of symptoms...

Those two (proposed) terms were submitted by different parties.

The first of the two submissions was submitted on the expectation that NHS Digital terminology and classification leads (who manage the UK Edition of SNOMED CT) would consult with clinical bodies over terminology. So if a decision is made to create a new Concept code for use by the NHS in the UK Edition of SNOMED CT the eventual choice of nomenclature may differ. I doubt, in any case, that the second term, "Post Covid syndrome", would be approved.

There is also the possibility of creating additional codes for specifiers, for example:

Post COVID-19 syndrome (or whatever) with xxxxxxxxx involvement etc.

If these requests (and any others submitted) are passed on to SNOMED International for processing, for consideration for approval for addition to the International Edition, their terminology leads may want to involve the WHO, since standardisation of terminology between the two systems for global application would be advantageous.


Edited to add:

At least one of the advocates who took part in the meeting with the WHO has said she would not be happy with the use of the term "syndrome" within whatever term might potentially be approved.

 

[Simon M]

For context, the entire quote is

These are difficult times, especially for those with long covid. Yet patient advocacy has put their illness firmly on the map, helping to launch a wave of studies. These studies may well lead in future to answers and treatments for long covid, and perhaps for ME/CFS too.

Personally, I have no issue with any of that quote. In recognising the additional difficulties faced by people with long covid during this pandemic in no way does Simon suggest that people with ME, diabetes, cancer, leg amputation or any other illness not have it as hard or harder, for a longer or shorter time, than people with long covid. Therefore, I don't see how it can be said that he is making a competition out of it.

So Simon, please don't change that.

It's not a competition and It's very unfair I think to make that sort of statement.

I am not into competitive suffering either but I wanted to express empathy for others with chronic illness. No one yet knows what long covid is. People are dying of coronavirus and those with long covid are concerned this might kill them too. It's very early days so it's like the early days of getting ME (a nightmare) plus added uncertainty. But I don't think I am belittling ME in any way either.

 

[chrisb]

@Simon M There is room for misinterpretation of that "especially". It could mean that times are especially difficult for the individuals in comparison with what they have previously experienced, or it could mean times are especially difficult in comparison with the difficulties of others.

Certainly those with long covid are experiencing great difficulties with which we would all sympathise- having already experienced them for ourselves.

 

[rvallee]

The best research to date on symptoms has come from the symptom experts — patients themselves

Yes! I think it's important to make that point because it's frankly a massive embarrassment. Medicine still hasn't caught up to a report published 4 months ago. It's getting there but sloooooooooooowly.

Patient engagement is critical to moving medicine out of its decades-long rut of stagnating patient outcomes. Categorical rejection of patient engagement is likely the biggest factor in this stagnation. It's time for a new paradigm, health is too important to be left entirely to physicians. They are the experts but they are not infallible, a fact that the current system not only assumes but reinforces constantly.

 

[Jonathan Edwards]

Are we sure that Long Covid is a useful term. I am not yet. It seems to me a bit like 'problems after being in hospital' or 'problems after a fracture' - an administrative category more than anything.

I wouldn't be that surprised if people recovering from something like cardiopulmonary bypass had 'PEM' for three months if they tried to 'rehabilitate' too hard. I think it very likely that some people labelled as long covid have an illness with some major overlap with ME but I see no reason to bundle everyone together under an umbrella term. Others clearly have lung or kidney damage.

 

[Trish]

I think long Covid is a temporary name chosen by patients on forums that have been set up by patients who have not recovered to full health after Covid infection. They recognise that at the moment the groups will include people ranging through temporary fatigue, to organ damage, to potential ME diagnosis. I dont think it's being suggested as a single entity.

 

[Jonathan Edwards]

I dont think it's being suggested as a single entity.

Just having a name will do that.
Why not talk about the problems people have after having had a covid infection.
I can bet you that people are saying 'maybe I have got Long Covid', which of course means nothing at all, if you are right.

 

[Jaybee00]

Are we sure that Long Covid is a useful term.

It is not a useful term--I am sure. I agree with @Jonathan Edwards here. And I've mentioned this on this forum before. Let's all try to avoid using the term Long Covid, as it will likely bring Long-term problems. If people who had Covid, haven't recovered and have the neurological symptoms that are consistent with ME/CFS, but haven't have the symptoms long enough (4-6 months) to be officially diagnosed as ME/CFS patients, then probably more accurate to describe these patients as pre-ME/CFS rather then Long-haul patients, etc.

Patients who have respiratory problems from pulmonary damage from Covid pneumonia should be described as thus, not as Long-Covid patients.

Continued use of Post-covid will lead to further bifurcation of the ME/CFS patient community......"I don't have ME/CFS, I have Post-covid.....", which will ultimately hurt the patient community by diluting fund-raising and research efforts.

 

[Simon M]

Are we sure that Long Covid is a useful term. I am not yet. It seems to me a bit like 'problems after being in hospital' or 'problems after a fracture' - an administrative category more than anything.

In a way it is - but useful still as a lot of people were suffering post coronavirus and needed help. When the medical establishment was assuming they were fine and often telling people it was psychosomatic. Long covid patients have focused minds on the problem: WHO, CDC and NIH amongst others.

I wouldn't be that surprised if people recovering from something like cardiopulmonary bypass had 'PEM' for three months if they tried to 'rehabilitate' too hard. I think it very likely that some people labelled as long covid have an illness with some major overlap with ME but I see no reason to bundle everyone together under an umbrella term. Others clearly have lung or kidney damage.

Agreed, though, that it will be numerous different things. Which is what every researcher in the field and most commentators are already saying. What is needed is research following up post-covid cohorts to tease out things like recovery rates and individual illnesses - which may include ME/CFS.

I was struck by Paul Garner, an infectious diseases epidemiologist and medical doctor, saying he had recovered from dengue fever and malaria but this was way harder, and his description of PEM seemed so familiar. Not just the payback but the unpredictability of it.

“it was as if I was being followed by phantom speed cameras. You don’t know the speed limit and you don’t know when the speed penalties will arrive. When they do they are harsh, stopping you in your tracks for days

@Tom Kindlon put this on twitter, contrasting long covid exercise response to heart and lung problems


Seems to me that lots of research is needed, precisely to break down the admin category into things that make medical/scientific sense. But starting with a coronavirus/long covid cohort is surely the way to go. And that is the basis for most studies that are kicking off now:
https://mecfsresearchreview.me/2020...g-covid-a-shortcut-to-solving-me-cfs/#studies

 

[Jonathan Edwards]

I understand what you are saying Simon. But I fear that at this point in time it is likely to be more or less impossible to do any usefully controlled studies, for all sorts of logistic reasons. I think it will become clear what relation illness after Covid has to ME in due course but I'm not sure how much the current situation will change the inherent problems in understanding ME. I agree that it is good that people may be focusing on post-infective illness more. In many ways I agree with you but I have too often seen people rush in to problems without thinking enough. Thinking exactly what they are trying to study.

The good news is that S4ME is as good a place as I have ever known to dig up the truth. By critical debate.

 

[rvallee]

It is not a useful term--I am sure. I agree with @Jonathan Edwards here. And I've mentioned this on this forum before. Let's all try to avoid using the term Long Covid, as it will likely bring Long-term problems. If people who had Covid, haven't recovered and have the neurological symptoms that are consistent with ME/CFS, but haven't have the symptoms long enough (4-6 months) to be officially diagnosed as ME/CFS patients, then probably more accurate to describe these patients as pre-ME/CFS rather then Long-haul patients, etc.

Patients who have respiratory problems from pulmonary damage from Covid pneumonia should be described as thus, not as Long-Covid patients.

Continued use of Post-covid will lead to further bifurcation of the ME/CFS patient community......"I don't have ME/CFS, I have Post-covid.....", which will ultimately hurt the patient community by diluting fund-raising and research efforts.

I see a general consensus over Post-Covid syndrome developing lately.

Even though it may not actually be accurate. The post- aspect has always been on the basis of standard tests not finding the virus anymore.

This is all so silly, frankly. Things are being held up just because people don't agree on a name. Physicians would make seriously horrible programmers, you just know they'd all use variable names like a,b,c,d and then just aa,bb,cc,dd when they run out. Pffft.

 

[Barry]

For context, the entire quote is

Personally, I have no issue with any of that quote. In recognising the additional difficulties faced by people with long covid during this pandemic in no way does Simon suggest that people with ME, diabetes, cancer, leg amputation or any other illness not have it as hard or harder, for a longer or shorter time, than people with long covid. Therefore, I don't see how it can be said that he is making a competition out of it.

So Simon, please don't change that.

I agree entirely.

I think exception is taken to the "especially". They may be equally, though differently, difficult for the families of those who have died from the illness. To grant special statue is to accede to the demands.

If the only intended audience were pwME then maybe I would agree with that. But it's not.

 

[Dx Revision Watch]

What Request #32731 for consideration of creating new Concept term(s) for addition to SNOMED CT UK Edition has asked for:

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731

(...)

Parent identifier
1240751000000100*

Suggested name, term or description
Post COVID-19 syndrome (please double check with clinical bodies)

Priority
Very Urgent

Brief summary of the request
We would like to request concept(s) related to post COVID-19 syndrome or whatever the clinical community decide to call.

Description of the addition or change
My trust is the London COVID-19 centre and my respiratory consultants have expressed their view that currently there is a lack of post COVID-19 related concepts. These patients who either had COVID-19 (through confirmed PCR test) or a high suspicion of COVID-19. Nearly six months down the line, they started developing what they call “post COVID-19 syndrome”. Right now, we have been recording this using a list of the symptom concepts. You might want to work with the clinical bodies to author such concept request.

We need it urgently as these patients is not just a few. It is significant numbers going forward.

(...)

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

*SCTID: 1240751000000100 | Coronavirus disease 19 caused by severe acute respiratory syndrome coronavirus 2 (disorder)



Edited to add:

Please also see this post in thread:

Post Covid-19 Syndrome SNOMED coding

https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/#post-289093

 

[Barry]

@Simon M There is room for misinterpretation of that "especially". It could mean that times are especially difficult for the individuals in comparison with what they have previously experienced, or it could mean times are especially difficult in comparison with the difficulties of others.

Certainly those with long covid are experiencing great difficulties with which we would all sympathise- having already experienced them for ourselves.

"especially" does not exclude everyone else! It is especially difficult for those with long covid.