Do we not want precision in all communication?
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Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath
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Do we not want precision in all communication?
I have indicated the ambiguity
Barry
Senior Member (Voting Rights)
Communication is about recipients of information gaining insights. A patent application is incredibly precise, but is virtually gibberish for any normal person trying to digest it. Precision does not necessarily equate with communication, with gaining insights. Removing superfluous verbiage can significantly improve comprehension.
ukxmrv
Senior Member (Voting Rights)
It's the especially which is the problem for me.
Can you please consider changing that.
P.s. no worries if not. I won't be continuing this. It's your work and the rest is very good. Sorry to quibble.
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This.
Snow Leopard
Senior Member (Voting Rights)
Do they though?
Lung damage due to respiratory infections can cause dyspnea when exercising, but does not cause the unusual fatigue and all the other symptoms associated with Longcovid. We know this, due to the experiences of COPD patients. Many Longcovid patients were mild-moderate, did not undergo cardiopulmonary bypass, or have evidence of kidney damage.
Longcovid is not merely shortness of breath, and Longcovid patients do not have hypoxemia, unless they are exercising past their VO2Max.
I personally think we need to respect the name chosen by patients, lest they be given a name like post-SARS-CoV-2 medically unexplained symptoms syndrome by bureaucrats or physicians who think that names like this are somehow useful.
I hear what you say.
James Morris-Lent
Senior Member (Voting Rights)
The term 'Long Covid' sounds as if people still have the virus, which could be confusing and misleading.
Presumably the desired category is those with persisting unexplained symptoms and should therefore exclude those whose symptoms are explained by observed organ damage. Of course one person could have both sorts of problem and an individual's picture could be pretty muddy for a while if they do have damage.
I agree with the thought that it's pretty early and we'll have to be patient see how things shake out, especially regarding the potential development of ME/CFS after Covid. Remember that only the cases from before mid-March have had the 6-month timeframe required for ME/CFS. I would guess we'll have a much clearer picture of things in 6 months or a year.
Naturally people want insights yesterday. And people want 'things to be done' for patients. Frustratingly it seems that the thing to do as far as gaining insight into the persistent unexplained symptoms is to sit back and observe until the picture is clearer.
Presumably the desired category is those with persisting unexplained symptoms and should therefore exclude those whose symptoms are explained by observed organ damage. Of course one person could have both sorts of problem and an individual's picture could be pretty muddy for a while if they do have damage.
I agree with the thought that it's pretty early and we'll have to be patient see how things shake out, especially regarding the potential development of ME/CFS after Covid. Remember that only the cases from before mid-March have had the 6-month timeframe required for ME/CFS. I would guess we'll have a much clearer picture of things in 6 months or a year.
Naturally people want insights yesterday. And people want 'things to be done' for patients. Frustratingly it seems that the thing to do as far as gaining insight into the persistent unexplained symptoms is to sit back and observe until the picture is clearer.
Yes - really important point
@Simon M, you point out that Tim Spector said his app showed 1 out of 10 people with coronavirus still had symptoms after 3 weeks, but may I ask why you didn’t point out Professor Spector has also shared that only 1 in 200 of sufferers report symptoms to the Covid Tracker app that last for more than 90 days? This is a lot less than the 1 in 10 figure that I keep seeing repeated in isolation.
It's M.E. Linda
Senior Member (Voting Rights)
@anniekim According to people on Twitter, many have stopped logging because of them needing to continually repeat lots of info. They have asked Prof Spector/Zoe to provide an easier method to log their ongoing symptoms and are concerned that the Tracker isn’t representing their true numbers.
rvallee
Senior Member (Voting Rights)
It doesn't help that there is so much doubt and confusion over whether this data will ever be used, given the focus on hospitalized patients and the reticence to even acknowledge this illness. In addition to the issue of confirmed vs non-confirmed cases. Without clarity, people simply don't bother if it could be all for nothing and I can't blame them. I was a bit skeptical at first of the SolveME app but given plans to actually use it for research I will definitely participate because I know it will be useful.
Clear communication is essential here. There has been none of that so far, in fact medical authorities are themselves bringing more confusion than anything by being all over the place.
I think this is very likely to be the case.
The patient "survery/study" was interesting.
I understand the desire to be inclusive, and this is patient driven, but if your trying to establish the characteristics of post-covid, having only 1/4 who you can be 100% sure had covid makes it difficult. TBF the symptoms were comparable between groups, except one hallmark of covid - loss of taste/smell - which positive testers reported more frequently in a statistically significant manner.
Most patients were still very much in the post-viral fatigue phase. I know I hate the idea that me/cfs arbitrarily starts at 6 months, but I do think there is a certain window where people struggle with post-viral symptoms, some could have mono in this case if they tested negative anyway.
If you look at common phrases, it certainly looks that many people believe they are improving and some are getting worse.
- Symptoms came back or intensified with physical activity
- Slow progression of symptoms
- Most symptoms have subsided but a few symptoms remain (most noted were fatigue and shortness of breath especially with exertion; others mentioned cough, skin rash, and elevated temperatures)
- General improving trajectory
- Intensity of symptoms decreased but psychological burden increased
- Most severe symptoms were during weeks 2-3
- Very slow recovery with return of certain symptoms in a cyclical nature
There is the symptom profile. Even more than fatigue people most commonly experienced symptoms were shortness of breath and tightness of chest, and as or almost as common as me/cfs symptoms are dry cough and elevated temperature.
It doesn't look like all long covid = me/cfs, but that maybe some of them do have it. Or perhaps it's a related illness, but it's hard to explain the prevalence of lung-symptoms. Unless the lung-symptoms are the ones going away and the me/cfs ones are the ones staying.
New blog
Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath
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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.
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It would be nice if they have the same thing as us and we’d finally get research done.
Would be nice does not make it true.
The symptom list is prelim and so forth, but to me it does not have the differentiating and defining issue we have except for PEM, and that’s not confirmed to be the same as ours. We’re OK right after exercise, asleep a few hours later and zombie-like two days later. They may well have something which causes reduced O2 absorption and thus exercise intolerance, but via a completely different mechanism than ours.
In the above list, I do not see:
- Heat intolerance; after exposure to heat we crash, with PEM-like consequences
- Standing: Pure poison for most of us. In my case, 10 minutes of standing in a queue will lead to a worse and much longer crash than 10 minutes of jogging, although that’s only possible during upswing periods.
- Ordinary activity: Probably the most dangerous, because it leads to be far from a mattress or other safe place to lay flat, and we don’t feel it immediately as we would with an attempt to do cardio. Go do a few errands, go to the post office, etc. Some sitting, some standing (fuse is lit) a little walking, more standing (fuse goes sssszzz), then we’re worn out but 30+ minutes from home. BOOM, that’s a multi-week crash, far more severe than hopping the stationary bike studies like to us. —-> Do Covid Long-haulers have that?
- Dizzyness when quickly shifting head position, and after turning movements: Turn body 180, pause, repeat. There’s a little disorientation. Move through such changes or be a passenger traveling along local streets, we’re knocked out later that day. Even if we did no pedalling, walking or climbing. I strongly suspect this isn’t just me.
- Tinnitus not related to loud noise. IDK how common this is, Ramsey mentions it.
- Sleep disruptions: We don’t just have ‘trouble sleeping’, we tend to have clock flip: body wants to be awake at night whether we like it or not and asleep during the day. This effect happens more when we’re severely whacked, less during milder ill times.
- Sensitivity to light and not appearing in mirrors —-> OK, this may not be common. One hopes.
Yes that’s illogical. People are illogical and they like it that way.
I don't think you can generalise about all ME sufferers. From discussions on this forum, it does not seem to me that we all experience all the things you list exactly as you describe them. We need to be careful not to generalise from our own experiences.
For example, I think only a proportion of pwME experience sleep reversal, and many/most don't feel OK after exercise. True most of us experience PEM as a crash a day or 2 after exercise, but that doesn't equate to feeling OK after exercise. I think many experience rapid fatiguability causing necessary cessation of exercise with immediate increased pain, weakness, OI etc. The delayed crash seems to me a whole other level of loss of function and 'malaise' affecting many body systems. And the PEM delay may be a day or less, not the 2 days you describe.
The descriptions I've seen of PEM from some of the post covid 'long haulers' seem very like the PEM I experience - delayed crash putting them to bed for days after seemingly normal daily activities. The details of exactly what symptoms the 'malaise' of a PEM crash includes vary from person to person in both ME and long covid, but the loss of function and overwhelming nature of the symptoms seems to me to be the same phenomenon.
But not all post covid 'long haulers' report PEM, some have more specific covid symptom recurrences without PEM, and some even with PEM seem likely, as with other viruses, to recover fully in the first year or so.
It's M.E. Linda
Senior Member (Voting Rights)
Like @Trish , I would say that we all experience variations of symptoms.
For example, I have never experienced ‘sleep reversal’.
My sleep disruptions take the form of:
Inability to go to sleep (as a lifelong bookworm, I can no longer read before sleep. It makes my brain work and then it cannot click off to sleep)
Awake in the night (not just the usual walk to the bathroom), from anything from 20 min to 3 hours, this doesn’t mean that I will sleep longer into the morning, nor sleep during the day. I just have to manage with that lack and hope I get a few extra minutes over the next week or so.
Wake much earlier than my ‘normal’ waking time.
I wouldn’t get all three in one night, just any of them, in any combination, whenever my body decides to mess me about.
Your comment on similarities of Long Covid.
I agree, we are a ‘cousin’ of some sort. But it would be good for any studies of Long Covid, to use us and perhaps MS, as ‘symptomatic controls’, alongside Healthy Controls.
I also like the sound of Dr Weir and U.K. ME/CFS Biobank possibly investigating Long Covid to see what is happening with their blood.
So many of us had post viral (but not in pandemic proportions) or sepsis onset.
Dx Revision Watch
Senior Member (Voting Rights)
A number of my posts on potential terminology and SNOMED CT/ICD coding for post COVID-19 symptoms were moved to a dedicated thread:
Post Covid-19 Syndrome SNOMED coding
I've commented on @Snow Leopard and @NelliePledge 's comments above in that thread at this post:
https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/#post-289348
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Thank you @It’s ME Linda. I asked Simon on twitter too which he kindly replied to. He shared too that people with LongCovid have said that many of them now have stopped adding their data daily to the CovidApp. This makes sense so I can see now the 1 in 200 figure is almost certainly inaccurate.
Simon M
Senior Member (Voting Rights)
I would have thought there were two big advantages to the current situation.
The first is that it is relatively easy to set up prospective studies of long covid. Assuming for now that some of them will prove to have ME/CFS, that means prospective studies of ME/CFS too. Along with genetic studies, prospective studies are one of the best ways to untangle cause from effect, which is always such a problem in ME/CFS. Hopefully, it will be possible to find out what biologically etc distinguishes those who have ME/CFS-like illness but recover within, say, a year and those that don't.
The second is that there are so many studies starting or being planned. So replication should not be a problem, for once.
However, I'd like to hear more about the problems you see.
Definitely
Dx Revision Watch
Senior Member (Voting Rights)
Not sure we are currently in a position to be able to "prove" that anyone (whether they are confirmed as having a history of COVID-19 or not) has ME, CFS.