Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Yet, as a PwME, my argument would be that is the very reason to be pointing out the seeming connection. Just because LC folks are ill following a Covid infection, why should we not point out that many of their symptoms are an exact match for symptoms of ME? If these people hadn't got sick in so many numbers during a pandemic that is largely being taken seriously by the entire world, and instead were appearing in their ones and twos, as all of us currently diagnosed with ME did, the vast majority would be receiving an ME diagnosis almost certainly.

As I posted above, some claim that LC must be different as lots have physical damage that is found on tests, my counter to that is the vast majority of current ME patients never had those tests, so we can't say ME patients don't have the same sort of damage.

If we do not highlight the connection, in a reasonable way, such as Charles and others are doing so, then the efforts of some of the (mainly UK) medical 'professionals' to create a post-Covid syndrome, that in many ways will be identical to ME but treated very differently, will be made all the easier.

 

I agree, although I strongly suspect that the enthusiasm for Long Covid will rapidly wane amongst tweeting medical politicos and it will slip back to the same bottom agenda slot as ME.

I think that Long Covid is an unhelpful term. It mixes symptoms from lung, cardiac brain damage with symptoms not attributable to these, which until proved otherwise are unexplained post-viral fatigue syndrome or, with time ME/CFS.

Neither these deserves a new diagnosis. The author Michael Rosen, who was on ICU and had lung damage clearly has the first type of problem. It is no different from the same thing after TB or meningococcal septicaemia as far as I can see. Those who have brain fog and PEM after a relatively mild acute illness without being in hospital presumably have the second. Suggestions from the LongCovid advocates that it is 'different' and' vascular' are not based any evidence I know of.

The problem of importance is getting the recognition of a chronic disabling condition called ME/CFS that really has not much to do with epidemics. It has always been there. Epidemics may have brought it tonight but I amdoubtfulabout that.I think they may have fed the 'false belief' story. The idea that there is a special illness due to a mystery virus that might be enterovirus or herpes or XMRV or indeed SARS-Cov2 is indeed almost certainly a false belief. In the meantime people goon being chronically ill through some more general process that we do not have a grip on.

Much of the problem is pretending that LongCovid is one big symptom bundle. The symptoms of the two different problems may look superficially similar but I would expect them to be quite different in their detailed pattern. I never had problems distinguishing people with lounger cardiac damage from people with ME. The business of counting how many people still have one or five symptoms at three or six months is just stupid. You don't just count the number symptoms six months after cancer surgery. You work out which if any are likely due to cancer, which requires a detailed inference process involving tests, physical exam and pattern of history.

 

Something that this discussion makes me think of may be of more general relevance.

The person with fatigue due to heart failure and the PWME are almost opposite in a sense. It always seemed odd to me that Julia Newton thought that they had the same problem - 'fatigue'. The difference is this:

The person with heart failure walks right in to their physiological problem, unaware that anything is going to hit them and suddenly finds themself impossibly short of breath at the time. Their warning systems are not working.

In contrast the PWME feels muscle pains or is unable to stand (OI) or has brain fog - in a sense the warning system seems to be in overdrive. It is also malfunctioning in that it may kick in much later. But that delay shows that the symptoms are not directly due to shortage of oxygen or whatever at the time but to warning systems that the body uses to protect itself from getting in to dangerous physiological situations.

This post has been copied and the discussion of breathlessness in ME/CFS has been moved to this thread:
Breathlessness and air hunger in ME/CFS

 

This was really my point in my last post about Charles Shepherd's comments. I cannot relate to those with long-Covid who are coughing and sputtering (and in fact vomiting) because they're attempting to go up a stair. It showed these patients on Dispatches last night. Those are real time problems, and whilst pwME have real time issues (muscle weakness, pain, cognitive issues, etc) they look quite different. What was also shown on Dispatches was that these long-Covid issues are generally resolving with time (as you'd expect); the man vomiting from walking 60 yards could walk further the next week, and further the week after that as his lung and muscle function improved.

 

@PhysiosforME and Long Covid Physio joint response.
https://www.physiosforme.com/post/w...or-long-covid?postId=6050917b40f0780016c65013

 

Good point

I would point out that when severe (as myself),it does happen pretty fast. When mild, the delay was more obvious and insidious. However,there was still clear discomfort with OI and fatigue. But the bigger "crash" happened later

 

The BPS people made much of ME/CFS being a different sort of disease. One leading proponent said it occupied a region between mental and physical illness as if it was something part plant part animal. More and more diseases are getting pulled into this hole by being classified as MUS.

Yet the reality is surely that ME is a disease (or diseases) that works in exactly the same way to other diseases - a part of the body no longer works the way it does in a healthy system due to intrinsic or external factors. The only difference is that research has not yet shown where the damage lies.

Patients recovering from Covid may have damage to the heart or the lungs or whatever causes ME or, at least, causes symptoms similar to ME but it is all damage caused by the virus hijacking the function of the cells.

Lack of knowledge about something says something about the observer not about the thing itself. Airplanes are not magical just because I do not know how they stay in the air and they do not change what they are when I find out the science of flight.

I hope that any research into longcovid might shine a light on the damage causing ME as I feel we have been going backwards for years with too many experts talking about it as some sort of nebulous thing.

 

But also that a *subset* of LC patients actually have PVFS and will 'develop' ME/CFS.

 

Wessely school et al have been very good sales people - and they come along with a very seductive package for commissioners, research funders etc to buy into. And the bar for evidence is low and can be spun. And it has been spun a great deal. PR is the 'game' - not actual real-world results for patients.

 

https://twitter.com/user/status/1370181803760365569

 

That was posted by Sten Helmfrid on Twitter - marvellous work!

 

And this reply:

 

Hee hee, I love that reply. Lots of good replies in that thread.

 

Rumor is that Garner will receive funding for a clinical trial of GET for long covid. What a disaster.

 

Yikes, wheres the rumour from?

 

Sorry this is a bit jarring now as the thread has moved on but it felt important for me to respond.

Sorry it’s taken me so long to reply @Wyva

Reading back through my recent posts on this thread i realise they can easily come off as a bit superior/patronising & implying that anyone who attributes symptoms to something unconventional is foolish, & perhaps that i think their experiences are not to be taken seriously. I dont think that. And i'm sincerely sorry to anyone who felt judged, dismissed or otherwise hurt/offended by my comments.

I agree that especially because it is poorly understood illness, we need to keep an open mind. And seeing an unexpected pattern isnt being obsessed or unhealthy in itself. Sometimes those patterns/attributions will be scientifically impossible, sometimes not.

My posts came from a place of anger with Garner & his ilk because I'm totally fed up with them assuming that their unhealthy/unhelpful reactions to things they experienced, are 'the problem' in ME, when many of us dont even have those reactions, and that coloured my posting.
What i meant is better described by these other more eloquent people...

I am so sick of this portrayal of PwME as being frightened (of both activity itself & the consequences of it), obsessed, and making attributions which have no basis in science or fact. I and many others, am not frightened of activity or it's results, am not obsessive & have learned not to make attributions without very strong reasons (ie a lot more than his '1 afternoon eating too much cake' + next day crash = sugar allergy).

Pls note- I dont believe that anyone who does get obsessed, or who does feel frightened of activity, or who does make such attributions should not be listened to, but i'm sick of them assuming that just because that's what they did, it must mean that is the general problem in PwME.
But clearly that is not the underlying cause of symptoms/illness, since many of us do not fit that profile at all.

I didnt think anyone fit that profile, as i never met anyone who felt properly frightened of minor increases in activity (obviously someone who is very severely affected would quite rationally be scared of something that would leave them in agony for months, but thats not the kind of fear Garner alluded to in his interview). Nor have i met anyone who went beyond observation & keeping an eye out for patterns, & into the kind of obsessiveness he describes. I was merely acknowledging my error when it was pointed out that perhaps some PwME did. I wasn’t intending to make "sweeping generalisation" about anyone.

What i said about improving with LP seems to have been misinterpreted as meaning that i think some PwME are only ill because they're obsessed or something, & will therefore likely improve with LP.....but I would never think that!! So apologies to anyone who read it like that, that was *not* my intent.

My saying it would be 'interesting' to find out if people who reported benefit from LP/CBT were those who felt scared/obsessed with symptom monitoring etc, was just simple curiosity - I wondered if perhaps CBT/LP could help someone to put the huge amount of physical & emotional energy that fear & obsessive behaviour takes out of you, to better use.... & therefore that could seem like an improvement?
I'm just always curious as to why some people report benefit. I detest LP, but am just trying to keep an open mind & not dismiss those who report improvement either.

I'm sorry to hear this, it must be just awful to live with.