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

I am puzzled by Garner's account, and the timeline. From the early posts it seems that he became ill in early March. He says he was referred to an ME specialist seven months later. That would be October. He had to wait for the appointment. Let's guess at end of October. After a couple of months he went on holiday and contracted Dengue fever. So that would be December. Was travel to Dengue prone areas recommended at such time? He returns home exhausted. Are we into January yet? Now he is recovered, for the umpteenth time.

When was it that Greenhalge first announced his recovery?

And Dengue was mentioned in one of the original blogs.

It is all very odd.

EDIT typos

 

Well, not exactly. Without the validly facetious point regarding sample size, which is important.

 

I haven't been following this but I'm wondering if someone can explain what these words refer to "over-egged the 'physical' side with mast cell activation and whatnot"? Thanks

 

@Hutan what a great response. It's got two good arguments, one scientific, one emotional. Both important.

 

Merged post
There are a lot of good comments below the article now, including an excellent one from @Trish.

 

Not what you asked, but...

While I completely agree with @Jonathan Edwards that there can be the risk of overegging, it seems to me that the medical community faces a balancing act that necessarily depends on cognitive dissonance, to manage the reality of decision making requirements Vs unknown/known uncertainty.

But here's the crux. Some minds, including professionally accomplished minds, are particularly unable to manage that cognitive dissonance. It's human.

This is not a point specific to ME at all. It is the balance between 1) self-policing of apparently settled consensus Vs 2) the reality of perpetually shifting sands, often with findings that place the consensus in question.

This is true in most fields, but medicine is an industrialised effort to apply scientific findings, especially with top down orgs like NICE, CDC, etc. These are required features with pluses, sure, and downsides of reinforcing that necessary/inherent cognitive dissonance. Sometimes less, where ideas are beyond nascent/nonsense, and sometimes more, where thinking is solidifying.

This will always be a challenge, as marketplaces of ideas and findings will keep finding and rebalancing equilibria. A constant ebb and flow.

 

Yes, the thing about Dengue is very strange. This is what he was quoted as saying about long covid in May having been ill with COVID in March "The best parallel [for long covid] is dengue fever, Garner suggests – a “ghastly” viral infection of the lymph nodes which he also contracted. “Dengue comes and goes. It’s like driving around with a handbrake on for six to nine months.”

Why was he going on holiday and exposing himself to Dengue again? During a pandemic...?? So so weird

 

I remember discussing with the children an English A level text. What interest was provided by the "unreliable narrator"!

 

Couldn't find it on the forum and neither on BMJ now, but also remember that it was brilliant and I think it would be a very helpful response now, too.

Does anyone recall where it was posted or has the capacity to find it?

 

If this is the case, then he should have made a statement that he was misdiagnosed with ME and recovered from PVFS. That is the responsible thing to do as a health professional.

This is another disservice to the ME community from the 'stars' of social media.

 

I didn’t want to draw attention to PG’s nonsense but I decided to quote share TG’s tweet because I think it’s important that people with long covid (quite a few of whom follow me on Twitter) know her views.

Now that there are some excellent replies under Garner’s blog I hope that will mitigate the damage he’s done. Remember you can upvote the best ones so they go to the top – I’ve upvoted Trish’s and will upvote Hutan’s excellent response when it appears.

https://twitter.com/user/status/1354052544952209409


[Edit to add that I’ve now been blocked by TG along with just about everybody else with ME/CFS it seems.]

 

I wonder through, could the early intervention of the ME community connecting LC with ME actually have been harmful, unintentionally?

I know many on Twitter stressed that pwLC have to be studied to find out who has symptoms due to organ damage, who has post intensive care syndrome, who has PVFS and who really fits the ME criteria.

But warnings from the ME community maybe really had some people become anxious and thereby feeding to S. Wessely and BPS narrative. It's a catch 22 - our community has the obligation to speak up (for pwLC as well as us) but by doing so we risk shooting ourselves in the foot. Cause what stucks is "ME" (never ending) not "PVFS" (self limiting).

Having said that, P. Garner must know about PVFS, he said he has had it before and recovered. But he chose to go with "I fit ME criteria and recovered".

 

As comments below blogs can be overlooked by many I wonder if you, or anyone else (@dave30th @Caroline Struthers @Michiel Tack @Tom Kindlon @Carolyn Wilshire??) might consider submitting your own opinion blog in response, which is likely to be more widely read. I would be happy to help anyone doing this but I’m not up to doing it myself at the moment unfortunately.

There is info on how to submit a BMJ opinion article or blog here: https://www.bmj.com/content/bmj-opinion.

In the meantime I am going to try to submit a short formal complaint to the BMJ, requesting a retraction and apology.

 

I did feel that this could backfire. It was too early to make the connection to ME based on own experience with PVFS.

 

I submitted this to the BMJ blog, it's still awaiting moderation several hours later:

I am glad that Professor Garner has recovered from his illness, and I do hope that his recovery will be permanent. I am, however, concerned that he claims that his recovery from ME/CFS has been facilitated by basically saying to himself, 'There's nothing intrinsically wrong; my body was giving out false signals. I have suppressed them by thinking them away.'

I have had ME/CFS, contracted after a dose of flu, for 16 years. I, as with others with ME/CFS, have been subjected to a veritable barrage of such stories of miraculous cures, and, like the others whose health has never recovered or actually deteriorated further, mental persuasion has had no effect whatsoever. Not only are there a whole host of expensive private therapists offering this, but NHS treatment has been under the influence of what we ME/CFS cases cynically but accurately call the 'all in your head' school or the 'Wesselyans', after the psychiatrist Professor Simon Wessely, who, no doubt in good faith, decades back established this school of thought when the condition first came into view.

Some people have recovered from what was diagnosed as, or what they thought was, ME/CFS; there is always the possibility that they had a condition with similar symptoms but from which recovery is possible. Recovery from ME/CFS is, however, depressingly low; full recovery is a tiny percentage, and mainly children; a fair recovery is rare; most people do not recover more than just a little, and the many deteriorate further.

The Corona Virus is a new phenomenon, the 'long hauler' is thus also a new phenomenon. There is so much that we have to learn about the long-term impact of the virus. That a large number of corona virus cases have resulted in their getting ME/CFS-type symptoms is not surprising to me, seeing what happened to myself and many other people with ME/CFS whom I know. It is possible that the 'long haulers', or some of them, have ME/CFS; it's also possible that they, or some of them, have ME/CFS-type symptoms that are related to some other, maybe new, condition. A great deal of research will need to be done before anything concrete can be established.

In the meantime, I hope that Professor Garner's recovery is complete and that he won't suffer any relapse. But at a time when -- finally! -- the NICE has just issued revised draft guidelines on ME/CFS that propose a sharp break from the stranglehold of the Wesselyans, the last thing we with this debilitating condition require is somebody claiming that he's cured his ME/CFS by thinking it away.