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

there are a number of groups doing long-term observational studies of patients to track who recovers, who doesn't, symptoms, etc. Lenny Jason's mono/glandular fever study could provide this kind of information for both ME and long-Covid, since they've been tracking participants since they were healthy entering students at Northwestern.

 

And Avindra Nath in NIH.
From the Medscape article Long Covid Cases Rise as Stigma of Chronic Fatigue Taunts (Jan. 2021):

Unlike COVID-19 long haulers, however, many patients with chronic fatigue syndrome go at least a year with these symptoms before receiving a diagnosis, according to a British survey. That means researchers have had few opportunities to study the early stages of the syndrome. "When we see patients with myalgic encephalomyelitis, whatever infection they might have had occurred in the remote past, so there's no way for us to know how they got infected with it, what the infection was, or what the effects of it were in that early phase. We're seeing them 2 years afterward," Nath said.

Nath quickly realized that studying patients like Gage-Witvliet would give physicians and scientists a unique opportunity to understand not only long-term outcomes of COVID-19 infections, but also other postviral syndromes, including chronic fatigue syndrome at their earliest stages. It's why Nath has spent the past several months scrambling to launch two National Institutes of Health (NIH) studies to examine the phenomenon.

 

https://phoenixrising.me/archives/17049 Dr Clare Gerada steps into the lions’ den and “tells it straight” – attempts to “build a bridge between the largest Royal College and a very important problem” – hopes to “be better able to work with you to improve the care you receive from my profession”.

It's on line https://www.youtube.com/watch?v=7DQqKqLuxks

 

Trish, you are a superstar! Thank you. Being a moderator elsewhere, I know exactly how much of a pain that is - and doing it with ME must make it at least a dozen times worse.

 

Good blog from Valerie Eliot Smith on that BMJ blog:
https://valerieeliotsmith.com/2021/...arming-flip-flop-on-recovery-from-long-covid/

https://twitter.com/user/status/1356185917325770753


NB Reading Valerie’s blog made me realise I was wrong to say

He was actually put in touch touch with the Norway student having cast around his “international network of medical evidence specialists for help”.

 

About PG and CG on breakfast television - I know little about Naga Munchetty, but she strikes me as a serious journalist, or at least I know she has worked on serious news programmes. It's likely that she doesn't have much idea about Post viral fatigue syndromes, Long Covid or ME or the evidence for why exercise is problematic or any of the background behind why people have made complaints about the interview to the BBC. This as an opportunity for someone well informed and good at this sort of thing to make contact with a brief friendly explanation and give links to good sources of information if she wants to find out more. It might pay off in the future.

 

https://twitter.com/user/status/1356169774280146945

 

Yes you're right. I was thinking about how contact by patients via tweets etc with George Monbiot over a period of years has paid off recently.

(eta at least it seems that way)

 

Interesting thread on twitter (Keith Geraghty) re PG

Code:

https://twitter.com/keithgeraghty/status/1355100121550233610

eta: a different thread from the one linked to above by milo.

 

https://twitter.com/user/status/1353792263424503809


retweeted by Michael Sharpe

 

Thanks, Trish. As I said, he finally replied after I said I would be writing about his BMJ posts but it was a completely inadequate response.

I wouldn't expect to hear from him again. Interestingly, however, in that final reply, he did copy in the Director of Communications at the Liverpool School of Tropical Medicine.

 

I've been pondering "duration neglect" lately (which I first read about in Thinking Fast and Slow). I can no longer remember how it was in the 2-3 years when I was either dragging myself to work with a headache like a zombie or lying on the sofa in between sending myself back to bed every 2.5 hours. Back then I always assumed such an experience would affect me for life and I would never forget it, but now as I can do more things I just get on with them without looking back, and I know I can't feel how I used to feel or really remember it. Reminds me of how John McCarthy described the behaviour of the American hostages he was held with when they were released from years in captivity - he watched perplexed as they got straight back to partying, celebrating and living as usual with apparently no ill effects from their years of being chained in one room.

On the other hand until recently, when I had a bad day, I would assume it was a permanent decline and it was hard to remind myself that I've always bounced back before.

So basically I am a very unreliable witness of my own illness. Fortunately I have my meticulous daily diary and data to look at. Here's an interesting study which PG would be well advised to read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3138972/

 

Been thinking about the gravity of what is going on and that Robert M has issued a complaint following appearances on the 2th January 2021. The BBC should be taken to task in my view....for appealing to people like CG to Talk Up and to mislead people. An apology should be forth coming.

• May 15, 2020 Twitter Media Studio https://twitter.com/bbcbreakfast/status/1261229836632088579lang=enBBC
• Breakfast @BBCBreakfast

‘Vast majority of people that get this illness, survive absolutely, 99% of people” Dr Clare Gerada wants more positive Covid-19 stories to stop the fear...’

 

I have been pondering the quote "I feel that I have looked down the barrel of the ME/CFS gun and disarmed it".

When someone becomes ill with covid, then long covid or whatever virus followed by PVFS or ME, we have no way of knowing what the outcome will be. It is devastating as one has to plan for the worst but hope for the best and everything about life as you have known it is thrown up in the air while every support mechanism you though you could rely on is swiftly swept out from under your feet. Some will recover, some won't &, thanks to no one taking it seriously, no one can tell who will recover until they do.

Here's where I find the gun analogy apt - you are held hostage by an armed gunman. With self limiting PVFS it's not a case of disarming the gunman, it's that the gun is a very realistic replica and was never loaded with live ammo anyway. No matter what you did you were never in danger of being shot, though you didn't know that at the time.

The difference for ME patients is the gun is loaded and will be used, no matter what you do. It's just a case of the degree of injury - will you merely be mildly affected in such a way that has implications for the rest of your life or is life as you have known it over - bedbound & isolated.

I can appreciate that in PVFS how you feel may be more or less identical to the person who will become an ME patient and face identical challenges at the time. It is scart and it is traumatic. One can see that in order to re establish your sense of control you would chose to believe it was your own cleverness & gumption that got you out of the situation.

The reality is though, the gun wasn't necessarily loaded and disarming a gunman carrying a replica is a very different proposition than tackling a gunman with a loaded weapon that they fully intend to use.