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

I was thinking about that book this afternoon, trying to remember when you were giving that immunology talk that you wanted to get out of the way first, wondering when I was due to start cajoling you again. I’ll put it in my diary for May 1, if I don’t hear from you before then.

 

I think that explanations like that can also fit alongside the simplistic model I posted, making it a bit less simplistic. I'm sure there's a lot more going on in terms of personal relationships and interactions that we will have no idea about. People's stories and motivations are always really difficult for anyone to truly understand.

 

It's definitely showing that BPS beliefs are the near universal norm, far from being fringe. There are more visible people pushing for this, their career is tied to being perceived as right, but their beliefs are very widespread.

I'm not feeling good about our odds. It's become pretty clear to me that without Long Covid we were never going anywhere, it's entrenched too deep. But even with it, the overall reaction is one of a system that has completely given up trying and can't bring back any of that energy or curiosity, just going through the motions because they are familiar. Simple but wrong solutions to complex problems... every-damn-one falls for them.

 

Those who say ME is short lived and not serious are gaslighting sufferers. Even support groups who do this. For years the message that ME was easily overcome made me question myself. What was wrong with me that I could not recover?

The lame, useless name "Chronic Fatigue Syndrome" also contributes to gaslighting ME victims. Some, and indeed probably many physicians report patients' recovery from this illness. Given the vague name, and vague case definitions, one cannot really blame them for incorrectly diagnosing all manner of ailments as CFS. When some of these patients recover, their improved health is held up as proof that pwCFS recover. Further gaslighting patients who actually have ME.

 

Deeply entrenched yes. Thousands of years of blaming the "possessed" victim. Easier to blame, and other, than pull up one's socks, and get to the real work of finding the biomedical cause, treatments and cure. Much easier to scapegoat and malign. The easy way out for systems, and individuals.

 

And I also believe we in S4ME can feel proud we must have played a non-trivial part in much of that progress.

 

Additionally, some physicians may consider patients recovered if they stop coming back to seek treatment whereas it's just that they are still ill and nothing can be done - or, worse, are avoiding harmful pseudo-treatments. If you don't keep coming back, you're usually assumed recovered.

 

I just saw that Wessely's old mate thought that Deb Cohen did a good job of providing a balanced view of this controversy:

https://twitter.com/user/status/1380288203022798855


Reminded me of Wessely's old tweet on Marchant:

https://twitter.com/user/status/699220209492750337


It's good to have reasonable people like this tell us when a piece is fairly balanced.

 

Exactly, @Aerial. I think this is especially true where alternative physicians are concerned. Their treatments are often expensive, and dare I say, may not work. If people disappear from the doc's roster, they may be counted as cured.

 

No, he's thinking of his career

 

Could we include the harms done to ME as whole and to Long Covid as another adverse consequence of the Lightening Process, that is if Paul Garner did have input from one of the Norwegian practitioners?

 

What baffles me is that covid in itself is indeed something new and what we know about its sequelae is still relatively limited, yet these people (it's not particularly Garner I'm talking about here) already seem to know post-covid syndrome is psychosomatic, before a decent amount of research. This attitude should raise some red flags in the public eye but again, I tend to be ever hopeful.

 

Anyone know if there's a transcript of the Newsnight interview? I can re-listen and note the extracts but a transcript might be easier. Thanks.

 

BPSers are masters of circular reason and there was always the danger for long covid sufferers that they'd be stigmatised & marginalised in the same way as ME patients.

If that fails then the obvious option is to just go ahead and stigmatise long covid sufferers and then use them to keep ME patients in their place.

 

My complaint about the BBC Breakfast interview is ongoing. They are dragging it out far beyond the usual timeframe for responding (as predicted) but I shall persevere. There is a long way to go yet, even if my appeal against their original decision is rejected.

 

You're probably right. He's certainly very quick to cash in though.

We've already looked on in bemusement at his very public and emotive reactions during his "recovery". In hindsight it does look like setting the scene.

" Recovery" is in quotes because I'm not sure what the appropriate definition might be. [Only partly sarcasm]

 

I do know, as someone who used to lift moderately heavy things, and who has seen kettlebells in use, by people who knew more about how to use them than simply how to pick one up, that PG had probably never picked one up before, or watched a single video on how to use them, let alone used them in training.

The whole first part of the interview, in the garden, with the kettlebell, was IMO completely staged for effect.

ETA - the whole cycling slowly around a park for 20 minutes and increasing it also doesn't ring true to me. If he'd of said walking then I could understand, but cycling, which requires balance, and constant effort not to fall off, keep the speed high enough for stability etc. (so no way of resting once he started) etc.

Again - doesn't ring true to me. Contrived.

Not saying he didn't do it, although it would be a 'poor' choice of exercise if he was as ill as claimed, just that virtually anyone who knew anything about, anything, would no more have suggested cycling as a first approach than skiing.

At least for me, one of the first things to get disrupted during a 'flare' is balance, and reaction speed - I can still move if it's not too bad but not on something like a bike - I wouldn't even attempt it - and haven't for close on 30 years.

 

Talking of books, as I am sitting looking at -Science, Politics,.....and ME'. (Ian Gibson & Elaine Sherrifs. 2017)I'm thinking JE this would be a good place to start?
RIP Ian G; sad news but at least you tried.......

I went to the original constituency meeting with Ian K and J, to start the ball rolling for the Parliamentary Inquiry and report summer 2005.

*Press Release*
*Parliamentary Inquiry into Myalgic Encephalomyelitis Urgently Needed
says Ian Gibson MP*
1 August 2005
Dr Ian Gibson, senior scientist and MP for Norwich North, is working
towards the establishment of a broad-ranging independent inquiry into
the causes of Myalgic Encephalomyelitis and treatment of patients. Dr
Gibson met with Professor Malcolm Hooper, Emeritus Professor of
Medicinal Chemistry, in Norwich on July 28th to discuss the seriousness
of the situation facing ME sufferers.



I taped the meeting at the time and still have it somewhere.......

My overriding feeling after that meeting was that it was apparent that Ian knew not what we was embarking on and just how intransigent and deep seated the problems were.
With his so typical enthusiasm, get up and go, he believed he could make a difference .... it could be sorted.

What he learnt along the way is history and still defies belief; but he never gave up and never wavered from at least trying, bless him.... so RIP.
Fighting the ME crap (a word frequently appearing in this thread!) must have taken its toll.
It certainly has on me.... and I echo Trish's comment.

 

I posted one here: https://www.s4me.info/threads/paul-...les-and-other-media.15629/page-57#post-337449

 

"Need to avoid pessimism regarding pragmatic treatments"

If only they could distinguish between pessimism and objectivity ... but then, if you lack objectivity you probably can't.