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

"I got completely frightened that I’d be ill the next day. If you expect things to happen then they do."

i know Garner was talking about Covid in this tweet but .... really?

Most pwME just don't think like this.

Even with CFS clinics and GET the first thing they say they usually have to do is to get people to stop doing so much. It's just the wheels come off when they start to build up activity again.

 

hm he described it as "shite" to Caroline S last July.
https://www.s4me.info/threads/bmj-r...-grade-working-group.19317/page-2#post-327694

 

And does that mean all of them are incorrect? This disease is known for being very diverse and it is difficult to find two patients who have the exact same experience. I believe just because someone doesn't experience one symptom or the same type of fluctuation, it doesn't mean it doesn't exist. I understand when people question something that is simply scientifically impossible but otherwise why question others' experiences of their own symptoms even within the community? It's bad enough coming from doctors so why question each others' experience with such a spectrum-like disease?

Sorry, but I'm one of those "weather change" types and it makes my life so miserable that I couldn't leave such a comment unanswered.

It must be one of my unhelpful beliefs.

Hm, the occasional layman person has these beliefs because they are frightened and obsessed and who probably report improvement after CBT/LP? This actually feels the opposite, that these people are viewed as someone whose experiences are not real and their symptoms are due to their misguided beliefs. That's what it sounds like, psychologizing, BPS and really rubs me the wrong way.

One thing that I find very important in my own group is to make sure pseudoscience is not involved too much but to also make sure people are believed when they tell us about their symptoms and fluctuations. No one really understands this disease very well, so who are we to doubt others' experiences, especially when our own ones have been doubted so often too?

I'm not saying no one is mistaken and people never attribute improvement, bad reactions etc erroneously to something but to me these were very sweeping generalizations.

 

So basically I can "expect things to happen then they do" --- who wants to be a millionaire, time travel --- are there any limits --- not really helpful is it --- in fact it's the reverse!

 

"The Cochrane review of exercise treatment for chronic fatigue is very well done and it was useful to me later in the illness, although early on when I was still feverish I needed to rest."
Imagine you're a bored soul doing a review of the correspondence re the draft NICE guidance and this gem arrives - from the great and the good. It would probably get circulated (to let others see the wisdom). Pity the statistics aren't going to be good I mean the mean [sum/(n-1)] isn't exactly going to work! Oh and he explains that if you "expect things to happen then they do" which negates his view that "The Cochrane review of exercise treatment for chronic fatigue is very well done and it was useful to me later in the illness".

Joking aside, it's a bit worrying that this made it's way into the original guidance - the point of this thread of course.

 

Oh sackcloth and ashes, sackcloth and ashes, I must flagellate myself and flagellate myself until I am good chums again with Alastair and Trish and Clare and Simon and Gordon and Paul and Signe and all those against whom I have blasphemed.

 

https://twitter.com/user/status/1370311640038699008

 

Guyatt of GRADE and the Busse letter on NICE's mistake, Glasziou (Bastian's supervisor and a coauthor on the Larun review that never saw the light of day and I think also on the Busse letter) and Mrs Floptop from 33 Acacia Avenue, Norwegian Institute of All Health (also on the Busse letter).

 

Oh, gosh, sackcloth and ashes again, oh dear! I hadn't realised that was not what Simon meant (or was intending to seem to mean).

 

Precisely. He was at the optimal time for recovery from PVFS.

 

He was frightened he was allergic after feeling ill the day after eating cake, that's a reaction to a single incidence, not noticing a PEM pattern that has changed since he had Covid and coming to a measured conclusion. There is also the issue of age and other factors here, lots of people without ME have the same consequence of eating highly refined carbs.

 

I'm writing something on this business, and here's a bit that I think might be pertinent, leading on from Garner's having 'looked down the barrel of the ME/CFS gun and disarmed it':

Let’s present an analogy. I left school at the age of 16 with five O Levels, having made a complete pig’s ear of the first term of a sixth-form course. I more or less lazed around for the best part of two decades, and then started a BA degree course in history, a subject I failed at O Level, and graduated at the age of 39 with a first-class mark. I then obtained an MA in social studies at 43 and a PhD in history at 48. Nobody would say that this is anything but a rather unusual educational path. More importantly, I would never recommend that my educational path should be the one for any 16-year-olds to follow. Yet this is precisely what Professor Garner is implying: just because he, to all previous appearances a long-hauler with ME symptoms, is back doing army-style physical jerks, that anyone with long-term fatigue can — and by implication should — follow his example.​

 

I'm not denying anyones symptoms, so I'm sorry if it came across that way. I am simply acknowledging that this phenomenon exists. If you've found what you think is a causal link between something and your symptom severity, then that's great. Paul Garner thinks he has found a causal link between conversations with Recovery Norge staff and his reduction in long-Covid / PVFS symptoms. My issue is the way he's running with that idea and thrusting it on others.

I remain skeptical. It doesn't mean I don't believe you.

 

I agree with what you've said but that wasn't quite how I read the post you responded to.

In the absence research and answers people are bound to try and make sense if things. Sometimes they'll be right and sometimes they'll be wrong.

Most of us do so with a fairly positive mindset. It's not about symptoms obsessing, it's about trying to be as well as we can.

However, we also bear in mind it is a fluctuating condition and no matter what we do we can't be in total control. The season change, the clocks go forward & back, the underlying condition is fluctuating.

There's a difference between observation and obsession. I reckon most people who've been ill for a while observe. Maintaining obsession takes a lot of energy. The flip side of being obsessive, instead of patient observation, is that should an improvement occur, however transient, there's a tendency to attribute it to whatever the person did at the time, even though it might only be a remission that occurs as part of the fluctuating nature of the condition.

 

Yes, I agree with everything you've said. Looking for patterns is absolutely natural. In fact as humans we often see patterns that aren't there.

And the point about obsessing over symptoms — (i) i think there is (recent?) evidence this is no more significant in ME/CFS than other illnesses or in the healthy population. But (ii) it does exists, and it can totally zap your energy.