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

"I write this to my fellow covid-19 long haulers whose tissues have healed. I have recovered. I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience".

His downplaying and clueless account of ME is seriously maddening. We are not 'still unwell'.

 

The Kelland pieces had significant influence, but well before that just the tone of some criticism encourages other academics to be 'loyal' to their colleagues, want to avoid adding to their burden, etc. They also mean that any criticism that is unfair and unreasonable is viewed as part of a wider problem. There are so many ways it's counter-productive. These sorts of things shouldn't really matter, but they do.

 

Well i disagree, i think reacting platonic when someone spits on u is counterproductive when no one is watching

 

Absolutely. And we want to avoid doing things that might make that harder to achieve.

I can't claim to understand what we've seen, but here we are. We have to try to move forward from where we are.

 

I send my best withes to Paul Garner, with the hope he maintains his recovery over time, and that he will not spontaneously relapse down the road, or having a second hit that sends him back to the ME pool.

i take offence by the comment he made in regards to not having psychological problems which results in the maintenance of ME. It is also unfortunate that he is in a position of power, and because of that he was given a bullhorn at BMJ, to share with the entire medical community, including physicians who take care of COVID patients. The harm that he is doing will without doubt cause further trauma to a community of patients who will be told they are not trying hard enough, and re-traumatizing a whole community of ME patients.

 

I'm conflicted over how anecdotes should be treated, and I worry that being too critical of people who use their own anecdotes to push a particular narrative can be counter-productive. I'm really unsure of my position there. I certainly don't like making reference to anecdotes, and would avoid speaking of my own personal experiences when discussing ME/CFS.

Garner's anecdote driven blog is a particularly weird one given his position and that it's published at the BMJ. But haven;t his other blogs often been like this? Here he intermingles his story with medical claims lacking any sort of reference ("I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious. These neural tracks become established like tyre tracks in mud. I learnt that I could change the symptoms I was experiencing with my brain, by retraining the bodily reactions with my conscious thoughts, feelings, and behaviour."). I understand why people see it as calculated to promote Recovery Norge style PR, but I feel much less critical of Garner than someone like Vogt. Garner has been through a really strange experience that he will not have had time to properly digest yet. I expect that his colleagues will see any anger expressed by patients as more reason to view the concerns of ME/CFS patients dismissively rather than take them any more seriously.

I think that on this issue it's worth emphasising that the only reason anecdotes, and which anecdotes are selected to be amplified, can be such an important issue around ME/CFS is because of other more important problems.

 

It will be interesting to see if objective evidence shows up of his recovery. As was highlighted again over the weekend with a Swedish or Norwegian newspaper article, you are trained to lie after LP. I know less about the other brain training courses but the same doubt may apply to people who have done them.

 

Just read the BMJ blog. Easily the most poisonous thing I have ever read on me/cfs, at least in many years.

A seemingly reputable reference presenting unscientific reasoning, antecdotal evidence, wish-washy makeup pathology, a dig at behavior of me/cfs patients. Certainty in what happened. Total disregard for post-viral recovery,and the usual course of post-viral fatigue.

In fact he lumps the two together as "...post viral fatigue syndrome (CFS/ME) years ago..."

Misleading use of references (except to back-up what happened, what program was used, or the typical course of post-viral fatigue).

Right, because they might not have recovered from the same things... so let's ignore them?!

This is a invitation to fill-in-the gaps me/cfs dismissal and disgust from any medical professional that wants a reference that seems reliable but isn't. And how many people will know the difference between a proper body of research and the opinion of a reputable doctor?

I mean he literaly just exercised out of it. No one has ever tried that before!

 

The difference is what the person does with his/her anecdotal experience, the reach of that anecdote and the framing of it.

 

A response via BMJ Disqus and Facebook:

 

Merged post
Had to make a video about the shocking article by Paul Garner that was just published in BMJ (https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/)

Patients; please do not try Lightning Process because of this.
Relatives; do not pressure those you love to participate in a treatment that has never been able to show effect on objective endpoints.

https://www.youtube.com/watch?v=WjWC6ZK1Uwk

 

Spot on. Patients are taught that the LP doesn't work unless you tell everyone you have recovered (even if you haven't).

The whole article sounds like he has fallen for this scam hook, line and sinker. In fact, it reads as though it's written by someone who has been indoctrinated into a cult.