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

He would then be offering a service in direct contravention to NICE guidelines, and he would be hitching his wagon to what most reasonable observers would liken to a cult. I realize the LP is given more credence in the UK medical establishment, which is lamentable. In the US, I remain convinced that the charlatanry is self-evident.

 

He is deeply confused, and his arguments can be refuted in seconds, as they have been here and on Twitter. Amazing this man was a professor of evidence-based medicine. He is obsessed with speculation and hypothesis.

 

If Garner becomes an LP practitioner he will get swept up in remarks that say LP is a cult which harms people and teaches them to lie. We won't even have to mention him any more, just say "anyone who is an LP practitioner...". His descent into quackery and pseudoscience will be very obvious.

 

It's a bit like the racist uncle thing, isn't it. Best ignored, as nobody is going to change opinions he only holds because they attract so much attention.

 

There's plenty of diseases that fluctuate over time.

Nobody in the US talks about the Lightning Process without scoffing. The overall situation in the US isn't great. Average doctors are still quite bad but the highest levels of the ME/CFS discussion are almost entirely biomedical. We have Dr. Levine's clinic, Bateman Horne Center, the Center for Complex Diseases, and the Stanford ME/CFS clinic. The only European medical centers I can think of are the Røysumtunet (a Norwegian hospital) and Charite Berlin.

 

I can't say I've seen that. I've seen people recognizing the fact that he was saying things that are true, and that's pretty much how low the bar is: it's worth praising someone simply stating basic facts. Because this is helpful to the patients. And also because it's true, which is very valuable in itself and extremely rare about chronic illness.

On the ladder to heroism, this is the very first step of many. He never made it further than that and I haven't seen much praise than that, which simply shows just how battered and mistreated we are and continue to be. It says far more about how medicine has treated us than anything about anyone.

 

Could not find a more representative flag-bearer of evidence-based medicine and Cochrane. This is what it's really like without the mask, it's a mindless political process for the most part. What little good it may produce is vastly outweighed by all the harm.

And even what little good it may produce is very likely to be extremely below the standard of what a better process could achieve. It demands to consider just how much progress has been stifled in the last few decades, it's entirely possible that most healthcare is actually below the level it should be, and much of it essentially no better than random.

There is still a lot of progress happening in advanced cutting-edge research. But outside of it, this is mostly what it has become: anecdotes, mythology, politics and coercively forcing pseudoscience down the throat of people who clearly dissent. And more than anything, complete disrespect for patients as human beings who can testify to our life experience more than accurately enough.

 

My waxing lyrical may have led to me overstating a little, though I remember thinking who is this Paul Garner that everyone is suddenly excited about just because he has seemingly grasped the concept of PEM. (I was not then aware of his role in Cochrane.) In part this was a general enthusiasm at the time for any doctor who seemed to come to an understand of the reality ME through experience of Long Covid and I guess in part a hope that he would influence Cochrane’s repeated failure to address the withdrawal of the ME exercise guidelines that they accepted were problematic some years ago.

In retrospect it is puzzling that a professor promoting evidence medicine developed a publicly expressed enthusiasm for understanding Long Covid in terms of PEM and pacing on the basis of a number of tweets, seemingly without an understanding of the literature, given his position was then dropped following a phone call with a Norwegian life coach.

[corrected grammar?]

 

Garner's story seems to show how the BPS people are fooling themselves. If they instruct all patients to ignore their symptoms, then this will occasionally appear to work miraculously simply because some patients will be at a point in time where they are recovering, or approaching a remission. The later relapse, or failure of this approach in other cases can then be constructed as patients lacking motivation or doing something wrong. The patients that are on a trajectory of improvement will probably also be the ones that are more open to try this approach, so there might be a noticable correlation between the mental attitude of patients and likelihood that the approach will (appear to) work.

And it will work best when ME is defined as vague entity that permits the inclusion of a lot of patients that have relatively mild symptoms and have not been ill for long.

The patients for which this appears to work might not truly recover but merely improve substantially. With their new found belief in the power of positive thinking they could be inclined to exaggerate how well it has worked. Surely if they keep being positive, the residual symptoms will also go away, right?

 

is Alastair Miller also a military enthusiast like Garner?

 

Similar to when Uri Geller on live tv told people to go to the drawer where they had left a broken watch and start shaking it saying the magic words and hey presto the watch would start working. People started ringing in to the show saying "wow! it really worked". Of course the many thousands of people for whom it didn't work didn't bother ringing in so it left the tv audience marvelling at his magical ability.

 

http://www.merseysideskeptics.org.uk/2009/10/skeptics-in-the-pub-november-19th-alastair-miller/
He was in Marines and hobbies include mountaineering etc...

 

Nice thread from 2017- warning contains some direct language!!
(Not a recommendation) Alastair Miller on CFS

[Mod Edit: LINK]

 

That is a good thread. And AM is from Liverpool.

Some very good comments refuting him in an evidenced based manner, some interesting commentators on both sides, some extreme, but I particularly like the last comment by a doctor.

 

One more:

Carcinoid syndrome symptoms early on often "cyclical"; feel better between "flushes". This means carcinoid syndrome is a brain-body disorder (psychophysiological). Recent reviews miss this point completely, denying patients useful psychological approaches to help recover.

 

Just playing catch-up on the recent gems from the PG collection..

Might be slightly off topic, but, am I alone in being somewhat baffled why the MEA decided to share the Livpost article on their FB feed? (sorry, can't see how to share FB posts now, else would for completeness).

Whatever the context they felt it being shared was, it's not exactly a helpful article, was most likely to cause upset rather than broadening any open/positive discussion to the benefit of pwME.

I would have hoped their efforts would have been expended rebutting the incorrect/misleading claims that they could from the article and PG in general, rather than needing to have to defend their decision to share it.

Happy to delete if I'm out on a limb...

 

This is my long term description of quack marketing, but I can update it. Casually enrol 1000 people without careful characterization. Heck, they can just be customers who pay for a product. Of those 100 might improve or get better but it might not be from the product at all. Of those you can hire 10 to sell the product who have glowing personal testimonials. We cannot be sure any were helped by the product, but they certainly can tell a wonderful story.

 

The MEA put ALL ME/CFS, LC & general disability related news stories, from all sources on their fb page, it doesnt mean they agree with it. It says "WARNING" at the top of the post so people who dont want to be upset can be cautious about it. I've never understood why people want them to only publicise stories that are positive.