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

Sorry, but this seems to me out of context @Esther12. No competent physician is going to go through the series of ill-informed belief states Garner was obviously engaging in right from his early tweets. We are all taught about the reality of post-viral fatigue and have seen enough patients to have a grasp of it. To fall into the beliefs indicates that he must belong to a medical subculture familiar to me since some of my peers joined it in the 1980s that thinks that most problems seen in general practice are based one 'mind-body interactions'. Essentially these are people who could never cope with science proper and slipped into shamanism early on. When academic departments of primary care were set up these people filled them in droves. Greenhalgh is the same. The PACE crowd are the same.

This is not the frailty of the situation of the man in the street faced with the unknown. It is the incompetence of someone in medicine who does not have the intellectual capacity to do the job.

 

They might belong to a subculture of medicine that believes in the modern equivalent of shamanism. However a sudden onset of something like ME/CFS is difficult to accept. We see that people often react to it with denial and magical thinking to shrink the problem to something they can endure more easily.

I think this can be a valid way to deal with a difficult situation. It can also be damaging, especially in the long term (or when it becomes the de-facto public policy).

When I had a major relapse some years ago and developed terrible new symptoms, I kept telling myself that it would improve and simultaneously knew it was wishful thinking and that I couldn't actually predict what would happen. However this positive thinking allowed me to avoid panicking. I slowly improved and as I did, I was able to accept a more realistic view again, well knowing that I had told myself lies. It's a way to endure a difficult situation while letting the body heal itself (I didn't tell myself that positive thinking would make me recover however).

The LP is the positive thinking equivalent of the strongest drugs available. That someone reaches for something to strong could indicate there is a serious ongoing problem. I hope Garner will be okay.

 

Also Prof Garner didn't "end up" being a public advocate. He chose to be one by writing three or more ramblings about his state in the blog of a medical journal.

It is great that he wanted to point out that there are a lot of people with "long covid". But he could have done this as well without throwing around theories. He isn't a victim (in a sense that nobody forced him to write public blog posts). He didn't need to write the last blog. And he certainly didn't need to diss all people with ME who are still sick.

Edit: clear up my last point

 

Not sure what branch of health care you are involved in but this should never be the way to do things.

The basic principle is that you have to be able to convince yourself that you can see why a study makes sense and is robust. There is nothing more to scientific methodology than common sense. The difficult bit is getting experience in all the ways things can be fiddled or muddled. In medicine that comes at the trainee stage with journal clubs where senior colleagues point out flaws and juniors get the hang of it.

 

I realise that this is a real problem. I also think that the journal club structure we had thirty years ago in medicine has been degraded in many places. This is where the training should come but very often it may not. Critical thinking is the only point of the exercise. Presenting for the sake of presenting has become increasingly part of the mantra but it is pointless.

Sadly, the answer may be, as in everything else in life, that if you want to get something done, you are best to do it yourself. One of the most important messages of education is that nobody has a hotline to truth any more than oneself. The experts are just you, a bit older.

 

There seem to be rules in PVF and ME/CFS recovery. Please correct me if I am wrong, when I am struck by sudden remission I want to do everything right:

Rule 1:
If you get into remission, you have to right a book, or a big blog post at least. The bigger and more public the better.

Rule 2:
You have to attribute the cause of remission to the last thing you did. Thing positiv, surgery, dinner. Animal sacrifices probably got out of fashion because most people aren't farmer any more and killing animals isn't on everyone's daily to do list.

Rule 3:
Sick blame the patient Community for still being sick. This one is optional l, but you earn bonus points.

Have I missed something?

 

So a public announcement (to the world or in the case of a less prominent figure, friends/family etc.) is part of the recovery process?

Fake it until you make it?

I really dont envy those who won't bc then you lose all credibility and support.

This is a perfect scam.

 

We have no real way of telling if PG has recovered or if he is merely under the influence of the L.P. brainwashing - or both.

I have a family member who claimed to be cured by a similar method. She never went back to a real job. After taking up a sport for a year or so after her ' recovery ' she abruptly dropped that and spends most of her time at home. Never goes on holiday or exerts herself. Her parents don't think she ever recovered. She still advocates for the method that cured her.

PG I assume, at his level and profession, can get by on the conditions that suit him? He won't need to stand for hours operating a till or serve customers in a shop or run around an Amazon warehouse. I could tolerate some easy deskbound work on hours that suited me off and on for years.

Once the euphoric effects of the L.P. wear off he can live a quiet sedentary life. No one will know what allowances he needs to make for his continued illness, if any. If he goes on holiday and crashes then something else will ge to blame.

If he can't continue at work then I am guessing that a pension awaits him. He won't be knocking at the door of the DWP pegging for a pittance.

 

Again my memory has failed me, but I believe that there was a discussion on an ME forum about whether having another infection can make ME a bit better as well as worse. If the immune system is revved up and people are forced to rest it could happen.

Also if the idea of being stuck in dauer is correct having an infection that has a strong response could click the switch when it was over, if you see what I mean.

Many years ago treatment of cancer was divided over whether you should use radiation and chemotherapy to kill off cells or the other method they used at the time of infecting the patient with, I think malaria (?) so the immune system produces a strong response which can activate it against the cancer as well. It may be that the dengue infection got rid of lingering coronavirus.

 

Hello, I thought about not commenting as I too felt disquieted like others. However, the more I thought about it the more I felt I wanted to get out there what I was thinking and the harm that this article can do from his place of authority and power given who he is. So, I have just posted this on the BMJ blog comments section. It's in moderation so who knows if it'll ever appear. So, FWIW:

Dear Dr Garner,

It is excellent news that you have recovered from your debilitating symptoms after Covid-19 infection. This is the usual and most common outcome from post-viral fatigue states which generally resolve between 6 to 24 months duration post infection. From a longitudinal perspective, for example, Dubbo study (Hickie et al., 2006)).

I was, however, rather taken aback by some of your statements. For a man of science and medicine to state, for example, “I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria.” It would perhaps be illuminating to your medical colleagues, fellow long haulers post-COVID-19 and the BMJ readership where you obtained objective evidence for this disease and abnormalities and by what testing method was used to demonstrate such? This would be potentially of great value in figuring out, along with monitoring the progression and recovery from, such states if you could please share.

As a Counselling Psychologist who works with patients with long term medical conditions in and outside of the NHS, I was amused to see that you “… started unconsciously monitoring signals from my body.” I wondered how this could be achieved. By its definition, the unconscious is not available for introspection or therefore self-monitoring.

I would have hoped that given your medical credentials and access to colleagues who would have reassured you that recovery in the medium term was your most likely outcome. I suspect your visit to the CFS/ME specialist did just that – priming you to the idea that recovery was likely. I was cheered to see that you were able to take good advice in your early illness from patients who have not been so fortunate as yourself and who have not had positive outcomes: to rest and pacing yourself initially. I am glad that you were able to receive treatment for your anxiety; however, I am baffled why you felt the need to seek care from an unqualified, non-clinically trained student in Norway? There are plenty of clinically qualified psychologists, with experience of working with post-viral patients, close to home, in the NHS, to support you.

Reading the description of the therapeutic process you engaged in (details of which are sketchy to say the least) I am struck by your absence of critical analysis of both it and the evidence base for it, or lack of. Surely this is an important aspect of credibility and essential if a professional is to be taken seriously by peers and professionals? Belief in one’s recovery (“I suddenly believed I would recover completely.”) while presenting woo-hoo pop psychology theories with no objective demonstration of cause and effect, are you really suggesting that your scientifically trained colleagues buy into this? The conformation bias and other well-known and studied phenomena I would hope would be a key part of your line of work (Director of the Centre for Evidence Synthesis in Global Health and Co-ordinating Editor of the Cochrane Infectious Diseases Group). So, while you had an inclining that all that was ailing you was not purely biomedical you have found your way out of the horrid situation that you were in. You have attributed that to your change in mindset, pushing heroically through your symptoms and “I did this by listening to people that have recovered from CFS/ME.” In the former two scenarios you show extreme bias by not considering the more likely hypothesis that you were naturally recovering anyway (supported by longitudinal evidence in other viral conditions) and having overcome some anxiety and fear avoidance you are able to recover your health. Why dress it up to read like a moral tale and disparage a completely different patient group to boot? And since no one has a reliable, objective test for CFS/ME nor for long-covid it is scientifically incorrect to state or to demonstrate objectively the later. This is at best a tentative hypothesis, a belief of which there are equally valid, alternative explanations. Ironically, the recently updated ME/CFS guidelines by NICE have removed the existing, poor quality evidence base for the approach you took, for ME/CFS, as having low or very low quality. There is evidence that these approaches, as you are advocating, can cause long term harm to people with ME/CFS, which I have borne witness to time after time in my clinic (Kindlon, 2017), with resultant catastrophic physical and psychological consequences. Many people with ME/CFS spend their time seeking “joy, happiness, humour, laughter…” This makes no difference to their condition – but helps them to cope. People with ME/CFS are not so fortunate to be able to overcome their fear of exercise, as they are not fearful of exercise, but exercise intolerant, which is something that can be objectively demonstrated using the two-day cardiopulmonary exercise test or 2-day CPET. That you seem unaware of this consistent finding in patients with ME/CFS is profoundly disquieting.

As a leader in your field in a well-regarded UK institution and a position of responsibility and authority I hope in time that you can reflect on what you have written in this blog. Perhaps if you can take the time to digest how biased your thinking currently is. Perhaps a step back is needed for you to look at this in a more scientific manner. Your blog is I suggest misleading and potentially harmful to patients with ME/CFS. I put it to you that this blog will cause upset, and unnecessary distress by overreaching and conflating your subjective and biased experiences with another patient group, whilst simultaneously not backing up your case study with objective data. All that is being presented here in your blog is a biased talking shop – one that appears to be disparaging a whole group of patients, which I find shocking and irresponsible for someone in your position.

I wish you sincerely all the best in your continued recovery and retention of health and vitality.

Joan Crawford

Chartered Counselling Psychologist

 

Medicine can only use anecdote as a starting point for further investigation. In the 70s anecdote suggested strongly that plentiful vitamin C in pregnancy prevented spina bifida. The results were so obvious that it was considered unethical to run a proper RCT.

The controversy carried on for a long time until it was finally done. Then it was discovered that it was not vit C but folic acid and women thinking of becoming pregnant were encouraged to take supplements.

 

Thanks so much for your excellent response, @Joan Crawford!

 

-> https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/#comment-5242667119

-> https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/#comment-5242526040

 

Opps

 

Well, having read the latest from PG in BMJ I've finally decided my opinion. Not particularly illuminating perhaps but I find the whole saga so far to be Opera.

And as they say in baseball (referring to opera) It ain't over til the fat lady sings.

Gazing into my crystal ball I vaguely can make out something shiny. Wait . . . is that a sword & a knighthood I see for PG?

None of us is going anywhere so I guess we'll stay tuned.

E: typo

 

Thank You