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

To be fair, initially lots of people in the early days do a boom of activity. Garner mentioned it too, went running, did some yoga. I've seen dozens of accounts of the same, people going for a run or bicycle ride and crashing.

Eventually people learn not to boom anymore but early on it's basically the mistake everyone makes. It's the only time this language is relevant, but I think it's appropriate here.

 

I agree, but he's both very unwell and on one heck of a learning curve.

It probably took me three or four years after diagnosis to begin to frame my views and feelings about ME in language that was both reasonably accurate and appropriate, and by that time I'd actually been ill for more than two decades. Of course I'm not a doctor either, but language is always slippery. When you first try to find ways to describe the experience you're living, you tend to jump on words that you think will make sense to you and to other people. Only later, when you've fleshed out what you're trying to communicate, are you able to assess the language for value judgements and social/political framing.

I've been ill now for 44 years, and I'm still editing the language I use about ME...

 

For sure he is still on a learning curve so shouldn't be expected to have everything figured out, I had assumed that he was just relaying back what his physiotherapist had told him so that was the direction my criticism was intended. If that is what the professional physio who takes ME patients said then they should know better.

 

Short interview on CNN with Paul Garner and one of the authors of the Body Politic report.

The forum is trying to embed the video but it's not working so I have to put this here:

Code:

https://www.cnn.com/videos/health/2020/06/23/coronavirus-symptoms-long-haulers-newday-vpx.cnn/video/playlists/coronavirus/

A bit short on details but this is the first high-profile media coverage I have seen so far. I think it's cut short here, though, there seems to be more.

Although Garner says there is nothing like it. Not quite. It's odd seeing the shock from the anchor about 99 days of this. I wonder how people will react to millions who have faced the same for decades only to be insulted and ostracized for it.

 

My impression is that he should not be on a learning curve. He is right in the middle of Cochrane and should be very aware of the problems with the GET review. If he is not then Cochrane's claim to quality control and internal audit is a joke. Not his fault, maybe, but shouldn't he be aware? Shouldn't he be aware, as an intelligent physician, that 'going to protective mode' is drivel? There may be an element of physician heal thyself coming on here.

 

I just feel sympathy for someone who, after 14 weeks or so, regards that as a long haul. There is still much to experience.

 

I communicated over and over with any individual I thought might listen to me in Cochrane about the problems with the Exercise review when I wasn't getting anywhere with complaining to Central Editorial Group. I tried many many people. Plus the membership of the many committees and executives, The Governing Board, the Cochrane Council, the Cochrane Library Oversight Committee, the Cochrane Consumer Executive (ie. the people representing patients within Cochrane!), the "Cochrane for Change" group who formed in 2018 in protest when Peter Gotszche got chucked out of Cochrane. No one individual within Cochrane would openly support me in challenging what had happened with this review. It was disappointing, but understandable. I am sure the Cochrane leadership would have made things very difficult for anyone who had done so. Even Paul Garner (I may even have tried him...can't remember)

 

The clip ends with Garner saying "it's quite a terrifying experience".

 

He mentions at the end of the article Anna Bulley, who is a specialist physio in rehabilitation and chronic illness. Although she advises rest, the fact the word “rehab” is in her title, suggests that if she were to follow a rehab approach to ME as well, then she is following the usual quota based physio therapy, with perhaps rest balanced with increasing activity, contrasted to the symptom contingent pacing (not increases in graded activity), physio therapy that PhysiosForME advocate. https://www.physiosforme.com/physio-management

 

Let's not go hard on newly ill patients. They're still learning what their illness is like and they may struggling to even accept it as it is.

 

The Times has reported on Prof Garner’s BMJ blog in today’s paper:
https://www.thetimes.co.uk/edition/...=Social&utm_source=Twitter#Echobox=1593067064



https://twitter.com/user/status/1276086413247873024

 

Based on extensive experience gained from dealing with the highly trained and medically qualified employees of the NHS over 34 years, it sounds like anxiety and depression - a match for symptoms (i.e. go to a GP with those symptoms and they will say anxiety, depression, panic attack).

Go to a neurologist and they will say 'there's nothing I can do for you, have you considered aromatherapy?'

I see no evidence that the front line see's things any differently now.

Paul Garner is after all a patient now, and as such his opinion and experiences count for diddly squat.

 

Because they turned depression and anxiety into catch-all diagnoses, to be given whenever the first round of standard testing doesn't reveal the problem.

If there's any fatigue, it's depression. If there is any autonomic arousal (maybe there is a better term), it's anxiety.

 

@PhysiosforME - another physio possibly needing persuasion to adjust her ‘rehab’ techniques for anyone displaying PEM?

 

He talks about arms and legs "permanently fizzing as if injected with szechuan peppercorns" That deep burning fizzing feeling is what I get when I have done too much - cleaned teeth then tried to getting under covers instead of resting in a heap on the bed first, say.

They seem to be describing what I have experienced since my coxsackieB infection all those years ago, rather than a post viral fatigue I have seen in others. The deep exhausted all the time experience is terrible as well but does not have the strange cocktail of symptoms you get with ME.

Enteroviruses are RNA based as well I wonder if there is some interesting shared biology there.

 

I have a great deal of sympathy for newly ill patients who are not medical doctors, but MDs should know better.

 

I agree doctors should know better. Especially doctors who listen to their patients.

However, from experience of family members with very disabling long term conditions and my own experience it strikes me that while doctors know a lot about certain diseases, physiology and so on, they often know very little about living with a disease.

Some understand this and so are more open to an equal partnership with the patient where the experience of both parties are respected.

The snag is when doctors don't see the gaping hole in their knowledge. This is where they give "off the peg" advice but aren't interested in hearing if it works or not.

it would come as a bit of a shock to suddenly find yourself as a patient on the receiving end.

This is just a general observation by the way - not directed at Paul Garner as I don't know enough about him or his situation & don't want to be unfair to him.

 

Incredible coverage from The Times. I would REALLY like to know the story of how this came about.

I don't know about you, but my perception of time is very tenuous. Things that happened last week are hard to distinguish from things that happened 2 years ago. So it's often difficult for me to appreciate the significance of things that have just happened, it takes a while to absorb.

But this is very significant. The curve of disinformation is being crushed.

 

Another excellent article from prof. Paul Garner. Might deserve its own thread, but I was unsure where to put it.

BMJ Paul Garner on long haul covid 19 - Don't try to dominate this virus, accommodate it

I was desperate, tired, grumpy. I wanted someone to help me pace and thought occupational health could refer me to a specialist service. Instead, I was told I needed a course of cognitive behaviour therapy (CBT).

Did I? I turned to Cochrane, the first stop for reliable current medical thinking and evidence. “CBT facilitates the identification of unhelpful, anxiety‐provoking thoughts, and challenges these negative automatic thoughts and dysfunctional underlying assumptions”. Crickey, I thought. Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “exercise as treatment for chronic fatigue:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated).

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area.