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

Trish said:
I have no problem with an individual reflecting on their journey through a nasty post viral experience and writing about it in a personal capacity.

The part I think is unacceptable is combining that with his professorial status and using that to push a particular point of view that may harm others. And Cochrane and the BMJ endorsing it.
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I'm in agreement with you here, I'm just explaining why I think his behavior makes sense, and why we should have empathy for him.
 
FMMM1 said:
After all if you base your decisions on unreliable data then you should be answerable for that!
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You would think so but not necessarily. If the system you work within states that's a legitimate source of reference material then you're covered.

Anyone remember when BS5750 became a big thing? It was supposed to be a quality standard and if you were BS5750 compliant then that was a selling point.

I somehow managed to end up with the task of writing up the procedures for our section of engineers. I agreed to it because I thought it meant we could look at how we worked and see what we could do better, more efficiently etc.

Nope. All they wanted was procedures to be documented. Then we each had to have access to the material for reference. So we all had to carry a great big folder around in the boot of our cars. Long time ago before t'interweb.

We didn't have to know or understand the procedure, just demonstrate that we could look it up on the spot. The documented procedure didn't even need to be particularly good or efficient. It just needed to be documented.

Of course, someone will then go and assume what's documented is best practice, or is 100% accurate or whatever. Isn't always the case.

BS5750 has long since been superseded by various other standards. I would hope they are better but....
 
Trish said:
Blimey that's a very long list. It astonishes me that Cochrane would provide publicity for a self publicist touting his n = 1 ancedote around the world so prolifically, even if he is a senior Cochrane editor. Eminence based medicine seems to have taken over Cochrane.
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Yes and clearly being regularly updated unlike the Cochrane central database with regards to ME/CFS research.
 
Invisible Woman said:
You would think so but not necessarily. If the system you work within states that's a legitimate source of reference material then you're covered.

Anyone remember when BS5750 became a big thing? It was supposed to be a quality standard and if you were BS5750 compliant then that was a selling point.
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Yes but not with the BS number I always thought of it as ISO9000 (or TQM) and some of the good parts have become standard practice in terms of applying a process and making sure things are reproducable etc. In my world (of IT security) there are a whole set of standards for code production to help it become secure (or at least less bug free) and lots of that follows the same basic ideas. Microsoft pushed a lot for the creation of such practices as they were doing such a bad job.


Invisible Woman said:
I somehow managed to end up with the task of writing up the procedures for our section of engineers. I agreed to it because I thought it meant we could look at how we worked and see what we could do better, more efficiently etc.

Nope. All they wanted was procedures to be documented. Then we each had to have access to the material for reference. So we all had to carry a great big folder around in the boot of our cars. Long time ago before t'interweb.
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The notion in ISO 9000 is around continual improvement so that once the way you do things is documented then you can start to improve. But I think that rarely happens unless something goes really wrong.

Invisible Woman said:
We didn't have to know or understand the procedure, just demonstrate that we could look it up on the spot. The documented procedure didn't even need to be particularly good or efficient. It just needed to be documented.

Of course, someone will then go and assume what's documented is best practice, or is 100% accurate or whatever. Isn't always the case.

BS5750 has long since been superseded by various other standards. I would hope they are better but....
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The way I see Cochrane is they kind of have a methodology but how they deal within seems entirely random and dependant on the skill and prejudice of those involved. Which then becomes an issue. As you say documenting such processes may help meet a standard but doesn't help achieve quality - for that you need good processes and procedures. Ones that are reviewed, checked for how they deal with identified risks etc. That tends to happen more these days (or that is the impression I get)
 
petrichor said:
Unfortunately, when he recovered, he was following the advice of some Norwegians with particular views, and not the ME community, so they get the credit for curing him.
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To me it looks as though he was well on his way to recovery when he was captured by the Norwegians with particular views.

petrichor said:
Besides that, I think people should have and show empathy for him. His behavior does clearly demonstrate how difficult post-viral conditions can be, and he's gone through an unpleasant experience which has some resemblance to what most people in this forum have gone through, which most people don't go through.
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How would you have us demonstrate our empathy for Paul Garner?

Paul Garner was uniquely well placed to make a positive difference to people with ME/CFS. He's benefited from years of education. He has professional roles as a Professor of Infectious Diseases; roles in Cochrane related to infectious diseases and evidence-based medicine. He is comfortably well-off. I think he has a close relative with ME/CFS; he had a small taste of how awful post-viral fatigue syndrome can be; people with much experience with ME/CFS reached out to him to help him and support him. He recovered, so has the energy to advocate. He could have been an enormous force for good.

Or, he could have just kept quiet and planned his next overseas holiday. Either would have been fine.

Instead, he chose to add to the stigma, propping up pseudoscience and suggesting that people can overcome post-viral fatigue syndrome with willpower and moral fortitude. He has used his platform and his connections to make it more difficult to get the research we need done, and it doesn't look like he's going to stop doing it anytime soon.

There are people who develop ME/CFS when they are young, and so never get to experience so many of the joys of life. There are the people who developed ME/CFS after Ebola - in countries with no welfare systems, who lost their families to the acute illness, who had their homes and possessions burned by neighbours afraid of Ebola, who now can't work to support themselves. There are people who lie in darkened rooms, with their lives, and those of family members who care for them on hold. All of us who have had our lives turned upside down and have lost so much; and all of the people yet to develop ME/CFS before an effective treatment is found. Those people are a long way further up my list of people worthy of empathy.

Sure, I'll give Paul Garner the respect that any human deserves. And yes, I don't know everything that made him do what he has done. But I'm not going to excuse what he has done, or understand how he keeps on doing it.
 
You can have empathy towards people whilst still aknowledging what they're doing is bad. I'm not excusing what he's doing or suggesting it's okay.

And ME/CFS does ruin people's lives horribly, including people in countries with no welfare systems who got ebola and lost their families to ebola. But society and people in general have no understanding of that and don't think about that. The nature of the condition means that people just don't consider those things, think of the consequences of their actions regarding ME/CFS, or care about or empathise with people with ME/CFS like other conditions. There are probably homeless people with ME/CFS, who spend their entire time lying on the side of a street, people on the brink of starvation with it in developing countries (and developed countries), and many who commit suicide before getting diagnosed. There's a lot of horrible things about ME/CFS which people just don't think about.

I don't think that changes that you can have some empathy towards Paul Garner though. The lack of empathy and consideration for people with ME/CFS in his actions is more of a reflection of the status quo than that he's a bad person undeserving of empathy.
 
Empathy comes from within when we see others suffering. We can't instruct others to have empathy for someone. I felt some empathy for Garner when he wrote about his suffering while he was experiencing post covid symptoms, no more nor less than the empathy I feel for anyone else suffering similarly, and who I don't know personally. People with ME reached out to him and offered him lots of empathy and support, as did his support group of long Covid sufferers.

However, he is now, in his own words, fully recovered and able to live a full and very active life. Moreover he is now acting in a way towards others still suffering with ME and/or long Covid that is no less than gaslighting, and using his status to do so. Why would anyone expect me to go on feeling empathy for someone doing that?
 
Trish said:
However, he is now, in his own words, fully recovered and able to live a full and very active life. Moreover he is now acting in a way towards others still suffering with ME and/or long Covid that is no less than gaslighting, and using his status to do so. Why would anyone expect me to go on feeling empathy for someone doing that?
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When I say empathy I guess I mean empathy for what he's been through, and having some understanding for the context in which he's acting this way, which is partially a result of what he's been through.
 
Invisible Woman said:
You would think so but not necessarily. If the system you work within states that's a legitimate source of reference material then you're covered.

Anyone remember when BS5750 became a big thing? It was supposed to be a quality standard and if you were BS5750 compliant then that was a selling point.

I somehow managed to end up with the task of writing up the procedures for our section of engineers. I agreed to it because I thought it meant we could look at how we worked and see what we could do better, more efficiently etc.

Nope. All they wanted was procedures to be documented. Then we each had to have access to the material for reference. So we all had to carry a great big folder around in the boot of our cars. Long time ago before t'interweb.

We didn't have to know or understand the procedure, just demonstrate that we could look it up on the spot. The documented procedure didn't even need to be particularly good or efficient. It just needed to be documented.

Of course, someone will then go and assume what's documented is best practice, or is 100% accurate or whatever. Isn't always the case.

BS5750 has long since been superseded by various other standards. I would hope they are better but....
Click to expand...

Since I don't follow this closely I'm really just guessing here. The NICE review has uncovered a pile of poo - poor quality psychological and/or exercise studies which are unblinded an have subjective outcomes. On the face of it the next step is easy --- NICE works on the basis of evidence so all of these studies have been downgraded and they cannot be included in the revised guidance. However, the "other" factors kick in --- vested interests (folks who benefit from flawed strategies), politicians (who haven't a clue/don't care) supporting the vested interests---.

One big push to get this right --- NICE's raison d'être is to assess the evidence and act on that; if they surrender on that, then they've removed the basis for their existence. I suspect that's why @Jonathan Edwards found himself being grilled by competent people, when he gave evidence to the review team - NICE wants to get back on track.

Some of the other stuff is just surreal @Caroline Struthers seems to have been told that the "user friendly" version of the NICE guidance doesn't have to align with/reflect the actual guidance.

I'm grateful to the folks who are challenging this crap --- the system needs that challenge.

EDIT - I think one of the things we can do is highlight that the real victims here are people who have lost their healthy lives - not those who are winging about loosing the pay check for treatments that don't work/research that doesn't deliver. That way we highlight, to the uninformed/uncaring politicians, that they should support us not the folks who are winging about supporting flawed psychological/exercise treatments.
 
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The other problem is the way the "system" works.

New guidelines aside -

NICE makes recommendations but allows caveat that practitioner has to use their judgement (not in itself unreasonable)

Practitioner applies guidelines incorrectly (such as prescribing or referring a severe ME patient for GET)

Patient gets hurt.

It's extremely difficult & stressful to make a complaint and the PALS (support group for patients isn't very helpful).

NICE don't take responsibility they just make recommendations and the practitioner uses their judgement. The practitioner doesn't take responsibility because he was following "best practice" / the guidelines / what is considered gold standard & of course can point to the likes of the Cochrane exercise review to make their case.

The renaming of one size fits very few treatment allows it to carry on. Instead of being open about the standard treatment people get they say it is individualised so that exercise or activity increments are based on the individual - but that was always the case with GET. A % increase based on what the individual could do.

While ever shifting terminology and the sly adoption of and reinterpretion of terms patients use is allowed to continue we have to make sure that gains made by the people who have worked so hard on our behalf actually make a difference where the patient meets the healthcare professional.

While it remains possible for everybody to stand around pointing the finger at everyone else to deny responsibility then it will still be possible for patients to face the same problems.

I too am very grateful for all that everyone has done for the community and working on guidelines, dealing with Cochrane and so forth. That is still just one part of the battle, making sure that progress actually results in change for the patient is a battle we will still have to fight.
 
Adrian said:
I always thought of it as ISO9000
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Yes the BS (!) was later replaced by ISO. Documentation should help improve and drive forward quality of procedures where the will to do so exists. Unfortunately, without the desire to continually assess and improve the same documentation can be used to hide behind and duck responsibility. A two edged sword.
 
petrichor said:
When I say empathy I guess I mean empathy for what he's been through, and having some understanding for the context in which he's acting this way, which is partially a result of what he's been through.
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Where is his empathy for patients with ME?

In his role he should understand that most people who become ill with a virus him & develop post viral fatigue syndrome will recover in the first year. The vast majority of people who contract a virus of one form or another do recover - again he knows that.

When it comes to the experience of the majority of patients who filled in at least four different patient surveys indicating that exercise harmed them he dismisses that and instead believes his own personal experience trumps the lived experience of thousands of others.

I feel empathy towards anyone who has suffered & even though I have been ill for decades I clearly remember how hard those first years were. On the other hand I'm afraid I have only contempt for someone who is using their own good fortune to further the suffering of an already vulnerable and neglected patient group. Especially when that someone is in a position, thanks to his training and job, to appreciate that his chances of recovery were always very good - even if it didn't feel like that at the time.
 
Invisible Woman said:
Documentation should help improve and drive forward quality of procedures where the will to do so exists. Unfortunately, without the desire to continually assess and improve the same documentation can be used to hide behind and duck responsibility. A two edged sword.
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Sounds like what is wrong with traffic engineering. No other engineering profession would tolerate such high rates of injury and mortality...
 
re empathy - We can also try to empathise with people who are not facing any particular reason to suffer. We should be able to empathise, to varying degrees, with everyone.

If people only try to empathise with those who seem to be suffering then they're likely to end up with less and less of an understanding of those closer to the top of society, and how their own behaviour will be viewed by those who are not seen as suffering. It's often this group whose judgements hold the most sway.
 
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