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

Is Cochrane actually answerable to anyone?

 

Yea, you're supposed to read from a large dataset to (help) interpret the specific --- not the reverse! You would have thought that would have occurred to Paul Garner!

 

Possibly another question - are the users of Cochrane actually answerable to anyone?

After all if you base your decisions on unreliable data then you should be answerable for that!

 

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.

 

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BS5750 has long since been superseded by various other standards.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....

 

Yes and clearly being regularly updated unlike the Cochrane central database with regards to ME/CFS research.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

Sounds like what is wrong with traffic engineering. No other engineering profession would tolerate such high rates of injury and mortality...

 

Are you questioning the beauty of the emperor's new clothes? That's a paddling.

Cultural pressure is one hell of a drug.

 

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.

 

Responding to a deleted paragraph from another post.

It is perfectly possible to have empathy with a person for one thing but feel contemptuous about them for another.