United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

Perhaps he's worried he wont be able to prescribe his 5 portions of fun a day anymore:

https://www.s4me.info/threads/covid-19-psychological-research-and-treatment.14419/page-6#post-266728

 

If there was evidence that GET and CBT worked I’d be first in line to get it. I have separate mental health issues, there’s no stigma for me. I’ve done CBT and other therapies for that.

The idea that we are just turning down help because it doesn’t fit our worldview is so insulting. People have been willing to spend tens of thousands, take potentially deadly drugs, have spinal surgery and many other extreme measures. They shouldn’t do those either because the evidence also isn’t there but it shows the lengths people will go to.

The issue is that their own evidence shows GET doesn’t work.

 

But maybe he thinks he is ...

 

“The issue is that their own evidence shows GET doesn’t work.”

Indeed worth repeating many times over.

 

Oh hell no, we don't need that. We need to find what is common, even if only to some, ideally stratify. Otherwise it rests on clinical judgment and that's the last thing we need.

 

In a tweet he explicitly stated he hasn't seen any himself. Which may be true, that he didn't see them, in the sense that he didn't recognize it. I believe him on that. Very likely those who did simply did not go back. As we know these clinics are basically the polar opposite of rigorous and cannot assess anything.

Which makes the main point: that clinical judgment is too unreliable here. Even those who do set their eyes on it do not recognize what's happening, which is normal, as disappointing as it may be humans don't have magical abilities to evaluate reality without technology or instruments.

Although his comment that he expected NICE to review the evidence on tests was frankly bizarre, it was never part of their remit, it would be basic science anyway and there obviously hasn't been any because of lack of funds and resources.

The intersection of well-meaning but misguided is very accident-prone, a true ethical blind spot.

 

He has just been talking about this on twitter - he was mentioning LP & Perrin in a tweet. His twitter feed is infuriating today. It is a disgrace. I am afraid I do not think he is operating in good faith at all.

 

Was it sauté brain this time @Trish - you really should be careful of these moderators.

 

Says everything about this being a solution in search of a problem. What ever gave this guy the notion that he knows what he's talking about? Beneath the words he seems as misguided as Wessely, frankly. When you peel back the hollow message, the substance is just as terrible.

He clearly doesn't understand that exercise is then at the expense of everyday things, that increased activity is the default behavior for almost everyone as soon as they can. Hardly anyone needs a coach to get moving after they are ill, the whole premise is absurd. This is Being There medicine, exactly as useful as a sock potato is at... how do they say it... leeching off toxins? Or whatever.


Edit: added another tweet, he clearly has no clue about ME/CFS, wow, even worse than I thought.

 

Probably not on point for anything, just idle musing.

Here's the scenario I picture when I read PH et al respond to challenges to their world view.

They would like for things to remain the same or even better go back to how things were (when they felt unchallenged). Going into the office every day with a smile on their face knowing that they are respected. They can be assured of a future of prestige, power influence and financial security. Life is good.

Children will draw pictures of them as super-heroes that they can pin up in their office. Families will send Christmas cards. Hugs of gratitude will be the norm.

Challenging all of this is like cornering them in a dark alley and you might have a weapon. Why would you do this? Anxiety rises to the surface. CBT/GET are at real risk. This anxiety is uncomfortable and it needs to go away. In order to maintain control and keep the good times flowing the mind races to every conceivable possibility that can be utilised as a treatment while keeping the delivery of that tx in their own hands.

Allowing the idea that medicine might have something to offer should bio research be done is unthinkable. The idea that what they are currently doing for ill people is not science is unthinkable.

Anything goes when it's personalised. It's a great idea as it sounds so caring. And it's difficult to challenge as it's difficult to measure for scientific scrutiny. Some anxiety subsides. Yet their is no awareness of any emotional connection to what is happening only rationalisation that all is scientific enough to be clinically useful.

Yet as it has been pointed out the idea of personalised medicine as they call it is just a cover for keeping things as they have always been and is to keep patient care in the 19th century.

Just my own musing on how a status quo being challenged can play out.

 

This is the point surely, though Hammond seems to miss it entirely. If you cannot distinguish between those who will be harmed by your interventions and those who will not, how can you possibly deem it ethical to use a scatter gun approach to all?

 

He seems to not care and is making comments that he wants a NICE "mandated" test to distinguish between such patients.
He cannot possibly be this uninformed and it seems like a political agenda to me.

 

This seems to be the latest report on the Bath approach to paediatric 'CFS/ME' (2017):

https://www.paediatricsandchildhealthjournal.co.uk/article/S1751-7222(17)30123-3/fulltext

Author manuscript available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939995/ thanks to @Dx Revision Watch for the link (I used Sci-hub)

 

How many patients say they have done the activities prescribed when they have not (because they can't or because it makes them feel worse), and say they feel better when they do not?