Dr Sarah Myhill on The ME Show (series 2, episode 6)

Lucibee

Lucibee

Senior Member (Voting Rights)
I found this episode very interesting, but I was quite concerned by some of the things that Sarah Myhill was saying. So I've started a new thread here (with a link back to main thread). Hope that's OK.

I don't doubt her passion, and it seems clear that she has helped a lot of people with their conditions, but her approach is highly unorthodox - so I'm not surprised that she has met with resistance from the GMC and others.

The first thing that struck me was her definitions of ME and CFS, and how she seems to be treating 'chronic fatigue' primarily.

Gary asked her what she actually does, and this was her reply:
I think that the only thing I do that’s different is that I ask the right questions.

I mean the point here is that chronic fatigue syndrome and ME are not diagnoses. They are clinical pictures, and we have to ask the question why.

Now, chronic fatigue syndrome – pure chronic fatigue syndrome – is the clinical picture we see when energy delivery mechanisms are impaired.

ME is the clinical picture we see when we have chronic fatigue syndrome, ie poor energy delivery mechanisms, and inflammation. And that inflammation can be there for reasons of allergy, for reasons of chronic infection, or for reasons of autoimmunity.

So with that “road map” as I call it, we can start to look at the different symptoms, try and explain which mechanism applies to which symptom.

Because if you can work out the mechanism of why things are happening, then that has obvious implications for treatment.
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(I'll paraphrase from here on)
She then talks about finding root causes. How you "don't need an expensive doctor" or expensive tests - just a basic package as a starting point, as "the basic starting point for treating all cases of chronic fatigue syndrome and all cases of ME, and indeed for preventing heart disease, cancer and dementia, is exactly the same."

This basic package seems to be about learning to pace effectively - so that's all well and good. But then it moves onto the car analogy and the idea that we are using the wrong fuel, and how that is causing all Western ills.
First of all, you’ve got to have the right fuel in the tank. Then you’ve got to have your engine working well. Then you have to have the accelerator pedal set correctly. And the adrenal box working as well. And the product of all those interventions is the core temperature. So by measuring core temperature, it gives a very good handle on energy delivery mechanisms.
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This next bit bothered me:
Now, with respect to the fuel in the tank, the human body, in fact all mammal bodies, from horses and cats to dogs and whatever, all human bodies, all mammal bodies function best when they are running on fat and ketones. And fat and ketones are the evolutionary correct diet. Or the evolutionary correct fuel, rather.

Now, part of the reason why we are seeing epidemics of chronic fatigue syndrome is because we have been given nonsensical and evolutionary incorrect advice that carbohydrates are in some way good for us.

Now carbohydrates are a very useful evolutionary tool because they allow us to get fat in autumn. What happens in autumn? We have a carbohydrate bonanza. We have fruit, we have root vegetables, we have pulses, we have grains. We eat them in an addictive way and that gets us fat. And that is survival value for the winter.

So, in short, sharp bursts, metabolic syndrome, running the body on carbohydrates is very helpful for survival.

Of course, primitive man stopped eating carbohydrates because he had to. The autumn harvest dried up, he’s into winter, he’s back into hunting mode.

But in order to make us eat those foods, nature had to get us addicted to them, and carbohydrates are very addictive. Sugar is one of the worst addictions that I see.

And because we are now clever, because we have evolved fantastic, incredibly complex and brilliant systems of agriculture, we can eat carbohydrates all year round because we can, and we do, and to my mind that is a major driver of chronic fatigue syndrome, because we are – it’s a little bit like we are putting petrol in a diesel car. It’ll chug over for a bit, but it will break down eventually.

So the starting point is a paleo-ketogenic diet.
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(This post is now getting a bit long, so I'm going to break here.)
 
I can't really continue without wanting to quote the whole thing!

I think the main issue is the oversimplification of everything - her approach seems a bit one-size-fits-all.

Also, she seems to get some details wrong, like this bit about the PACE trial reanalysis:
So, a Freedom of Information Act search was conducted in order to get the raw data so that we could look at actually how that study was done and how those figures were number-crunched. And at the end of a very long analysis, that was primarily done by Dr Keith Geraghty, and then this was distributed to other academic centres who were allowed to pass judgment on this - and all those - there were 40 different centres involved, who were looking at a critique of this study, and their results were published in the Journal of Health Psychology in August 2017, and essentially the result of that was: this is a fraudulent study.
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Amw66 said:
She does have a point: insulin resistance is being found to underlie a number of chronic illnesses.
If we have an issue with glycolysis then carbs will make it worse.
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"is being found" is a bit strong.

There are papers out there hypothesising the existence of "diseases of civilisation", but I'm not convinced there is much evidence yet. And when there is, we'll just be back to the "eat healthily and do lots of exercise" mantra.
 
I had a listen this morning. I think she means well but is overly dogmatic.

Anyway, I just wanted to pick up on one or two things. One was where she was taking about Norman Booth, co-author on her mitochondria papers, she seemed to be speaking about him in the present tense but, sadly, he passed away last year. I'm sure she must know, but she didn't make any reference to it.

The other thing was where she states her opinion on PACE, she goes beyond scientific criticism and openly accuses them of fraud. That's interesting, perhaps that's why Prof Sharpe was baiting critics with this choice of word on Twitter, in an attempt to have them deny identifying with this allegation.
 
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Lucibee said:
Also, she seems to get some details wrong, like this bit about the PACE trial reanalysis:
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I noticed this in a video she did that I watched a year or so ago. It was embarrassingly full of misinformation about PACE which was concerning in particular because she is trying to challenge the PACE authors with the GMC. If she presents a case that is full of inaccuracies to the GMC, it will fail and give the PACE authors greater strength. The exact opposite of what she is trying to do. That's why I don't sign her petitions.
 
Has anyone read the series of three papers she put out (which she talks about in the podcast)? I don't want to judge a book by its cover, but they look very amateurish. The latest news is that they have a new paper ready to submit, and are 'finding an appropriate journal' which is probably by necessity rather than by choice!
 
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I'm encouraged by the scepticism shown in this thread.

Given what he says and her record with the GMC, she is not exactly my first choice as a medical professional speaking about ME.

She likes to say all patients need to do is follow her protocol and all will be well. Like the Lightning Process if nothing happens it's the fault of the patient. :(
 
I very much respect her for actually taking pwME/CFS/whatever seriously and treating them with compassion & giving genuine support. I dont doubt that she has some good ideas and has helped many people accordingto their own enthusiastic testimony.

However when i had a consult with her (over a decade ago so her approach wasnt nearly as developed as it is now) I didnt take to her personally as she was rather "i'm the boss' in attitude, giving 'doctor's orders'. Now i appreciate that many people like this in a doctor, but i dont. And after following her initial advice & had no improvement, & finding some of what she said to be inappropriate for me, and cringing when i read the copy of the very patronising & tutorial letter she sent to my GP - if i'd have been him I'd have been really pissed off by it - it read like she was educating a 15yr old (lol it's true that most GPs are less knowledgeable than many 8yr ols about ME/CFS, but there is a way to address one's colleagues!) & it was lucky for me that i had an understanding GP at the time.... all that meant I didnt continue with her.

And since then i have become more & more concerned about the way she presents her (possibly well founded & insightful but not scientifically proven) ideas as absolute fact, & as @Trish mentioned (i think i must have watched the same video) she doesn't get her facts right re PACE.

I have a problem with hypothesis being presented as if it were fact. I have a problem with that no matter what the hypothesis is, so equally from BPSers, the 'woo' brigade, AND biomedical approach people.

And factual inaccuracies about PACE are a gift to the 'abnormal beliefs' brigade.

It's a shame because it seems she has helped a lot of people & I love the way she's not afraid to take on the establishment & speak out for us. But if she would simply present her ideas as part of the discussion, as a theory & an idea rather than as "I know the answer", i think it would be more productive & less risky for pwME in terms of the political fight we're in. If she'd simply preface with 'I believe' that ME=CFS+ inflammation, instead of ME IS CFS+inflammation it'd help.
But as far as i can see a lot of ME docs do present their opinions as if they were proven scientific fact, & not just on the BPS side. So many seem to believe they have 'The answer', & instead of putting their ideas forward as a possible, they present them as if they were proven fact. It's a shame.

I think it's good that @Gary Burgess is covering diverse people & topics, but I feel Dr Myhill is a bit of a loose cannon sometimes.

I do wish her well though. When i spoke to her she was the first Dr in 4 yrs that i'd spoken to who actually spoke to me as if i were actually suffering, rather than simply making a fuss over nothing. I remember the tears of relief. Kudos for that.

Isnt it telling that i think that deserves kudos.... surely that's the minimum any patient should expect from any Dr... surely thats simply them doing their job?
 
Lacey Diamond said:
Why don't you let her know about the inaccuracies concerning PACE? What are they ?
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There are a number of articles in the science library on PACE. And much of David Tuller's work on the Virology blog is about the problems with PACE.

https://www.s4me.info/threads/articles-that-are-critical-of-cbt-get.63/

http://www.virology.ws/mecfs/

ETA: also the general PACE thread would have lots of info on PACE methodological errors: https://www.s4me.info/threads/a-general-thread-on-the-pace-trial.807/

and Graham has some excellent videos that explain problems: https://www.s4me.info/threads/video-the-pace-trial-a-short-explanation-graham-mcphee.4669/
 
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