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

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'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.

This next bit bothered me:

(This post is now getting a bit long, so I'm going to break here.)

 

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.

 

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:

 

"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.

 

Myhill has a history of making misleading claims. It's unhelpful but I'm not sure that there's much we can do about it.

 

I fear it's just random nonsense. Sort of mitochondriopsychosocial.

 

she has a history of engaging in pseudoscience - anti-vax, pro-homeopathy, etc.

her little equation ME = CFS + Inflammation just has no scientific credibility.

 

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!

 

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?

 

Even more worrying that she seems uninterested in correcting her mistakes.

 

Bit worrying when things like this come up on Google searches

 

Why don't you let her know about the inaccuracies concerning PACE? What are they ?

 

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/

 

I mean her mistakes

 

Apologies for my confusion.

With regard to SM's mistakes I'm not going to go there. Anyone is free to believe whatever she says regarding ME or not.

 

I quoted them here: https://www.s4me.info/threads/dr-sarah-myhill-on-the-me-show-series-2-episode-6.8454/#post-148573

But I think it's up to those namechecked to correct what was said, if they want to or feel that would do any good.