What's your opinion of Dr Myhill?

[Laelia]

No one seems to divide opinion more on here than Dr Myhill. Some consider her to be an excellent doctor and ME patient advocate while others believe she is a 'dangerous quack'.

I'm setting up this thread in an attempt to keep the discussion about Dr Myhill separate from the "What constitutes reliable evidence" thread.

Feel free to use this space to air your opinion about all things Dr Myhill and to debate the pros and cons of her approach.

 

[Dechi]

I'll be watching, I am curious. I don't have an opinion of her, don't know her well enough. I know her followers have a facebook page though.

 

[echobravo]

She seems unconventional - not afraid to experiment and always willing to learn (and review). She has gathered an extended set of strategies to treat ME/CFS - as described in the recent 2nd edition of her book (order from her web page). Some interventions, like IV MgSO4 and IV Methylcobalamin, are not easily available in my country. Her focus is on fixing a fermenting gut through diet, reducing inflammation of all kinds, using supplements/minerals/vitamins to increase mitochondria energy production (B12, B3, Carnitine, CoQ10, Ribose, Mg, Zn, Se, Mn). She seems to have little focus on genetics.

It is quite involved to try to put it all together on your own. To help you with that, she sells misc supplements on her web site - a mineral mix, transdermal b12 ++ - it all seems reasonably priced (at least compared to cost of supps in Norway. I am just getting started.

Hopefully some of her patients will give their opinion.

 

[Esther12]

I've not looked at anything from her for about fives years. My opinion then was 1) some of the claims she made were inaccurate, although the clear inaccuracies were often unrelated to ME/CFS 2) a lot of her claims were stated much more confidently than they should have been considering the evidence available. She would make all sorts of claims about how ME/CFS patients should be doing all manner of burdensome things, without having any good evidence of benefit. Some of her recomendations didn't seem to make sense. I don't like doctors like that.

I don't like being told to spend my time on things that don't have any real evidence of value, and I think it led to a lot of patients wasting their time on things. Having said that, I also thought that there was advice on her website that was better than a lot of the advice coming from the NHS, and so I can see that some people would have found her helpful. Also, some patients dislike all the uncertainty around ME/CFS and can prefer to be confidently told what to do, even if some of it is BS.

I didn't think that the mitchondria papers she was involved in were very good.

 

[Valentijn]

Having said that, I also thought that there was advice on her website that was better than a lot of the advice coming from the NHS, and so I can see that some people would have found her helpful.

Good point. I'd definitely rate her "Better Than NICE", even if she's sometimes not up to the standards of good scientific practice.

 

[skipskip30]

I don't like being told to spend my time on things that don't have any real evidence of value, and I think it led to a lot of patients wasting their time on things. Having said that, I also thought that there was advice on her website that was better than a lot of the advice coming from the NHS, and so I can see that some people would have found her helpful. Also, some patients dislike all the uncertainty around ME/CFS and can prefer to be confidently told what to do, even if some of it is BS.

I agree about some of the stuff she recommends not having any evidence or value, thats the reason (along with lack of funds) that I wouldn't go back to see her again having tried her full protocol around 10 years ago with no benefit.

That being said, I know of three people personally that have been helped by her and in a world of very little help beyond being tested for other missed conditions (if you are lucky enough to find a consultant willing to do so) I think its worth people judging for themselves.

 

[Alvin2]

I've heard of her and tried to read her ideas (i'm having trouble understanding her ideas becasue of my mental difficulties these days).
Not sure how much i believe her theories but they certainly are interesting, more research is required IMO (also i need more brain power to analyze and form an opinion).
That said once we get the disease mechanism from Dr Davis we will be able to analyze Dr Myhill's theories in detail and perhaps figure out how accurate they are/aren't.

 

[AdamS]

I spent about £500-£1000 on supplements/food based on her protocol and followed it super strictly for about 8 weeks. It mainly consisted of a Stoneage diet and things like D-Ribose, EPA fish oil, L-Carnitine, Glutathione, Methyl B12, SODase, Magnesium and Ubiquinol Q10 etc. I wouldn't say it was completely pointless as it did help with my acid reflux and stomach ache a bit but it didn't improve my level of functioning or put me on the way to recovery from ME.

I do actually admire her work and her attempts to help people with ME through the info provided on her site, her focus on Mitochondria seems logical but for some reason it just didn't work for me. I guess some respond and many don't with this horrible illness!

 

[Hip]

I didn't think that the mitchondria papers she was involved in were very good.

In what way no good? As far as I am aware, they were the first to demonstrate an energy metabolism dysfunction in ME/CFS, and were ahead of the game, as their first paper was published in 2009, some 7 years before the current rash of energy metabolism studies and research from Robert Naviaux et al, Fluge and Mella, and Ron Davis.

 

[Skippa]

Some of her writing seems to fit so perfectly, I think "aha that sounds exactly like what is going on..."

Then I think "how does she know?" With no actual ongoing testing, double blind blah blah blah, it seems like a lot of gusswork (sometimes good/inspired guesswork)... but no actual hard proof, just anecdotal success stories...

 

[ChrisD]

I am a newbie but I think she is a master, all of her observations mirror experiences of friends and family. I have roughly followed her protocol and have seen some small improvements.

Also, thought leaders in Health and nutrition are now thinking and speaking along the same lines, for example in this recent video for Bulletproof by Dave Asprey, they quote ''Mitochondria not Hypochondria''

 

[Esther12]

In what way no good? As far as I am aware, they were the first to demonstrate an energy metabolism dysfunction in ME/CFS, and were ahead of the game, as their first paper was published in 2009, some 7 years before the current rash of energy metabolism studies and research from Robert Naviaux et al, Fluge and Mella, and Ron Davis.

I've not read it in years, but wasn't it nonblinded, using unvalidated testing, and really just useless?

 

[svetoslav80]

I don't take her seriously since I read this sentence on her website "So the perfect pick-me-up for CFS sufferers could be a real black organic coffee with a teaspoon of D-ribose!"

 

[Basilico]

I have never had an appointment with her, but several years ago, I was reading some of the work she published, and it seemed logical, so I bought the supplements she was suggesting and...nothing. No change whatsoever.

I don't doubt that she has helped some people, and the more doctors we can get involved with CFS, the better. However, I have a feeling she's like most of the other "CFS specialists" who talk a good game and what they say looks good on paper but then doesn't produce results in the real world.

 

[Hip]

I've not read it in years, but wasn't it nonblinded, using unvalidated testing, and really just useless?

That sounds a vague criticism, to say something is "useless". It does not explain why you are criticizing.

When you are testing the cells of ME/CFS patients in order to discover where the blockages in energy metabolism lies, you don't need any blinding. The key findings of the Myhill, Booth and McLaren-Howard papers are the blockages in mitochondrial functioning in ME/CFS patients cells.

The studies are currently being validated by another group.

 

[Esther12]

That sounds a vague criticism, to say something is "useless". It does not explain why you are criticizing.

When you are testing the cells of ME/CFS patients in order to discover where the blockages in energy metabolism lies, you don't need any blinding. The key findings of the Myhill, Booth and McLaren-Howard papers are the blockages in mitochondrial functioning in ME/CFS patients cells.

The studies are currently being validated by another group.

If you're using unvalidated testing, and no blinding, there's no good reason to think that any results provide any useful information about the cause of ME/CFS. I'm not that interested in the details if they don't get the basics right. Maybe they will go on to be validated, but I'm not holding out much hope.

 

[TigerLilea]

I read sections of her book many years ago and it seemed to me that it was a lot of unproven theories. I have yet to hear of anyone getting better following her protocol.

 

[Hip]

@Esther12 If you are pioneering a new test to measure parameters not before measured, obviously it takes time and money to get it fully validated, and to get your results replicated. Things are done in stages, and you need to take the first steps. You seem to be suggesting that anyone who takes the first step is in your definition useless. By that token, we would call Fleming's initial discovery of penicillin as "useless".

We can say that the Myhill, Booth and McLaren-Howard results are provisional until such time as they can be replicated and validated; but that's not the same as calling them useless.

 

[Esther12]

@Esther12 If you are pioneering a new test to measure parameters not before measured, obviously it takes time and money to get it fully validated, and to get your results replicated. Things are done in stages, and you need to take the first steps. You seem to be suggesting that anyone who takes the first step is in your definition useless. By that token, we would call Fleming's initial discovery of penicillin as "useless".

We can say that the Myhill, Booth and McLaren-Howard results are provisional until such time as they can be replicated and validated; but that's not the same as calling them useless.

Testing samples from CFS patients and healthy controls under blinded conditions is a pretty simple first step for a study due to be published.

 

[Hip]

Testing samples from CFS patients and healthy controls under blinded conditions is a pretty simple first step for a study due to be published.

Can you explain why you think it necessary to test blood samples under blinded conditions? When you are testing a treatment on patients, then yes blinded or double-blinded conditions are required, to eliminate the placebo effect.

But testing blood samples of patients and healthy controls does not in any way involve the placebo effect. I don't think the Fluge and Mella study on ME/CFS energy metabolism used blinded blood samples, nor the Robert Naviaux et al energy metabolism study.