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What's your opinion of Dr Myhill?

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13,774
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.

If it's the developers of a test, that they're selling commercially, doing a paper about their own test, I'd like to see it blinded due to the COIs.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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.

But it involves an equally potent 'results please the researcher if they confirm their theory' effect. With tests on cells that are not automated, done in a research setting like this blinding is a basic essential. It is always easy to cherry pick and allow what one might call 'data drift' for all sorts of reasons. I spent my life in this sort of setting. It was always a constant battle against well-meaning data drifting.
 
Messages
759
Location
Israel
I hate her and always warn others not to see her.

I saw her in 1996 - I am still suffering from the damage she did with her crazy diet (pear and lamb diet, she only later moved to the paleo diet). The EPD injections harmed me.

I also reacted to the Biocare supplements she gives to everyone.

She doesn't bother to weigh you or follow you up after putting you on new diet regimes. So I got into malnutrition.
.
I considered suing her, but was too ill to go through with it at the time.
 
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Wolfiness

Activity Level 0
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482
Location
UK
I think she's a well-meaning but possibly also dangerous crank. She believes in all sorts of fallacious woo, especially toxin woo and natural woo, and I find her embarrassing to the scientific ME effort. I just wish I could stop worrying about the beta-naphthol that her buddy Mclaren-Howard says is stuck to my SOD2 genes given that my SOD2 is also low.
 
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Wolfiness

Activity Level 0
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482
Location
UK
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.

You need to establish this is cause rather than effect of inactivity though. Did she demonstrate no correlation with length of disability as Dr Newton has?
 

Hip

Senior Member
Messages
17,824
But it involves an equally potent 'results please the researcher if they confirm their theory' effect. With tests on cells that are not automated, done in a research setting like this blinding is a basic essential.

Is it usually standard practice then for such samples to be blinded, when a non-automatic process is carried out by one of the researchers?

I just had a look at the first 2009 Myhill, Booth and McLaren-Howard study, and in fact there was partial blinding:
the laboratory carrying out the tests (Biolab Medical Unit, www.biolab.co.uk) was blinded to the Ability associated with any blood sample.
Thus the testing lab was blinded as far as the severity of each ME/CFS patient was concerned. And if you look at figure 4a from that study, you see that there is a correlation between the degree of mitochondrial dysfunction measured in the lab, and the severity of ME/CFS.



You need to establish this is cause rather than effect of inactivity though.

The tests are performed on neutrophil cells taken from the blood of ME/CFS patients, and I think we can probably assume these immune cells will be working just as hard as a healthy person's neutrophils. The test is not performed on ME/CFS patients muscle cells, which might conceivably be underworked in ME/CFS patients.



She believes in all sorts of fallacious woo, especially toxin woo and natural woo, and I find her embarrassing to the scientific ME effort.

I could be wrong, but I don't myself think that Myhill, Booth and McLaren-Howard's ideas of toxins causing mitochondrial blockages in ME/CFS sounds likely. My bet would be on an autoantibody blocking the mitochondria, or some other immunological dysfunction causing an energy metabolism blockage.

Having said that, certain pesticides such as organophosphates and organochlorines have been shown to be linked to ME/CFS, not to mention Gulf War Illness, Parkinson's and others, so in these cases, a toxin connection is certainly not woo.

I personally have found that in treating my own ME/CFS, the sort of experimental open-minded approach that Myhill takes in her ME/CFS treatment — trying all sorts of things including supplements and herbs to see if they help — has led to good results in my case. So I applaud her open minded experimental philosophy.

To me, it is not the specific details of what she may or may not believe or give credence to, but the willingness to try things that counts, whether it is acyclovir or acupuncture. Until such time as a ready-made scientifically-derived treatment solution to ME/CFS is available, I think you are better off with a doctor willing to try things.
 

Wolfiness

Activity Level 0
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482
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UK
Open-minded is good, but you're not a scientist if you miss X because you spent all your time on A-W when a smidgin of discrimination should have told you most of them were nonsense. The Stone Age Eden delusion really bugs me.
 

Hip

Senior Member
Messages
17,824
Open-minded is good, but you're not a scientist if you miss X because you spent all your time on A-W when a smidgin of discrimination should have told you most of them were nonsense.

Can you explain how this discrimination you have in mind works, that allows you to dismiss in advance the things that do not work, in order to focus in on the things that will likely work?

In my case, I tried many hundreds of supplements and drugs, and although most did not help, I made the discovery that high dose selenium created major improvements to my ME/CFS, and that the supplement N-acetyl-glucosamine substantially reduced my severe generalized anxiety disorder. These were both major breakthroughs for me.

But I had to try hundreds of things before I hit on these two successes. What kind of system of discrimination would allow me to shortcut all that random trial and error, and go straight to the things that work? I don't know of any system.

If you read these forums, you find that most people eventually find their own treatments that help them to some degree; sometimes these are relatively standard treatments like low-dose naltrexone, or sometimes something quite unique, as in my use of high does selenium (which did not work for most other ME/CFS patients who tried it).

People need to go through a process of trial and error. I don't know of any system of discrimination that can shortcut this.
 

Wolfiness

Activity Level 0
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482
Location
UK
Can you explain how this discrimination you have in mind works, that allows you to dismiss in advance the things that do not work, in order to focus in on the things that will likely work?

People need to go through a process of trial and error. I don't know of any system of discrimination that can shortcut this.

I'm talking about science-based medicine. She is not a desperate patient quietly experimenting on themselves, she is an eccentric doctor with an open-access website recommending definitely unproven and possibly misguided treatments to masses of desperate people. This thread asked for opinions on her. I think she's unreliable. I do think the MFP is probably legit though.
 
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15,786
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.
It would depend on how automated the results are. If the researcher is looking at a slide or image, to quantify or qualify levels of something, then blinding is a very good idea. If a machine is spitting out numbers, blinding isn't going to help. I'm not clear on how these tests are run, however ... are results produced objectively, or does a researcher subjectively determine the results?

I saw her in 1996 - I am still suffering from the damage she did with her crazy diet (pear and lamb diet, she only later moved to the paleo diet).
Pear and lamb is part of a typical elimination diet, due to the very low likelihood that anyone will have an allergic or other immune reaction to them. It's been around for at least 15 years, and is not an usual thing to try on a short term basis, much less crazy. But it should only be lasting for a week or two, at which point additional foods are re-introduced one at a time to see if there is a reaction.
 

justy

Donate Advocate Demonstrate
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5,524
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U.K
As a former long term patient of Dr Myhill I would like to wade in to the discussion with my thoughts

Firstly, in person she is a VERY compassionate, kind and sincere Dr. She takes a lot of time in face to face appointments and she is on the hunt for clues and is open minded - she is the only Dr to have heard of my history of post-partum haemorrhage and suggested a degree of Sheehan's syndrome in my case. The same with subclinical hypothyroidism. She is happy to prescribe drugs if there is evidence for their use, but wasn't gung ho with them.

She prescribed me B12 injections and they were not expensive and they did help me at the time, but the effect eventually wore off.

Testing: She has a lot of testing available through her website that you can order if you like, or she will suggest it. The mito testing was a breakthrough for me as it showed me, friends and family that I wasn't mentally ill, but really physically ill. Further testing backed this up (translocator protein studies) However, years on I now see that all the tests are doing is showing you that you are ill - they are not really that specific, and I did already know I was very ill. The trasnlocator studies were not useful in terms of treatment.

All of her treatment suggestions for mito functioning, SIBO etc are on her website so you could conceivably just follow that and do without the testing or appointments.

Treatment: she prescribed me a LOT of supplements - mainly ones I had shown, on testing to be deficient in - carnitine, manganese, selenium etc. Most of the supplements I couldn't tolerate, we now know I have MCAS so this is no surprise. I was never able to add in all her supplements.

Diet: she is VERY dogmatic about the diet and sleeping hours etc. She actually follows them herself and I have never seen anyone so glowing, energetic and healthy. She treats a lot of people with fatigue, not just M.E/CFS and I think they are helped a lot by her interventions. I found the diet impossible at that time and couldn't stick to it.

The issue I had was hat if you don't do the diet and the supplement and go to bed at 9 and rise at 6 am then anything you tell her she will say is because you haven't got these bits 'in place' yet and nothing else will work until you do. This approach upset me as I was doing my best, so decided to move on and went to see KDM.

She has in recent years begun testing and treating Lyme and co, which is a good thing. She also took over Dr Skinners thyroid patients when he died a few years ago ( I had seen him also) - she is extremely dedicated to helping patients of all kinds.

She has helped me a lot with benefits etc by writing letters supporting my condition for the DWP etc - of course I do [pay for these, but they are beyond helpful to me and most Drs wont do this.

For me a mixed experience. I know many who have been helped by her a lot. I have not been, but as she herself would point out I didn't follow the protocol to the letter. She is rather too dogmatic about her diet etc, but is warm, kind and dedicated.

For anyone who thinks she is an embarrassment, or hokum etc I would like to point out, Dr Myhill is a trained GP - a real Dr, but specialises in environmental medicine - so she treats the whole person - diet, environment etc with lifestyle advice, supplements and drugs and she has never hidden this aspect of her practice. It is who she is and what she does.
 

Hip

Senior Member
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17,824
I'm talking about science-based medicine.

There's science-based medicine, and then there is science. As a doctor, when you practise science-based medicine, you delegate the scientific research to the medical research community, and you simply make use of their findings and results, which in the NHS get summarized in the NICE guidelines for treating a disease. Such doctors practicing science-based medicine to an extent become just administrators of other people's scientific results, rather than scientists themselves.

I am not criticizing this science-based medicine approach, because by and large it works. Although it does make a visit to an NHS doctor sometimes seem more like dealing with an automated machine than a human being, but that criticism applies to other high tech areas of life.

To be an active scientist yourself, you have to be using the scientific method, a method which includes testing and observation. So a doctor such as Myhill who tries things out and observes the results is in fact in instinct being more scientific than doctors who mechanically follow the NICE guidelines and simply administrate the science-based medicine it embodies.

Even if you are trying out a "stone age diet" to make observations about whether it helps your symptoms, that is still science, provided you remain empirically based and grounded in the actual results.

Sure, empirically trying out a "stone age diet" is only a kind of homespun science, it is not the big guns of science that we hope will eventually lead to a cure to ME/CFS. But it can still be scientific if you are empirically observing your results.
 
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Hip

Senior Member
Messages
17,824
It is worth pointing out that the opinions people have about Dr Myhill are I think often just a reflection of their views on "alternative medicine," for want of a better term. There are people who just hate the "alternative medicine" approach, and as a result they may criticize Dr Myhill just for that reason.

So the subtext of a thread like this then becomes: "do you like or dislike alternative medicine", a debate in which Dr Myhill becomes the exemplar of a doctor employing such alternative approaches in her treatment portfolio.
 

AdamS

Senior Member
Messages
339
What I find interesting about Myhill's testing/strategy and the more advanced metabolomics testing is that fixing micronutrient deficiencies may make the tests look better but it doesn't seem to translate well to symptomatic improvement or functioning.

EDIT: ....Yet :)
 
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Hip

Senior Member
Messages
17,824
What I find interesting about Myhill's testing/strategy and the more advanced metabolomics testing is that fixing micronutrient deficiencies may make the tests look better but it doesn't seem to translate well to symptomatic improvement or functioning.

Yes, the third Myhill, Booth and McLaren-Howard (MBM) 2013 paper does detail patients who followed the basic Myhill protocols of a stone-age diet and nutritional supplements, as well as individualized nutritional supplements based on their ATP Profiles mitochondrial test and other tests (such supplements as D-ribose, magnesium, Q10, acetyl-L-carnitine, NAD and B12 injections — most of which have been shown in independent studies to be helpful for ME/CFS patients).

But that paper does not seem to measure any symptomatic improvement on a ME/CFS scale like say the Bell Ability scale (a scale which they did use in their previous papers), and instead provides more of an anecdotal account of the symptomatic improvements. The main objective measure in that study is, as you say, the improvements that the patients made on their ATP Profiles mitochondrial test after following the treatment protocol, but it is not too clear how well those improvements on the ATP Profiles mitochondrial test correspond to improvements in ME/CFS symptom.


I do think, though, that we need to make a distinction between the energy metabolism dysfunctions found in the MBM studies (essentially: blockages in mitochondrial oxidative phosphorylation, and mitochondrial ATP-ADP translocase), and the treatments given for these dysfunctions.

The former I find very interesting, and if they can be validated by the independent study that is underway, it may well throw light onto the cause of ME/CFS; but the latter, the treatment protocol, I think we all appreciate is not going to be the ultimate answer to curing ME/CFS, even if it might be helpful.
 

TiredSam

The wise nematode hibernates
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2,677
Location
Germany
It is worth pointing out that the opinions people have about Dr Myhill are I think often just a reflection of their views on "alternative medicine," for want of a better term. There are people who just hate the "alternative medicine" approach, and as a result they may criticize Dr Myhill just for that reason.

So the subtext of a thread like this then becomes: "do you like or dislike alternative medicine", a debate in which Dr Myhill becomes the exemplar of a doctor employing such alternative approaches in her treatment portfolio.
That reminds me of the PACE author's assertion that the opinions people have about the BPS approach are often just a reflection of their views on mental illness. It's an easy (and lazy) way to dismiss the opinions of those who don't agree with you. Perhaps those that aren't so into Dr Myhill have thought about it a bit more than just consulting their prejudice against (stigmatisation of?) alternative medicine.

"hate", "criticize" - nice framing.
 

Hip

Senior Member
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17,824
That reminds me of the PACE author's assertion that the opinions people have about the BPS approach are often just a reflection of their views on mental illness. It's an easy (and lazy) way to dismiss the opinions of those who don't agree with you.

I don't think it is quite the same thing. In the case of alternative medicine vs conventional medicine, people often have vehement opinions in this area, and those opinions often reflect a whole philosophical outlook on life, so they can be deep-seated opinions. Thus it then becomes an impassioned clash of ideologies, rather than a sober and impartial examination of the facts.
 

TiredSam

The wise nematode hibernates
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2,677
Location
Germany
I don't think it is quite the same thing. In the case of alternative medicine vs conventional medicine, people often have vehement opinions in this area, and those opinions often reflect a whole philosophical outlook on life, so they can be deep-seated opinions. Thus it then becomes an impassioned clash of ideologies, rather than a sober and impartial examination of the facts.
Do you have any view on which side of the debate has a greater tendency towards vehemence, a philosphical agenda, deep-seated (stubborn?) opinions, and a willingness to clash impassionately, and which side has the more sober and impartially-minded folk?
 

Mary

Moderator Resource
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17,334
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Southern California
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!"

I have this every morning. I started taking d-ribose 10 years ago (before I had testing done by Dr. Myhill) and it caused an immediate improvement in energy. After several years I tried cutting my dose, and finally realized several months later that that was not a good idea. I do put it in my morning coffee, and would not be without it!
 

Hip

Senior Member
Messages
17,824
Do you have any view on which side of the debate has a greater tendency towards vehemence, a philosphical agenda, deep-seated (stubborn?) opinions, and a willingness to clash impassionately, and which side has the more sober and impartially-minded folk?

It's hard to say, but when I looked just now at the Wikipedia article on alternative medicine, I was reminded of the low regard with which Wikipedia generally holds these alternative medicine topics. Here is the start of the article:
Alternative medicine

See also: Quackery, Pseudoscience, and Pseudomedicine

Alternative medicine or fringe medicine are practices claimed to have the healing effects of medicine but which are disproven, unproven, or impossible to prove, or are excessively harmful in relation to their effect; and where the scientific consensus is that the therapy does not, or cannot, work because the known laws of nature are violated by its basic claims; or where it is considered so much worse than conventional treatment that it would be unethical to offer as treatment.

Just the first line of "See also: Quackery, Pseudoscience, and Pseudomedicine" indicates how much these Wikipedia editors hold alternative medicine in contempt, and the opening sentence portrays alternative medicine in a most uncharitable light. The derision and mockery then gets even worse as you read further into the article.

No references in the article of say the cancer preventative effects of dietary onions, to mention the first natural treatment that randomly entered my head, or that saffron is just as good at treating depression as antidepressant drugs (ref: 1), or the benefits that thousands of other natural products / supplements can offer.



But if you want to see how derisive and uncharitable the other side can be as well, then you can easily find that on the Internet too. Mike Adam's Natural News website was often very scathing of conventional medicine, though when I had a quick look at it just now, it seems more toned down than it used to be.

The issue I often find with such websites detailing natural treatments is the exaggeration of the efficacy of the herb or supplement.
 
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