What's your opinion of Dr Myhill?

[Mary]

I had mitochondrial testing done by Sarah Myhill 7 years ago. It's not available in the U.S. We did everything by FedEx and email. Her testing showed severe abnormalities, which was validating for me.

She made her standard recommendations, and I was already doing 95% of them. I've been taking d-ribose for 10 years, and it continues to help. l-carnitine at one time gave me a great energy boost, though it only lasted a week. Anyways, I don't think there's anything off-base about her recommendations, I think they're what most ME/CFS doctors would offer. No, she wasn't able to help me much, though if I had not already tried so many things by the time I saw her, she would have made more of a difference for me - e.g., if she was the one who introduced me to d-ribose and l-carnitine.

The only help I have had with this illness (going on 19 years) is nutritionally-based, and several things have made a big difference for me. And desiccated thyroid too - I don't know if that's considered nutritional or not, though it is a prescription substance.

 

[NelliePledge]

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!

I must admit this was offputting to me as caffeine is even worse than alcohol for me, the stone age diet stuff seems odd what you can and cant eat almost based on her personal preference like you can have processed meat like bacon and salami but not dairy. Eg she's big on kefir but kefir as far as Im aware was traditionally a dairy based product (the one I have is goat milk) but she uses coconut milk....

Anyway im gradually introducing the supplements she recommends for energy - I take some of the general ones as well like vit c, magnesium, selenium etc etc but I've not gone the whole hog with her mineral mix. I was only diagnosed 18 months ago so just really experimenting to see if anything can help with improvements like so far magnesium, omega 3 to reduce pain, having vit c before bed stopping me getting acid reflux, also trying ribose and it does seem to help with energy

 

[overtheedge]

I've never been to see her but have read most of her stuff, the coenzyme q 10 and carnitine made me feel phenomenal for a few weeks then died off right as I was beginning to think I had been cured. I really wish i knew why they stopped working, I plan to have my coq10 levels tested soon like she recommends and see if perhaps my body stopped absorbing it or something.

One of the things that really makes her stand out to me versus all the other doctors who recommend these mitochondrial supplements is how she advises people take ribose: spread throughout the day in thirty minute intervals. Since ribose has a short half life it works better when taken in this way, i have found this to be the key to getting ribose to really work for me.

It' unfortunate though, several of the tests she advises people take in her book are unavailable such as the lactate dehydrogenase studies and fat biopsies. Maybe she has access to them but she isn't accepting any new patients or offering testing since she has so many people coming to her already.

Still, she's the CFS doctor I most respect, a lot of the stuff she writes matches up with what I've found to be true from my experience with CFS so I'm going to check out more of her recommendations when I get the chance

 

[Alvin2]

coenzyme q 10 and carnitine made me feel phenomenal for a few weeks then died off right as I was beginning to think I had been cured

Weird i had this same experience, the first few weeks of Q10 i was doing noticeably better (nowhere near cured) but it died off. Without it i've noticed i'm not doing as well but taking it again is not as dramatic of improvement. I can't explain it but that suggests some kind of habituation or biochemical changes.
Though low Q10 has been shown in ME/CFS, so you got me

 

[svetoslav80]

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!

How about the coffee?
Btw, I just ate a few spoons of honey and had an immediate improvement in energy as well. Are you sure it won't work the same way with any other sugar?

 

[Mary]

@svetoslav80:

Here's what Dr. Myhill has to say about d-ribose and the production of ATP:

The pathological defect in patients with chronic fatigue syndrome is slow recycling of ATP. Normally there is enough ATP in a heart cell to last about ten beats - this means that roughly speaking ATP needs to be re-cycled every ten seconds. Top athletes like Steve Redgrave probably recycle ATP every five seconds, but patients with fatigue syndromes may only be able to recycle ATP every minute. Therefore I can do in ten seconds what Steve Redgrave can do in five seconds, but it might take one of my fatigue syndrome patients a minute to achieve the same!

ATP in releasing energy is converted to ADP (2-phosphates) which is recycled back through mitochondria to ATP (3-phosphates). However, if the system is really pushed then the body can extract energy from ADP by converting it into AMP (1-phosphate). The problem is that AMP is very slowly recycled, if at all, and most is lost from the cell. This means that the body has to make brand new ATP. This it does from D-Ribose and this it can do very quickly. The trouble is the body making D-Ribose. Normally this is made from glucose. However if the cell is lacking in energy then any glucose lying around can be converted to lactic acid to generate energy. The problem here is twofold - first of all the lactic acid causes pain. Secondly any glucose that was previously swilling around is now not available to make D-ribose.

Even when glucose supply is plentiful, production of D-ribose in the cell by the glucose pentose shunt is very slow.

D-ribose as a nutritional supplement is therefore useful because it is immediately available for the generation of new ATP

http://www.drmyhill.co.uk/wiki/D-ribose

She's saying the d-ribose is more easily converted to ATP than glucose; it gives me more energy than sugars like honey. BUT, if honey gives you a boost of energy, great, use it. It doesn't do the same for me.

Here's what she says about caffeine and d-ribose:

And now for a bit of good news! AMP can be recycled, but slowly. Interestingly, the enzyme which does this (cyclic AMP) is activated by caffeine! So the perfect pick-me-up for CFS sufferers could be a real black organic coffee with a teaspoon of D-ribose!

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

I did have a noticeable boost in energy after starting d-ribose. I did cut back at one time, and my energy correspondingly decreased. So I still take about 15 grams a day (divided into 2 doses)

 

[overtheedge]

This is a quote from Myhill's book Diagnosis and Treatment of Chronic Fatigue Syndrome

the best way to treat low ATP is to supplement with manufactured D ribose, a sweet white sugar, starting with 3 teaspoons daily (15 g) and adjusting according to response. Sufferers may see changes within a few days. Clinically, I expect to see less delayed fatigue and improvement in muscle pain and aching. D ribose has a very short half-life and should be taken small doses throughout the day in drinks (hot or cold). Interestingly caffeine may enhance the effects of D ribose I recommend taking it with green tea, coffee, or tea. It is worth supplementing D ribose even with low normal results because I have so much happy feedback from patients taking the supplement. However some people with a fermenting gut may ferment D ribose and worsen the situation. Fermenting gut is unfortunately very common CFS many CFS sufferers have to reserve D ribose only for use as a rescue remedy if they really overdo things. The ideas that a low-carb diet used in the treatment of fermenting gut will starve out fermenting microbes so that levels are so low that there will not be the numbers to ferment the occasional large dose of D ribose before it is absorbed.. P 46 – 47

I still haven't tried ribose with caffeine though, I'm going to try that out soon.

 

[svetoslav80]

I still haven't tried ribose with caffeine though, I'm going to try that out soon.

Let us know if there was an effect thereafter

 

[PhoenixDown]

Back in 2012 I took Myhill's tests including the mitochondrial function tests and when the results came in she had me on over £200 worth of her supplements. They didn't make one iota of difference. On top of that no doctor would accept her tests as valid proof of illness, including at my tribunal when I was sectioned, my family also didn't believe her tests. I did present my test results at my ATOS benefits interview (I was awarded benefits) how ever I've no way of knowing whether that effected the decision.

She seems very focussed on her treatments in a one size fits all kind of way, but if some patients here say she helped them, I'm not going to argue.

 

[Hip]

She seems very focussed on her treatments in a one size fits all kind of way, but if some patients here say she helped them, I'm not going to argue.

Are you sure that is the case?

As well as her standard treatment of the stone age diet plus supplements like D-ribose, magnesium, Q10, acetyl-L-carnitine, NAD and B12 injections, judging from her website (and her page that lists all her treatments for fatigue), Dr Myhill also appears to use the following ME/CFS treatments:

• Until recently Dr Myhill used Valtrex as per the Dr Lerner protocol to treat EBV-associated ME/CFS (until the GMC recently prevented her from prescribing this drug) — see this page on her website about the Valtrex protocol.

• Dr Myhill has a page on Dr Chia's oxymatrine treatment, so possibly she uses this, or maybe just suggests that patients can try it themselves, as it is available as a supplement.

• She has a page on low-dose naltrexone (LDN), so possibility she may try this on some ME/CFS patients. Dr Chia has found that LDN only works for a small subset of patients, but in patients where it does work, the benefits are substantial. Note that LDN may not work unless you also take vitamin D3.

• Dr Myhill lists the ketogenic diet as something that may help fatigue; several patients on this forum report they benefited from the ketogenic diet.

• On this page about human growth hormone for ME/CFS (which Dr Myhill found did not have impressive results), she mentions that ME/CFS patients have suppression of the HPA axis, and that many patients can be improved by taking physiological doses of hormones such as thyroxine, DHEA, cortisol and melatonin. So possibly she uses these treatment in her practice.


Thus her treatment portfolio seems similar to that of many other ME/CFS doctors.

 

[keenly]

She is excellent and very sincere.

 

[Insomniac]

I

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.

She put me on the Pear and Lamb diet for 6 weeks to see what I was allergic too. She didn't do the Paleo diet in 1996..

Back in 2012 I took Myhill's tests including the mitochondrial function tests and when the results came in she had me on over £200 worth of her supplements. They didn't make one iota of difference...

She seems very focussed on her treatments in a one size fits all kind of way,...

Yes, one size fits all what was done to me with her diets.
...and the same Biocare brand supplements to everyone. I couldn't digest them either.
She had the assumption that all ME patients have a milk allergy and all get better on her supplements and diet and if they go to bed at 9pm with no light.

 

[sickanarchist]

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!

But those suppl

 

[barbc56]

Adding cocaine to your coffee will give you energy but that doesn't mean it has any therapeutic value!

 

[Emily L]

My cousin Lettie would love to see her

 

[barbc56]

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

Derision and mockery? I don't see that at all and in fact the entry seems to be quite unbiased. Just because alternative medicine and conventional medicine share the word medicine does not mean they have equal validity.

This is called the false equivalence fallacy.

A common way for this fallacy to be perpetuated is one shared trait between two subjects is assumed to show equivalence, especially the order of magnitude, when equivalence is not necessarily the logical result

.

 

[Hip]

Derision and mockery? It appears to me you are using the false equivalency fallacy. Just because alternative medicine and conventional medicine share the word medicine does not mean they have equal validity.

It rather depends on who is setting the standard for validity.

To use it properly, alternative medicine really requires the user to apply some basic scientific principles of creative experimenting, testing and self-observation. I tend to define the term "alternative" in a broad sense, which includes anything that you investigate or discover that works for you, including off-label use of drugs, eg low-dose naltrexone, or some of the interesting off-label uses I have myself found for various pharmaceutical drugs. That's all alternative medicine, in the broad sense that I am using.

Whereas for conventional medicine, you can be a complete scientific moron, and far too lazy or incompetent to think or experiment for yourself, but you put yourself in the hands of the conventional system, and that does the science for you.

So if the standard of validity involves creative experimenting, testing and self-observation, then the approach of those thoughtless patients who are shepherded by conventional medicine falls well short of the standard.

 

[TiredSam]

Derision and mockery? I don't see that at all and in fact the entry seems to be quite unbiased. Just because alternative medicine and conventional medicine share the word medicine does not mean they have equal validity.

This is called the false equivalence fallacy.

Aha! That has just clarified for me why the BPS brigade habitually borrow words and apply their own definitions to them - fatigue, CBT, science etc. Thanks

 

[keenly]

Derision and mockery? I don't see that at all and in fact the entry seems to be quite unbiased. Just because alternative medicine and conventional medicine share the word medicine does not mean they have equal validity.

This is called the false equivalence fallacy.
.

Yes indeed, 'conventional' medicine is terrible and kills many, and there is no such thing as alternative. One is not obliged to acquiesce with the status quo.

 

[barbc56]

So if the standard of validity involves creative experimenting, testing and self-observation, then the approach of those thoughtless patients who are shepherded by conventional medicine falls well short of the standard.

I'm not sure what you are saying.