Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

[TheBassist]

If ME was a dietary issue, we’d be all recovered and back to our lives. Give me a break!

As the psychologist who is my assigned practitioner in this said to me, “we see a lot of vegetarians here”.
Thanks, but I’m here because a flu nearly killed me.

 

[Kitty]

I find all this incredibly irritating – I've never had it from a doctor, but before I was diagnosed, lots of colleagues suggested dietary 'solutions'. (Luckily, it did stop once I knew what was causing the symptoms.)

However, I am curious about the odd intolerance to glucose experienced by many ME patients. I have a sweet tooth and eat more sugary foods than I should, even though I know it will make symptoms worse. It's impossible to read up about it, though, because all the literature is about diabetes mellitus. I've never had an abnormal blood glucose reading, and the symptoms that eating sugar causes (which sometimes include a minor immune flare with swollen glands) aren't typical in diabetes anyway.

I don't remember seeing any research that investigated this aspect of ME – maybe because the reason for it is already understood or can be hypothesised?

ETA: 'eating sugar'.

 

[Midnattsol]

If ME was a dietary issue, we’d be all recovered and back to our lives. Give me a break! (Not you, @TheBassist )

Not everyone who has an illness where diet is a clear culprit for making them ill/worse are able to just change their diet and recover. It is hard.

And even if diet is not a cure (I don't believe it is for ME), it is still important when ill to eat a nutrient-dense diet. I would say sick people are more dependent on a good diet than a healthy person whose body can cope with a poor diet. But I study nutrition, so of course I would say that I am also frustrated by how some doctors dismiss the importance of diet, or that they know next to nothing about it.

 

[Milo]

I don't know about consensus but even if she was absolutely correct about diet it completely misses the point as to the social aspects of this illness. Many cannot afford a change in diet nor can they cook for themselves nor can some even think their way through how to apply a new diet. So what are they to do? Too bad for them.

@Snowdrop you are missing the point. You can have a butler and a maid, have someone cook you nutritious meals, follow X,Y,Z guru’s diet, and you can still be severely sick with ME. Do you ever consider that food may not be the problem?

 

[Snowdrop]

@Snowdrop you are missing the point. You can have a butler and a maid, have someone cook you nutritious meals, follow X,Y,Z guru’s diet, and you can still be severely sick with ME. Do you ever consider that food may not be the problem?

I agree entirely that diet will not cure ME. I was just pointing out that even if it were true Dr Myhill was omitting some important points that would render it a less than stellar treatment.

It was never my intent in my post to say otherwise.

 

[boolybooly]

I am one of Dr Myhill's patients and I think it makes more sense if you remember she sees a lot of CFS of various causes including organophosphate poisoning, Lymes, unidentified metabolic or hormone disorders etc. In fact I get the impression that viral etiology CFIDS like mine is one of the rarer types of CFS on her books.

I did not hear the article being discussed but advice she has offered in the media is presumably general advice for the public. It makes sense if you consider there is no harm in optimising diet even if it wont cure you and I believe she has a particular interest in better nutrition because it helps to foster good health on the basis that prevention is better than cure and she has a point, the modern western diet is creating a generation of obese diabetes II patients. We see it on the BBC every week.

I think the logic goes CFS + diabetes is worse than just CFS on its own. Speaking from experience, getting a better balance of foodtypes in my diet has been helpful but is in no way a cure and I do not recommend a zero carb diet either.

 

[adambeyoncelowe]

I am one of Dr Myhill's patients and I think it makes more sense if you remember she sees a lot of CFS of various causes including organophosphate poisoning, Lymes, unidentified metabolic or hormone disorders etc. In fact I get the impression that viral etiology CFIDS like mine is one of the rarer types of CFS on her books.

I did not hear the article being discussed but advice she has offered in the media is presumably general advice for the public. It makes sense if you consider there is no harm in optimising diet even if it wont cure you and I believe she has a particular interest in better nutrition because it helps to foster good health on the basis that prevention is better than cure and she has a point, the modern western diet is creating a generation of obese diabetes II patients. We see it on the BBC every week.

I think the logic goes CFS + diabetes is worse than just CFS on its own. Speaking from experience, getting a better balance of foodtypes in my diet has been helpful but is in no way a cure and I do not recommend a zero carb diet either.

However, there isn't convincing evidence that paleo-keto actually is better than a balanced diet. I tried it for over a year and I think, if anything, it used up more energy (and a lot more money!) than just eating a well balanced diet in the first place.

 

[boolybooly]

However, there isn't convincing evidence that paleo-keto actually is better than a balanced diet. I tried it for over a year and I think, if anything, it used up more energy (and a lot more money!) than just eating a well balanced diet in the first place.

I agree its pretty anecdotal and subjective. I am prepared to believe different people respond differently. For some it seems to be much more helpful than it was for me. So the diet may be right for those people, just not me, so I do what is right for me and Dr Myhill encourages and respects my autonomy in a supportive manner. I feel she is trying to help.

I tried a ketogenic diet using ketostix to monitor and experiment, until they showed dark purple all the time and stuck at that very strict low carb diet for two months but found it made me feel ill and sluggish and there was no breakthrough for me after a month, as some report. I have heard similar from a few PWME who have tried it and did not find it helpful, like yourself. I wonder if its something about the way this condition affects our metabolisms?

I went back to limited carb and felt better than either full keto or a normal high carb diet. So it was worth trying because I learned something moderately helpful and keep my carbs much lower as a proportion of my calories now... except for Christmas treats...!

 

[adambeyoncelowe]

I agree its pretty anecdotal and subjective. I am prepared to believe different people respond differently. For some it seems to be much more helpful than it was for me. So the diet may be right for those people, just not me, so I do what is right for me and Dr Myhill encourages and respects my autonomy in a supportive manner. I feel she is trying to help.

I tried a ketogenic diet using ketostix to monitor and experiment, until they showed dark purple all the time and stuck at that very strict low carb diet for two months but found it made me feel ill and sluggish and there was no breakthrough for me after a month, as some report. I have heard similar from a few PWME who have tried it and did not find it helpful, like yourself. I wonder if its something about the way this condition affects our metabolisms?

I went back to limited carb and felt better than either full keto or a normal high carb diet. So it was worth trying because I learned something moderately helpful and keep my carbs much lower as a proportion of my calories now... except for Christmas treats...!

Except, the crux of Myhill's treatment regime is no carbs and bucketfuls of supplements. So when we admit these things are probably not that helpful, what's left? And why is she so zealous about it?

Keto can actually lead to kidney stones, deficiencies and weight gain. It can lead to high blood pressure, higher cholesterol and strain on the liver (where the body makes glycogen from protein if there aren't enough carbs). The evidence of benefit is really woolly.

So is it really harmless? Is it really general information? I'm not convinced that it's anything but a fringe practitioner obsessed with another One True Way who selectively ignores everything that doesn't fit her model.

 

[mango]

Is it really general information?

I would say no, for several reasons, and especially seeing that she seems to be tying it to problematic personality traits, psychological problems, unhelpful behaviours etc that she ascribes to PWME as a group. I keep getting the impression that she portrays ME/CFS in a minimising way, as if it were some kind of minor dietary/lifestyle issue, not a horrendous disease. (I'm too sick to write something new at the moment, so I'll quote an old post of mine instead.)

Transcribed from her talk at the Abundant Energy Summit in August 2015:

As you know, a feature of people with chronic fatigue syndrome, or the people who get it, is they tend to be the, you know, the pushers, the perfectionists, the do-or-die, the "I will carry on regardless of all". They ignore their symptoms, they stay up all night with black coffee and chocolate biscuits in order to pass their exams. They burn the candle in both ends, and you know... And so, the very personality that gets you into chronic fatigue syndrome and ME doesn't help you get out of it.

Presenter: Hahaha, so true! So true!

So, what I'm saying, you know, is a modest amount of carbohydrates is fine, if you've got perfect digestion. But of course many of my ME patients have got less than perfect digestion, and because they are fatigued they haven't got the energy to cook or prepare food, so they tend to go to things which are cheap, convenient and addictive, because that's the only pleasure they get in their day! So, we go over those foods when we're stressed, as I say those carbohydrates are addictive and we call them comfort eating. [...]

So, you know, it just illustrates that, you know, how we use carbohydrates for psychological reasons, but they mess with our digestion, they mess with our metabolism, and they are a major risk factor for chronic fatigue syndrome.

What I try to emphasise, or make available in my book, or the two books -- there's another one coming out shortly -- is you can do a lot of this yourself. And you can do a lot of this stuff with simple nutritional therapy. You don't need to go and see a clever doctor and have hundreds of tests. All this stuff can be done at home. It's difficult, it's not easy, it's a hard path to walk, but it's all very doable. [...]

As I get older, and perhaps wiser, you know, I spend more time talking about the very basics. And what I find is, the very basics done really well, for many people is all they need to do.

All we have to do is get your 51% right, and the body will do the rest. If you're only 49% right, you're still on the slippery slope downhill. And sometimes, you know, hard work on the diet, getting that right, being disciplined about sleep, being disciplined about supplements and pacing, and that's all you have to do to get well. And, you know, some people will need the mitochondrial package as well, but you know, you can do that just by taking supplements.

I also don't like that she seems to blame the patient if they don't get well using her method.

Presenter: And people don't often stay with the program long enough, and they give up too soon, or if they do it in a piecemeal way [...]

Sarah Myhill: Excellent analogy. I can entirely concur with that.

Some patients, the only way they can be well is to take regular prescription hypnotics to guarantee themselves a good night's sleep on a regular basis, and then they can start to get well. And that's where psychotherapy is, can be incredibly helpful because it gives you the psychological techniques to deal with, you know, past horrors whether that's child abuse or bullying or whatever, or you just, some people are just constitutionally highly strung and it goes back through the family to mother and grandparents, you know, in front of them.

(Sorry, not sorry!)

 

[adambeyoncelowe]

I would say no, for several reasons, and especially seeing that she seems to be tying it to problematic personality traits, psychological problems, unhelpful behaviours etc that she ascribes to PWME as a group. I keep getting the impression that she portrays [ME and] CFS in a minimising way, as if it were some kind of minor dietary/lifestyle issue, not a horrendous disease. (I'm too sick to write something new at the moment, so I'll quote an old post of mine instead.)

Transcribed from her talk at the Abundant Energy Summit in August 2015:



I also don't like that she seems to blame the patient if they don't get well using her method.


(Sorry, not sorry!)

Great post. Thanks. This highlights some of the things that have turned me off her.

 

[Milo]

I would say no, for several reasons, and especially seeing that she seems to be tying it to problematic personality traits, psychological problems, unhelpful behaviours etc that she ascribes to PWME as a group. I keep getting the impression that she portrays ME/CFS in a minimising way, as if it were some kind of minor dietary/lifestyle issue, not a horrendous disease. (I'm too sick to write something new at the moment, so I'll quote an old post of mine instead.)

Transcribed from her talk at the Abundant Energy Summit in August 2015:



I also don't like that she seems to blame the patient if they don't get well using her method.


(Sorry, not sorry!)

Thank you @mango

Her message seems to be ‘buy my books’, I will get you better if you do everything i say, and if you don’t get better that’s your own fault.

Of course her books are not peer-reviewed.

 

[Amw66]

My aunt is a Myhill patient. It is not wonderful, she cannot do keto and generally had a good diet pre ME, so minor tweaking , only.

But she is listened to, has a key role in her illness and has had access to testing not available on NHS.

Here we have nothing combined with a GP medical mindset stuck in a repeat loop from 10-16 years ago where we struggled to get a home visit ( took over a year) and bloods via district nurse as a surgery visit was expected.

So have things made a difference? Yes, magnesium injections have had a huge positive effect on heart palpitations. Thyroid function is more even now.

There is a heavy metal issue, and suspected POTS which GP will not deal with.

So not a cure, but issues being addressed and someone who is empathetic.

 

[TiredSam]

In Germany there are private doctors who offer a mitochondrial energy test, eg this fellow:

http://www.praxisvantreek.de/

He also offers natural healing, alternative gynacology, LDN, cannabis as medicine, "healing touch", and gives talks on the dangers of vaccinations (which can cause hashimoto, epilepsy, neurodermitis, leukemia, MS, asthma and CFS according to the talks he gives). He has just stopped taking regular patients and now only sees private ones, so business must be booming.

Also this fellow:

https://www.umweltmedizin-heidelberg.de/

Both are highly regarded and considered experts amongst the German CFS community and offer a range of expensive treatments to sufferers who do not seem to get any better in the long term (at least the ones I've spoken to haven't), but sometimes feel better in the short term and ascribe their improvement to whatever expensive treatment they've just paid for.

I have recently heard of a local self-help group where one new member has had the mitochondrial energy test, found that her mitochondria is "fragmented", and appears to have swallowed a medical dictionary. She is now declaring that only those with test results which show that their mitochondria is damaged really have ME/CFS. Now there is a rift growing between the VIPs with fragmented mitochondria, and those who have either had the test and appear ok, or have not had the test. This divisiveness leaves the non-VIPs without the one place they used to feel they could get help and support.

So that's splendid. I have just sent a non-VIP a link to the study in the OP, along with my opinion on the matter.

 

[spinoza577]

I don´t see in any way how a mt problem could explain delayed PEM and the up and downs in the long course of illness. That single symptoms come and go would not be explained either.

 

[Diluted-biscuit]

I had the mito test done by dr myhill many years ago. I accepted the result at the time but I’m happy to admit it’s basically worthless now after this study.

 

[Amw66]

We has mitochondrial test done.
It's part of a number of tests within the ATP profiles " package" some of which were useful ( v low glutathione, low normal B3, one SODase low , one low normal).

The interesting aspect for us was how well the energy score related to ability. It was spot on. I don't know if anyone has addressed this aspect?

Another query, this was developed from an existing lab test ( my understanding). Does this imply the original lab test is inaccurate?

 

[adambeyoncelowe]

We has mitochondrial test done.
It's part of a number of tests within the ATP profiles " package" some of which were useful ( v low glutathione, low normal B3, one SODase low , one low normal).

The interesting aspect for us was how well the energy score related to ability. It was spot on. I don't know if anyone has addressed this aspect?

Another query, this was developed from an existing lab test ( my understanding). Does this imply the original lab test is inaccurate?

Does the testing protocol ask you to self-rate your disability level at any point? There are two things that spring to mind (though there may be others).

1. Most people cluster in the 40-60% range because it's in the middle.

2. Knowing patients' self-rated disability scores beforehand could bias the test (e.g., if one were to leave the sample out longer for those who report worse scores, so that the test shows poorer results).

It's hard to say what could produce that correlation. The other answer is just that it's blind luck or confirmation bias (e.g., everytime someone gets a result that confirms their opinions of how ill they are, they post about it; those who get a 'better' score than they expect might be embarrassed or wonder if they were scammed, and keep it to themselves to avoid difficult conversations).

 

[adambeyoncelowe]

Does the testing protocol ask you to self-rate your disability level at any point? There are two things that spring to mind (though there may be others): most people cluster in the 40-60% range because it's in the middle; knowing patients' self-rated disability scores beforehand could bias the test (e.g., if one were to leave the sample out longer for those who report worse scores, so that the test shows poorer results).

It's hard to say what could produce that correlation. The other answer is just that it's blind luck or confirmation bias (e.g., everytime someone gets a result that confirms their opinions of how ill they are, they post about it; those who get a 'better' score than they expect might be embarrassed or wonder if they were scammed, and keep it to themselves to avoid difficult conversations).

Another thing occurred to me: are those who fork out the £430 for the test plus interpretation more likely to be working (i.e., perhaps more mild/moderate).

These are gross generalisations and complete stabs in the dark, by the way, and I absolutely don't mean to offend anyone. I'm just trying to make sense of why this apparent correlation might occur.

Ultimately, the simplest answer to me is that most patients have an 'average' score (in the middle somewhere) and that the test equally is more likely to give an average score.

 

[Amw66]

Does the testing protocol ask you to self-rate your disability level at any point? There are two things that spring to mind (though there may be others).

1. Most people cluster in the 40-60% range because it's in the middle.

2. Knowing patients' self-rated disability scores beforehand could bias the test (e.g., if one were to leave the sample out longer for those who report worse scores, so that the test shows poorer results).

It's hard to say what could produce that correlation. The other answer is just that it's blind luck or confirmation bias (e.g., everytime someone gets a result that confirms their opinions of how ill they are, they post about it; those who get a 'better' score than they expect might be embarrassed or wonder if they were scammed, and keep it to themselves to avoid difficult conversations).

We gave no details re abilities.
A wee questionnaire from memory to Myhill - brief medical history, age, the kind of thing you gsve to fill out everywhere. 4
We advised glandular fever likely trigger, " ill since" since timespan and
We provided typical day's food diary.
We were below 40-60% ( both aunt and daughter)

The correlation is interesting because it is generally the thing that stands out for most people.

ETA most people I know who have got tested were pretty badly affected and either had savings, working parents or sympathetic relatives.
Interpretation is not difficult , @Hip has helped a few people with finer points relative to published papers. You save money if no interpretation required