Dr. Sarah Myhill is a specialist in fatigue related illnesses and has worked in healthcare for over 20 years. I recently came across some of her papers that sum up what she believes is happening in CFS patients.
Dr. Myhill thinks that chronic fatigue patients have mitochondrial dysfunction. She states that “CFS is a symptom of mitochondrial failure“. She also says that the cognitive impairment many experience, be due to low blood (and oxygen) supply to the brain. There is a problem of reoccuring mitochonidrial damage must be put to a stop by providing the elements that they need to function.
Dr. Myhill sees all the symptoms of CFS as a result of low energy output from the mitochondria in all of the cells. The energy molecules ATP and NAD arent being created as efficiently and there is reduced blood flow from the heart as a result of this state of low energy. This causes the body’s organ systems like the heart, liver, skin, and muscles to slow down functioning to reduce strain on the body.
The muscles dont have the energy to run, because there is less oxygen available. They muscle produce lactic acid (an alternative when ATP runs low) to keep up with low availablility of ATP, resulting in aches and pains.
The brains of chronic fatigue patients (pictured left) often have lower than normal blood supply. This may be why many complain of severe concentration and memory problems. Dr. Myhill believes that this is a temporary symptom and can be reversed if mitochondrial function is restored.
The fatigue that people with CFS experience is because they have less ATP and NAD being produced in the mitochondria. ATP and NAD are the molecules that are used by every cell in the body. Dr. Myhill believes that there is a “slow recycling of ATP“. This slow recycling and switch from ATP to a chemical ADP (which cannot be recycled) may be responsible for the delayed fatigue that patient experience after exercise. It can take the body a few days to make more ATP if the body is in low supply.
She recommends these supplements to increase the output of ATP in the cells.
The supplements are as follows:
Co-Q 10: 300 – 360mg daily.
L-Carnitine: 2000 – 3000 mg daily.
D-Ribose: 15 grams daily.
Magnesium: 400 – 800 mg daily.
Niacinamide: 500 mg daily
This is the package of supplements I’ve been on since December; along with the full range of multivitamins, minerals, vitamins C & D and omega-3 & 6… (High dose B Vitamins, as found in some multi’s, seem to be important here too – in fact, when I first started taking larger levels of B1, B2, B5, [activated] B6, in the BioCare ones Mrs Myhill supplies, apart from my urine turning illuminous yellow, I felt a very healthy, energised feeling which would last a few hours after taking my morning vitamins…)
Progress so far with these supplements has been promising… I felt I responded to them very quickly at first – especially the Ribose… Then I felt I plateaued for a while; half expecting to crash again, as tends to happen whenever I’ve taken anything energy boosting in the past.
Hasn’t happened though, and progress generally seems to go in short bursts, followed by plateaus.
Taking regular FIR saunas (I picked one up off ebay for £90) and sorting out chronic hyperventilation seem to be important additional steps, as toxins or HVS may have been implicated in mito function going slow in the first place – so I can’t tell exactly how much progress is down to supp’s and how much is down to those extra measures; but overall I know I’m on the up now; and as I was saying in another post earlier, I still get many symptoms, but my days are more consistent and I haven’t had any of the really unpleasant, sick, too-tired-to-breathe type of fatigue for some months now, (used to be a daily occurance!).
She’s also made me much more aware of pacing… My old tendancy was to try and walk and slowly build up fitness/energy whenever I felt able…
This always felt like it worked, but year after year, I was still not really progressing; too many ups and downs…
So this time round I’m only increasing activity when I feel 99% at rest, and then, only at a very slow, steady rate; doing less than I feel the urge to on good days, just to make sure I’ve always got enough energy left over each day to repair what my body needs to.
Dr Myhill’s site is excellent. The information she gives makes a lot of sense. I found that CoQ10 had a definite beneficial effect.
I was made more ill by Sarah Myhill’s treatment. She put me on an elimination diet that did damage to my digestive system.
T still have not recovered from that.
I also found vitamins from other brands like the “foodsource” or “Solgar” brand easier to digest and giving more help than the ones she gave out.
This was my personal experience.
On another subject; A lot of the recent ideas she had about Mitochondria and blood flow to the brain are taken from other doctors like Dr Goldstein and Peckerman who originally came up with them.
Rachel. What about the vitamin supplements suggested in this blog post? Did those have any affect? It sounds like you were being treated by more than just the vitamin regimen above. Can you comment on whether that was helpful for you?
i havent personally tried this out. Im still doing the yasko protocol. Im having some improvement, but its kind of plateaud.
Also waking up early and going to sleep and waking up at the same time every day is helping alot to. Ive been sleeping so good since ive been doing that.
I was thinking, an elimination diet shouldn’t really do you any damage… It’s the only effective way to spot allergies – and there’s not much point spending money on supplements if you’ve got a wheat allergy and an addiction to pasta keeping you fatigued…
I’d be very intruiged as to why you got a bad reaction… I can’t suggest this is the case, but from my experience – especially with the Yasko protocol – sometimes you know something’s working because it makes you (initially) much worse…
Like they say, the symptoms of being ill are usually a sign of your body healing; so I wonder if you just went cold-turkey on a major food allergy and that could be something worth investigating again a little more gently.
Hi — thanks for your great blog!
You mention above that: “Dr. Myhill thinks that chronic fatigue patients have mitochondrial dysfunction. She states that “CFS is a symptom of mitochondrial failure“.
Does she say what is causing the mitochondrial failure or dysfunction? I’ve checked out her site, but my foggy brain can’t seem to find where she may talk about a cause or multiple causes…
???
Thanks,
dan
Hey Dan,
Download her free CFS book : http://www.drmyhill.co.uk/cfs_book.pdf
Theres plenty of info in it and its easy to follow.
There can be many different causes of mitochondrial dysfunction or impairment and Dr Myhill offer’s a Mitochondrial Function Profile test which is a good place to start. Dr myhill has just released a paper on her work concerning mitochondria function and CFS – http://www.ijcem.com/files/IJCEM812001.pdf
Its by far the most compelling evidence of a common biological link in cfs patients.
Thank you so much for this. The link to the published paper by Sarah Myhill is brilliant.
There have been many published papers proving a biological basis to M.E but this one stands out in several respects:
a) The doctors use proper criteria for defining M.E – meaning they are treating people who are truly sick
b) It is a large sample size. Not vast, but large enough that the results are robust
c) It deals with a subject that lies at the very heart of the disease. Whilst papers showing altered SPECT scans are interesting and papers on heart insufficiency are also worthwhile, there are still issues which lie closer to the core of the problem – and Energy Production must be one of them.
d) It is a comprehensive study. As the authors state, had they only looked at one variable for mitochondrial function they would have missed many suffers who have inpaired function. By looking are five variable they properly tested everyone.
e) Every single one of the M.E suffers had impaired mitochondrial dysfunciton. And every single one of the control subjects had normal mitochondrial function. In science those are STAGGERINGLY significant results. Almost unheard of in the area of M.E where there is often some vagueness around the test outcomes vs normal range.
f) The test is unusual in that it is not only diagnostic but also prognostic for treatment. By contrast, tests such as Natural Killer cell function – often very low in M.E does not tell you how to proceed with treatment, merely that something is wrong. This test will be a very useful indicator of where to intervene with supplements and possibly even medication.
g) Overall, a well designed, ethically managed, scientifically valid study.
Well done many times over, to Sarah Myhill and her collegues. I have never met Dr Myhill but find her generous and commited attitude exemplary. She makes her findings widly available, attemepts to help as many as possible for as little money as possible and has remained fighting for the M.E cause despite professional criticism and attack. A brave and generous woman/doctor indeed.
Once again, brilliant and thank you.
I am a supporter of Dr MyHill. I took the test last Sep and at the time I put myself at 20-30 on the CFS Ability scale. The results came back confirming that I was smack-bang in the middle of the severe group and far from the normal one. This had two positive benefits: (1) it was a lab test demonstrating an objective diagnostic of biological failures consistent with my symptoms, which was good my own confidence in myself. (2) It gave me some indications for treatment options.
My car analogy here is that if you realise that the head gasket is going and your engine is leaking oil badly, then knowing this you can use the car for short trips if you keep topping it up with oil, and avoid seizing the engine entirely. It doesn’t help you fix the engine.
The “feed the mitochrondria” regime improved my quality of life, almost eliminating my fibromyalgia, dropping my exertion recovery times (dropping from 7-14 dats to well under a day). The B12 injections really helped with mental clarity, but didn’t materially help with the POTS, so working & reading fully prone was still the order of the day.
The problem is that this test shows your mitochondrial processes are functioning correctly and the supplements help mitigate the consequences. They aren’t a diagnosis of any root cause, and don’t really help here. So I remained on a plateau for over 6 months, not knowing what to do to move forward and the NHS is zero help here.
About 6 weeks ago I tried a wheat-free diet — for no obvious reason as I didn’t think that I had any obvious symptoms of gluten intolerance or whatever; it was just a safe think to try and something different. However the consequence were astounding. After over a year at that 20-30 level in less than a month I’ve gone up to a 50 and continue to improve. I went from a 7 to a 2 on the Bristol Stool scale [you can wiki that one
] I still need to rest but my potter-to-bedrest ratio has gone from 1:10 to 1:1.
My working hypothesis is that a viral infection activated a dormant wheat protein intolerance, and a consequential a coeliac reaction. Whatever happen in my small intestine, I was still absorbing enough basics to avoid weight-loss. However, it was the failure in minerals, vitamins, etc., absorption that eventually cause the Krebbs’ cycle collapse, and other CFS/ME symptoms.
To Terry Ellison:
what is the significance of the Bristol Stool scale in relation to CFE/ME?
I am a patient of Dr Myhill.
I have imporved so much following her protocol – Rachel is right that other doctors have had these ideas and Dr Myhill credits these doctors on her website. She is the first to have a paper on this directly published.
The IJCEM paper followed a Citizen’s Paper whihc I convened see
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Craig%20Robinson%20Paper%20-%20Biolab%20ATP%20CFS%20function%20Study.pdf
This might be of interest.
Rachel I hope you feel better soon – you were unusual. I have never heard of such a reaction.
Craig
Just to add to what Terry’s already said, the importance of finding food allergies even while doing all these other protocols is SO important.
It’s one of the first things Dr Myhill wrote on my mito test results: do an exclusion diet.
Well I thought I was pretty good on the diet. Had cut out wheat, dairy, eggs, sugar, alcohol, etc. But I’m KICKING myself it’s taken me until now to consider *lectin* problems.
Tomatoes, lentils/beans, most grains, etc. I had my first day off most the common offenders yesterday, and already I can tell my body temperature’s up.
I think we do a great job of maintaining our food intolerances/addictions by not seeing the obvious problems staring us right in the face. (I’ve been eating tomatoes daily for years – long before CFS… I’ve got great skin as a result of the lycopene, but apparently red grapefruit and watermelon are good sources. Might start supplementing with it too.)
I would like to know what or how can one correct MITOCHONDRIAL FUNCTION? Can tell me that? Today I read most of Dr Sarah Articles and I am very surprised with her opinions!! I am from Brazil and got ill in London and after a 21 months battle I can say I am ‘recovered’. My diet was based in a tomato and garlic soup, prescribed by my mother (she is nutritionist), sardines, vegetables, fruits and PLENTY OF WATER, good quality one. Also I rested a lot, relaxation and a bit of neuro-linguistic as I believed it could help me to focus on my recovery and at the moment on ‘my coming back’ to normal life after such a traumatic disease…and believe it can really help!!
Well I hope someone can tell me if, how or what can I do to work out MITOCHONDRIAL FUNCTION with little resources as I am back home?!
My email is simonibelem@hotmail.com
Thanks,
Simoni
The mitochondrial dysfunction is a symptom rather than a primary cause. People with other diseases such as cancer also have mitochondrial dysfunction.
to David R
I believe the Bristol stool scale is that it indicates how the intestinal track is working, and if it works in the normal range, then the chances are that your body is absorbing nutrients and passing the waste before it can produce toxins in the body. This is pretty much my semi-educated guess as I have been no reading on this stuff for a while… Do correct me if I am wrong!
Just reading this to do a bit of research on Myhill because my sanity depends on having something I am currently trying *and* something I will try next. But in truth I have seen such a dramatic improvement from excluding wheat that I don’t know if I will need a next thing to try. I notice another poster has had a similar experience so thought I would volunteer mine.
Diagnosed with CFS, currently severe. Excluded gluten, lactose and caffeine three weeks ago as an experiment. Immediately my digestive symptoms lifted, headaches and swollen glands a few days later. Now the last few days I am seeing big improvements in energy levels as well as a decrease in random stabbing limb pains.
Tested and retested for Coeliac, negative. However when I eat wheat I now have to run to the bathroom within minutes, even tiny amounts. Probably I can eat the other foods I excluded but currently I am leaning towards something vaguely Paleo out of enthusiasm and fear of relapse. The lectin stuff is interesting since I think beans have been bugging me too, though nothing like the same extent as wheat has.
Forgive me for being so naive but all of this information about cfs is so new to me I don’t know were to start! I was diagnosed with cfs when I was 9 years old and could only managed half days at school for a long time, I believe I recovered fully for a while in my early teens but it came back after a few years gradually and with a vengeance in my twenties. I am now 32 and desperately trying to hold down a full time job. Basic advice would be much appreciated, I have tried homopathy an was under a paediatrician when I was a child. Obviously things have advanced somewhat since then! Maybe I should try the illimination process of wheat first? This is quite difficult as I don’t eat meat or fish. I have taken multi vitamins but to no avail. I feel desperate now as it is starting to have an affect on my relationship and friendships as I keep letting people down. I have seen my gp and asked her to refer me to a ME clinic in Maidstone she has arranged for me to have three blood tests but I have no idea what they r supposed to show! Also I believe I need to only work four days a week but don’t know I my company would be within their rights to let me go if I requested this. Please help! Can I buy the supplements Dr Myhill recommends in a normal health shop? So sorry for the long email Lizzie x
Hi,check out Dr Myhill’s book, put title in google search, it will come up, available on PDF or call her,
” diagnosing and treating chronic fatigue syndrome”
She is spot on! I experience all symtoms that she describe with theory of MITOCHONDRIAL disfunction, especially heart faillure like symptoms, my GP diagnosed me panic attack…!
I am just starting treatment by diet and vitamins with no help or understanding from my GP.
@David R & @Lizzie, IMHO CFS is a systemic illness, and the triggers are very much multi-factor. Relieving the strain on factors helps to allow the body to restore its balance. One very common problem with CFS sufferers is digestion / absorption problems often autoimmune in origin. If your bowels aren’t working then you are not absorbing essential minerals, vitamins, fatty acids, etc.. The Bristol Stool Scale and food passage times are a good indicator of digestive dysfunction. The actual intolerance can vary across sufferers: gluten, lactose, fructose, additives, … You need to find out what works and doesn’t work for you. The BSS is a good indicator of progress.
I used to be largely vegetarian, but I gave this up when I came down with ME. If you have a healthy digestion then you can certainly get all you need from a balanced vegetarian diet. However, if you haven’t then it my end up a hard choice: stay vegetarian or eat fish/meat (+oils/fat) and absorb what you need.
I have looked long and hard for the information that Dr. MyHill provides in her online book here: http://www.drmyhill.co.uk/cfs_book.pdf. I have studied mito problems for about 2 years. My 71 year old spouse had Hep C, transplant in 2000, and was really doing ok until they gave him Ribavirin/Interferon treatment against the virus. This treatment is so toxic, I think he aged 20 years. Couldn’t do anything he did before, used to chop wood, and work for hours in the yard. It was mitochondrial toxicity caused by the treatment, plus, he has to continue to take an antibiotic as part of his antirejection regime. I later heard the treatment killed two healthy 70 year old women; senior citizens, the elderly, do not have the healthy mitochondria to withstand this treatment! I had read about most of the supplements in other publications, but nobody made the connection that the CFS symptoms were actually mito problems from whatever. I am so excited to help hubby follow everything she says, and it is already helping!! Bless you, Dr. Myhill!