Several recent blogs have suggested mitochondrial problems may exist in chronic fatigue syndrome and fibromyalgia – but do they look like mitochondrial disorders? That’s the question part I of this blog is tackling.
Chronic fatigue syndrome and fibromyalgia can cause so many symptoms that they can lead themselves to a variety of diagnoses. That’s a problem, but it turns out that the sheer number of symptoms found in these disorders may be a clue. Not many diseases can produce such a rich broth of symptoms.
Those diseases that do, tend to have systemic (body-wide) impacts or effect the brain. They include such disorders as autoimmune diseases, post-viral syndromes, neurodegenerative disorders, the so-called functional syndromes (FM, ME/CFS, etc.) and some mood disorders.
What about mitochondrial disorders? Hundreds of mitochondrial diseases exist, but many do have systemic effects. In fact, the United Mitochondrial Foundation (UMF) recommends that doctors think “mitochondrial disease” when three or more organ systems are affected. The Foundation also lists “CFS-like illnesses’ as possible indicators of a mitochondrial disease.
The UMF’s 40-plus mitochondrial disease symptom list is a long one and ranges from blindness to migraines to fainting. Because so many mitochondrial diseases exist it’s impossible to strictly compare the symptoms of “mitochondrial disease” to those found in ME/CFS and FM. We can, however, look at general symptom patterns – and that’s what this blog will do.
Let’s look at how the symptoms in mitochondrial diseases and ME/CFS and FM compare.
It’s perhaps not surprising that people with mitochondrial diseases often exhibit exercise intolerance. If the mitochondria – the energy producers in our cells – aren’t working well then our muscle cells are not going to be able to produce the energy we need to exercise.
People with mitochondrial disorders tend to be able to exercise only in a limited fashion. Fatigue is not necessarily always present but it and weakness often comes quickly once activity is initiated and rest is needed to build up energy levels again. After rest no clinical evidence of weakness is often present.
Weakness – the inability to generate force – is an important symptom. Weakness is different from fatigue. Fatigue is a sensation associated with pain, weariness, etc. One can feel fatigued without being weak.
I’m unclear on the status of weakness vs fatigue in ME/CFS. Most studies suggest weakness is not present but the two day exercise studies suggest that the inability to generate force after exercise; i.e. weakness is a major issue.
According to MitoAction exercise and physical activity was not recommended for mitochondrial disorders in the past because of concerns about cellular muscle damage. Now, exercise in small amounts is recommended into order to avoid deconditioning – which reduces mitochondrial density – and to increase mitochondrial and blood vessel density, enzymatic activity and improve quality of life.
Post Exertional Malaise (PEM) or Relapse (PER)
Post exertional malaise or relapse is a major problem in ME/CFS and FM and it occurs in people with mitochondrial diseases. Whether they experience the same kind of PEM that people with ME/CFS or FM experience however, is unclear. (It’s not at all suggested that people with ME/CFS and FM all experience the same type of PEM.)
The “global fatigue” people with mitochondrial disorders can experience after exertion, which causes slowed thinking, confusion (and in some “an unmasking of behaviors normally under control”) sounds very much like ME/CFS and FM.
The muscle symptoms after exercise (pain, cramping and/or muscle spasms with or without tenderness and/or feelings of heaviness (cement legs) particularly in the muscles used) bear some similarities.
The quick appearance of muscle pain in Mark Vink’s legs after very mild exercise appears to be highly suggestive of mitochondrial problems. My symptoms after too much walking, on the other hand, tend to be less specific and more global. They include fatigue and burning pain sensations across my body but my legs are not particularly affected.
The small muscles can be affected in mitochondrial disorders as well. Too much writing, for instance can cause, penmanship, for instance, to suffer. Tachycardia – rapid heartbeats – can occur. Blurred vision can be caused by eye muscle fatigue. (There’s no mention of the “floaters” often seen in ME/CFS).
Signs of significant autonomic dysfunction appear to be often found in both mitochondrial diseases and ME/CFS/FM. They include rapid or slowed heartbeats, problems standing, heat or cold intolerance, unusual sweating, spontaneous pallor or flushing or mottling and gut and bladder problems can occur. Whether these symptoms worsen after exercise was not clear.
Sleep problems including sleep apnea, unrefreshing sleep and daytime fatigue are common in mitochondrial disorders and ME/CFS and FM. Not surprisingly, so is emotional distress.
Breathing problems can be found in both. Dr. Natelson has found that hypoventilation – a short, rapid breathing pattern – is fairly common in adult ME/CFS patients. Breathing problems tend to show up first in mitochondrial disorders during periods of increased oxidative stress (infections, following exercise or emotional distress) but can become more permanent over time.
They appear to be caused by the same problem that’s been suggested by Staci Stevens for ME/CFS – fatigued respiratory muscles in the chest and diaphragm. Staci Stevens has noted that the respiratory muscles are among the most active in the body.
The tendency for infections to cause long term fatigue that remains after the infection has been resolved, occurs in mitochondrial diseases and, is, of course, reminiscent of ME/CFS. It suggests that an autoimmune process affecting the mitochondria could be triggered by an infection, in ME/CFS or FM.
It’s clear then that major symptoms found in ME/CFS – fatigue, post-exertional malaise, sleep and cognitive issues – are also found in mitochondrial disorders. While muscle spasms and pain can occur in mitochondrial disorders they don’t appear – at least from this overview – to achieve the kind of prominence found in fibromyalgia.
Mitochondrial Diseases or Mitochondrial Dysfunction?
Both symptoms and several study findings suggest mitochondrial problems may exist in ME/CFS and FM. If they do it’s not clear if a “mitochondrial disease” is present; i.e., if the mitochondria themselves are defective or if mitochondrial function is being inhibited due to other factors such as insufficient oxygen and blood flows.
Mitochondrial diseases that are genetic in origin usually show up early in life but mitochondrial diseases can also be triggered later in life by infections, autoimmune processes, drugs or “other environmental factors”. Epigenetic processes that affect the expression of mitochondrial genes over time, may play a role as well.
One process that could be occurring in ME/CFS involves the blood vessels. Dr’s Fluge and Mella suggest that autoimmune processes may be reducing blood flows and possibly impairing mitochondrial functioning.
A disease also does not have to be considered a “mitochondrial disease”, for the mitochondria to be affected. The United Mitochondrial Disease Foundation states that evidence of mitochondrial dysfunction can be found in many diseases including Alzheimer’s and Parkinson’s diseases, amyotrophic lateral sclerosis (ALS), multiple sclerosis, Sjogren’s Syndrome, lupus, rheumatoid arthritis, mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke.
The CoQ10 Question in Fibromyalgia and ME/CFS
CoQ10 plays a critical role in the generation of aerobic energy (ATP) – the source of about 95% of the energy in our bodies. Two-day exercise studies suggest, however, that aerobic energy production has taken a significant hit in ME/CFS. Several ME/CFS doctors use exercise tests to define safe but usually very low aerobic energy levels for their patients. The collapse of the aerobic energy production system suggests, of course, that the mitochondria are involved.
Several studies suggest low CoQ10 levels could be contributing to the symptoms found in fibromyalgia as well. A Spanish trial resulted in significant reductions in pain, fatigue and morning tiredness as well as reduced inflammation and increased mitochondrial activity. Similar findings were reported in a Japanese trial of adolescents with FM and CoQ10 reduced pain and headache in FM patients in a third. Finally a small study found evidence of both mitochondrial dysfunction and CoQ10 depletion in the tissues of FM patients.
The Mendus/Health Rising Placebo-controlled MitoQ Chronic Fatigue Syndrome and Fibromyalgia Trial
Saying that MitoQ is a mitochondrial supplement is not really doing it justice. MitoQ is a mitochondria supplement that’s been featured in 180 research papers i.e. it’s a serious mitochondrial supplement. MitoQ says their product – patented by New Zealand researchers to deliver CoQ10 to the mitochondria at very high levels – is 847 times more effective than other CoQ10 formulations. Read more about the difference between ordinary CoQ10 and MitoQ here.
When MitoQ approached me some time ago about offering our ME/CFS/FM members their product in exchange for some feedback I immediately thought of MENDUS. MENDUS is a website created by a researcher and ME/CFS patient, Joshua Grant, that allows health communities to create their own online clinical trials.
Josh was interested in using MENDUS to assess the results of a MitoQ trial but we both thought MitoQ would be leery of such a public assessment of their product’s effectiveness.
We were wrong. MitoQ was fine with a public MENDUS trial. When Joshua suggested that a placebo component be introduced, MitoQ agreed to that as well.
So now we have a twelve week, 100 person (50 ME/CFS and 50 FM), double-blind, placebo-controlled MitoQ trial underway on MENDUS.
The first fifty people with each disease to sign up for the trial and complete their registration with MENDUS will get two bottles of MitoQ; a placebo and the MitoQ. They will take each bottle for six weeks and complete a set of measurements 5 times over that period including a variety of symptoms and cognitive tests on MENDUS.
Others who want to participate in the trial can purchase the supplement at a reduced price on MENDUS. Because the more people entered into the trial the better we hope some people who can’t make it into the free trial will take advantage of this offer. (The purchasers of MitoQ will not receive a placebo bottle).
Some things to note
If you want to be in the free trial you should
- First, send an email to MitoQ at this address (email@example.com) with the subject heading “Study Enrollment CFS” or “Study Enrollment FM” depending on which condition you have. (If you have both pick the predominant one). MitoQ will send you an email with information about the study and how to proceed, including the links to register with MENDUS and to the study.
- If you haven’t registered with MENDUS, immediately register for MENDUS. Then send your name, your MENDUS ID and your shipping address to MitoQ in the reply email to them.
- MitoQ will send two bottles to you; the MitoQ bottle and the placebo bottle. These will be marked Bottle 1 and Bottle 2. You should begin with Bottle 1. But, you will not know which is MitoQ and which is placebo.
- Be sure to read the Project Information Form, the Detailed Study Instructions and sign the Consent Form on the MENDUS website, otherwise you will not be able to participate.
- If the 100 places have already been filled you’ll be informed of that when you initially contact MitoQ. In their reply they’ll include a 1-time use 50% discount code you can use to purchase the product and register in the trial.
- Anyone anywhere in the world can be in the trial.
- Please note that because MitoQ is putting more pills than usual into the bottles the bottles will not be sealed as they usually are. Instead MitoQ is putting tamper-proof tops on the bottles.
- If you’re currently taking CoQ10 you agree to stop taking it for a week before you start the MitoQ trial.
- Please note that the low doses of MitoQ (20 mgs/day) in the study translate into higher doses of other kinds of CoQ10.
- Questions about MitoQ itself should be directed to MitoQ (firstname.lastname@example.org). Questions about the study can be sent to Joshua (Mendus.email@example.com).
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