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ME/CFS as a Mitochondrial Disease

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Reproduced with generous permission from the April 2008 issue of Dr. Bell’s e-newsletter, Lyndonville News.

ME/CFS is a disorder involving the cells’ energy-producing mitochondria – but it’s a mitochondrial disease like no other, Dr. Bell believes. He explains why it hasn’t been diagnosed, classified, and studied like other kinds of mitochondrial diseases – and why a change may be “just around the corner.”


In the past week I have seen two patients who had an exercise lactate test which showed an elevation of blood lactate after mild exercise [considered a sign of mitochondrial damage]. They were told by their physician that they had “mitochondrial disease.” They were advised to take some vitamins, maybe some CoQ-10, and have a nice day. Like nearly everything else, the term mitochondrial disease left these patients feeling bewildered and somewhat lost.

While I agree that ME/CFS is a mitochondrial disease, this term needs clarification because ME/CFS is a mitochondrial disease like no other.

Until recently, when a child was diagnosed as having a mitochondrial disease, it was a disaster, even a death sentence, for it meant that there were major abnormalities in the mitochondrial or nuclear DNA that regulated energy production. Without energy (ATP) it is impossible to survive. These diseases are called MELAS, Kearns-Sayre, Leber hereditary optic neuropathy, and so on. Nearly three hundred mitochondrial illnesses have been identified from genetic mutations. It is a specialized area of pediatrics, where it is possible to measure severe abnormalities in the mitochondria on muscle biopsy testing.

This is what most clinicians think of when the words "mitochondrial disease" are mentioned, but these illnesses do not, in general, apply to ME/CFS. Many patients with ME/CFS have had muscle biopsies, and most of the mitochondrial tests on these biopsies are relatively normal. We will return to why this is in a bit.

What are Mitochondria?

Think of mitochondria as the power factories of the cell.

  • Nearly every cell in the body has them, usually around 500 or so in every cell.
  • They take in oxygen and glucose (blood sugar) and put out carbon dioxide and energy (ATP).

There are two hundred different steps in this process, and we will quiz you after this article. Actually, all you need to know is that:

  • ATP is the prime energy storage chemical (battery) of the body, and
  • Oxidative phosphorylation (ox-phos) is the complex of electron transport chains that do the major work of conversion.

Because the mechanism of energy production is essential to nearly every cell, a defect will have symptoms in every organ system. Sound familiar? Oxidative metabolism, the ability to utilize oxygen to produce energy, is quite efficient, and it is fascinating to look at the theories of how it came to be part of our cells.

However, when the energy demand is excessive, the cells revert to a more primitive, and less efficient, form of energy production – anaerobic metabolism (metabolism without oxygen). For an interesting study on the anaerobic threshold [point of reversion] in ME/CFS, see the literature review that follows.

When to Suspect Mitochondrial Disease

In a recent review article (Haas et al., 2007) there is a list of symptoms that suggest looking for mitochondrial disease. Among these symptoms are neurologic symptoms such as ataxia (coordination problems), myoclonus (twitching), and encephalopathy (brain injury), exercise intolerance, sensitivity to general anesthesia, and constipation.

A score sheet has been developed to help in when to suspect mitochondrial disease – and most ME/CFS patients would fall into the positive range. For lots of information on mitochondria please go to http://www.mitosoc.org. But remember that they are talking about “conventional” mitochondrial disorders, not ME/CFS.

A Mitochondrial Problem Can Be
Secondary to Some Other Problem

There is another form of mitochondrial disease, or “secondary mitochondrial disease.” In secondary mitochondrial disease the primary problem is not with the mitochondria, but some other problem that messes up mitochondrial function. There are many illnesses where the primary defect ends up causing problems with the generation of energy in mitochondria.

For example, thyroid hormone is needed for successful oxidative phosphorylation. With hypothyroidism (low thyroid) energy production is impaired, and fatigue, weakness, temperature regulatory problems, and difficulty concentrating result. This is one of the reasons that when you start to describe fatigue to your primary care physician, he or she begins to write out a script to test for thyroid hormone.

So What Is the Problem?

Why has ME/CFS not been diagnosed, studied and classified like other mitochondrial diseases? There are several reasons:

a. Mitochondrial disease is thought of by clinicians as a fatal disease of infancy, not one that occurs later in life.

b. Mitochondrial disease is usually thought of as a fixed, structural disease, and ME/CFS is a relapsing, remitting illness with some persons even becoming entirely well.

c. Mitochondrial diseases are hard to diagnose, requiring muscle biopsies and detailed ox-phos testing.

d. Ox-phos testing is often normal in ME/CFS, and this has been the critical piece that has diverted attention from mitochondria.

e. Physicians are used to thinking of organ-specific diseases (liver, kidney, etc), and mitochondria are in all cells.

f. Few physicians have taken ME/CFS seriously until recently, and research in this area has been scant.

Of the above reasons, only reason “d” is important to us here (ox-phos testing is often normal in ME/CFS). In 1990 I did a muscle biopsy study on 10 ME/CFS patients with Dr. June Aprille, PhD, an expert in cellular metabolism. All ten persons had relatively normal ox-phos studies. Although we did not publish this finding, it is consistent with the few published studies that have been done.

How can you have mitochondrial disease when the mechanism tests normal? I think that the answer to this paradox is just around the corner.


If you have a patient with emphysema who is sitting in an armchair, he or she is not out of breath. You can measure the damage in tests, but to make symptoms, you have to “stress” the system – make the patient run up and down stairs. If a person with G-6-PD deficiency [linked to fava bean allergy] is sitting quietly, the blood looks normal. But feed this person fava beans and abnormalities quickly become obvious.

Persons with ME/CFS keep themselves at a balance point. They rest for two hours, then do a half hour of activity, then rest, then do more and so on. The worse the illness, the less overall activity is possible. If a ME/CFS patient does absolutely nothing for a few days, they usually feel pretty good. But go to the shopping mall for eight hours and the crash occurs.

Here is the problem: In the patients studied for mitochondrial disease, they have been resting up (staying above the balance point), and a muscle biopsy done at that moment will probably not show much. But have a ME/CFS patient exercise, and then study mitochondrial function. My hunch is that the ox-phos reactions will be seriously impaired, but this has not been systematically and methodically done. For me, this hypothesis is generated by the VanNess, Snell, and Stevens “Two-day Exercise Test” study described in the next section.

There are lots of studies that implicate mitochondrial problems; Dr. Hirohiko Kuratsune and carnitine; Dr. Suzanne Vernon and genomics; Dr. Kenny DeMeirleir, Dr. Martin Pall, Dr. Paul Cheney, and many others. But this problem cannot be studied in tiny fragments. It is time for a good study to look at the different steps of the body’s ability to generate energy. Let’s hope we get to see it within our lifetimes.

Literature Review – the “Two-day Exercise Test”

In the most recent Journal of Chronic Fatigue Syndrome (Vol 14, Number 2, 2007) there are two articles which may be the first to offer an objective proof of disability in ME/CFS. More importantly, if shown to be correct, they may give us an avenue to test and measure the biochemical abnormality which causes the symptom pattern. I would like to briefly review these two papers and present a case of pediatric ME/CFS which demonstrates the same abnormalities.

In the first of these papers, Margaret Ciccolella, a lawyer, teams up with Staci Stevens, Chris Snell, and Mark Van Ness of the University of the Pacific to review the legal issues surrounding exercise testing and disability(1). As everyone familiar with ME/CFS well knows, insurance companies require proof of disability, which a standard exercise test may or may not demonstrate. However, even if disability is present, insurance companies have been quick to say that the patient was not trying hard enough, or that the patient is de-conditioned.

The second paper of this series by VanNess, Snell and Stevens explains the two-day exercise test and presents results for six patients with ME/CFS(2).

As clinicians have observed, the symptom of “post-exertional malaise” is one of the most distinguishing features of CFS. This symptom is listed as one of the eight in the criteria of the Centers for Disease Control(3), and is central to the diagnosis in the recent Canadian Case Definition(4) and the proposed pediatric case definition(5). It is beginning to look like the symptom of post-exertional malaise is at the root of disability, and may be central to the pathophysiology of this complex illness spectrum.

A person with ME/CFS may be at home for several days doing little except basic activities of daily living. When this patient decides to go shopping, he or she will drive to the mall and shop for one or two hours. During this time, observers would say that the person looks entirely well, not appearing disabled. However, following this activity the patient will experience an exacerbation of pain and other symptoms of ME/CFS. This exacerbation may last one, two or three days, and, in my opinion, the more severe the illness, the longer and more severe the exacerbation.

This phenomenon is known as post-exertional malaise. The symptoms of the illness (malaise) are exacerbated by mental, physical or emotional activities (post-exertional). In an employment environment, the patient may be able to do a job well for one or even several days. However, disability lies in the inability to sustain this normal level of activity. The two-day exercise test is the first to begin to explain this phenomenon.

The exercise test is no different from what has been used for years. The patient exercises on a stationary bicycle (bicycle ergometry) and breathes through plastic tubing to measure the concentration of oxygen and carbon dioxide as well as the total amount of air. The six female patients and six sedentary matched control subjects of the study were all able to achieve maximal exertion. The ME/CFS patients had a slightly lower V02max (maximal oxygen utilization) than controls (28.4 ml/kg/min vs. 26.2 ml/kg/min) and lower VO2 at anaerobic threshold (15.01 ml/kg/min vs. 17.55 mg/kg/min) on the first day of exercise testing.

These values are not dramatic, nor are they statistically significant.

It is on the second day that interesting results are seen. The same test was repeated the following day for all 12 subjects. As is often the case, sedentary controls improved slightly in their ability to utilize oxygen, going from 28.4 to 28.9 ml/kg/min for VO2max and from 17.55 to 18.00 ml/kg/min for oxygen utilization at anaerobic threshold. The CFS patients however worsened in both categories: VO2max fell 22% from 26.23 to 20.47 ml/kg/min, and oxygen utilization at anaerobic threshold fell 27%, from 15.01 to 11.01 ml/kg/min.

To put this into perspective, these values are in the “severe disability” range on the AMA guidelines, and the decline in function from day one to day two cannot be explained by inactivity.

Sedentary or de-conditioned persons do not change their oxygen utilization because of an exercise test. Even patients with heart disease, cystic fibrosis or other diseases do not vary more than 7% from one day to the next. However, the patients with ME/CFS in this study had a significant drop; something occurred because of the test on the first day that interfered with their ability to utilize oxygen on the next day. And this is exactly what patients with ME/CFS have been describing with the symptom of post-exertional malaise.

As the authors state, “The fall in oxygen consumption among the CFS patients on the second test appears to suggest metabolic dysfunction rather than a sedentary lifestyle as the cause of diminished exercise capacity in CFS.”


The results of the two-day exercise testing are objective and not dependent upon subjective symptoms. Moreover, hypochondriasis, intentional falsification, and/or poor effort can be detected by the physiologic parameters. Therefore:

  • The two-day exercise test, if confirmed in a larger trial, could become a clinical trial end point.
  • More importantly, evaluations could be designed which would demonstrate the specific metabolic abnormality generated by the exercise of day one and demonstrated on the second day exercise test.

It would be my hope that these findings be explored without delay.


  1. Ciccolella M, Stevens S, Snell C, VanNess J: "Legal and Scientific Considerations of the Exercise Stress Test". JCFS 2008, 14(2):61-75.
  2. VanNess JM, Snell CR, Stevens S: "Diminished Cardiopulmonary Capacity During Post-Exertional Malaise". JCFS 2008, 14(2):77-85.
  3. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A, Group ICS: "The chronic fatigue syndrome: a comprehensive approach to its definition and study." Ann Intern Med 1994, 121:953-959.
  4. Carruthers B, Jain A, DeMeirlier K, Peterson D, Klimas N, Lerner A, Bested A, Flor-Henry P, Joshi P, Powles ACP et al: "Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols." J Chronic Fatigue Syndrome 2003, 11(1):1-12.
  5. Jason L, Bell D, Rowe K, Van Hoof E, Jordan K, Lapp C, A G, Miike T, Torres-Harding S, DeMeirleir K. "A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome." J CFS 2006, 13:1-44

Dr. Bell's Disclaimer: Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

Note: This information has not been evaluated by the FDA. It is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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37 thoughts on “ME/CFS as a Mitochondrial Disease”

  1. liztom says:

    Interesting that Dr Bell says if a PWME does absolutely nothing for a couple of days they usually feel pretty good. He seems to be talking about a different illness from mine – I’ve spent months in bed unable to do anything and always feel dreadful. I know of lots of others in the same position.

    1. rosedale says:

      liztom, I’ve had ME(CFS) since 1985 and fibro since 1994. Have you pursued a fibro diagnosis? They are very different in some ways, and fibro can knock you down and keep you there. So can ME, but I had improved some with it until I got fibro.

    2. forb says:

      Same here. I would like to think that a cure is found, but I am tired all of the time, without reprieve. Fortunately I seem to be on the very mild end of the spectrum, inasmuch as I don’t seem to need to sleep frequently but only once a night like anyone; but I’m still tired throughout the day all of the time without it being alleviated by sleep (that is, I feel fresher, but never completely recovered).

    3. twinsmom528 says:

      I am so sorry to hear that you are feeling so dreadful. I, too, felt that way for several months (doing nothing) and even once or twice really believed I would die-but I didn’t die-at the time I was angry that I didn’t die, but now I am OK with it because I am actually doing better.

      It was the linking of CFS to mitochondrial disease that prompted me to buy a mild hyperbaric chamber. I went in it for one hour twice a day, breathing 100% oxygen. After several weeks I noticed a difference, and now (using it about 4 months) I am at the point where I can go shopping for an hour or two, but “payback” usually lasts three days or so. But still the hyperbaric chamber gives me a “boost” so even though I don’t feel normal, I don’t feel dreadful either.

    4. uffizi says:

      This article describes me precisely. I’ve been like this for 20 years or more but I pushed myself to my limits to work until I retired. Fortunately I had skills which enabled me to ‘temp’ so I could work a few hours a day and sleep during the evening. I didn’t know what was wrong with me and I tried walking – 5 miles exhausted me and I couldn’t walk and talk. My GP enrolled me in the gym for 3 months and that made me feel worse.

      I live in the UK, I have constantly been told by my GP that there is nothing wrong with me, so I have spent a lot on alternative investigations which showed ‘my immune system was totally shot up’. I’m ‘running on adrenalin’ and much more. My GP finally told me earlier this year I have ME. I felt vindicated, started to research this and came across Dr Myhill.

      My blood tests showed mitochondrial disease. She prescribed magnesium injections every day, along with a host of vitamins, minerals, l-carnitine, coQ10.

      So I’ve been on the supplements for a few months and I am managing my life in much the same way. I have no family around, no one calls to see me and if I don’t feel well enough to go out I see no-one for days. I can’t have magnesium injections as my GP said I cannot be under a private doctor and the NHS. To go private is too expensive, unless I can see a cure or some benefit. I’ve been referred to the ME clinic but have been waiting since April for an appointment. A cop out as far as I can see. What a lonely life I have to look forward to in
      retirement. As I look back over my life, all my energy has gone into survival.

      I think I need some moral support but where from?

  2. chdeevey says:

    I am very interested in your finding regarding Mitochondrial Dysfunction and CFS. As a long time sufferer, I have endured many types of treatments, and though I consider myself “functional”, I still have so many bad days. I exercise as much as possible, but cannot plan on doing this on a regular basis, because I suffer much like the patients in the article. Daily exercise is out of the question. How can I get this test done, and if it proves positive, what actions can be taken, if any? Is there any link to this and adrenal dysfunction, which I also seem to suffer from (does anyone else?)
    Thank you.

    1. DiamonDie says:

      You don’t really need a test, you can try mitochondrial supplements anyway. Carnitine (1-3 g a day, more if you can afford it), coenzyme Q10 (100-400 mg a day, idebenone may be even better but is more expensive), lipoic acid (200-600 mg of alpha lipoic acid, 100-200 mg of R lipoic acid) and D-ribose (10-15 g a day) would be worth a try. Resveratrol might also be helpful – I don’t know of anyone who has tried it for CFS/ME, but it has been approved as an orphan drug for MELAS, a mitochondrial disease (it is still available as a supplement). Melatonin is also thought to protect the mitochondria.

      There are some medications that can help, but they are all very experimental. Dichloroacetate (DCA) has been tried for mitochondrial diseases and cancer, but is not approved for any use. Someone I know started taking it for CFS/ME, but I haven’t heard back from him. IMO the medications are all too risky, but the supplements can be quite helpful.

      I’m not sure if there’s a link between adrenal insufficiency and mitochondrial dysfunction. However, there might be one, considering that almost all of us have adrenal problems.

      “Exercising as much as possible” is usually a bad idea.

    2. chdeevey says:

      Thanks for the response to my question. I am one of the people out there that is sensitive to 99.9% of all supplements, even very natural ones, with no fillers, etc. Therefore, I would need to be tested for any of these before trying to take them. The list above is a lot of supplements. I would prefer to take the more natural approach. But I do appreciate your advice, and will definitely take it into consideration.
      I realize exercise is a bad idea, and I try to limit myself as much as possible. I do find that without exercise I am not happy, as I have been an athlete all my life, and it seems I need that endorphine rush. I would rather suffer with the pain and fatigue than not exercise at all. You could call me a rebel!
      Thank you again for the advise!

    3. DiamonDie says:

      Well, I have a friend who is extremely sensitive to all medications and supplements due to severe CFS/ME (she can’t even take vitamin C or vitamin B12). She has been able to tolerate Q10, lipoic acid and carnitine without any problems (she hasn’t tried D-ribose). If you just want to try one of them, I’d go for lipoic acid. Carnitine also seems to work for most people even by itself. Lipoic acid and carnitine are present in small quantities in the food you eat (and in your body). Q10 is produced by your body as well. Ribose is a kind of a sugar, so I think it might be present in food, but not 100% sure about this.

      I definitely know where you’re coming from with the exercise thing. I used to hate exercise – and then I got sick and now I’d love to do it all the time. The problem is that exercise can also cause long-term problems, not just pain and fatigue for a few days. I used to have progressive CFS/ME, which could have had something to do with the fact that I was too active, despite knowing it’s not a good idea with this illness. Luckily I was able to halt the progression with low dose naltrexone (a medication which increases our natural production of endorphins which in CFS/ME is too low, reducing immune dysfunction, fatigue, pain and muscle weakness).

    4. chdeevey says:

      So, how safe are these products? If I could get these supplements from food, that would be a good way to go. I do know that certain foods, such as walnuts, beans, fennel, etc., are great for assisting the adrenal glands. I have been eating these foods over the last few weeks, and have found benefits in my adrenal function. I am an endorphin junkie, I think. I do exercise, but I never give 100% any more, only about 65-70%. And I never work out until I am exhausted, which is what most athletes like to do (I should know!). I will google some of these supplements you suggest, and see where that takes me.
      Have you ever heard of NAET? It is something I have been partaking in for about 4 years now. It has been an interesting journey, and I am so much stronger for it. I am also a long term sufferer of CFS/FM (8 years now). As it also turns out there were many other problems for me as a child (rickets, heart murmer, crossed eyes, deformed gallbladder), and as a teenager (acne, endometriosis, systemic candidas albicans). Once we put the whole picture together, and uncovered about 16 viruses that were competing in my body, and knocked them all off one by one, my immune system became very strong. I do try to do it the natural way, however. Just because I did the supplement route once, and it seemed to really make me worse. Once I tried to do everything by diet, things seemed to improve dramatically. So I will take your advice, and try to find out how to naturally gain benefits from these products in food.
      Take care, and good health!

    5. bboomer says:

      With all the signs coming out precidicting CFS I was hoping for Adrenal Dysfunction, so I could just pop a cortisol pill daily. no such luck adrenal function completely normal

    6. issnowwhite says:

      Wow, I came across this article from one of the groups I belong too. I want to thank that person for putting this link out there. I found it very informative. I am making copies so when I go to see my doctors, I can give each a copy of this article. My neurologist Dr. O. Gerber of Stony Brook University Hospital in N.Y has been with me many years, I call him my miracle worker. He has been the only doctor and believe me out of many, that has helped me and helps me function as best as I can. He believes I have Mitochondrial Disease and that it points to Mela’s. I have had many, many test by doctors, and I still went down hill with out any proper or good guess of what it could possible be. Till I met Dr. Gerber. He ordered a biopsy, and it showed only some ragged red fibers, not totally conclusive to Columbia Pres. Hospital in NY. I was totally dissatisfied with the service, doctors etc. I was not able to join MDA without a definitive diagnosis either. But yet my Nero. still believes this is what I have, and treats me the best that he can. This article that Dr. Bell has written explains me to a Tee. It was like he was writing about me and my symptoms. My life has deteriorated quite a bit and this has been going on for quite a few years. So thanks to Dr. Bell and his article, hopefully by showing this to my doctors, they can read about this disease me and my Dr. Gerber feel I have. I hope this get a lot of people moving to find out more about this type of disease and testing.

  3. Heatherbell says:

    I am not always in bed, but I do not have one good day!! The small tasks of everyday living (shower, prepare food, etc) are always tiring. But this article also does not address the crash after even brain activity, and the cognitive functions etc. I have read about the mitochondrial dysfunctions before and take the various supplements suggested for this, but notice no improvements. The article is interesting, but does not cover enough I think. I definitely feel worse after shopping, as Dr Bell says, and for days, but I do not feel very well at any time!

  4. PenFlorida says:

    Dr.Bell describes my current experiences exactly. Good day, bad day, depending on how much I do but no accumulating effect
    that could be described as progress. Another piece of the puzzel
    has fallen into place. I’ve been dealing with this over 6 years
    now and maybe off and on my whole life. There have been times when I’m just so sick even doing nothing doesn’t help but that
    is not what I’m experiencing now.
    I’ve been on Cymbalta for 6 weeks and it has helped.

  5. Susan17 says:

    I started experiencing post-exertional malaise 2 or 3 years ago and had to stop exercising completely. When I researched the symptom picture, there was virtually nothing on it. I’m glad to see this topic being addressed and hope to see treatments developed in response to the data. Note to other sufferers: since I began taking Omega 3 oil in the form of fish oil 8 months ago, my muscle recovery time has improved tremendously! Be careful to choose the highest quality of fish oil, though — all fish oil is NOT alike.

  6. questus9 says:

    This is interesting information, and the part about post-exertion fatigue is certainly not news to me, although my fatigue level is always high.

    What if ‘felt’ like reading this though reminded me of seeing Dr. Cheney 20 years ago and listening to him explain the ATP cycle as if ‘Voila!’…I remember listening patiently, and then saying, ‘that’s very interesting, but I just want to feel better, and be able to live my life again’…

    So bravo to all those doing research, but after 20 plus years…I just want to feel better and live my life again. It’s difficult for me to get excited about more ‘interesting information’…

    1. twinsmom528 says:

      It was the link between CFS and mitochondiral disease that prompted me to find out more about mitochondrial disease and a story about a young girl born with a mitochondiral disease who nearly died from it, but her mother saved her through getting hyperbaric treatments for her.

      I bought a mild hyperbaric chamber and use it regularly. It has helped me more than anything else I have tried, though I am not cured yet. I used to be bedridden, but now I can be active at home for several hours a day without “penalty”. Shopping still sets me back for a few days, but maybe more months of treatment will result in more improovemnt.

    2. questus9 says:

      Have you ever consulted an M.D. who works with CFS patients about hyperbaric chamber use before buying and using it?

      Find this interesting, but this is the first I’ve heard of it being used for CFS.

      Where did you find one for sale, and how often do you use it, and how long, etc…

      Sounds like this needs its own topic.

      I’d be interesting in trying anything reasonable.

      Thank you..

  7. Jacquie says:

    I agree 100% that most days we are not well, but I am experiencing a severe increase in symptoms since my vacation and doing all that walking. The pain is everywhere and I can no longer tolerate that. It hurts like hell just to type right now. I also have days where just taking a bath or shower leaves me unable to do anything but stay in bed. Its the nature of the beast within us. At least this doctor totally acknowledges this illness. I’ve met too many doctors who don’t so I appreciate all his efforts. I hope you get some relief soon from your symptoms. Take care.

  8. jmkinsey says:

    I’m with Questus9. This is indeed interesting, but I just want to feel better!

  9. kathyCFS1989 says:

    Before I was diagnosed with CFS in 1990, it was 1989 that I actually got sick. Many doctors at that time were not familiar with it, and either was I. I was in denial for quite a while.
    I was a high income earner ,and had no time for this. I had a fever for at least 6 months,swollen glands,severe fatigue,balance problems,slurring words and talking backwards sometimes. (Quite embarrassing when I was with a client trying to close a million dollar sales job !) I could not do math. Every time I used the calculator I came out with a different balance. I thought I had early alzheimers. My mind raced. I got lost in my own neighborhood while driving !

    Anyway ,the first doctor I went to did some bloodwork. I had High anti-mitochondrial antibodies. And High anti-microsomal antibodies. He gave me anti-depressants. I took one and threw the rest in the garbage. I told him I wasnt depressed ,I was sick. Fix me ! I asked him to do an ANA….he reluctantly did ,and it was positive .

    In 1990 I finally found a doctor that diagnosed me. The blood work at that time had to be sent to California. It was the only place that could do the helper/suppressor ratio. I had EVERY blood test positive at that time , in order to diagnose it.
    In the old days it used to be called “Chronic Epstein Bar Syndrome” because everyone had HIGH anti-bodiese to Epstein Bar. Early Antigen and Nuclear antigen.
    Anyway, I wonder if the anti-mitochondrial antibodies was a warning of the onset of CFIDS ???

    PS- One wierd thing in one of my CFS meetings I would go to.
    I tried to find something in common between us all. One day there were only 7 people in group, and I told them that a month before I started the fever I went to the Key West and swam with the dolphins. The lagoon was very green and not alot of fresh water and I did inhale some of the water. My husband did not.
    Anyway, there were 3 people out of 7 that had swam with the dolphins. A cross-species bacterial maybe ? Who knows. I am sure not everyone that has CFS swam with Dolphins. It may have been a coincidence.

    1. gerardaalderink says:


      I’m very glad with this article. In my opinion it is coming very close to the core of our disease. And yes, have been wondering for some time, why this has not been studied at more locations in the world.

      In our country we have problems with the government not willing to spend money on this kind of studies. They only do a little bit with CGT and GET, which is not good for most of us.

      In the Netherlands the CFS Research Centre in Amsterdam ( http://www.cfscentrumamsterdam.nl/CFS%20intro%20English.htm ), Vermeulen et al. is now in the final stage of a study with more than one hunderd CFS-patients.
      They all do two excercise tests as described in the article.
      They also do many blood tests and psychological tests like Rand 36 and CIS20 in order to exclude other possible causes of fatigue

      Don’t know the exact numbers, but know that the outcome is about as predicted in the article.

      Best Regards to all


      The Netherlands

    2. Jacquie says:

      This article describes exactly what I am now going through and have gone through for quite awhile. Over two weeks ago I pushed myself by walking all over New Orleans while on vacation. Ever since I got back, I’ve been in pain and totally fatigued. I called my doc today for some prednisone as I am not getting better and the pain is getting to me. Thank you so very very much for putting this article out for everyone to read. I also have Hughes Syndrome and rheumatoid arthritis.

    3. barbsigns says:

      I have had Fibromyalgia most of my life but for the last 7 years I have been increasingly “sicker” with wierd “attacks” every 30 minutes–anxiety, air hunger (trouble getting enough air), heart palpatations, nausia, sick all over and profuse sweating.

      I have gone through 25 doctors, surgeons, specialist, tests etc.
      No one knew what was wrong with me.

      After realizing these attacks were not FM and/or hormonal I started doing research while spending days on the couch. I have since been diagnosed CFSID with Epstein Bar, Mycoplasma pn. and (non STD) Chlamydia pn.

      In November 2007 I came across an artical on Lyme. Consulted a “Lyme Literate” doctor (very important what kind of dr.) and guess what–Lyme–late stage. Hard to cure because of the many co-infections the tick passes on.

      New research is showing that Lyme is a “great mimicker” of many diseases such as CFS, FM, MS, Parkinson and many more. Your symptoms, fever, confusion, balace, swollen glands, speech problems, fatigue–they all are what I also had, in addition to those “attacks.”

      Frustration in trying to concentrate (brain fog), falling (broke ribs, bruised all over etc.) off balance, sleep problems, anxiety, pain, and so much more.

      Do some research on line, find a “Lyme Literate” dr. in your area or travel to one and get evaluated. Most of these diseases we have today have an infectious element but test are specific and must be sent to the right lab. Lyme most often will not even show on blood test because it leaves the blood and goes into the cells and the immune system stops making antigens against it. Lyme is contracted from the tick but can also be contracted from misquitoes. Check it out–it’s worth it. Good Luck!!!!!!!!!!!!

    4. BBall says:

      This article really hits at the heart of my experience. I have been diagnosed both with CFS and with a mitochrondial disorder, but by different doctors in different specialties. When I first became very ill in 1997, blood testing showed that my CPK levels were off the charts, and CPK is the primary marker, as I understand it, for mitochrondrial disorders. I had a number of tests done looking for the specific disorder but nothing showed up. Then I had a muscle biopsy. The only abnormality the biopsy showed was a low CPT level. CPT deficiency is one of the recognized disorders of muscle metabolism. However, since my levels were only low and not totally absent, I could not be diagnosed with CPT deficiency. All of this work-up was done in the neurology dept. at Cleveland Clinic.

      After several years of bouncing from one doctor to another complaining of activity intolerance, muscle weakness, etc. I got the diagnosis of CFS from a nationally known CFS specialist. I got the usual advice about CFS but no treatment that returned me to my normal functioning.

      Ten years later I am still activity intolerant. My muscle weakness is considerably worse. I have to be very careful to avoid throwing myself into massive muscle pain. The disks in my back are all moving out of place because my muscles are getting so weak. I have taken the exercise-based metabolic testing mentioned in Dr. Bell’s article. I actually flunked it on the first day, so I wonder what my performance would be like on the second day.

      Last year a new neurologist advised me to again have a muscle biopsy. He said a lot of progress had been made since the one I had in 1997. Based on my history, he is sure I have a mitrochrondrial disorder. He knew nothing about the possibility the CFS might be a mitochrondrial disorder.

      I think there may be a lot of people like me who straddle the line between CFS and demonstrable mitochrondrial dysfunction. I wish doctors like Dr. Bell could get the neurology disciple to study us.

    5. malony33 says:

      How very odd and interesting, Kathy!

      Many years ago, I swam with dolphins also! However, I cannot
      remember – big surprise there – if it was before I became so ill with FMS/CFS (onset was 1991).

      It does make me wonder if there’s a connection…good fodder for a study. Not too many people, statistically speaking, have gone swimming with dolphins.


    6. KathyCFS1989 says:

      Actually, I am thinking of finding a Genetic clinic on the Mitochondrial disease.
      My daughter is having the same symtoms as me now, and although I have given up on it for myself. I owe it to my children to find out. The closest place I found is in California. I know Medicare wont pay for it ,so I will pay cash .It will be worth it , if it helps my children. And maybe there can be treatment finally for me !!!!!!!!!!
      My twins are 41 now, and the oldest (35minutes) now has Raynaud’s Phenonema and Thyroid disease, and Melanoma. She started getting ill around the same age. I was 38. Wait ! She was 38 ! OMG !!
      I dont think it is Lyme. I was in sales, never went in the woods, and didnt live in an area that has alot of Lyme Disease.
      What were your Epstein Bar Antibodies ? Mine were 1:1280 .
      That was YEARS ago, so who knows now.
      I can not believe Nancy Klimas is still working with CFS. My friend went to her at the University of Miami. She was awesome and has some great books out. I intend to buy them .


    7. KathyCFS1989 says:

      WOW ! That is a little creepy. Actually around those years , swimming with dolphins was very popular. Who knows. All I know is that I inhaled Dolphin pee and poop……..in that green Lagoon. What was I thinking. My husband did not . I got the water up my nose, and started coughing as it went down my lungs.
      Who knows what kind of bacteria was in there. Might as well swim in a septic tank ! Yikes But we did have fun…….Dolphins are awesome !

      Also, another interesting fact. We had about 300 members with CFS in Palm Beach County , FL. We sent out a questioneer as to what the profession of ALL the sufferers.
      #1 Health Care Professionals /Nurses
      #2 Teachers
      #3 Sales Reps (that was me)
      #4 Bankers
      NOT ONE HOMEMAKER …………..! ALL Professional people who work and are exposed to alot of other people. So I see some contagion factor there. I think there has to be other factors, like viruses,immune ,etc. I dont think every one in contact with people with CFS would get it. People who have had Mononucleosis maybe which is the Epstein Bar Virus. The HHV6 virus which is Roseola Measles. I am positive for that one also.
      Maybe some day they will figure it out !

    8. malony33 says:

      Kathy, I’m – I was, before disability retirement – a high school teacher in a sick building…mold and bacteria-riddled.

      Other staff who’ve worked there have developed,in percentages that are statistically WAY too high for the total # of staff,
      lupus, crippling headaches that pain specialists cannot help,
      FMS, weird rashes that don’t go away, lung problems, brain tumors (I had one of those,too). God knows what else, since I’ve been retired almost five years. Long-timers are also gone and scattered all over the place in there retirements. So, there’s no way to know what people might develop down the road. SCARY STUFF.

      Yes, I love dolphins also. That swim was an amazing life experience!


    9. KathyCFS1989 says:

      You know, there should be another survey and see what professions every one is .Like I said Teachers were #2.
      Something is going on, but we are in an age where they are playing with fire. Crossing a human DNA with a pig ? We are playing God and it will backfire on us.

      The new thing now is Morgellons Disease. Look it up on YouTube. Look at the News channel reports. Very scary. The CDC has now hired Kaiser Permanente to do research on it.
      Check out these sites : http://www.silentsuperbug.com/
      Florida,California and Texas were the hot spots , but now there are 100,00 people all over the country.
      If I had to deal with bugs, stinging ,biting and sores with wierd threads coming out I would end it all. I could not take it.

      Originally Sir Thomas Browne discovered Morgellons in 1674. I think it is back ,but worse ,they have genetically played with it.For what reason ……I dont know. Many children died back then. Many babies would not nurse because of the stinging and biting. So they wasted away and died. It followed a severe drought. They said these black hairs came out of their skin through an eruption .Here is a little about the discovery of it in the 1600s below :

      A friend of ours went to California last year, and came back with these sores all over him. They said it was an allergy. I am wondering now if it really was. No hugs coming from me !
      It IS contagious. One teenager in California committed suicide,becasue he couldnt stand it anymore. That was on one of the news channels in California that I found on YouTube.

      Also look up Dr. Randy S. Wymore from Oklahoma State University.

      Dr. Randy S. Wymore, an OSU researcher studying a mysterious skin illness called Morgellons disease, is assuring people with the disease that they are not delusional, as some have accused.

      Wymore, assistant professor of pharmacology and physiology at the Oklahoma State University Center for Health Sciences and College of Osteopathic Medicine, says the strange skin lesions that appear with Morgellons disease are also not environmental contaminants.

      The symptoms included strange white or red “fibers” sprouting from skin lesions, sores that would not heal and “white granules and black specks” appearing on patients’ skin. Sufferers also reported chronic fatigue, insomnia, night sweats and constant itching. Wymore confirms there are also nervous system effects that include behavioral changes, cognitive changes and (pain and numbness in extremities).”

      You know , this reminds me of when CFS in 1989-1990 appeared. All the doctors said it was in your head ! In fact they still dont know alot more, except that its REAL .

      Let me know what you think ?

    10. malony33 says:

      Hi, Kathy,

      The name of this disease is ringing a bell; I’ll check it out.

      Boy, aren’t we a pair? I feel as if I’m living in an X-Files

      My girlfriend and colleague, a teacher but also a biologist/
      reseacher, foresaw all these diseases. Our discussions were over my head – jargon – but she believed many new, horrible
      diseases were being brought into the populace because we were
      going into these areas where man had never been and bringing them out – think AIDS. Also, as controversial as vaccines are, she also said that skipping them will come back to bite us in the a##, since it will make the unvaccinated a breeding ground.

      Nice. And we’re already sick.

      Keep the faith,

    11. DiamonDie says:

      They are extremely safe and they have loads of benefits. E.g. lipoic acid prevents cancer and Alzheimer’s and Q10 is so good for the heart it is used to treat congestive heart failure. Unfortunately I don’t think it is possible to get sufficient quantities of them from food. It might be possible by eating very high quantities of something like spinach, but it’s difficult to find information about how much of these things the foods actually contain. You could get carnitine by eating loads of red meat, but you probably know that isn’t very healthy otherwise. And since D-ribose is taken in doses of 10-15 grams a day, even if it’s found in food I doubt you can manage to get it in sufficient quantities to have any effect.

      NAET is quackery. It only works through the placebo effect. If you have benefited from it, good for you, but there are cheaper ways to treat allergies with placebo. Anyone who told you that you had 16 viruses in your body was making it up. Unfortunately there are many practitioners who are just looking to make money off vulnerable people. They know how powerful the placebo effect can be, but the patients don’t know it. Here’s some real information about NAET: http://www.chirobase.org/06DD/naet.html

      This is just the perspective of a medical writer (who has had CFS/ME for eight years, just like you). I know you probably won’t believe what I’m telling you in the previous paragraph, but it is true. As far as quackery goes, NAET is harmless, just like homeopathy, but I bet it’s not harmless towards your wallet.

    12. sydneysailor says:

      I recently experienced my highest energy levels after suffering from chronic fatigue for the past five years. I had just come to Australia and was on a break of approximately two months before commencing study here. In this time I gradually built up my fitness to the extent that I could cycle at an intense speed for 60km approximately every second day in addition to swimming 50 laps of a 25 meter pool without pause. The days in between were spent exercising to a measure of roughly 50% but still above what the average person would exert themselves to.
      Since i returned to my studies at university and experienced some prolonged periods of high stress due to the strain put on my concentration I have gradually deteriorated and more rapidly since I contracted a cold that I am close to incapable of fighting due to the abnormally insufficient immune system I have due to CFS. My main point is that I believe a level of high physical fitness can be attained in some cases of chronic fatigue but the main obstacle is maintaining a stamina of concentration that allows one to function in a typical everyday environment consisting of frequent mental challenges.
      I wonder if similar results have been concluded from any other studies undertaken?

  10. Wagar says:

    This miochondrial information was not part of my theory. Oh well. As a kid I now figure I had ME-CFS, ADHD and depression but who knew what to do with strange symptoms? Sixty years ago no one would have believed these diseases. My older brother came back from the service sweating and twitching and in a few years he couldn’t make a decent living. My next older brother, after having early business success, was ruined by his late thirties.

    All of us suffered great fatique and depression, some of us drank too much and two of us could not settle down. Our Grandpa who immigrated from Denmark also suffered greatly from fatique, and having learned ME-CFS is genetic, I based my theory on his passing it to us. Now I don’t know.

    I still have depression, ADHD, ME-CFS and now diabetes. It’s all being treated but without the help, I would have gone looney decades ago. Can anyone enlighten me? Is it genetic?

  11. jjoys says:

    I had a little flag go up in my mind too when I read this. I might feel a little better after a day or 2 of rest, but i wouldn’t call it okay. But I think Dr. Bell may have just had a poor choice of words. Surely he knows ME/CFS better than this. I do wish docs would be more careful about their choice of words.

  12. wprwl says:

    I’ve been struggling with CFS symptoms since 1998, after a respiratory infection, and have an official diagnosis of fibromyalgia (which I think I’ve had to a degree my whole life without being aware of it). Over the years, I’ve tried to maintain a basic fitness level and have been able to build up a fair degree of cardio fitness by using great caution and persistence, limiting the number of workouts. I had built up to being able to walk, hike, and even run (VERY SLOWLY) 3-4 miles up to 2x a week (more often once a week, with quite a few missed weeks), 3x if I was very lucky. As long as I progressed slowly, I didn’t feel too terrible afterwards. Granted, not able to do much else, but more of a good tired feeling than the nasty fatigue other stressors produce. I can’t do anything like that now, as I have had a bad year and let my exercise slip, but I still stretch, swim and do water aerobics, lift light weights and walk every once in a while.

    What I found I could not tolerate to any degree was regular weight lifting, particularly using Nautilus equipment. I was surprised, as the resistance equipment at Curves hadn’t bothered me and I had used the Nautilus in college prior to 1998. The Curves equipment modifies itself to your body; the other doesn’t, and after a few weeks’ effort, during which I struggled to complete a moderate Nautilus routine very slowly 2x a week, I had to quit. My brain was completely scrambled; I knew it was time to end it when I sat in a parking lot, realizing that I had “lost” a Target store I had been in dozens of times, and that I could sit in my car all night and still not remember where I had put it. A long way to a point: while I never function very well, my metabolism fares far better w/a cardio workout than serious weight training. Is this unusual? Would it affect the 2 day testing proposed?

    Another question: While I have some pain and muscle fatigue, my most bothersome symptoms by far are cognitive dysfunction and a seriously disrupted circadian rhythm, which I haven’t yet been able to correct. How do these problems fit into the mitochondrial thesis?

  13. Allie2727 says:

    I also see Dr Myhill. It is not true that you cannot have a private doctor and still get treated by your GP – on the injections, I just taught myself how to do it when my GP would not help. As this was posted a while ago, I guess you may have figured this out by now! I really hope more research is done on this soon – and, more importantly, that it gets some publicity. Incidentally, doing the Myhill treatment has changed my life. I am still very sick, but no longer bedbound.

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