Ask the Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Doctor
Dr. Lucinda Bateman is a specialist in ME/CFS. Since opening her Fatigue Consultation Clinic in 2000, she has treated over 1000 patients.
Ask the Doctor: Will it help me to eliminate gluten and milk?
Answered by Dr. Lucinda Bateman
Q: Will it help me to eliminate gluten and milk?
A: Eliminating gluten or milk is likely to help only if you are gluten sensitive or milk intolerant. Although some laboratory tests are available, the most reliable way to know is to make systematic dietary changes and observe symptoms.
Discovering these food sensitivities and treating them can be immensely helpful. Unfortunately, there are probably lots of people with chronic illness symptoms that won’t respond to these interventions.
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Can ME/CFS Be Caused by Lyme Disease?Answered by Dr. David S. Bell
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By David S. Bell MD
Question: 1) Can Lyme disease result in permanent ME, even if all signs of the bacteria are gone? Can the Borellia bacteria that causes Lyme Disease also cause ME? Which is worse: severe ME, or severe Lyme Disease?
Answer: These three questions all revolve around chronic Lyme disease, and will be answered differently by every ME/CFS specialist you ask. It is a subject that I had thought about a great deal, and I am aware that is a great deal of contention in the opinions. But with the understanding that we do not know all the answers, I will put forth my opinion.
In 1986 we had, over a two-year period in Lyndonville, New York, a large group of children and adults who came down with what we are now calling ME/CFS, or perhaps SEID1. Central to this outbreak was a group of children who suddenly became ill in October, 19852. Among their many symptoms was very prominent lymph node tenderness, and after consulting with the New York State Department of Health and the CDC, it was decided to biopsy the armpit lymph nodes in a group of these children. Although none of them had the characteristic Lyme disease rash, it was my thought that they could have Lyme disease, although the appearance of a cluster outbreak argued against this, as did the rare prevalence of Lyme disease in this area. The families signed the permissions and I explained to the children what was to happen, and one day we performed an axillary (armpit) lymph node biopsy on all eight children.
The tissue was carefully handled and divided into portions to study as much as possible on them. The standard tests were all normal, and routine viral and bacterial cultures were negative. All samples were sent for silver staining, at that time, the ‘state of the art’ to look for Lyme disease, and one lymph node came back positive. Further analysis on this positive sample was not done. Based on this positive, I treated the children with doxycycline which appeared to have a beneficial result. At a later time, a double blind study with doxycycline and placebo did not show benefits. To my regret, none of this was submitted for publication.
In the intervening years, I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism.
This brings us to the underlying infectious organism that causes ME/CFS. I had the good fortune to study persons with post Q fever debility syndrome under the guidance of Professor Barry Marmion when I delivered to him some raw milk I was suspicious of. He had been following abbatoir (slaughterhouse) workers with established Q fever who did not become well with the standard treatment3. In 2004 the CDC and Australian government did a prospective study looking to see who became ill following infection with Q fever, Ross River virus and Epstein-Barr virus in a well-designed and carefully controlled study4. One year after infection with one of these agents 6% developed CFS by the Fukuda criteria5. Of the many remarkable things in this study, it was 6% of those with EBV, 6% with RRV, and 6% with Q fever, three completely different organisms. To me, this meant that many infections could initiate the process of ME/CFS, including infection with the Lyme organism. That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs.
However, in my thinking, ME/CFS is defined by the symptoms, and not the initiating organism. If the disease turns out to be autoimmune6, this makes very good sense. It is as if several people got splinters, would we call them different injuries if one person had a maple wood splinter and another oak?
So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. If this is true then the three questions above are easy to answer.
1. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. 2015.
2. Bell K, Cookfair D, Bell D, Reese P, Cooper L. Risk factors associated with chronic fatigue syndrome in a cluster of pediatric cases. Rev Inf Dis. 1991; 13(Suppl 1): S32-8.
3. Marmion B, et al. Q Fever persistence of antigenic non-viable cell residues of Coxiella burnetti in the host - implication for post Q fever infection fatigue syndrome and other chronic sequelae. QJM. 2009; 102(10): 673-84.
4. Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon S, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006; 333.
5. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994; 121: 953-9.
6. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).
Is CFS an onset to fibromyalgia? What is the difference?Answered by Dr. David S. Bell
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Q: I was diagnosed with CFS in 1994, and fibro in 1998. Was CFS an onset to fibromyalgia? What is the difference?
A: A long time ago I wrote a book, and in it I described “lumpers” and “splitters”. A lumper is one who gathers all similar vegetables in one basket and carries it to the house. A splitter separates the squash from the eggplant and carries them to the house in two separate baskets. I have always been a lumper, although I recognize the need for the splitters at times.
Take for example the question of Down’s Syndrome. When I was in training, Down’s Syndrome was known as trisomy 21, that is an extra chromosome 21 present first described by John Langdon Down in 1866. It caused a specific abnormalities in facial appearance, cognitive issues, growth and other areas. It was thought to be very specific and unique to this extra chromosome 21.
Now, however, we know that the same syndrome can exist with pieces of chromosome 21 in excess, or in the attachment of the long arm of chromosome 21 to another chromosome, a process called translocation. A lumper would call these variations irrelevant as the clinical disease is basically the same. A splitter would say that they are different genetic diseases.
I feel that ME/CFS is the same basic illness as fibromyalgia, and I hope no one has a stroke because I have said this. It is well known that FM is very common in ME/CFS, and I published a paper saying that in kids, 75% of those with ME/CFS also have fibromyalgia. Depending upon the criteria used, this figure would be different. In one family I saw in Lyndonville, several kids became ill. One had very little pain, clearly a case of ME/CFS. In a sibling, pain was by far the most severe symptom, but because they both became ill from the same family, they must have had the same illness.
Another point that is important is that at the beginning of whatever illness this is, fatigue and viral symptoms predominate. After several years, the muscle and joint pain becomes more of a problem. So in your question about two diagnoses separated by several years, I see this as the natural history of the disease, not the presence of two separate illnesses. Best of luck. David Bell, MD
Do you think ME will ever be cured or even significantly treatable?Answered by Dr. David S. Bell
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Q: Do you think ME will ever be cured or even significantly treatable?
A: With this particular question, the answer is definitely yes. Even now with the recent Rituximab paper, 64% of patients treated returned to normal or near normal activity1. But do not expect this treatment to be available soon. Medicine moves very slowly and it may be ten years unless the FDA should choose to “fast-track” these studies.
I have always believed that ME/CFS is treatable. Firstly there is no proven tissue damage in the disease, and symptoms can be removed temporarily with a number of non-approved treatments that increase cerebral blood flow. And all providers that have patients with ME/CFS have seen some who spontaneously recover. Which means that it is at least possible. If it turns out that this disease is an autoimmune disease, all the more reason to be optimistic. I can remember back in the mid 80’s saying that this disease could be cured, and here it is thirty years later saying the same thing. But someday……
1. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).
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