Thursday, June 10, 2010

Abundant Evidence ME/CFS is Neurological - Harvard's Dr. Komaroff

Abundant Evidence ME/CFS is Neurological - Harvard's Dr. Komaroff
Report from - Wednesday, 09 June 2010:
On April 24, the Massachusetts CFIDS/ME & FM Association hosted a presentation on “The Latest Research on CFS” by Dr. Anthony L Komaroff, MD. Dr. Komaroff , a professor of medicine at Harvard Medical School and Editor in Chief of Harvard Health Publications, has treated hundreds of ME/CFS patients over the past 25 years.

Excellent Videos Available Free Online (Full Text Scripts Promised Soon)
Now, with Dr. Komaroff’s permission, the Mass. CFIDS Assoc. has made Dr. Komaroff’s lecture and extensive audience Q&A available on their website ( The videos take time to download, but the visual and sound quality are first-rate.

Owing to Dr. Komaroff’s unimpeachable reputation and status in the medical community, patients and advocates may wish to share links to these highly organized and informative videos with their own healthcare providers.

Easy to Follow
You can view each session from beginning to end - or click on any of the numbered topics listed down the left side of the screen, to view only those parts. (For a preview of the topics & questions covered, see our listings, below. If you’re like us, you may start with ‘dessert’ – the Q&A.)

Notable Quotes
In answer to question # 21 in the Q&A session – “Would you classify CFS as a neurological disease?” Dr. Komaroff stated:

"I would certainly say, as I have said today, that there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. So that makes it neurological. That's why I think it makes sense, as Dr. Gurwitz said, to call it Myalgic Ecephalomyelitis or Encephalopathy, because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case."

In answer to question # 26 - “With respect to the study on the presence of metabolites after exercise, how do patients with depression compare to CFS patients?” Dr. Komaroff stated:

“As a doctor who has taken care of patients with major depression for many years I can’t recall a single instance of someone with major depression saying, ‘The strangest thing has been happening to me, doctor, whenever I do anything, any physical exertion, the next day I feel completely beat up.’ I have never heard that from any patient with any illness other than chronic fatigue syndrome.”

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VIDEO: Dr. Komaroff’s Pre-prepared Q&A – 22 Minutes
Link to video

Preview of questions:
1. Intro – (Dr. Komaroff mentions his responses are based on 25 years’ experience managing hundreds of ME/CFS patients)

2. Would having patients write their stories in detail help the process of discovery of this illness and how to treat it?

3. What is the trajectory or course of the illness in people, in your experience?

4. What is the best way to transition children from pediatric doctors to adult doctors?

5. Have you treated patients with anti-virals with any success?

6. If a CFS patient had persistent lab evidence of Epstein-Barr virus reactivation, would you treat it?

7. What are the objective biological markers that distinguish CFS from MS or Lyme disease?

8. Is there a link between CFS and chemical sensitivities?

9. How does Fibromyalgia fit into CFS?

10. Is there any treatment that helps?

11. How can I best determine if I have an HHV6 infection?

12. What do you think about the proposal to classify CFS in the Somatiform Disorder section of the new Diagnostic Statistical Manual?

13. Are new cutting edge state of the art treatment approaches like stem cell therapy likely to offer any answer for CFS?

14. Can you give us an update on Ampligen?

15. Are there new clinical protocols that MDs should follow in treating someone with CFS and should a patient go to an infectious disease doctor?

16. Can the mitochondrial link be exploited by mitochondrial manipulation?

17. Can CFS be triggered by exposure to a dry cleaning product and is this a common reaction?

18. What are some other examples of illnesses caused by multiple viruses that wind up with the same symptoms as CFS?

19. Why does the CDC ignore or deny abnormalities and say no tests in CFS?

20. Of the 11% of patients in the Australian study who developed CFS, was there a difference between those who had a slow onset versus a sudden onset?

21. Would you classify CFS as a neurological disease?

22. What have been the most effective treatments to manage the symptoms and are they all palliative?

23. Are there any current or upcoming XMRV studies in the Boston area?

24. What do you think of treatment with low-dose Naltrexone?

25. Is there a list of local providers who specialize in CFS?

26. With respect to the study on the presence of metabolites after exercise, how do patients with depression compare to CFS patients?

27. Do you think there is a connection between CFS & Mercury? Autism? Food sensitivities?

* * * *
VIDEO: Dr. Komaroff’s Presentation on “The Latest Research on CFS” – 1 hour
Link to video -

Preview of topics:
1. Intro

2. CDC case definition of Chronic Fatigue Syndrome

3. Chronic Fatigue Syndrome research

4. Severity of CFS

5. SF36 Health Status Subscale Scores

6. Lost productivity from CFS: CDC analysis

7. Is CFS real? (Biological markers? Understand how symptoms are caused?)

8. How is the body affected by CFS?

9. The brain in CFS

10. Evidence of brain involvement in CFS

11. Protemic markers in spinal fluid

12. Lactate in spinal fluid in CFS

13. EEG: Spectral coherence studies

14. Molecular sensors of fatigue & pain

15. Fatigue & pain sensing molecules

16. The immune system in CFS

17. Immunological abnormalities in CFS

18. Energy metabolism in CFS

19. The energy metabolism hypothesis

20. Genetic component to CFS

21. Gene expression studies in CFS

22. Infections in CFS

23. Infection: Temporary vs. permanent

24. Infections & syndromes: More than one microbe

25. Viruses and CFS

26. Infectious agents linked to CFS

27. Documentation of post-infectious CFS

28. Enteroviral infection in CFS

29. Enterovirus VP1 Ag in Gastric Antrum

30. Neurological findings in patients with CFS

31. HHV-6 and the brain

32. Active HHV6 infection in CFS: Study results

33. XMRV (Retrovirus) in CFS (slide 1)

34. XMRV (Retrovirus) in CFS (slide 2)

35. XMRV (Retrovirus) in CFS (slide 3)

36. What if XMRV is associated with CFS

37. Viruses and CFS – my current view

38. Concluding thoughts

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Anonymous Toria said...

Thanks for posting - this is really encouraging to read!

June 15, 2010  

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