It is refreshing to see such a large and diverse professional group of people who are actively working on improving our understanding of this horrible disease. I think it is exciting to have so many minds from different countries attacking this problem in many diverse ways. It seems that a groundswell of support has begun and now encompasses top professionals in all of the key areas of clinical research. One of the common threads expressed by many of the presenters was the acceptance of looking at the entire mind-body connection; the disease must be considered in its entirety if we are going to make adequate progress.
Dr. Anthony Komaroff summed up the conference by focusing on some of the studies presented over the weekend:
* Dr. Steele’s study of CFS symptoms among American Gulf War Vets showed that the prevalence is much higher in the Vets, than the level of CFS reported as a percentage of the total population. Gulf War Vets also had other symptoms such as diarrhea, headaches and night sweats that are not as common in CFS symptomology. The Gulf War Vets also showed CFS symtomology aged ten years younger than the general CFS population.
* Dr. Nisenbaum of the CDC conducted the first study to actually identify patients with CFS, regardless of whether they had already sought treatment for CFS. The goal was not merely to focus on just on those people already aware of the disease but to look at the course of the disease during the year following diagnosis. Of this small sample of 35 patients, they were unable to show an association between illness improvement and illness duration. However, approximately 46% improved somewhat or got better while 32% did not see improvement. The remainder received other diagnoses, which explained their fatigue.
* Dr. Baraniuk’s study showed that the sympathetic nervous system dysfunction is integral to CFS pathology. Blood may pool in the legs, leaving less blood circulation for the rest of the body.
* Dr. Snell’s study revealed that both abnormal RNase L activity and low oxygen consumption were observed in most patients. This may demonstrate that their extremely low tolerance for physical activity may be linked to abnormal oxidative metabolism perhaps resulting from defective interferon responses.
* Dr. Maher presented a study, which showed that the NK cells killer granule, perforin, is hampered with CFS patients. This leaves the immune system less able to fight infections.
* CFS patients who are given cognitive tasks feel they are working harder to solve the task than non-CFS patients. Actual brain imaging shows, in fact, that more areas of the CFS brain are involved in solving this task than non-CFS patients. Either CFS patients must involve more of the brain to complete the task or the CFS brain itself taps other areas of the brain to accomplish the task.
* Dr. Gracely used brain imaging to show that FM patients’ brains respond differently to stimulus than CFS patients’ brains. When FM patients were given the same stimulus that was given to healthy patients they felt more pain—the heightened sensitivity that has been expressed by patients is seen in this imaging.
1. Provigil (Modafinil)
* Dr. Rammohan presented a study investigating the benefit of modafinil, a wake-promoting agent used in the treatment of narcolepsy, in MS patients. Nearly two-thirds of MS patients experience fatigue on a daily basis. The result was that Modafinil significantly improves fatigue and daytime sleepiness and is well tolerated by MS patients. This is exciting not only because of the fatigue implications but also because a new study is underway regarding the effectiveness of Modafinil for CFS patients.
2. Lymph Node Extraction
* Dr. Klimas, following on the success of similar procedures for other immune compromised states, discussed an experimental treatment to help repair the CFS immune system. In many CFS patients, the TH2 immune system is excessive, while the TH1 immune system response is not strong enough. Klimas’ group extracted lymph nodes from thirteen CFS patients with the goal of turning the TH2 cells into TH1. After these cells were cultured for 10-12 days, they were infused back into the donors who were then monitored for 24 weeks.
Even though this was a small study, the positive results on word retrieval fluency and other cognitive tests indicate that this test should be expanded. The downside of this procedure is that it is extremely costly.
Dr. Clauw had some other observations regarding CFS and FM:
* At least half of CFS/FM and MCS patients have overlapping disease symptoms.
* The following stresses and biological responses have been shown to cause CFS or FM:
- Infections, EBV, Lyme parvovirus, Q Fever
- Physical trauma (e.g. accident)
- Hormonal Alterations (e.g. thyroid problems)
- Drugs (due to their side effects)
- Catastrophic Events (war but not natural disasters)
- Dr. Clauw maintains that after every war, there is a subset of American vets who have reported CFS/FM symptoms.
Dr. Clauw also reported on his experience in treating CFS/FM patients. He mentioned that he used to focus entirely on the pharmacological approach but has since changed it to include physical exercise (primarily aerobic) and CBT(cognitive behavioral therapy). He stressed that FM patients need to first experience some pain relief before they can consider even the slightest level of exercise (like walking). He also said that he became a supporter of including CBT, after seeing studies demonstrating its benefits for helping patients to deal with their pain. In one such study, Dr. Williams showed that adding CBT to standard medical care improved the rate of treatment success for physical functioning by 48%. One patient who had been involved in CBT spoke highly of it primarily because he said that it gave him some additional coping strategies.
Drs. Dan Peterson, David Bell, and Jacob Teitelbaum all stressed that CFS is treatable and that practitioners need to focus on those treatments that are currently available. Dr. Bell also weighed in on the benefit of common sense exercise. He said that his experience is that it, “increases the speed at which you get better.”
During some of these presentations the patients spoke out. My perspective was that many patients were frustrated by the relatively slow progress in understanding this disease, especially in the United States. They felt that Europe was ahead of the US in trying to understand the disease and its causes. Dr. Peterson expressed that some of the delay in America could be traced to the government’s slow acceptance but that progress was now being made. Other patients think that more should have been made of environmental toxins and chemical exposures, just as Paul Cheney and Rich Carson have advocated. Yet other patients seemed to feel that his conference was more for the doctors and researchers and less for the patients.
One last comment I would like to make about the conference. Any time you get a group of such esteemed researchers and patients together, there may be some frustration. However, in the end we will all benefit by more of these types of meetings. I would like to thank the AACFS for all of their hard work to organize a conference of this magnitude. I would also like to thank all of the doctors, researchers and scientists for all of their on-going hard work - it is this passion that will eventually lead us to victory over this horrible affliction. To the patients, I say that you have every right to expect as much as humanly possible be done to end your misery. To everyone who made the effort to come from Europe, Australia, and Asia, thanks for your great efforts to add distance and travel to your already full plates. I have made every attempt to accurately present what I saw during this past weekend’s conference. If, however, I may have not as completely or accurately reported on a study’s results or a speaker’s comments as they may have wished, I apologize for my human frailties. Again, thank you to everyone involved in the conference as well as those too ill to travel.