Video posted to YouTube by SolveCFS, May 2010
Presenter Charles Lapp, MD, FAAP. Works at Hunter-Hopkins Center, Charlotte, N. Carolina. www.drlapp.net
These slides are published on CFIDS http://www.cfids.org/
There are many overlap symptoms, and a lot of overlaps between FM and CFS. But there are some differences as well, for example, in the CNS biochemical difference. Substance P and glutamate are elevated in FM subjects, but not in CFS subjects. Both conditions can also be genetically separated.
CFS is based on a case definition and criteria, not on a blood test.
The STEPWISE approach to management of symptoms: Symptomatic therapy, supportive therapy, nutrition, activity, education.
Refers to FM network http://www.fmnetnews.com/
Activiy: Exertional paradox - If you overdo things, flares can occur; but if you lie around, you get de-conditioned.
Positional: Lying flat is more restorative. Hypersensitivies: Sound, light, smell, temperatures, foods, medicines. Stress intolerance: Mental work is just as stressful as physical work.
Recommends rest periods 2 or 3 times daily for 10-30 minutes, preferably lying down.
Any plan has to be INDIVIDUALIZED.
Cites an exercise study in which M.E. subjects were on a treadmill for three minutes, then rested for three minutes, repeating that pattern ten times. Evidence suggests that patients flare when they exceed their anaerobic threshold, so movement in itself is not the problem. Recommends getting a pedometer and aiming for between 1000-5000 steps per day.
Self assessment: Ask 'How do I feel after the activity?' and 'How do I feel the next day?' If you feel bad, cut the activity by 50%.
Discusses detrimental substances: aspartame - broken down to formic acid = formaldehyde; MSG - a neurotoxin which causes headaches, nausea, numbness, and mood swings
sleep medications - doesn't recommend benzodiazepans such as Ativan [exactly what I tried!] because it interferes with stage 3 & 4 of sleep.
Symptomatic management: pain - simple analgesics: aspirin, acetaminophen, NSAIDS (fewer side effects); non-opioid analgesics (tramdol - strength of codein, but with fewer side effects); anti-epileptic drugs are also useful in pain management - pregabalin, gabapentin
Also recommends seeing a pain specialist.
Dr. Lapp's line which reflects my own experience so far, and which I think serves to be the best advice to anyone with M.E.: "IF YOU DON'T ADJUST LIFESTYLE FIRST, YOU'LL NEVER GET BETTER."
Regarding nutritional supplements, the Hunter-Hopkins center raises two questions before recommending any supplements: 1) There has to be a scientific basis for their use. 2) A majority of individuals who use them must benefit. In short, if nutritional treatments really worked, then everyone would get better. Obviously, everyone is not getting better. The center recommends six particular supplements: magnesium calcium B12 D3 lysine NADH acetyl carnitine DHEA Magnesium and calcium don't benefit M.E. directly, but they are too fundamental to overall health function to be ignored, according to Dr. Lapp.
Dr. Lapp also mentions some of the other advanced therapies that are on the rise. These include: growth hormone low-dose cortisol transfer factor (thought to reduce viral load) isoprinosine Ampligen (under study since 1988, and still under study) Overall, Dr. Lapp says the public should remain cautious about any 'treatment' since many of them have only 'evidenced' success in limited controlled trials.
The presentation ends with a Q&A session after 55 minutes.
The Q&A session throws up the fascinating response to the issue of nausea and vomiting with M.E. Up until doing more research, nausea and vomiting are rarely mentioned as symptoms of M.E., but it seems that they are quite common. My own experience was a debilitating nausea and vomiting which were the worst of my M.E. symptoms, lasting for a continued three-year run. No doctor had recognized this as an M.E. symptom. Dr. Lapp's idea is that the reason for the nausea and vomiting is that the stomach is not emptying well. There is an accumulation of gastric juices and saliva. Dr. Lapp recommends using ginger and cinammon, since they stimulate gastric acid. One medication, reglan, also stimulates gastric activity.
Dr. Lapp also mentions D-ribose, something I have been really keen to try out. He suggests that if you don't notice any effect from D-ribose within 2-3 weeks, then it probably means that it's unlikely to do anything for you.