1. There’s a doctor somewhere that knows what to do.
Nobody knows what to do, but there are lots of dangerous drugs being prescribed nevertheless.
2. There is a biomarker for the disease at this time, other than the presence of XMRV.
If you go to a CFS doctor, you get tested for one set of organisms and markers. If you go to a Lyme doctor, a different set of organisms and markers. If you go to a rheumatologist, you get yet another set of tests. Each will find what they are looking for, including the rheumatologist who didn’t want to find anything; there’ll be something a little off, but not enough to spark real interest. Looking for XMRV is the correct test. It may be the only test worth doing right now, other than testing endocrine function. My understanding is that VIP Dx will offer a serology test in a month.
3. Brain imaging is diagnostically useful.
Unless you are looking for a space occupying lesion or need it for disability purposes, imaging requires administration of a radioactive tracer and gives no useful information. Contrast MRI generally shows scattered white matter T2-weighted hyperintensities and SPECT shows hypoperfusion, generally in the frontal, temporal and parietal areas. So what? What are you going to do about it? It is psychologically damaging to see the images and adds nothing to the treatment of the illness.
4. Tilt table testing is useful.
Most patients with POTS can be diagnosed by doing what I call a mini-tilt. Lie down for 5 minutes. Take radial pulse. Then stand against a wall, using the wall to do the work of the muscles as much as possible. Wait 5 minutes. Retake the pulse. If it goes up more than 30 beats per minute, it’s diagnostic link. Many CFS patients can’t do it, because it’s too uncomfortable. I know of a few people who have been permanently harmed from being allowed to pass out during a real tilt table test.
5. There is a right supplement or bunch of supplements.
As there are blocks in many metabolic pathways, it may be that introducing large amounts of a substance leads to build-up at one point in the pathway, rather than producing the desired downstream effect. When the dust settles from the realization that there has been one or more retroviruses loose in the population for a very long time, it will be clear that the supplement and alternative medicine industries have been fueled by our ignorance. I bet that the average alternative medical practice in this country sees a very high percentage of X+ patients.
6. Oxygen is bad for you.
There is confusion about the use of supplemental oxygen in this patient population. Because there is evidence of increased oxidative stress in CFS patients and hyperoxia increases oxidative stress during administration, some have concluded that it is not a good idea to use it. I was a hyperbaricist in one of my previous medical lives and I will share some information from the hyperbaric literature and how I think it pertains to us, but it is a big topic and I will do it in a separate post.
7. Klonopin is good for you.
Especially in the early stages of the disease, there is often anxiety and sleep disturbance. Benzodiazepines relieve these symptoms. The trend these days is towards longer acting drugs and Klonopin has become the drug of choice in CFS to treat these complaints. It has anticonvulsant activity. The CNS instabilities in CFS are mostly migrainous in nature, not occurring in the electrical domain, though benzodiazepines are sometimes effective for migraines and other manifestations of vascular instability. However, chronic benzodiazepine use has an adverse effect on cognition and destroys sleep architecture over time. Benzodiazepines cause physical dependence and rebound phenomena, and are hard to wean. Let’s look at what the recent literature has to say about the wisdom of using Klonopin for a population of patients afflicted with insomnia, depression and cognitive complaints:
Sleep. 2003 May 1;26(3):313-7. Sleep EEG power spectra, insomnia, and chronic use of benzodiazepines.