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.
Psychiatr Danub. 2010 Mar;22(1):90-3. Side effects of treatment with benzodiazepines.
Arzneimittelforschung. 2010;60(1):1-11. Cognitive effects of GABAergic antiepileptic drugs.
Drugs Aging. 1999 Jul;15(1):15-28. Drug-induced cognitive impairment in the elderly.
>Thanks for this post Jamie, very helpful. I do have a question … did you ever try Ampligen and do you have any thoughts on that drug?
>"It is psychologically damaging to see the images and adds nothing to the treatment of the illness."
I respectfully disagree. For a doctor scrambling to make sense of an ME/CFS patient, this could help them see that it's not all in our head. It potentially could vastly influence the treatment of the illness by preventing a doc from sending us down the CBT/GET route.
And as a patient, I crave the validation such test results can provide to skeptical family members / employers / acquaintances who look at me and see nothing wrong. Such test results can show them proof in black and white that I am *not* okay, that I am *not* lazy/crazy. Their skepticism and scorn are far more psychologically damaging than looking at the scans themselves, as far as I'm concerned.
By and large I agree with all you've written, but I'm afraid I must disagree with you on this.
Sorry if this double posts, but I think Blogger ate my first attempt at posting.
>Renee, I can really understand your perspective .. I have a real need to have 'evidence' in order to get any validation from people around me … it's a shame that these people cant just believe us when we say how ill we are ….
>Every test ever run on me has shown some abnormal result yet most providers still dismiss me as having stress related issues or the "it's all in your head", so what was the point of the testing?
I could probably have a multitude of further testing but as Jamie said, for what ends, certainly not a cure.
I also tend to agree with the overuse of supplementation over the long haul, to correct a proven deficiency, ok but permanently maybe they are adding to the problems, just as conventional docs prescribe 20 or more meds for their patients the alternative docs can do the same with supplements, the body still has to utilize of clear these out somehow.
Autonomic dysfunction has been mentioned in my case but no tilt table test, I do not want it. Thank you for the pulse test though. I fail miserably!
>I tried to post yesterday but do not see my post.
I respectfully disagree with these "truisms."
For instance, this thread on klonipin by ME/CFS/lyme sufferers show that some not only tolerate it well longterm without problems but that it has been somewhat of a godsend. Others have developed tolerance or not had the same benefits. Here are three excerpts from three different posters on the benefits:
http://www.forums.aboutmecfs.org/showthread.php?6660-Klonopin&highlight=chris
"Klonopin is one of only three drugs I've found helpful in my 20+ years of this disease."
"I have been taking klonopin at night for sleep for 10 years. It helps tremendously that tiny little pill."
"I would be hard-pressed to give up any of the medications that keep me semi-functional, but if I could only keep one, it would be klonopin. It soothes the wired but tired brain, it helps put me asleep, and to some extent it eases pain. I have been on the same dosage since 1996. No tolerance issues for me."
Benzos can be addictive and have big downsides, but any drug has positives and negatives, and side effects depend on the patient.
Secondly, I have benefitted enormously from judicious IV supplementation.
The idea that all ME/CFS/lyme would be due to one single retrovirus seems unlikely. Where is the evidence? OTOH, the idea that chronic infectious pathology or mixed infections of virii, fungi and bacteria, along with vulnerable genetics and toxic environmental assaults, could lead to similar overlapping symptoms, makes more sense. Perhaps there is a causal pathogen in each case, perhaps in some it is XMRV, but it is unlikely to be the same causal pathogen universally.
>"1. There's a doctor somewhere that knows what to do." Yep, there are many such doctors. Claiming no one knows what to do just because you don't know what to do isn't very fair (nor true).
#2 also makes absolutely no sense at all.
SPECT scans can in some cases be used to objectively show that a treatment works.
>I agree with what you wrote about Klonipin it is very addicting and people can end up with huge problems, it seems giving a person with a foggy brain something that will fog it up even more is crazy. The other aspect of Klonipin is people with CFS go through lots of trauma due to dramatic changes in their lives, disapointments, loss of relationships, etc. and benzodiazapines are contraindicated in trauma, making the symptoms worse. It is like when an alcoholic gets stuck in their trauma and they focus on it the rest of their lives. What I disagree about is the nutritional supplements, I have over a 25 year period experimented with supplements, different types of foods, and the elimination of toxins from my life. I have gotten much better. An extememly important factor was the elimination of all types of sugars, as sugar makes pain increase. Some foods such as olive oil and turmeric decrease pain. I eat an extremely health diet. Then the other extremely important factor in feeling better is to figure out how to get some exercise. My method when I was really ill was to watch or just listen to TV while I did my writing or projects. During the commercials I did housework and exercises, then rested during the shows. Then I listened to audio books and using a timer very gradually increased my exercise time. I slowly developed a tolerance and can now walk long distances and even ride a bike. I just have to be cautious not to increase activity suddenly or stand in one place for a long time or I get ill. Where I live in Alaska there is not one doctor who knows what to do, but before I came here I got help from a lot of doctors who had many helpful suggestions. I also was medically abused by many doctors and given drugs that were more harmful than useful. Collecting our own information and deciding what works for us individually works the best, but in the beginning many people like myself were really too ill to do this.
>I don't know one patient on Klonopin who has recovered. I do know some patients on antibiotics who are doing well, if not fully recovered.
As to tilt table testing, the patient needs a doctor who does them routinely and knows how to do them. You don't want to pass out with no blood pressure just standing up against a wall. If one does get a tilt table test it can be very useful in getting disability coverage. But I have to add that it was the worst test I ever had in my life – passing out is no fun.
Will XMRV turn out to be the big player? I think so. I believe it will be found in most cfs and Lyme patients. It is a retrovirus – most likely one that damages the immune system, and it does cause cancer. Furthermore, there is a huge difference in cfs patients and healthy patients' rate of infection – 4% to 95% as I recall. If I were playing chess I would say we have found the KING and we must defeat it.
Paula Carnes
>Indeed pjeanneus….great analogy. Excitement builds as we put the King into the first "Check"! Onward to Checkmate!
>Has anyone ever tried elderberry extract capsules? Studies indexed on PubMed suggest it may have broad anti-viral potential in vivo, and it doesn't usually have any side effects, and it's not that costly, either. It might be a good add-on to an anti-viral program.
>"The CNS instabilities in CFS are mostly migrainous in nature, not occurring in the electrical domain"
How do I find more information on this? One of the things CFS brought to me when I became ill with it 30 years ago was severe migraines. I'm still fighting them and any info would be helpful, thank you.