Ember
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Who has tried and failed to replicate Dr. Snell's research?I think Dr Snell has indicated that some other researchers have not managed to replicate his research...
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Who has tried and failed to replicate Dr. Snell's research?I think Dr Snell has indicated that some other researchers have not managed to replicate his research...
A lot of people are concerned about gut bacteria and the immune system. Its a hot topic in research.
I dont understand how such a low percentage of people were found with hhv6 as its generally said that a high percentage of adults have hh 6??
I haven't been following this closely. I would fit into a group who wouldn't be able (or want) to do even a single test. However, I could see how the double test could still be useful: it could reduce heterogeneity in studies. If one then does further testing e.g. some sort of blood testing, on the group with the abnormal test results, hopefully results would be more consistent than if one didn't check them/stratify them in this way. The more severely affected could then have the blood test which had been developed, without having to do exercise test.
(perhaps I'm stating the obvious).
We chose the one-day test so that more patients could be tested.
...
The two-day test would require an additional overnight stay for those patients who travel long distances to attend clinic and excludes those who are most severely affected because of the heavy physical toll.
I have a feeling there is some published evidence that symptom load (severity/number of symptoms) correlating with severity of functional impairment - it's past my bedtime so not going to try to think about this atm..Otis said:I just want all involved to think about the more severe all the way along. I think many, many opportunities have been wasted in not collecting symptom severity and attempting to correlate it to test results.
Blood parameters indicative of oxidative stress are associated with symptom expression in chronic fatigue syndrome.
Richards RS, Roberts TK, McGregor NR, Dunstan RH, Butt HL.
Redox Rep. 2000;5(1):35-41.
I had my testing done at Ithaca College by Dr. Betsy Keller. Ithaca is about a 4 to 5 hour drive from where I live. I can't drive anymore, so a family member took me up there. The next day I did Day 1 of the test. I did not feel rested going in, and used my wheelchair in order to save energy for the test itself. The following day was Day 2 of the test, and my "escort" drove us home after that test. I found it to be excruciating (for all my symptoms) and it took me 3 weeks to get back to baseline. It was worth every minute of hell.
I don't think that having the patient be well rested on day 1 is critical. The goal is to capture the drop in function on day 2. Although no one has published data on what a third test day would be, I suspect we would continue to drop in numbers every day we were tested until we were too sick to perform the test. Being in an all out crash on day 1 is not ideal, but being crashy (for lack of a better word) from travel may not skew results too badly. Day 1 is really an equalizer. The patient needs to be crashed on day 2. You ensure that through day 1.
Who has tried and failed to replicate Dr. Snell's research?
ConclusionsThe lack of any significant differences between groups for the first exercise test would appear to support a deconditioning hypothesis for CFS symptoms. However, results from the second test indicate the presence of a CFS related post-exertional fatigue. It might be concluded that a single exercise test is insufficient to reliably demonstrate functional impairment in individuals with CFS. A second test may be necessary to document the atypical recovery response and protracted fatigue possibly unique to CFS, which can severely limit productivity in the home and workplace.
http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.abstract
When Dr. Snell speaks here of "failure to reproduce," he's speaking of the patients' failure to reproduce on day two the CPET results that they achieved on day one. He isn't referring to other researchers' failure to replicate his research. In fact, he challenges other researchers to find out why patients can't reproduce their day one results. He suggests "lots of reasons" for his findings and lists on his accompanying slide (177) inflammatory cytokine elevation (Klimas et al., 2007), neuroendocrine dysfunction, cardiovascular abnormalities and mitochondrial abnormalities (Whistler et al., 2006, Wong et al., 1992).It made me go back and look at the details of a presentation that Dr Snell made, and it seems that I may have misinterpreted a slide, and I think I was wrong to make that comment about other researchers not being able to replicate his research. It seems that he may have been referring to different types of research not being replicated. I'm not sure what he meant, and I don't know why he included it in his CPET testing presentation. (Apologies for the misinformation.)
If interested, see video at 83:54, and corresponding slide 177:
http://www.tvworldwide.com/events/f..._archive.cfm?gsid=2251&type=flv&test=0&live=0
I'm assuming he means no active hhv6, ebv, cmv. These viruses are ubiquitous, but latent in the vast majority of the population. HHV6, in particular, is tissue-based (I think) so active infections don't always show up in whole blood.
I am terrified of this.He has a lot more testing to do but I have to ask. What would happen if the world famous Virus Hunter slammed the door on most or all viruses in M.E. prematurely. Talk about a setback.
if a single test is to substitute for a double test, we need to be sure its adequate.
I dont understand how such a low percentage of people were found with hhv6 as its generally said that a high percentage of adults have hh 6??
I don't know, but I tested negative to hhv6/PCR when I was tested in the USA too...I don't remember seeing any large community based studies testing for HHV6 (I could be wrong). There are tales and then there is science.