Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Apr 2, 2014.
I'm not a great fan of this paper - I'm posting it to post the comment in messages #2 & #3.
I posted a couple of comments on this on PubMed Commons (here: http://www.ncbi.nlm.nih.gov/pubmed/11747919#cm11747919_550 & here: http://www.ncbi.nlm.nih.gov/pubmed/11747919#cm11747919_547)
(from a post to Co-Cure in 2008, but still relevant today)
Subject: Online Videos of the HHV-6 Conference June 2008 (including International Symposium on Viruses in CFS & Post-Viral Fatigue) and comment on Peter D White's claim at the conference that "prevention is better than cure" (for CFS)
HHV-6 Foundation's Pubcasts and Videos (72 in total) can be found at: http://www.scivee.tv/user/5257/video
A lot of them are not to do with CFS specifically but there are a good number which are.
I could not post this out without challenging PD White's claim at the conference that "Prevention is better than Cure" http://www.scivee.tv/node/6895. The prevention can be summarised as getting people active soon after they had an infection.
It is presented in what at first glance can appear compelling, with fancy statistics to "back up" the claim.
I happen to have the paper in question [I bought it along with a series of papers last year when I wanted to know about Prof Anthony Clare (since deceased) a psychiatrist who was the main representative of those of the CBT/GET school of Thought with regard to CFS in the Rep. of Ireland. Nearly all of Prof Clare's papers on CFS were co-written with Peter D White so, along with reading other papers, I have become very familiar with Prof White's writings].
The paper presented is this paper:
Unfortunately it is not online.
Anyway I'm appending how "physical fitness" was assessed. I don't think one need to see the full paper to understand what was discussed, just watching the clip explains it.
It is important to point out, as I'm not sure how clear PDW makes it in the clip, that this wasn't a measure of pre-existing fitness - they could only contact the patients after they knew they were sick. On average, it was one month after the infection. (So the people who were still sick at sick months could in fact have been more fit)
As I pointed out in my comment (on another study PDW wrote) "Accumulating evidence that CFS patients were actually more active on average than controls before becoming ill" http://www.biomedcentral.com/1471-244X/6/53/comments , most of the evidence points to people who develop CFS having being more active than the general population before they became ill. So any suggestion that any preexisting lack of fitness is causing CFS is extremely questionable.
With regard to the exercise testing in the White et al (2001) study below, the first thing to bring up is that measuring the difference in pulse after an upright exercise test, in a cohort of patients who got ill with an infection on average one month earlier, may not be the best measure of their fitness at their time. The patients who develop CFS may have more extreme orthostatic issues so that that may be the reason why their pulse went up.
Secondly, you'll note that two measures have been measured "Exercise power" and "Fitness". In the paper, "exercise power" was not associated at a statistically significant level with the empirical fatigue syndrome, CFS (Oxford) or CDC CFS/ISF (which was merged for the study) although PDW does not mention that "exercise power" was not associated on the clip. (The scores are all less than 1 i.e. worse but none are statistically significant).
Thirdly, the people who go on to have the empirical fatigue syndrome/CFS CFS (Oxford) or CDC CFS/ISF (which was merged for the study) at six months may have worse scores because they're iller and/or they haven't gotten over the infection and its effect. The Dubbo study found that the severity of the initial infection was the predictor of who has a post-infectious syndrome. It could well be the same in this case. This is a case of finding a correlation and jumping to a causation.
There was also no measuring of which patients did or did not try to move so again the 2001 study did not prove that doctors should mobilise their patients soon after an infection and that this will prevent them developing CFS.
Overall, the talk may be another example that if one wants to "prevent" an audience being exposed to a one-sided presentation of data that promotes GET as the treatment for CFS patients, the "cure" may be not to have somebody like Peter White as a speaker or to make sure he can be challenged.
Survey after survey have found that people with ME have been made worse by exercise programs so the issue of people who promote exercise programs without warnings is an important issue for the ME and CFS community. In medicine generally, interventions such as drugs and surgical procedures come with warnings - why should exercise in ME/CFS be any different and why should "risk-benefit" assessments not be undertaken before an intervention is promoted? And why should there not be a "yellow card" system so that patients, who have been made worse by exercise, can report it?
Also, that video is mentioned in this thread: http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/
At around 14:00 White is talking about a study which shows a 'huge effect size' for encouraging patients to get back to normal activity post glandular fever. He doesn't mention that, at 12 months, the difference between intervention and control (no therapist time) groups is not statistically significant.
I'm not able to follow all of this at this time, but THANK YOU, Tom Kindlon, for all you do!
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