Discussion in 'General ME/CFS News' started by Firestormm, May 14, 2013.
15 May 2013
Start your engines....
Wonder how many will die on this study or be seriously harmed?
The only body part I'm willing to exercise are my fingers - on the keyboard.
Seriously, why are we wasting money on this type of research?
I just wanted to add the word "continuously" wasting money on this type of research.
I also have serious doubts about this research. However I would want to see the study design before really condemning it. It sounds bad, but how often do newspapers get it right? What if they are using VO2max or repeat VO2max testing? This might then invalidate the entirety of GET psychobabble. Details ... we don't have them yet. I am going looking now.
http://www.scu.edu.au/news/ More info here.
Just emailed Dr. Coutts this letter:
Dear Dr. Coutts,
I am a patient advocate for ME research, and I am interested in your study on exercise and CFS. It is unclear what the testing protocol is from the media releases. Are you able to say what immune factors will be tested, and whether the Gold Standard in such studies, a VO2max test with a measurement of aerobic threshold (and particularly the Stevens protocol which has been used for 10 years now) will be used?
Such VO2max testing shows the primary problem is a massive decline in exercise capacity on a second day of testing, though only milder patients progress to the second day as a first day is usually enough to show sever problems ... the first day precipitates a decline in both VO2max and anaerobic threshold, sometimes as much as 30%. This is evidence of fatigability, not fatigue, and is has been the hallmark of ME definitions since 1965 or so.
Are you discussing these issues, particularly immune testing, with the CFS study group at Griffith University? (They used to be PHANU at Bond University.)
I don't know if you can help me with this information, but I would appreciate it if you could.
Thank you, Alex Young
Doh, just spotted typos!
I just wanted to add the word "pointless":
Seriously, why are we continuously wasting money on this type of pointless research?
Er...shouldn't that be "why are they continuously wasting our money on this type of pointless research?"
Excellent, Alex, well done!
They are doing VO2max testing, though only a single round before and after the exercise period. I should have asked if I could make their message public. Doh - just sent the request. They are also looking at NK cell function, and looking for some signs of autoimmunity and immune activation. If I get a reply that says I can make it all public, I will repost their message.
The objective measures here put the PACE trial to shame, though I would have been happier with a full Stevens protocol. Its still short of something I would consider complete, but its not a fully subjective study.
If we want to put the PACE trial and its like into a museum full of extinct things, we need studies that really look at objective measures. While I would not necessarily be happy as a subject in this study (I know how I react to exercise) I am hoping they find some useful objective results.
I suppose this research could end up challenging the PACE results. I mean if PACE were universally accepted, well, this research wouldn't be considered necessary - would it?
should we break the news to them that exercise doesnt work for immune disorders??
There's a tiny bit more about it here:
“During the study we will monitor fatigue, heart rate, blood pressure and exertion with exercise and fitness levels. We will also monitor immune function and wellness will be assessed before and after the study.”
I reckon they will figure it out. However since one of their treatment arms seems to be a form of interval training ... exercise and rest periods ... they might actually see some benefit. Avoiding over-activity is the key to us being active after all. It would be very easy for the protocol to stuff this up though ... it doesn't take much excessive activity to precipitate a crash.
Wouldnt it be good if they were to get in contact with griffith uni, just so the seed is planted that its an immune disorder, not psychosomatic.
The doctors running this research, do we know if they are medical docs or psychs? As this could bring about a biast towards their findings?
It seems like they would have to be testing the less seriously ill patients. I would never volunteer for a study that I know would trigger POTS or OI, plus I'm not healthy enough to leave the house very often. A program like that would just be asking for a crash.
Exercise physiologists, though one is trained in exercise psychology.
One interesting point: I think Gold Coast Hospital (National Centre for Neuroimmunology and Emerging Diseases) has the capacity to do research on severe ME patients, though I don't know how easy this would be to organize, nor the costs. This is a result of a government initiative in combination with the old PHANU team (as soon as I get used to that name they change it on me!) So the biomarker research done by PHANU (not the same team as in this thread) can indeed include severe ME patients if they want to.
Thanks for your input on this one Alex. The website says there would be 3 exercise sessions a week for 12 weeks. I live not too far from where this is happening. I might even be willing to participate if I knew they were doing it right and not pushing participants too far. Even if it meant going backwards a bit it could be worth getting the objective info. Wonder if we could convince them to do a double VO2 max test before and after. Are the Workwell group (Steven's protocol) willing to share their protocol? While we already know the outcome of GET I don't think we can battle PACE effectively without objective trials.
I think the Stevens protocol is fully public ... its just two VO2max sessions a day apart. What is missing is the expertise in what this means for ME patients. However a poor anaerobic threshold on day two is not that hard to interpret: its a sign something bad is happening in the body to crash energy production.
Should you choose to go down this path you can always choose to drop out of the study early. Don't forget that if things get bad. Also you should be told this by the researchers, but I wanted to be sure you knew.
You can also try a Google Site Search
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