Llewellyn King interviews Staci Stevens of Pacific Fatigue Lab: ME/CFS Alert, Episode 32

[Ember]

“The hallmark of chronic fatigue syndrome is exercise intolerance, so studying it and understanding it and the consequences of post-exertional malaise is essential to understanding what's going on in the illness.”

“[PEM] is a very objective marker, and the way that we employ testing is a two-day test paradigm, and the second-day test allows us to objectively measure those symptoms of post-exertional malaise that very few people actually believe exists.”

“What's unique to CFS is the second day...they should be able to come back and do the exact same thing. The unique part is that, unlike heart disease patients, CFS patients can't reproduce the results.”

 

[Sasha]

Thanks for posting, Ember. I wonder where the other places "around the country and around the world" that she mentions as doing the same testing are?

I also wonder how this work relates to orthostatic intolerance, which is present in such a high proportion of PWME. Exercise is one of the triggers for OI and I wonder if OI causes the exercise intolerance that Staci describes as the main feature of ME.

Here's where the link Staci mentions to the Pacific Fatigue Lab takes you:

http://www.pacific.edu/Academics/Sc...Sport-Sciences/About/Pacific-Fatigue-Lab.html

 

[Firestormm]

I know that in the UK Professor Newton in Newcastle has been looking into muscles and the effects of exertion/exercise. There was a clip/link to a news programme I caught the other day which was quite positive and I've read most of the reports to come out of Newcastle. She's also got some of the state funding to continue in this direction. Will try and dig up the TV slot although I can't recall now how recent it was...

Edit:

Feb 2011:

at 1min 23 secs. Positive stuff from Newton. Of course this was before she got the above grant. She's been getting others and there has been lots more published in terms of things she's said and her results since feb 2011.

Sorry it's only a little snippet. I can dig out more stuff if you like although I'm sure if you search on the forum for Newton you'll get some 'hits'

 

[Sasha]

Thanks, Firestormm - I'm wondering whether to try to get a referral up to Newcastle even though the trip would be a Frodo-like epic journey for me, given the distance.

I wonder if this was the TV thing, back in February?:

http://www.meassociation.org.uk/?p=4174

You're right about the state funding - she and a Newcastle colleague just got £900k from the MRC.

 

[Firestormm]

I'd be interested to hear how you got on Sasha if you did manage to get and see Newton. There's definitely something of a Tolkein theme happening on this forum in recent days. I kinda feel like one of those trolls in the forest myself - turned to stone and rendered inert

 

[Sasha]

Thanks for that clip, Firestormm.

Yes, it's all gone a bit LOTR lately! Maybe one day we'll hurl that ring into the Cracks of Doom.

Will let you know if I get a referral. There's a lot to weigh up.

 

[Firestormm]

Your reference to 'ring' and 'cracks of doom' had me rolling on the floor (figuratively speaking)

 

[Sasha]

Roll gently, Firestormm, roll gently!

 

[peggy-sue]

I've been ill for 10 years now - I don't get payback the next day - it can be about a week or even longer before it sets in, after an overdoing.
The longer you've been ill, the longer it takes for PEM to hit - and the longer it lasts.

 

[CJB]

I've been ill 20 years and PEM predictably hits somewhere on day 2 and mild depression usually arrives at about day 5. There are growing numbers of patients who have been tested using the Pacific Fatigue Lab protocol and data suggests this type of pattern (except I don't remember them mentioning anything about depression) is most common. With this disease, you really can't extrapolate your own symptoms to generalizations about how that correlates to the rest of the ME/CFS population. Seems to be one of the problems with defining and researching the disease. The symptom manifestation varies so greatly. And probably why each of the prominent ME/CFS docs has success with a certain percentage of patients. I'm so hoping that some of the initiatives that are providing collaboration will finally allow us to see what this elephant actually looks like instead of individual pieces of the puzzle. Sorry - mixed metaphors are the best I can do right now

PEM is something they can now measure. The protocol is simple and the equipment is ubiquitous in sports medicine. This holds much promise in terms of legitimizing the illness across all fronts. These are extraordinary findings that have been replicated.