Ithaca College: Tireless Work on Chronic Fatigue Syndrome (interview with prof. Betsy Keller)

[Kalliope]

Informative article with interview with IC professor Betsy Keller. Lovely to hear from one of the research centres that recently received allocations from NIH.

Tireless work on Chronic Fatigue Syndrome

Now she is among the leaders of a new ME/CFS collaborative research center based at Cornell University and encompassing seven other institutions, including IC, funded with a five-year, $9.4 milliongrant from the National Institutes of Health (NIH).

...

“I call it living circularly versus linearly,” Keller said. “Healthy people do tasks A, B, C, D and E, then go to bed. [ME/CFS sufferers] do task A, then recover, task B, then recover, and so on, making sure they have intermittent recoveries so that they don’t exacerbate their symptoms. Knowing their threshold tolerance for exertion is important, and that’s part of what we learn through the exercise test.”

 

[Hutan]

That's an encouraging read. So good that they get the importance of testing things before and after exertion.

I hope they can sneak out some progress reports, as five years is a long wait.

 

[Kalliope]

There is a doctorate around the corner from MD Katarina Lien on ME and ergospirometry testing.
Perhaps we'll hear some news about that in her lecture about PEM at an upcoming ME-conference in Sweden.

 

[Cinders66]

Is it possible that the unrestorative sleep is part responsible for the inability to recover from exertion in a short time frame of 24 hours which causes reduction in function day 2 plus exacerbation of symptoms as the body is then pushed over its limits. Obviously people who manage to work are functioning at a level whereby recovery is possible to do it all over again the next day. But The point of the exercise test is to push the body harder and see how it then recovers? Obviously exertion could be knocking out homeostasis and setting off the immune system etc too. But..

I just say this because as someone very severe I notice how my body does zero recovery from over exertion whilst I’m asleep, so if I over use my arms in the evening, I awake next day with exactly the same level of spasm, immobility, weakness that I’d ended the day before with, it’s only when I’m awake resting that the recovery starts. This is opposite to the sloping linear trajectory mentioned in the article where healthy people do successions of activity with increasing weariness/ tiredness before bed before getting essentially rebooted by sleep to awake renewed. I’d expect my body not to hugely recover up a grade of function in one night but to at least recover a bit from the days slight over activity, but it doesn’t. For healthies the body can reboot after a day on the couch as well as a heavy day thrown in exerting limits mountaineering without severe issues, healthy people don’t have to maintain the careful steadiness as we do as the overnight healing and recovery and restoration seems very effective

 

[Peter]

Is it possible that the unrestorative sleep is part responsible for the inability to recover from exertion in a short time frame of 24 hours which causes reduction in function day 2 plus exacerbation of symptoms as the body is then pushed over its limits. Obviously people who manage to work are functioning at a level whereby recovery is possible to do it all over again the next day. But The point of the exercise test is to push the body harder and see how it then recovers? Obviously exertion could be knocking out homeostasis and setting off the immune system etc too. But..

I just say this because as someone very severe I notice how my body does zero recovery from over exertion whilst I’m asleep, so if I over use my arms in the evening, I awake next day with exactly the same level of spasm, immobility, weakness that I’d ended the day before with, it’s only when I’m awake resting that the recovery starts. This is opposite to the sloping linear trajectory mentioned in the article where healthy people do successions of activity with increasing weariness/ tiredness before bed before getting essentially rebooted by sleep to awake renewed. I’d expect my body not to hugely recover up a grade of function in one night but to at least recover a bit from the days slight over activity, but it doesn’t. For healthies the body can reboot after a day on the couch as well as a heavy day thrown in exerting limits mountaineering without severe issues, healthy people don’t have to maintain the careful steadiness as we do as the overnight healing and recovery and restoration seems very effective

It would be very interesting to do rigorous exercise-tests these in combination with sleep tests. Asking a lot, but..

I find the sleeping part exactly the same and one should imagine it must tell a whole lot?! I agree that there is no/zero restoration at all while “asleep”. When going to bed slaughtered in the evening after overexertion, which is hard enough, it is no way near as bad as waking up. Night is not only not restorative, that is not precise enough, - but it is breaking the body completely down and further than when going to bed. The first 4-6 hours after waking up are horrendous, but slightly it gets “better”. From own anecdotal empirical experience, I find that absolutely everything is going wrong “sleep state”, and that in order to have any restorative process whatsoever, that requires body in “wake state.” To me the whole dynamics indicate that the body can deal with some PEM daytime/awake, not at all night. Personally For the lack of the body’s ability to do some recovery nighttime, is the very major player in ME. Body can manage and restore some PEM awake, not do anything right while “asleep”. In theory and short term, it would paradoxically probably be better to stay awake at night..


Will add that the same negative sleep patterns is constant, almost independent of level of exertion during day, but maybe slightly better not diving to bed totally slaughtered.

 

[Mij]

Is it possible that the unrestorative sleep is part responsible for the inability to recover from exertion in a short time frame of 24 hours which causes reduction in function day 2 plus exacerbation of symptoms as the body is then pushed over its limits.

This has not been my experience. I've had restorative sleep for most of my 27 years with ME and it has made no difference in my ability to recovery from any level of overexertion.

 

[Cinders66]

This has not been my experience. I've had restorative sleep for most of my 27 years with ME and it has made no difference in my ability to recovery from any level of overexertion.

Do you noticeably recover from exertion over night or do you have sleep that feels deep, awaking feeling nice but still haven’t recovered from the day if you’d exerted? My body literally stops on sleep and restarts where it left on on waking, often a bit worse as Peter said. During the day with rest I can feel the body restoring, and the next day will be better To its normal but only because of the day time, not the night.

 

[Mij]

Do you noticeably recover from exertion over night or do you have sleep that feels deep, awaking feeling nice but still haven’t recovered from the day if you’d exerted?

I don't recover from PEM with deep restorative sleep.

But sometimes overexerting wires up my brain and will negatively affect my ability to fall asleep.

 

[Trish]

I finally found time and energy to read this article. I think it's really good.

Not only does she describe her experience of testing about 150 people with ME/CFS using the 2 day CPET, and finding results that confirm the Workwell findings, she makes it absolutely clear that she knows ME/CFS is not a psychological illness, and that GET is the wrong treatment. She explains what the study will be doing, which sounds excellent, but frustrating to see the time scale and small numbers of participants.

 

[NelliePledge]

I like this article I think it is quite accessible for people who don’t know much ME or people who don’t take much interest in research and worth sharing around.

 

[Simon M]

frustrating to see the time scale and small numbers of participants.

By my calculation it’s 10 patients x three centres x 2 years equals = 60 patients, plus the same number of controls. That is a very small sample, but remember they are using a before/after exercise approach and that gives much “cleaner“ results, as explained here:


( from a statistical perspective, this approach reduces variance considerably, which means you can detect a real effect with a smaller sample size).

Also, they are replicating the Japanese neuroinflammation study, and 60 is a very big sample for that kind of work, Particularly as they are using me before/after approach.

I thought it was a good general article, but a bit thin on details about the collaboratively’s research program itself. That’s partly me being frustrated because I don’t have the energy to write a blog about this work, which I think is very interesting and important.

 

[ahimsa]

I missed this article when it first came out.

Like others on this thread I also thought this was a good general article for people who don't keep up with ME/cfs research. I've discussed the CPET with some folks (mostly non-patients but also a couple of ME patients) and I think this is a good article for info on this test. I plan to forward this link to at least 3-4 folks that I know.

Also, I noticed this line in the article:

While recovery has been documented in some who contracted the disease in pre-adolescence, no evidence exists of full recovery by those who were afflicted as adults.

This is the first time I've seen this kind of definitive statement about recovery! (of course, with my memory, it's possible this has been said before, and I've seen it, but I don't recall)

So I thought I'd ask for comments from the smart folks on this forum. This statement ("no evidence exists of full recovery") seems to match what I have read/heard over the years so it's not a surprise.

On the other hand, with so little evidence (so little research into this illness), maybe the opposite statement is true, too? Maybe no evidence exists that patients have NOT recovered?

Thoughts?

 

[Hutan]

It's an interesting question @ahimsa.

I think if you accept that ME/CFS is, perhaps among other things, a post-infectious fatigue syndrome that doesn't resolve, then some adults do recover, as shown in the Dubbo study.

The case rate for provisional post-infective fatigue syndrome was 35% (87/250) at six weeks, 27% (67/250) at three months, 12% (29/250) at six months, and 9% (22/250) at 12 months. No difference in these case rates existed between the initial infective agents (fig 1).

From memory, the average case rate across the three diseases studied dropped to 2% by 24 months. Again from memory, a large proportion of these cases met Fukuda criteria.

I think there are enough anecdotal accounts of 'people who did appear to have PEM' recovering to suggest that recovery does occur in adults, albeit infrequently after the first two or three years. Until we have a biomarker, I guess it will always be possible to dismiss those recoveries by suggesting the person didn't really have ME/CFS.

 

[Trish]

Another problem with counting people recovered is - will they relapse? And if their ME recurs, is it a new illness, or a relapse of the original illness? I think the only way we'll get a clearer picture of recovery is when we have a really accurate biomarker, and people who had tested positive when ill test negative when they recover.

 

[Sisyphus]

Another problem with counting people recovered is - will they relapse? And if their ME recurs, is it a new illness, or a relapse of the original illness? I think the only way we'll get a clearer picture of recovery is when we have a really accurate biomarker, and people who had tested positive when ill test negative when they recover.

The case of Howard Bloom is interesting, he had the full disease, bedbound, couldn’t handle light or noise etc, and now he is functioning normally other than having to sleep in two shifts plus taking about two dozen supplements and several injections. Recovery took 12 years.
Anecdotally, in my local mecfs sick people’s group, there seems to be a knot of people who never get much better and then others who disappear from the group, often because they recovered.

 

[Mithriel]

now he is functioning normally other than having to sleep in two shifts plus taking about two dozen supplements and several injections.

That isn't recovery, it is maintenance or stabilisation like what happens when a diabetic takes adequate insulin. It is a goal we should be aiming for and is much more likely to happen than a proper recovery. I would happily settle for it.

Recovery is if you can run a marathon then back to work the next day as often as you want without any sort of cost. There have been anecdotes of people climbing mountains after having ME but they usually involve someone who had glandular fever so that might make a difference. More commonly, we have people on the forums who thought they were recovery but overdid things and ended up worse than before.

It may NEVER be safe to consider yourself completely recovered. A friend took an MS attack in her 20s, hospitalised for months, bad, but never had another one until she had a triple bypass in her 60s. She got very bad very quickly.