Distinguishing CFS - New Zealand Research

[Jan]

This is a study that the MEA, or someone else should do in the UK, maybe one or two doctors might actually take note if it was carried out here.

 

[ash0787]

how did they know it took 4 weeks to recover ? based on questioning ?

 

[sdmcvicar]

Though it takes weeks to recover for many CFS patients, I'd still like to see this become a standardized test. That dropoff doesn't reproduce in deconditioned or elderly controls. I'd imagine it would be a relief to a lot of folks to be able to point to something for LoA/disability paperwork to say "See? Actually something physiologically wrong. Not a lack of motivation, not all in my head."

It's unfortunate that the resulting burden on the patient is so large, but I really feel this would help physicians understand this isn't just a case on ongoing fatigue. Particularly on a follow-up appointment in the weeks after testing where they can see you stumbling around like to have the flu, note the tender points and weakness, see the extra time it takes you to respond to questions, etc. One of the toughest issues I've found is that because you spend several days "gearing up" for an appointment, your PCP often ends up seeing you on one of your good days, leading them to underestimate the severity of your illness.

 

[Lolo]

One of the toughest issues I've found is that because you spend several days "gearing up" for an appointment, your PCP often ends up seeing you on one of your good days, leading them to underestimate the severity of your illness.

And they don't see the effort of getting organised to go out and don't realise that every step is like walking neck deep in molasses, or how difficult it is to use our brains, that our thought processes aren't functionally normally or see the collapse afterwards. Even on a good day.

 

[Cohen2]

I don't see the criteria that was used.

I think they were diagnosed by Ros Vallings. She used the CDC to diagnose me in 2010. Not sure if she still uses it

 

[Marco]

"To find out more, Dr Hodges is completing another trial examining the physiological differences in repeated maximal exercise at 48 hours and 72 hours. “We will be taking blood samples to examine markers of inflammation, blood pressure and heart rate, asking questions about fatigue, and participants will be asked to do simple computer tasks to examine cognition, as well as ultrasound to measure arterial stiffness, and the cycle test to examine anaerobic threshold. All tests will then be repeated at either 48 hours or 72 hours later.”

Testing autonomic function also might have been interesting.

 

[ukxmrv]

I think they were diagnosed by Ross Vallings. She used the CDC to diagnose me in 2010. Not sure if she still uses it

There was a questionnaire to be filled in if one wanted to join the study. Not sure what was in it though or how patients were vetted. I have a family member in NZ who asked and they were not dx'ed by Dr Vallings. ME diagnosis from the 1980's Tapanui Fu outbreak

Other requirements were

1. blood sample
2. Measurement of arterial stiffness on the radial pulse
3. Some computer work
4. Exercise
5. Blood sample

and repeat 24 hours later

 

[Snow Leopard]

Hopefully Ron can soon offer a CPET for cells in a chip.

That'd certainly make it easier!

 

[lauluce]

Hopefully Ron can soon offer a CPET for cells in a chip.

yes, a chip with a nanoscopic threadmill

 

[TiredSam]

yes, a chip with a nanoscopic threadmill

We could do circuit training.

 

[Chrisb]

We could do circuit training.

You're going to be busy. This on top of all that wait training.

 

[Chrisb]

I must admit to finding this thread a little frustrating.

In about 1988 I was asked to present myself at some university room where I was hooked up to various equipment, sat on a bike and told to pedal. I got the impression that the results were so odd that it was thought there was some error. There was never any follow up. I suspect the funding went into more useful psychiatry departments.

 

[jimells]

If people with ME really had a fear of exercise, it would be impossible to conduct this study - there would be no one to participate.

I'm very intrigued that they found MS patients are apparently less fit than ME patients, but still can repeat their results on the second day. This seems like a way to differentiate one disease from the other, in spite of the big overlap in symptoms.

 

[BruceInOz]

We could do circuit training.

I assume this is a pun on the fact that Ron's device measures the electrical resistance of cells, presumably by employing an electric circuit? Very subtle humour @TiredSam

 

[lauluce]

If people with ME really had a fear of exercise, it would be impossible to conduct this study - there would be no one to participate.

I'm very intrigued that they found MS patients are apparently less fit than ME patients, but still can repeat their results on the second day. This seems like a way to differentiate one disease from the other, in spite of the big overlap in symptoms.

I didn't walk into that treadmill with fear but with hope that I could finally discard the idea that it was "all in my head". And so It was, my body became as able to produce energy as the body of a cardiac patient after 10 minutes of running at maximum speed, and continues to be that way after 24 hours. There's no way the mind can cause that! Sadly, even with the results of that study, people even in my own family can't yet understand my condition and its organic nature. They don't put enough effort in trying to understand what the results sheet actually says, as that would require to understand what a 24hs CPET actually is and what post exertional malaise is. Sad, so sad. People just sees what they want to see.

For those willing to take the test, bear in mind that you should walk into the treadmill with hope in your heart, but just relating to the confirmation of your illness and better outcomes in the search of medical treatment and disability help form the govt... but don't expect much in the area of support by family and friends, believe me. I really tried to explain them what post exertional malaise was, what a 24hs CPET was, what it measures, the scientific studies supporting it as evidence for ME/CFS, but they just didn't pay attention! they didn't want the truth, the truth means a compromise, and they just don't want it!

 

[alex3619]

I got the impression that the results were so odd that it was thought there was some error. There was never any follow up.

That was the reaction Workwell researchers had the first time they did it. Then they recalibrated the machines and did it again, with the same results. So they knew they were on to something. The rest is history. Mind you they also decided to use this to test PEM .. which it appears to be good for.

 

[alex3619]

If people with ME really had a fear of exercise, it would be impossible to conduct this study - there would be no one to participate.

Workwell has commented that the sedentary controls used had a worse fear of exercise.

 

[Barry53]

This suggests that even though they were as fit as the healthy controls, post-exertional malaise [the feeling of fatigue] after exercise, shows up by them not being able to achieve the same workload at anaerobic threshold or at their peak

[my bold]

So: Not de-conditioned (as some would have us believe), but nonetheless unable to process energy as quickly as others, reinforcing the idea that something else is going on.

 

[Barry53]

If people with ME really had a fear of exercise, it would be impossible to conduct this study - there would be no one to participate.

I'm very intrigued that they found MS patients are apparently less fit than ME patients, but still can repeat their results on the second day. This seems like a way to differentiate one disease from the other, in spite of the big overlap in symptoms.

Exactly. Homes in on (what I'm guessing to be a fact - please correct me if I'm wrong!) people with MS not having PEM as a symptom, compared to PwME who do.

When these sort of tests are run, the exercise equipment must be measuring (or be able to measure) the power being put into it from the person - the rate at which energy is being converted. This power will be a fair indication of what the person has available, over and above their "life support" needs ... akin to the "brake power" of an engine. If that power were tracked on a graph through such experiments, you would likely end up with a very distinctive, visual power signature for PwME; instantly distinguishable probably from most other chronic fatigue conditions. The x-axis would need to be some function of time and exercise events, but not sure quite what, being as PEM is also a function of both exertion and time.

 

[RogerBlack]

I do hope this gets published promptly.