'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

[MeSci]

@kermit frogsquire I keep confused by this discussion, have you gotten the test??????

1) if you get hooked while laying down and you are already at AT, or by standing you get to AT, you do not need to go into excercising. Just by sitting you will see you reached AT on very severe cases.

Maybe they can adjust protocol to be done just normal steps and laying/standing for the severe cases.

The technology is there. Any hospital could test disabled and maybe do a second test for the less severe.

You guys have no idea how helpful this is, GP at first will say go excercise, you do the basic things (stretching or basic therapy) after you been trying for a few weeks the GP see something is not right, (I think the ETA on normal people to see improvement is 2 weeks). So you go from 5 years it took me to be diagnosed, to a few weeks to be diagnosed I WOUDL BE GAME!!!!! I htink is a good start.

So would a lot of us, including me, as this thread shows.

And re @kermit frogsquire's repeated requirements for sedentary controls, I am mildly-to-moderately affected, unable to do conventional work and unable to exert myself much without getting exhausted and/or getting PEM, but I am very far from being sedentary - I am a busy person who gets up in the morning, gets stuff done and goes to bed at night! I think that this is the case for many of us.

 

[Dr.Patient]

Agree with the fact that the HR monitor will show objectively to others what our energy levels are, and to ourselves when to stop doing a task.

 

[SDSue]

Agree with the fact that the HR monitor will show objectively to others what our energy levels are, and to ourselves when to stop doing a task.

An unexpected consequence of wearing the monitor has been personal acceptance of this disease and it's limitations. I fought for too long, convinced that I could beat ME because I was an athlete, I was smarter, I knew better, yada yada yada. What I was, was wrong! Fighting made me much worse, both physically and emotionally.

I'm my own "devil on one shoulder", whispering "Sure, go ahead! You can do that! You won't get sicker!" The angel on my other shoulder is my HR monitor, warning gently of impending doom.

 

[golden]

Are these tests available in the UK?
Are they recognised by the NHS?

Is there a way of doing this test at home?

 

[kermit frogsquire]

Sixty five years of CPET testing includes probably hundreds of thousands of super sedentary people, including heart attack patients, and heart failure. Yet none show our abnormalities so far as anyone has been able to determine. Maybe there is data there locked away in all those databases, or maybe not.

So far as controls are concerned, I would like to see people with other related disorders as control groups, though I realize there may be big issues with recruiting.

You mean sixty-five years of single day CPET testing, where Snell wrote - CFS patients were normal and showed no abnormality. I really don't understand your point. Show me the evidence from 2 day protocols over sixty-five years?

The point is that this 2-day portocol is new. And I fully agree with you, as well as validation by other research groups against sedentary controls, we need it testing against other disorders that can cause fatigue - especially anorexia nervosa, eating disorders, and depression?

 

[alex3619]

You mean sixty-five years of single day CPET testing, where Snell wrote - CFS patients were normal and showed no abnormality. I really don't understand your point. Show me the evidence from 2 day protocols over sixty-five years?

The point is that this 2-day portocol is new. And I fully agree with you, as well as validation by other research groups against sedentary controls, we need it testing against other disorders that can cause fatigue - especially anorexia nervosa, eating disorders, and depression?

CPET goes back 65 years. The 2 day protocol in ME and CFS is new. However there are references in the literature going back, one here one there, but not formal studies that I am aware of, that refer to testing two days in a row. This is how the idea that a single test was a stable result started, from my understanding. They needed to be sure the results from one day were the same as another.

Now I do not know if some of those studies were flawed with respect to the current situation, because repeat testing might not have always been done on consecutive days. To check for stability of results its possible that consecutive testing was not seen as needed ... possible but not likely. Indeed, Snell etc. keep referring to the accepted finding that second day results have a small margin of error. That did not come from ME or CFS research, but I have not had the time to track it down. I hope to do that better at some point, but probably not this year.

Workwell would be the place to ask this question.

 

[kermit frogsquire]

CPET goes back 65 years. The 2 day protocol in ME and CFS is new. However there are references in the literature going back, one here one there, but not formal studies that I am aware of, that refer to testing two days in a row. This is how the idea that a single test was a stable result started, from my understanding. They needed to be sure the results from one day were the same as another.

Now I do not know if some of those studies were flawed with respect to the current situation, because repeat testing might not have always been done on consecutive days. To check for stability of results its possible that consecutive testing was not seen as needed ... possible but not likely. Indeed, Snell etc. keep referring to the accepted finding that second day results have a small margin of error. That did not come from ME or CFS research, but I have not had the time to track it down. I hope to do that better at some point, but probably not this year.

Workwell would be the place to ask this question.

I've looked through the whole of pubmed searching for any number of combinations of "consecutive CPET" or alternative words and couldn't find any studies of 2 day tests.

If you actually read some of the articles I posted above - which review the whole area of CPET testing over 65 years - they explain that some of the variable (such as RER) were based on a very specific protocol of repeat intermittent exhaustive tests over a single day, and there were questions over the validity to incremental exercise (which is what we use for CPET today.

However, as far as I can find there are no 2 day in a row CPET articles specifically looking at CPET validity.

Having said that, there are numerous articles on exercising in general on cosecutive days - the findings of these articles state -

If you just keep going, without any rest, your body will soon start to fatigue and you’ll find it difficult to complete any exercise sessions.

If you have just started physical activity or performed a new exercise for the first time, you might be feeling ...

• Severe muscle soreness
• Muscle stiffness
• Decreases in strength
• Decreases in skill levels

The feelings you may be experiencing are referred to as Delayed Onset Muscle Soreness or DOMS for short. Although DOMS is not fully understood, it is thought that the feelings generally materialise sometime after the exercise is performed (hence the ‘Delayed’), this can be as long as 12hours after. Feelings may last from a couple of days or even reports of up to a week or longer.
http://www.ffnetwork.co.uk/fitnessfacts/recovery.php

To put it another way, a completely healthy person who has not exercised for a long time should suffer reduction in exercise performance on consecutive days plus a delayed onset syndrome that can last for upto a week or longer. This effect will be worse the longer someone has not exercised.

Hence why I questioned the validity of the "controls" in Snell's study. The controls in his study did massively better on day 2, plus they only had mild pain than lasted 24 hours - this doesn't really control for what we know happens in extremely unfit, deconditioned states.

Everybody knows the worst thing you can do if you are very unfit is do maximal exercise - it results in massive inflammation (see bed rested articles posted above). And even in healthy controls this can result in a delayed severe syndrome lasting up to a week or more. We need to assess the affect of very unfit controls and confirmation of Snells findings before any conclusions can be drawn.

 

[kermit frogsquire]

As an addendum to the above -

Look, regarding Snell's results and the findings he has published in patients who were claimed to have ME/CFS - none of them will mean anything if another group of researchers does just a single study showing you can get the same results in very sedentary healthy controls. It is the control arm of the study that is important. That is not to say that the ME patients didn't have those findings, that is only to say the findings are not unique, and that is what is important.

If that happens - no one in the medical community will pay CPET testing any attention, even those very abnormal 1 day CPET tests that really do show a massive difference in ME patients will probably be dismissed. This is why both I and others (see message board above) are worried that Snell is doing more harm than good.

Snells claims of not just quick recovery in healthy controls, but improved supposed maximal exercise on consecutive days, fly in the face of what others have written about sports science in respect to very unfit people.

 

[kermit frogsquire]

Some more articles on DOMS and exercise.

http://www.ncbi.nlm.nih.gov/pubmed/12617692
http://www.unm.edu/~lkravitz/Article folder/domos.html

typical symptoms often associated with DOMS include strength loss, pain, muscle tenderness, stiffness, and swelling. Loss of strength usually peaks 24-48 hours of an exercise bout, with full recovery taking up to 5 days.

DOMS is often precipitated predominantly by eccentric exercise, such as downhill running, plyometrics, and resistance training. (Cycle ergometry is resistance training, as used by Snell in his studies.)

DOMS is typically experienced by all individuals regardless of fitness level, and is a normal physiological response to increased exertion, and the introduction of unfamiliar physical activities.

Generally, an increased perception of soreness occurs with greater intensity and a higher degree of unfamiliar activities.

It has been reported that repeated bouts of lower intensity eccentric exercise performed 1-6 weeks before the initial higher intensity eccentric bouts have been shown to consistently reduce DOMS and exercise induced muscle damage.

Therefore it is vitally important that patients and controls in any study of 2 day CPET testing have similar levels of previous exercise, because previous exercise modifies the DOMS effect - it modifies the degree of drop in performance, and therefore magnitude drop in peakVO2, on consecutive testing, especially for resistance training. Also is vital that patients and controls perform absolutely maximally on day one, to induce the same degree of DOMS in day 2.