Article in UK Royal College of GPs Journal

[olliec]

I'm interested in CPET too. It's obviously entirely inappropriate for those at the sicker end of the scale, but many housebound patients would probably endure a relapse to get data that could be used to further research, or support disability claims. I have never heard of someone using two-day CPET results to claim disability in the UK, but I do wonder if it's possible.

Just imagine how much we'd know today if the money that went into PACE had gone into a huge exercise physiology study of fatigued patients - we might even have some subsets. But perhaps Dr Enlander's Sinai exercise study will do a bit of that for us.

 

[alex3619]

The issue with the most severe patients is worrying. 2 day CPET cannot be used by them. These are also the patients, like Karina Hanson, who are most likely to be sectioned. Something else is required as a test for them.

I think however that many severe patients who can do the first test will not need to do the second. If sufficient disability is found with the first test, which I think may be the case at the severe end, then no second test would be required to show disability.

However if 2 day CPET is commonly used, then ME is commonly accepted, this alone might be enough to change medical perception.

 

[MeSci]

The issue with the most severe patients is worrying. 2 day CPET cannot be used by them. These are also the patients, like Karina Hanson, who are most likely to be sectioned. Something else is required as a test for them.

I think however that many severe patients who can do the first test will not need to do the second. If sufficient disability is found with the first test, which I think may be the case at the severe end, then no second test would be required to show disability.

However if 2 day CPET is commonly used, then ME is commonly accepted, this alone might be enough to change medical perception.

Severe patients could perhaps do a specially-adapted version of CPET. They may have similar biochemical changes after a very small task to those which higher-functioning patients have after greater exertion.

 

[alex3619]

Hi @MeSci, I do think this might be done with a supine bike, or a similar device for hands, but they must be able to use the device. With such high severity I think only one test should be needed.

 

[Firestormm]

The issue with the most severe patients is worrying. 2 day CPET cannot be used by them. These are also the patients, like Karina Hanson, who are most likely to be sectioned. Something else is required as a test for them.

I think however that many severe patients who can do the first test will not need to do the second. If sufficient disability is found with the first test, which I think may be the case at the severe end, then no second test would be required to show disability.
However if 2 day CPET is commonly used, then ME is commonly accepted, this alone might be enough to change medical perception.

I am not convinced however that it will be enough to change medical treatment i.e. GET and/or Activity Management. CPET is vigorous exercising - indeed one might equate it with poorly applied/badly delivered advice to 'get out and exercise' in an attempt to push through it.

I am playing devil's advocate.

Clearly, CPET does demonstrate this is not the way to do things, but it doesn't show that a gradual and graded (meaning a consideration of what one needs to do and then working out how best to achieve ones ends) is not a way to tackle the disability or at least to manage and learn to live with it.

I think when we talked on Simon's article thread about these results we spoke of a need to also consider longitudinal study. As again, these tests are only relevant at the time the test is taken and at that degree of effort - and as ever I am concerned that we must subject ourselves to this 'torture' in order to determine what it determines.

You wouldn't get someone with any other disease subjected to such a test or for that test to be actively talked about on Patient Forums as something they'd like to see used by doctors to diagnose their disability. Positively medieval!

If Wessely or White had come up with this test and rolled it out through NICE, patients would be appealing to the Court of Human Rights in droves

 

[alex3619]

@Firestormm , I doubt that they could get away with claiming the 2 day CPET does not mean anything. CPET is gold standard testing for disability, with 50 years of research behind it, and is used in every hospital in the world. I am paraphrasing, I think, Don Staines here, in that doctors who prescribe GET for ME should be struck off the medical register. The onus is on them to show that established testing for disability is not valid for a patient, not to guess its not valid and experiment with that patient's health. They should also be sued for criminal malpractice, which will bypass most of their legal protections I suspect. I think its time that legal, including criminal, sanction should be considered.

The way to treat this is indeed in some cases exercise, and gradual, but the practice is defined by testing and exercise experts, not psychiatrists, and so does not resemble any formal sort of GET out there. Further it has been shown in individual cases (and may be unethical to do this in a large cohort) that it is indeed possible to get patients to exercise harder and for longer in a graded fashion, but this can result in us in a decline in fitness, as noted by Stacy Stevens. Simply doing more exercise is not necessarily reflected in an improvement in functional capacity. Its a false gain.

Patients are lining up to volunteer to do this testing, and also paying for it. It does our community a disservice to believe we don't do things that have strong evidence backing them. However I do think nobody should be forced into doing this kind of testing. I am concerned that insurance agencies, and government organizations like DWP might threaten to sanction people who do not do testing, and so create a situation where they are indirectly forced into testing.

We do need other tests. I am hopeful that one or a combination of other biomarkers might work to be diagnostic. I am also concerned about this however as it might require spinal fluid, which is a dangerous test. A small percentage can become paralyzed after such testing.

Only a blood based diagnostic marker is going to be both safe and usable on the most severe patients.

The thing about the 2 day CPET is that with some more validation studies it might make ME legitimate, which might help get better funding for the diagnostic alternatives. I suspect the 2 day CPET might be our first diagnostic test, but I also suspect it will be quickly superseded.

 

[MeSci]

I am not convinced however that it will be enough to change medical treatment i.e. GET and/or Activity Management. CPET is vigorous exercising - indeed one might equate it with poorly applied/badly delivered advice to 'get out and exercise' in an attempt to push through it.

I am playing devil's advocate.

Clearly, CPET does demonstrate this is not the way to do things, but it doesn't show that a gradual and graded (meaning a consideration of what one needs to do and then working out how best to achieve ones ends) is not a way to tackle the disability or at least to manage and learn to live with it.

I think when we talked on Simon's article thread about these results we spoke of a need to also consider longitudinal study. As again, these tests are only relevant at the time the test is taken and at that degree of effort - and as ever I am concerned that we must subject ourselves to this 'torture' in order to determine what it determines.

You wouldn't get someone with any other disease subjected to such a test or for that test to be actively talked about on Patient Forums as something they'd like to see used by doctors to diagnose their disability. Positively medieval!

If Wessely or White had come up with this test and rolled it out through NICE, patients would be appealing to the Court of Human Rights in droves

"a consideration of what one needs to do and then working out how best to achieve ones ends"

Isn't that what most of us do most of the time? It certainly is for me.

As for the CPET being torture or medieval, I would much rather undergo that than some of the horrible invasive tests carried out routinely for other conditions, e.g. endoscopy for coeliac disease, cervical smear tests for cervical cancer and colonoscopy for bowel cancer. Are they torture or medieval...? (Actually, I think they may be )

 

[Firestormm]

My endoscopies have been fine. No experience of course of cervical smears... but the point was that the way people do carry on about GET under certain practitioners or in general - I do find it 'odd' that they seem to welcome this CPET as a standard 'test' when we know not what is causing people who 'fail' the test (or 'pass' it) to be judged as '........' (fill in the gap) disabled? Unable to complete the test?

This is not a test that determines a person has ME - not yet. I don't really know what it determines other than that the person - at the time they do it - falls below the level of a 'normal' if sedentary (I think Simon said they were unconditioned) control.

Also, let's not forget, there were only 10 controls. I don't know why people are 'rushing' as Alex says to do this test other than that they think it proves something.

Way I am feeling today, if I walked to the shops and back I would prove to myself that I was in no fit state to have done it and would end up in bed as a result - I have no doubt. CPET tests only certain things - not all of those things that we have come to associate with PEM.

It doesn't test or explain what PEM is or why the symptoms we experience 'flare' as a result of exertion to this extent. I haven't heard that they even reported on the result of these experiments - only on the experiment outcome itself. Did everyone doing the test report subsequently the same degree of incapacitation or indeed of time to recover? What were the symptoms experienced? Etc. Etc.

Is it a 'good result'? Yes. But I just don't think it can be used as some are claiming it can.

 

[Purple]

@Firestormm

The two-day CPET shows that people with ME cannot maintain activity two days in a row - and that is what indicates and measures disability. It is not simply about hard aerobic exercise. The CPET also shows e.g. the anaerobic threshold and from this and other measurements, number of daily METs available can be calculated etc. Look up the information/presentations/videos where Dr Snell talks about this.

While it it not known what causes the drop in capacity on the second day, it shows the drop - and therefore this is measurable. And as long as the practical implications of the results of the CPET on the health of the patient are not known, caution is needed.

 

[Firestormm]

@Firestormm

The two-day CPET shows that people with ME cannot maintain activity two days in a row - and that is what indicates and measures disability. It is not simply about hard aerobic exercise. The CPET also shows e.g. the anaerobic threshold and from this and other measurements, number of daily METs available can be calculated etc. Look up the information/presentations/videos where Dr Snell talks about this.

While it it not known what causes the drop in capacity on the second day, it shows the drop - and therefore this is measurable. And as long as the practical implications of the results of the CPET on the health of the patient are not known, caution is needed.

If I recall correctly, Purple, it shows that someone who exercised in this way on Day 1 could not reach the same levels on Day 2. And on Day 1 there was little difference compared to controls but that on Day 2 the cohort with CFS could not attain that same degree of exercise. You are right I think about the use of aerobic and anaerobic use of oxygen.

We did discuss this a lot in the comments beneath Simon's article and on the preceding thread when the results were announced and to which he links.

Personally, I think it makes more sense to use a measure that better reflects daily life - the life we all struggle to maintain repeatedly - and not exercising to capacity and in this way - but there we go.

I still maintain that it is useful - but not to the extent that some claim and certainly not as a diagnostic measure for the disease, but rather for a level of incapacity which is dependent on the individual being able to exercise in this manner in the first place - and return to try it again on Day 2.

It is also - at this stage - only indicative of something more widespread I think. It needs a lot more work and if I had the money I'd be happy to see more donated to such an effort - but I do wonder if the work of Julia Newton is not going to provide some answers more readily that will make this test unnecessary.

I think I'll leave it there. I seem to have taken this thread off-piste more so than others have. Sorry about that.

 

[Valentijn]

The issue with the most severe patients is worrying. 2 day CPET cannot be used by them. These are also the patients, like Karina Hanson, who are most likely to be sectioned. Something else is required as a test for them.

Another possibility is that the 2 Day CPET can create a distinct group, who can then be studied further. That might then yield blood or other abnormalities which can be used to diagnose more generally.

 

[alex3619]

Another possibility is that the 2 Day CPET can create a distinct group, who can then be studied further. That might then yield blood or other abnormalities which can be used to diagnose more generally.

Yes, identifying subgroups like this will help everyone. A more less heterogeneous group will allow better studies and so lead to a test sooner. The people with no such abnormality will then also be in a more less heterogeneous group. Everyone wins.

PS What was I thinking?

 

[WillowJ]

When I had my first severe attack of hyponatraemia, had a violent Parkinson's-like tremor and could barely stand up, talk or hold the phone and was even having some difficulty breathing, I phoned my GP two or three times to try to get him to visit (partly because I was extremely frightened, not knowing what was wrong and worrying that I might even die, which turned out not to be so far-fetched) he kept telling me to come to the surgery! There was no way that I could. It was weeks later that I was well enough to get there, when my blood sodium was still low (no longer dangerously so), but of course all the severe symptoms had gone, ditto any obvious physical abnormalities, hence the incident being recorded as a panic attack despite my repeated assertions that it was physical.

my doctor believed me, but told me to take a video if I could (for something else that was going on, which was more visible than usual)

 

[MeSci]

my doctor believed me, but told me to take a video if I could (for something else that was going on, which was more visible than usual)

Wow - that's some unusually modern thinking for a doctor! I would have needed someone else to take the video though, as I could hardly hold anything, even briefly. And I live alone, which made it especially frightening. I couldn't get replies from any friends I managed to try to phone.

There have been times when I would have liked to email a photo to a doctor, e.g. of a rash or swelling, but that is probably too modern for 99.9% of UK doctors. It could save so much time and energy.

 

[WillowJ]

Wow - that's some unusually modern thinking for a doctor! I would have needed someone else to take the video though, as I could hardly hold anything, even briefly. And I live alone, which made it especially frightening. I couldn't get replies from any friends I managed to try to phone.

There have been times when I would have liked to email a photo to a doctor, e.g. of a rash or swelling, but that is probably too modern for 99.9% of UK doctors. It could save so much time and energy.

living alone does make it difficult. I wasn't sure I had anything to take a video with, but it quit happening when I was able to more rest.