New paper: Inability of ME patients to reproduce VO2 max indicates functional impairment

[A.B.]

I found a good introduction to CPET: CPET intro

An important point is that CPET provides objective measures of exercise capacity. It's not possible to fake a transition from aerobic to anaerobic metabolism, and the RER value is considered a measure of how hard the patient tried.

The document also says it's used for "assessing the progress of rehabilitation from major illnesses".

 

[*GG*]

I get missing it for a few years... but I think this is just another piece to prove that our symptoms were dismissed for far too long. I'm sure some doctors hear "I get really fatigued after excercising" and assume it's because we tried to do too much too fast.... and/or 'everyone gets tired after exercising'.... and didn't connect the dots that it's the extremeness of our reactions.

Or, as people are aware of some of the history of our illness, the gov't/medical establishment has not made any appreciable gains in treating our illness in a Generation! So perhaps they just don't want to help us!!

GG

 

[chipmunk1]

Or, as people are aware of some of the history of our illness, the gov't/medical establishment has not made any appreciable gains in treating our illness in a Generation! So perhaps they just don't want to help us!!

I think it is too hard to give up the superstition of psychosomatic illness where everyone but the patient can feel good about themselves.

One third of the people who go to a hospital or see a doctor have symptoms that can't be medically explained. Labeling them as somatoform/psychological is the most convenient way to deal with problems where no real solution can be found.

The most convenient solution is to label the patient as a headcase so they stop asking for help, be ashamed about themselves and stop bothering others with their problems.

If the docs have to admit they have not the slightest idea what is going on in 33% of cases they see they are no longer god-like beings but only fallible humans.

In fact the idea the incredibly complex human body can be completely understood with today's knowledge and technology, and 100% of diagnoses are already known is incredibly stupid and unrealistic yet the way medicine deals with "somatoform" disorders implies that they actually really seem to believe this.

 

[NK17]

I'd like to jump into this very important thread by quoting Prof. Gavin Giovannoni, the amazing clinician who is one of the few stalwarts of real scientific clinical translational medicine in the MS field:

When we go against beliefs and believers with science, we are not on the same ground, we don't speak the same language.
IMO finally the ME/CFS research field is starting to attract real scientist, but we still have to go against the believers and be able to dismantle their illogical doings by being heard, by somehow becoming visible and by having our true defenders bring logic and only scientific hypothesis on the table.

 

[alex3619]

I thought I was almost the only one here quoting Popper. Popper called psychoanalysis nonscience (possibly from 1922), and later on the term pseudoscience was used. If it cannot be potentially disproved, then its not science. If its not science and claiming to be science its pseudoscience.

 

[NK17]

I thought I was almost the only one here quoting Popper. Popper called psychoanalysis nonscience (possibly from 1922), and later on the term pseudoscience was used. If it cannot be potentially disproved, then its not science. If its not science and claiming to be science its pseudoscience.

@alex3619 maybe I should change my avatar and become the Popper on PR

 

[chipmunk1]

I'd like to jump into this very important thread by quoting Prof. Gavin Giovannoni, the amazing clinician who is one of the few stalwarts of real scientific clinical translational medicine in the .

It's always interesting to go back in time and look up what the all knowing doctors did back then.
Some of the scary stuff that happened just 60 years ago...

"Emotional" causes for rheumatoid arthritis. 1947)

http://www.nhe.net/jointpainrelief/295.pdf

FOR a long time it has been recognized that
emotional factors play a role in rheumatoid
arthritis. Nicolson (10) and Williams (17) studied
the effects of hypnosis in such patients. Emer-
son (3), Thomas (15), Pottenger (13), Nissen and
Spencer (11), McGregor (9), Cobb el al. (2), and
Ripley et al. (14) have contributed important obser-
vations on the relationship of psychologic factors
to rheumatoid arthritis.

Fenichel reported a female case of MacFarlane's
(8) whose arthritic symptoms had a double psy-
chological meaning. Unconsciously it meant for
the patient both a punishment for her hostile com-
petitive feelings toward men and an atonement for
her favorite activity, dancing, of which her father
had disapproved.

Booth (1) and Halliday (5, 6) have reported
highly significant observations of the personality
traits and psychologic factors in rheumatoid ar-
thritic patients. Groddeck (4) reported analysis of
a woman with spinal arthritis in which the disease
seemed to be a defense against the heterosexual
role

The fact that these patients express and dis-
charge unconscious emotional tendencies through
the voluntary muscles puts their symptoms in the
category of hysterical conversion. At least, the
modus operandi is the same as in conversion hys-
teria—namely, the expression of an unconscious
conflict by somatic changes in the voluntary mus-
cles. Our present assumption is that these muscle
spasms and increased muscle tonus under certain
conditions may precipitate an arthritic attack.

Sounds familiar?

If treatment for hysteria doesn't work then electroshock the patient.

Insulin and E.C.T. in Treatment of Rheumatoid Arthritis (1950)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2038953/

It was reported to be effective whatever that meant.

 

[SOC]

This paper makes a very clear statement that our post-exertional decline is unique to ME/CFS. Not only is the decline not seen in healthy controls, it is also not seen in patients with other serious illnesses.

ME/CFS patients currently represent a unique class of ill patients who do not reproduce maximal CPET measures, unlike individuals with cardiovascular disease [27,30] lung disease [28], end-stage renal disease[26], pulmonary arterial hypertension [25] and cystic fibrosis [29].

 

[alex3619]

[Only half serious] Psychiatry has a long history of claiming every disease that is not understood. We don't know what it is, therefore its psychiatric. Psychogenic medicine has made a very great many such claims. They have been proven wrong a great many times. How many times have they been proven right? Zero. Divide a large number by zero, what do you get? Infinity. Therefore it is infinitely more likely they are wrong than right.

[I am only half serious as this is a logical fallacy. It does however serve to illustrate a point.]

If we can get more funding for research and use CPET as an objective endpoint in any interventional study for at least mild and moderate patients, then it will become the defacto Gold Standard. We can then get a meta-analysis of the combined studies etc. Step by step it will become the standard of choice, and indeed it has already been used as a measure of outcome. So any other study without an objective outcome measure will be seen as clearly inadequate.

Objective outcome measures usually trump subjective outcome measures, particularly when bias (especially psychological bias) is involved. Furthermore at some point somebody is going to do a CBT/GET study with CPET so as to try to show CPET is not useful ... and will get contrary results, showing that CBT/GET is not useful.

Those interested in the nonsense that is psychogenic medicine might like to read the first of my three blogs on BPS, then follow the links to the other two:

http://forums.phoenixrising.me/inde...e-and-fall-of-the-biopsychosocial-model.1075/

Those interested in an indepth discussion of the fallacies of psychogenic medicine might like to read Angela Kennedy's book: http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952/ref=cm_rdp_product_img

I have yet to find a good discussion of the history of CPET.

In addition to electroshock and insulin therapy, psychiatry has included such stellar treatments as lobotomies, removal of all teeth (the mouth is full of germs, which are close to the brain) and surgical removal of the colon (as its also full of germs).

 

[WillowJ]

This paper makes a very clear statement that our post-exertional decline is unique to ME/CFS. Not only is the decline not seen in healthy controls, it is also not seen in patients with other serious illnesses.

ME/CFS patients currently represent a unique class of ill patients who do not reproduce maximal CPET measures, unlike individuals with cardiovascular disease [27,30] lung disease [28], end-stage renal disease[26], pulmonary arterial hypertension [25] and cystic fibrosis [29].

Before concluding this can show how PEM is unique, I would like to see it tested in diseases with channelopathy components, like MS and especially myasthenia gravis.

And also diseases that wreck the muscle and/or muscle metabolism, like Ehlers-Danlos syndrome, FM, and mitochondrial diseases. (Though cystic fibrosis and those other diseases might wreck muscle metabolism though insufficient oxygen?)

I do suspect the various PEMs are different, but I do not know whether we have yet shown that this particular test can diagnose the specifics of our PEM.

 

[Valentijn]

Furthermore at some point somebody is going to do a CBT/GET study with CPET so as to try to show CPET is not useful ... and will get contrary results, showing that CBT/GET is not useful.

I think you underestimate their capacity to spin.

Dreadful 2nd-day CPET results after a year of CBT/GET will merely prove that our cardio-pulmonary function is not relevant in "curing" us. This will be demonstrated by patients giving the appropriate answers on questionnaires regarding their emotional state

 

[biophile]

It would be interesting to see whether CPET parameters could be changed by, or used to predict the response to, CBT/GET. If these therapies failed to improve CPET parameters, I would expect exactly the same spin that has been previously applied to the failure of CBT/GET to increase total physical activity levels despite being a pillar of the model:

"[CBT/GET does not improve physical activity levels (or CPET parameters) as expected in our model. Oops we were wrong, should we apologize for leading everyone up a blind alley for 20 years? Nah] The reliable reduction of self-reported fatigue and disability in CFS patients who receive CBT/GET is not mediated by an improvement in objectively measured [physical activity levels] CPET parameters. Any discrepancy between subjective and objective outcomes means that we should [take another look at our own assumptions about the nature of reported improvements] use this to claim that patients have faulty cognitions about their own performances which must be corrected with or assumed correct after receiving CBT/GET."

 

[MeSci]

The fuse is lit. The unproven hypotheses psychobabblers have been using are about to be demolished.

 

[peggy-sue]

Do Sjorgen's and Lupus not include PEM?
I didn't think we were totally exclusive on this.

 

[MeSci]

The fuse is lit. The unproven hypotheses psychobabblers have been using are about to be demolished

 

[alex3619]

Do Sjorgen's and Lupus not include PEM?
I didn't think we were totally exclusive on this.

I am not clear that has been established. Its also on the cards HIV AIDS might include it. The group I really want tested though is Gulf War Illness veterans.

I think MS is tentatively ruled out though.

However, and this is the beauty of it, if its not diagnostic of ME or CFS it doesn't matter much. It would still be diagnostic of severe disabling pathophysiology.

 

[Marco]

I am not clear that has been established. Its also on the cards HIV AIDS might include it. The group I really want tested though is Gulf War Illness veterans.

I think MS is tentatively ruled out though.

However, and this is the beauty of it, if its not diagnostic of ME or CFS it doesn't matter much. It would still be diagnostic of severe disabling pathophysiology.

Whether you (or they) call it PEM I'm pretty sure I've come across research reports of exercise intolerance (pretty common) plus prolonged exacerbation of symptoms in both GWI and post concussion syndrome.

 

[alex3619]

Just added a comment on my Facebook page: https://www.facebook.com/alex.young.98434?ref=tn_tnmn

This month saw the publication of a very important paper on testing for ME and CFS.

http://www.translational-medicine.com/content/pdf/1479-5876-12-104.pdf

This is independent confirmation of something that many of us have known for years. There is probably diagnostic test for ME and strictly defined CFS, and even if it turns out it is not diagnostic of CFS or ME due to other diseases having the same issue then its still diagnostic of severe disabling pathophysiology in even mild and moderate patients. Sadly severe or very severe patients may be too sick to be tested.

CPET is Cardio Pulmonary Exercise Testing. Its routinely used in cardiac and pulmonary disease, and has been used in research since at least 1949, though it may be older. In 1963 it was widely disseminated due to the Bruce Protocol for testing cardiac patients.

The key pathophysiology in ME is delayed worsening after activity, not chronic fatigue. Such worsening is severe, and prolonged, and not always recovered from, ever.

In 2007, at Pacific Fatigue Labs (now the Workwell Foundation) they showed that this is measurable using CPET. Unlike any other disease tested so far, CFS and ME patients have a massive crash in capacity to produce energy that is a delayed response. This crash persists for some time.

Rest does not fix it, though may prevent it getting worse. Exercise is possible, but severely limited, and cannot be aerobic without doing harm. The aerobic energy system is broken and cannot be reconditioned. That means we have about two minutes of available energy at any one time, presuming we have just rested, after which we do damage.

The medical profession could have used this test at any time in the last 65 years. They have failed to do so, they have even failed to recognize this test even exists. That's 65 years of global failure from the entire medical profession and medical researchers. You can understand why a single individual might miss this, but for everyone to miss it for 58 years, and almost everyone for 65 years, demonstrates a severe and deeply entrenched flaw in medical processes.

Everyone with ME and CFS is deserving of an apology from every doctor, bureaucrat, insurance clerk, abusive relative or friend, and especially psychiatrist, who is part of the huge well of ignorance on this issue.

So far only the Norwegian government has made a public apology, but that is a different story.

PS How do I edit a Facebook post to get rid of typos etc? This post does not have the usual edit feature.

 

[alex3619]

Whether you (or they) call it PEM I'm pretty sure I've come across research reports of exercise intolerance (pretty common) plus prolonged exacerbation of symptoms in both GWI and post concussion syndrome.

Post concussion syndrome is new to me. I was aware of GWI, its why I want them included in testing. Of course its also possible GWI is similar to, or even just a symptom variant of, ME.

 

[Sidereal]

Do Sjorgen's and Lupus not include PEM?
I didn't think we were totally exclusive on this.

One does hear patients with systemic autoimmune diseases like those you listed talk about "payback" if they overdo it but I don't know if anyone has looked at this with CPET. Fatigue tends to be dismissed as an unimportant or subjective component of illnesses even though it is often the most disabling.