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Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 14, 2013.

  1. Nielk

    Nielk

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    Ember - I am not sure I understand your post above.
  2. Ember

    Ember Senior Member

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    As I understand it, the cardiopulmonary exercise test that's included the CCC might be given to heart or lung disease patients as well to determine their functional capacity and disability category. Dr. Unger is willing to use such a test. She said at the CFSAC meeting, "So our goal, and we've discussed it with some consultation of exercise physiologists, that there is something, good data, that we can get from a maximal exercise test that can be done at one day."

    According to the ME Primer though, the test for PENE gives results that are unique to ME. “In a 2 consecutive day comprehensive 8-12 minute cardiopulmonary exercise stress test (measuring heart, lung, and metabolic function), only ME patients have significantly worse scores the second day & abnormal recovery from exertion:”
    Therefore, PENE "can differentiate ME patients from those who are depressed or have other fatiguing conditions."
  3. Firestormm

    Firestormm Senior Member

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    Thanks much appreciated :)

    Perhaps I should have been more succinct. I meant in relation to other distinct medical conditions in which PEM might apply.

    For example there is a study underway that is looking at PEM in ME and whether or not it applies (and to what it extent it might) in Cancer I recall.

    I was thinking myself about e.g. arthritis and perhaps rheumatoid although osteo might also be a worthy candidate.

    I believe Newton is looking at Primary Billiary Cirosis. But one could even look at MS. Indeed any 'fatiguing' condition that does not fall within the CFS/ME umbrella.

    We need to better evident that ME does indeed have this distinct characteristic. That someone with MS doesn't also feel extremely worse after exertion. If you see what I mean.

    Publish some studies and then we might get taken more seriously and this PEM might be adopted as a distinguishing feature - and in some way applied across the board as something that can be tested for.

    Does everyone with the kind of muscle-response abnormality - being found in e.g. Newton's work - also experience PEM? Is another consideration i.e. is it down to the muscles and bodily responses thereafter?

    Is there a 'defect' of some sort biologically that is endemic in these people and are they the same people with PEM and other 'ME' (as opposed to CFS) characteristics/symptoms in whatever criteria one happens to conjure?

    It is also hard to conceptualise what might happen if you were to 'lose' PEM as a noticeable symptom - would you then become 'CFS' or be 'cured'? But we've had these 'transition across the spectrum' discussions before...
  4. Ember

    Ember Senior Member

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    PEM may not be unique to any particular medical condition. But according to the ME Primer, PENE is unique to ME.
  5. Bob

    Bob

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    I don't understand why some people are suddenly saying that depression involves post exertional malaise.
    All my life, I've been told, categorically, that exercise is good for depression, and that depression responds positively to exercise.
    Although, I never believed it, because this wasn't the case for me personally. My teenage depression never responded positively to exercise, ever. And I was extremely active.
    I thought it is often said that one way to help distinguish ME from depression is that they both respond differently to exercise.
    But I don't know what evidence all the above is based on, because I've never done much research in relation to depression.
    Some of the 'experts' tell so many lies about CFS/ME, that it's quite possible that the 'experts' frequently misrepresent the facts about depression as well. Actually, I know that they do. And many of them are ignorant about the subject.
    Valentijn and Nielk like this.
  6. Bob

    Bob

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    Firestormm, I agree that all aspects of CFS/ME need to be investigated further, including PEM.
    But I have yet to hear of any other illness that features PEM in exactly the same way as CFS/ME.

    I've always understood that other illnesses do indeed feature post-exertional fatigue, and perhaps even post-exertional malaise, but that it is the characteristics of PEM in ME patients (and a subset of CFS/ME patients) that makes it unique.

    I think perhaps it would be more accurate to refer to it as a 'post-exertional symptom flare-up'.

    PEM in ME is characterised by a delayed & prolonged adverse reaction to exertion in which a range of symptoms can increase in severity, including pain, exhaustion, and cognitive issues. This is perhaps unique in ME, and I've yet to see any information that demonstrates otherwise. (But I'd very much like to see it if there is any!)

    And Ember says: "...according to the ME Primer, PENE is unique to ME", although I'm not clued up on the evidence on which they base this conclusion.

    There is research in this area. Admittedly, probably not enough, or of good enough quality.

    For example, this small study...

    VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. (2010)
    Postexertional malaise in women with chronic fatigue syndrome.
    J Womens Health (Larchmt). 2010 Feb;19(2):239-44.
    doi: 10.1089/jwh.2009.1507.
    http://www.ncbi.nlm.nih.gov/pubmed/20095909

    If anyone knows of any larger studies re PEM, I'd be grateful for the info.
    I'm looking for some at the moment for a project that I'm doing.
    Valentijn likes this.
  7. Firestormm

    Firestormm Senior Member

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    OK. I am going to say it - but maybe I just need to better appreciate where these people are coming from - isn't it semantics at this point? :confused:
  8. Firestormm

    Firestormm Senior Member

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    Thanks Bob. Crossed posts. Will have a read later. Off to rest :)
  9. Bob

    Bob

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    No, it's not semantics, it's the characteristics of PEM/PENE that are important.
    For example, marathon runners experience post-exertional symptoms (e.g. fatigue, pain, exhaustion, weakness etc), but their post-exertional condition does not have the same as characteristics as PEM or PENE in ME patients.

    OK, crossed posts again. Rest well. :)
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  10. Enid

    Enid Senior Member

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    Those in the know have tried over years to rename - bearing in mind the systems affected - neuro/endocrine/immune - and no single symptom fully describes though may predominate at given times. Now where is a definition - most likely to me the immune system.
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  11. Firestormm

    Firestormm Senior Member

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    You say PENE I say PEM - that's the semantics I was referring to my friend. Not that medical-PEM wasn't unique :)
  12. Nielk

    Nielk

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    Some believe that PEM/PENE should really be more like PER - Post Exertional Relapse. By relapse, I mean that many of the symptoms of the illness either return or get worse. For example, when I experience PER, symptoms which I had when I originally became ill return, such as sore throat, chills, weakness and other symptoms get aggravated like pain, cognitive problems and sensory sensitivities. It's as if I'm back to square one - temporarily. I think that this issue seems to be unique to ME/CFS.
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  13. Ember

    Ember Senior Member

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    PENE is key to challenging Dr. Unger, not to be dismissed as "semantics." Dr. Unger isn't yet willing to use the test-retest cardiopulmonary exercise protocol.

    During the CFSAC meeting, the CDC was asked, “Are you including the 2-day CPET with gas measurements in the second phase of your study? If not, what measures of PEM and immune functioning are you using?” Here's my transcription of Dr. Unger's response, omitting Steve Krafchick's follow-up questions:
    Dr. Unger wrote in her June 5 letter, “The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.” Why then won't she administer the test that distinguishes and allows for the separating out of ME? Her reasons sound more like excuses to me.
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  14. Bob

    Bob

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    That's very interesting. I had exactly the same experience recently. I had a bad relapse, and it felt very flu-ish, including a mild fever, just like when I first became ill. Exactly like you describe, it felt like I was back to square one, but luckily this acute state was temporarily, as I started improving quite quickly (within a month or two), unlike the first time. I wonder if this sort of relapse is due to deconditioning! :rolleyes:

    Also, my thyroid levels started playing up again (over-active thyroid on this occasion), the moment my relapse started, whereas my thyroid levels had been normal for ages previously. (My thyroid first went funny about three years after I got ME, and the levels fluctuate, sometimes clinically abnormal levels and sometimes sub-clinical.) The thyroid upset seemed to be directly related to the relapse.
    Interesting that the thyroid levels should immediately shoot upwards, on the first day of my relapse. I wonder what could be learned from that, biologically. e.g. could it be related to a virus, or an endogenous retrovirus, or an autoimmune issue, or something else?
    In an ideal world, I'd have some thyroid tissue taken for analysis, by an ME researcher.
  15. Nielk

    Nielk

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    This is a quote from the letter to DHHS.
    From listening to Dr. Unger at the CFSAC meeting, I had the same feeling. I think that Unger believes that this is the case. I think that she believes that there is the broader CFS illness with subsets of which ME is one of them. How will this affect us if this becomes a reality?
  16. Bob

    Bob

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    Just some of my thoughts...

    I think I have heard Unger talk about 'ME' as a separate entity, or as a subset of CFS, as if she is open minded to it, but I get the feeling that she is looking for high quality up-to-date empirical research results before she will entertain the idea seriously

    Unger does seem to be pro-actively looking for subsets of CFS, in the CDC's diagnostic criteria study, which I think is the right direction of travel.
    But I'm not convinced that she is pro-actively looking towards making ME a separate diagnosis, or a subset of CFS.

    I get the feeling that she is open-minded towards the results of her study if any subsets show up.
    But perhaps she isn't yet using the most sophisticated methodology, such as second-day VO2 Max testing.
    She is now starting to look at some biological testing, and perhaps this will be an open-ended study until they get some useful results.
    There has been explicit pressure on her to use VO2 Max two-day testing (e.g. at the CFSAC meeting), so perhaps there's a chance she will end up incorporating it into the CDC's research.

    .
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  17. biophile

    biophile Places I'd rather be.

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    IIRC, VO2 Max testing usually requires two tests to show obvious problems in ME/CFS, but the Light's gene-expression test takes only one. Perhaps they are focusing on doing the latter here because it requires less equipment at the clinic? A single VO2 Max test may indicate some disability but this may be attributed to deconditioning, another focus of the CDC?
    Valentijn likes this.
  18. WillowJ

    WillowJ Senior Member

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    I've seen some recent studies saying it isn't the case that exercise helps depression. Or at any rate, I saw the news articles. Don't know the quality of the study(ies).

    It's my understanding that if you ask people with some depressive illnesses if they feel worse or more tired or something general like that, after exercsie, some percentage of them will say yes.There is some evidence for mitochondrial defects in MDD, BPD, etc., and this could be what is going on there although this is pure speculation, maybe it is something else.

    Also in EDS (Ehlers-Danlos Syndrome; thus everywhere I use this abbreviation), people who do exercise (the specialists wil claim the wrong kind of exercise with joints not supported, thus walking is bad, swimming is good - I have no ability to evaluate this claim) will have an immune reaction producing joint pain the next day. Thus, a kind of PEM.

    There may be other examples.

    However as has been said, I am not sure that any other diseases have a reaction with feeling like one has flu, pneumonia, and a collapse in pulmonary function.

    About the Stevens protocol, not everyone is able to do that (for example, it would have very severe consequences if I tried to do that), so it cannot be used as a diagnostic requirement.
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  19. alex3619

    alex3619 Senior Member

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    I don't think repeat VO2max testing showing a decline on the second day can every be rationally attributed to deconditioning. So far we are the only disease group in which this is seen. This is why a single VO2max test is so limited, as you suggest biophile.

    So far as we know this is unique to ME, but we do NOT know that for sure. Broad testing to validate this point has not been done to my knowledge, but I think it will be and I am hopeful this can be a diagnostic test, a treatment test, and a test to establish disability. In the meantime its the best test we have for one simple reason: lab facilities for VO2max testing, while not common, are ubiquitous. Every large hospital probably has one, and so do most sports clinics, plus there are probably private clinics. Moreover the facilities to do the testing run at about $50,000. However the kind of cytokine/hormone testing the Light's used it cutting edge labwork I think, though I could be wrong. The limiting factors with VO2max testing, especially repeat testing, are that severe to very severe patients can't do it, and it may be a stuggle to convince a lab to do repeat testing.
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  20. WillowJ

    WillowJ Senior Member

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    It would still be good to change the name because that one is inherently confusing.

    It doesn't explain anything. Lupus, Multiple Sclerosis, cancer, vitamin D deficiency, major depressive disorder, Ehlers-Danlos Syndrome, and many more - all cause fatigue, plus normal healthy people experience fatigue both in healthy states (e.g. after work or exercise, before resting from that) and in not-so-healthy states (e.g. lack of sleep).

    And so people who are tired sometimes or often and not diagnosed with something else (whether because it's not a pathological condition or because their doctor didn't look for or didn't find a cause) think they have "Chronic Fatigue Syndrome" whether they have any of the specific signs and symptoms that go with the actual disease of ME/CFS or not.

    And even doctors and researchers may diagnose patients whether or not they have any of the specific signs and symptoms that go with the actual disease.

    Also because people who are not sick experience fatigue, it sounds trivial. And politically, people don't want to help us partly because it sounds trivial (partly also because of the bad publicity, but I'm sure that's easy for them to accept and harder to deconstruct, because of the cheesy name). There are actually studies that show that (medical or nursing, forgot which) students and allied health professionals take the disease somewhat less seriously when it's named CFS as compared to ME or Nightengale disease.

    As Alex3619 mentioned, the definition is more important to getting good science. In the end, it's good science (recent, high number of patients enrolled, replicated science) which will provide the impetus necessary to change the name and, most important, how we are managed (i.e. like patients with a proper serious disease, as we are - even if it's multiple diseases, we are each a patient with a proper serious disease).

    And one day whatever it is we are called, that will sound serious to people the same way that MS, myasthenia gravis, and other such diseases do.

    But we need an agreed diagnostic protocol (that health authorities accept and promote) which is not a diagnosis of exclusion, for that to happen.
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