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Multiple Sclerosis/Chronic Fatigue Syndrome overlap: When two common disorders collide

Discussion in 'Latest ME/CFS Research' started by Bob, Jun 27, 2015.

  1. Bob

    Bob

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    This came to my attention via Tom Kindlon on Twitter. Note that it's a 2014 paper. (Perhaps I shouldn't have placed this in the ME/CFS section of the forum, as it's a study of primary MS patients.)

    It's not open-access.

    [I'm not sure if they are testing these MS patients for ME symptoms or for chronic fatigue
    . The abstract says that "the subjects were screened for CFS/ME symptoms", but it doesn't say which criteria were used.]

    If these MS patients experience the same type of post-exertional exacerbation, as seen in ME patients, then this study could demonstrate an interesting association between MS and ME. Edit: However, Fukuda criteria were used in the study, and Fukuda doesn't require post-exertional exacerbation.


    Multiple Sclerosis/Chronic Fatigue Syndrome overlap: When two common disorders collide
    Gaber, Tarek A.-Z.K. | Oo, Wah Wah | Ringrose, Hollie
    Journal: NeuroRehabilitation, vol. 35, no. 3, 2014
    DOI: 10.3233/NRE-141146
    http://content.iospress.com/articles/neurorehabilitation/nre1146

     
    Last edited: Jun 27, 2015
  2. Dolphin

    Dolphin Senior Member

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    Fukuda criteria are mentioned:
     
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  3. Bob

    Bob

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    Ah, thanks Dolphin. I scanned the abstract for the criteria used, but didn't notice it.

    It's a shame they used Fukuda, because it doesn't answer the question of what sort of symptoms the subjects have. Fukuda patients can have PEM but they don't have to.
     
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  4. anciendaze

    anciendaze Senior Member

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    I've read statements about something very much like PEM in a subset of MS patients in reports that go back before CFS was available as a diagnosis. I've also learned that patients treated by MS doctors don't always meet official diagnostic criteria for MS. One clinic reported about 20% in this category.

    One problem with getting objective evidence of PEM in those patients is that most MS doctors recognize that having MS patients exercise to exhaustion is dangerous.

    I've decided that there is no sharp distinction between relapsing/remitting MS and ME/CFS except by those who consider MS a real disease and ME a matter of false beliefs. There are patients with problems closely associated with MS, like optic neuritis, vertigo, ataxia or localized parathesias, which insurance does not want to touch, who never develop the full disease. There are also patients who do develop the full relapsing/remitting disease years after an initial episode. This has caused MS doctors to use the term Clinically Isolated Syndrome (CIS).
     
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  5. alex3619

    alex3619 Senior Member

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    To my knowledge, and I do think we need a formal study, those with MS do not show the same problem on a 2 day CPET as ME patients do. PEM is one of those things that is interpreted different ways. This is a problem with every definition of ME and CFS ... either PEM is not required or its not sufficiently defined, together with appropriate doctor training. to be used properly.

    Having said that I wonder if the whole notion of a disease category is even appropriate for diffuse neurological diseases. One thing that keeps kicking around at the back of my mind is that MS, ME and probably many other diseases are zones or regions in a multidimensional spectrum. We just attach labels to them and pretend they are discrete diseases. Even when we have biomarkers for ME, and we have candidates awaiting validation, this may still be the case.
     
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  6. Ecoclimber

    Ecoclimber Senior Member

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    It's going to be hard to get past the ingrained mindset of reseachers from using a criteria other than Fukuda especially in correlation with other disease associations.for the immediate future.
     
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  7. SOC

    SOC

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    While I consider it possible that MS and ME/CFS are variants of the same condition, I think it is also possible that there are other explanations for the similarities or overlaps, the most likely of which is misdiagnosis between similarly presenting, but different conditions, particularly when 'atypical' presentations are accepted.

    Since this study used Fukuda, which does not require PEM, they did not necessarily find the coexistence of ME/CFS with MS. It is equally likely that they found a subset of MS with more than typical chronic fatigue (the symptom) and myalgia. It may be that an increase in the production of certain cytokines in both conditions is causing those symptoms in both groups.

    Which isn't to say the conclusion of the study is definitely wrong. It's quite possible that MS and ME can coexist. I just don't think their study eliminated enough confounding factors to make their conclusion more likely than a number of other possible interpretations of their data.

    I'd be very interested to see a study that compares immune function between MS and ME. And of course a 2-day CPET would be interesting as well. That would be more convincing in terms of coexistence or relatedness of the two conditions. Didn't Snell investigate MS with the 2-day CPET and find that MS patients do not have the failures that distinguish ME/CFS?
     
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  8. SOC

    SOC

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    It may not be as long as we might think at the moment if the IOM report is given any serious regard by government agencies. The report was very clear that PEM is the distinguishing feature of the illness. If that is accepted, Fukuda will have to be retired as not fit for purpose since it does not include the primary feature of the illness.

    If, if, if....
     
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  9. Valentijn

    Valentijn The Diabolic Logic

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    There were studies, which is discussed here somewhat: http://phoenixrising.me/archives/17902

    A study by the Lights found that MS patients and healthy controls had their pain and fatigue return to normal 48 hours after exertion, while it was increased at that point for CFS patients. Discussed more in depth at http://forums.phoenixrising.me/inde...-after-exercise-in-cfs-ms-and-controls.13977/

    And this one has Dr Snell (Workwell Foundation) discussing how MS and many other patients haven't shown our brand of exercise intolerance, including an experiment comparing a couple CFS patients with an MS patient and various other controls: http://forums.phoenixrising.me/inde...-on-exercise-and-cfs.24050/page-3#post-369210

    I'd have to agree that anyone finding CFS in properly diagnosed MS patients is probably not using a good ME definition or is failing to assess PEM appropriately.
     
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  10. halcyon

    halcyon Senior Member

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    PEM is included in Fukuda, just not as a mandatory symptom.
     
  11. anciendaze

    anciendaze Senior Member

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    Please note that I said PEM was reported in a subset of MS patients. This was before anyone was doing the kind of testing done at Workwell. If we had better diagnostic criteria, and some clue about etiology, this might disappear. At present, we have to consider the possibility we are looking at either diagnostic confusion or a true spectrum of diseases.

    On the subject of Fukuda vs. IOM, please note that IOM dropped primary depression as an exclusionary condition. In fact I'm not at all clear what would be an exclusionary condition for them.

    In operational terms, apart from whatever nice words may appear elsewhere in the report, their flowchart for diagnosis merely requires substantial unexplained fatigue as an input to diagnosis. There is an exclusion for fatigue lasting less than six months. All other criteria (PEM, orthostatic intolerance, sleep disturbances, cognitive impairment) are subjective assessments by the doctor, and we already have numerous examples of precisely the kind of misinterpretation needed to place the patient in a psychosomatic wastebasket.

    The diagnostic algorithm presented by IOM has not been implemented ("operationalized"). Depending on how this is done, HHS remains free to define the disease as a psychological problem which also includes primary major depressive disorders. They are also free to choose entirely different criteria based on new research. The IOM had no authority to set policy.

    It looks like the purpose of the report was to buy time before anyone was forced to make a decision or take action, and deflect criticism to another body, which has since announced it is changing its name to National Academy of Medicine.
     
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  12. SOC

    SOC

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    Thanks! That is sufficiently convincing for me to feel confident (given the currently available data) that ME and MS are not variations of the same illness. They may be related in some way, but definitely not the same. It would appear, therefore, that it is within the realm of possibility that some rare, extremely unfortunate individuals could have both conditions independent of each other. I'd say that number would be significantly less than is suggested by this paper... by orders of magnitude.
    Okay, I should have said it does not require PEM.

    If PEM is the distinguishing feature of the illness, the one that identifies it uniquely from other illnesses and is a necessary requirement for the illness, any definition that does not include it as a mandatory symptom will unquestionably result in misdiagnoses. It's like making a broken bone an optional symptom for 'broken leg'. Allowing the distinguishing symptom to be optional is nonsense.

    It may have made sense at the time, when we had a lot less data about ME/CFS, not to make PEM a mandatory symptom. However, knowing what we know now, Fukuda is outdated and not fit for purpose. Definitions, especially vague ones for poorly-understood conditions, have to be discarded as better data becomes available.

    This makes perfect sense. There is no reason to think ME/CFS and MDD are mutually exclusive any more than MS or cancer and MDD are mutually exclusive. It's quite possible to have both conditions independent of each other. It would be both unfair and unscientific to exclude someone from an ME/CFS diagnosis simply because they have MDD. "I'm sorry sir, we can't diagnose and treat your cancer because you have MDD and the two are unrelated."

    Exclusionary conditions are useful for the relatively rare situations of mutually exclusive conditions where an either/or diagnosis is needed. Diseases are best defined by what they are, not what they are not. This is why good definitions rarely include exclusionary conditions, and why the IOM committee did not include exclusionary conditions.

    That said, it is critical that doctors understand that ME/CFS and MDD are not equivalent conditions any more than cancer and MDD are equivalent conditions even though some people have both.
    Absolutely. There was no policy established by the IOM (it doesn't have that authority) and the SEID definition has no authoritative basis. HHS still needs to decide if it agrees that SEID describes the illness we have. Assuming it does, HHS still needs to find a way to operationalize the definition in a way that GPs can properly diagnose the condition described as SEID. That has not happened yet. It may never happen. We still have a lot of work to do before we have a functional definition of our illness.
     
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  13. jimells

    jimells Senior Member

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    It made sense at the time because the intent was to re-define the illness out of existence. This is well documented, in the words of Dr Straus himself, a leading proponent of Fukuda.
     
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  14. Dolphin

    Dolphin Senior Member

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    Description from the paper of the 9 patients said to have MS and "CFS/ME"

     
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  15. Dolphin

    Dolphin Senior Member

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    Note that the underlined bit is not like the CBT that has been tested in trials in the UK and the Netherlands (which is said to be "evidence based" (by others).

    Another example showing their view of therapy for "CFS/ME" is different to the mainstream, so-called evidence-based approach is here:
    "Graded activities" which probably means graded activity does get mentioned in the final sentence but who knows why it is there (maybe following a suggestion from a reviewer?).
     
    Last edited: Jul 30, 2015
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  16. Dolphin

    Dolphin Senior Member

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    Here's what they say on post-exertional malaise

     
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  17. Dolphin

    Dolphin Senior Member

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    They're a bit obsessed it seems to me in seeing "CFS/ME" as being perfectionists. The other thing they keep bringing up is boom and bust.

    (on patient 5. full extract above)

    If you a condition like ME/CFS which can cause considerable post-exertional malaise, a lot of patients are going to have periods when they are doing less well/suffer post-exertional malaise which could be called "bust". It doesn't necessarily mean the patients were "booming" (indeed there were one or more studies which found that patients with CFS had no more variation in their day-to-day activity levels than healthy controls).
     
    Last edited: Jul 30, 2015
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  18. Dolphin

    Dolphin Senior Member

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    There overall motivation seems to be they think some MS patients could benefit from "CFS/ME" management programs rather than simply pharmacological approaches.

    It would be interesting to know more about their views on "CFS/ME". As mentioned above, they don't appear to fit into the normal rehab group who are very focused on graded activity and exercise.
     
  19. Dolphin

    Dolphin Senior Member

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    (Junk Junk)
    One of the authors is called Wah Wah Oo! Think it would take me some time to get used to that name.
     
  20. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    @Dolphin Unable to post under there, but this is reply to post #15


    These are the most useful descriptions of CBT and GET that apply to us mecfs patients!!! The REAL value of CBT is, like said above, identifying your behaviors that increase your symptoms and reducing them. Also, helping you cope with this disabling, chronic illness.

    And the REAL value of GET/rehab is that even though it reduces overall activities, the relief from horrible symptoms like fatigue, crashes, etc improves quality of life.

    It is a graded exercise therapy all right, but it's graded down, not up. Any sensible doctor can see that patients' symptoms and functionality worsen when grading up- this paper will help them see that grading down is an option as well.

    If physicians who recommend CBT/GET are shown this paper, they probably will be more willing to help patients the right way, and not the wrong way.

    Do you have a link to the full paper, thanks.
     

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