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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. Mark

    Mark Acting CEO

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    They're made public after they've been sent and received. They have to be signed (or not) before that.
     
    Bob likes this.
  2. Bob

    Bob

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    Does Phoenix Rising have any time travelling technology that it could use? :alien: :alien:
     
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  3. alex3619

    alex3619 Senior Member

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    While you are at it, go forward a hundred years and pick up some good books (are ebooks obsolete by then?) on the cause and cure for ME. Oh, and stock market tips. Photos of the latest Hollywood leading lady would be nice too. Lottery results?
     
    Bob likes this.
  4. biophile

    biophile Places I'd rather be.

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    LOL, reminds of what Oracle Wessely once said:
    http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome (about 11-12 minutes in)

    "It may well be that in 100 years time people will look back and laugh at our pathetic and puny approach to this illness."
     
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  5. rlc

    rlc Senior Member

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    Hi medfeb, RE

    As none of the criteria being used for research including the CCC are ME criteria, no research is being done on ME.

    The CFS criteria are not poorly defined. They say that CFS has a certain set of symptoms, which are not caused by the many other diseases that can cause these symptoms.

    The CFS criteria define CFS as a disease of exclusion!! All other causes of CFS symptoms must be excluded!

    The problem with the CFS criteria, the CCC, and information provided by the likes of the CDC CFS toolkits is that the tests that they recommend to be done, do not exclude a large number of diseases that cause CFS symptoms, leading to large scale misdiagnosis.

    We do not have a problem of what to do with a large number of CFS patients who do not fit the ICC. Because the majority of these patients have not had the diseases that can cause CFS symptoms excluded. Therefore they do not qualify for a CFS diagnosis and should never have been given it in the first place!

    The solution to this problem is obvious and I have made both you and usedtobeperkytina and board members of PR aware of it.

    The testing recommended by the Criteria and the CDC toolkit must be increased so that it actually does exclude all the diseases that cause CFS symptoms.

    If the US CFS advocacy groups contact Dr Shiwan A Mirza who has written several articles on what is wrong with the testing recommended by the CDC criteria, such as

    The myth of Chronic Fatgue Syndrome http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome

    Chronic Fatigue Syndrome: NICE and CDC miss the boat http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

    The dogma of CFS, http://www.amazon.com/review/R28ZY8OYSWP0R

    You will have a very highly qualified Assistant Professor of Internal Medicine, who will very likely provide you with real medical information that can be taken to the US government to ask them to increase the testing that is done before anyone gets a CFS diagnosis. It can also be requested that no research is conducted without first making sure that all patients selected have been extensively tested to rule out other diseases.

    Instead of doing this, the letter that the US CFS advocacy groups sent. States that



    “As a result, the term “CFS” has become an amorphous umbrella associated with a diverse set of unrelated conditions that include depression, deconditioning (5) , medically unexplained chronic fatigue, school phobia, and for some researchers and clinicians, fatigue due to “excessive rest”(6) or “false illness beliefs”(7). In clinical practice, doctors give a CFS diagnosis to a heterogeneous mix of patients – those with ME, those with the varied conditions listed above, those who have been misdiagnosed or those whose doctors use CFS as a catchall diagnosis for fatigue. “



    Reference were included for the above statement in the letter that can be viewed here in full http://forums.phoenixrising.me/index.php?threads/patients-to-dhhs-fix-the-broken-me-cfs-case-definitions-now.23217/

    The references for the above statement from the letter are

    (5) Standing up for exercise: should deconditioning be medicalized?

    http://jp.physoc.org/content/590/15/3413.full

    This article from The Journal of Psychology implies that POTS in CFS might!! be caused by deconditioning. And fails to mention the many medically recognized causes of POTs.

    (6) I strongly recommend that you might like to actually read reference (6) as it states

    “It is of importance whether myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a variant of sickness behavior.”

    http://www.biomedcentral.com/content/pdf/1741-7015-11-64.pdf

    This reference does not apply to “excessive rest”(6) it is about comparing variants of sickness behavior caused by other illnesses! To ME/ CFS. It is not about excessive rest! How do the US CFS advocacy groups expect to get any kind of respect from the US government when they can’t even get their facts right?

    Reference (7) Is a Publication whose principle author is Peter White of the Wessely School.

    That states that CBT and GET are effective treatments for CFS http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

    So I’m left wondering if it is the opinion of the US CFS advocacy groups that

    1. CFS patients are mentally ill?

    2. That the POTs in CFS is the result of deconditioning?

    3. And that the Wessely School is right and all CFS patients should be given GET and CBT? After all the US CFS advocacy groups are asking for

    “the adoption and proactive dissemination of appropriate medical guidance like the International Association for CFS/ME Primer”

    Which includes sections on GET and CBT.

    I would also like to know if Dr. Andreas Kogelnik the Medical Advisor for PANDORA is one of the doctors consulted about this letter.

    All the best
     
  6. rlc

    rlc Senior Member

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    Hi Bob, the US CFS advocacy groups, could avoid infuriating the people that they claim to represent, by, instead of putting the names of the various advocacy groups on these letters which implies that the people these groups represent have been informed of these decisions and are in agreement to it.

    They could simply tell the truth and say that these are not the views of the patient population, as they have not been consulted; they are the views of the leaders of these advocacy groups. This small group of people should sign their own names to the letters, because by putting the names of the advocacy groups on the letters it gives the false impression that the patient population has been informed of and agree to the letters.

    All the best
     
  7. Firestormm

    Firestormm Guest

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    Of all the things you could come up with!:rofl:
     
    Bob likes this.
  8. Firestormm

    Firestormm Guest

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    Perhaps it is interesting to note the comments pertaining to terminology - not definition per se - that were contained in the CMO report 2002 and in the NICE Full Guidelines. Viz. it's all the 'fault' of the Americans ;) :D

    Much input of course from a WHOLE host of representative patient organisations on both the CMO Report and the NICE Guideline. The former influenced the latter of course.

    So what can we take away from the above? CFS/ME is being employed as an interim term for the purposes of communication. America - sort yourselves out and we might follow suit. Until then you're playing catch-up it would seem.

    Of course you can still argue that the ICC brings more to the debate that didn't exist before - which is the crux I guess of your arguments; I don't personally think it does and I don't personally think encephalomyelitis is the suitable term either.

    That's just me though. Role on Rituximab. Talk about another potential spanner in the works :)
     
  9. Sasha

    Sasha Fine, thank you

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    No need to wait - I'm laughing (hollowly) now.
     
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  10. Firestormm

    Firestormm Guest

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    Am reviewing the CMO Report for something else, but came across another part that links in with my post above nicely:

    These are the 'attitudes' or 'conclusions' that one surely has to overcome in order to effectively sub-group an unknown section of the CFS/ME 'pot' into component parts.

    I do not believe that either the CCC, this letter, or the ICC, effectively and succinctly achieve this.

    Until such time as evidence is forthcoming, presented and accepted, that denotes the clinical existence of a defined sub-group based upon e.g. a biomarker linked to symptom presentation; only then will that Group be in a position to receive a different (or related) diagnosis with a (more) appropriate label.

    'Myalgic Encephalomyelitis' is I think very unlikely to be that label. The objections raised in the past must surely be overcome with science and not through further playing with (even) consensus criteria.

    FWIW :)
     
  11. biophile

    biophile Places I'd rather be.

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    I hope that discussion was not what became the dreaded "Reeves" criteria which was a step backwards and stagnated the field. Here we are 11 years later with a new generation of "discussions underway" and a CDC multi-site study.
     
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  12. Ember

    Ember Senior Member

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    "The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions."
     
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  13. Nielk

    Nielk

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    The reason why the CCC improved greatly on past criteria is that it makes PEM a hallmark of the disease.
     
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  14. Firestormm

    Firestormm Guest

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    I don't have an issue with making PEM a necessary symptom for inclusion. What I think is that the authorities will still demand evidence that is not yet out there: evidence that can also be linked to a specific population and that isn't a symptom which 'fluctuates'. The PEM in 'ME' needs to also be differentiated from PEM that may be present in other conditions. As I have I think said on this forum before - PEM does not appear unique. It may not have to - in may be that it's inclusion as part of the cluster of symptoms is sufficient. We still need though the evidence to swing the argument. Am just not sure it is there yet although several people are funding research into this exact area. IF PEM can be proven beyond reasonable doubt then we might have a test as well. Of course there are other studies that could also result in biomarkers and tests - but again we ain't there yet imo.
     
  15. Bob

    Bob

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    I don't agree with your assessment, Firestormm. There is an enormous amount of medical and scientific literature on CFS and ME. All that has been missing is motivation and willingness, by the authorities, to make things happen.
    You do not need to have conclusive biomedical evidence to formulate a set of criteria for a syndrome (CFS), or for a more specifically defined set of symptoms that may be a discrete illness (ME). Simple, old fashioned, medical observation will suffice. Indeed, a vague process of 'medical observation' seems to be what the CDC is doing now, for its new criteria project, although their methodology seems to be lacking in sophistication, considering the technology available to them.

    Again, there is enough literature out there to define an ME patient who experiences PEM. It might not be an entirely exact science yet, but it is perfectly possible to start from a position of current medical and scientific knowledge, and then to build on this. That's what they do with other diseases.
     
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  16. Firestormm

    Firestormm Guest

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    Fair do's. Have to agree to disagree. It is exciting times in which we dwell. No doubt about that. I'd just like to see some quality, large-scale studies. Get some big-data. Not small-fry 'interesting' stuff.

    If all these clinicians and scientists can convince the CDC - then great. If the advocacy organisations can come together and agree on 'something' - then that's great too.

    Wish them all the best. I just can't see there's anything at the moment that will shift the balance. Plenty of things that might - but nothing outstanding that will.

    I also have to ask myself what any of the proposed criteria changes will actually do for patients, you know?

    Will I receive better treatments? Will it change any of the approach to management? To my care?

    And what will be the impact on existing patient populations? Will it really impact them? Are we talking diagnosis or research? And when might all this occur? Are we talking a change in recruitment for trials that is drip-fed over the next 20 years?

    Will GP's simply now ask 'Do you feel more tired after doing an activity?' etc.
     
  17. Nielk

    Nielk

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    I think that the impact on the patient population is great. The criteria that is used in studies and research is key to finding the right biomarkers and hopefully, eventually a treatment. It will help as far as finding the cause too. We could be investing a ton of money in research but if we are "apples" and they are researching "oranges" how will that help us?
    It is not something that a patient will see an immediate impact on their life but, it will have an impact in the long run.
     
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  18. Ember

    Ember Senior Member

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    This quotation from the ME Primer refers to the ICC: "The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions." It's taken from the action plan that I referred to in my earlier post. The ICC uses PENE.

    Here is the test for PENE:

    PENE:
    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.* Exercise tolerance test with expired gas exchange - (2 consecutive days) – measure cardiovascular, pulmonary & metabolic responses at rest & during exercise: peak oxygen consumption VO2 or VO2 at anaerobic threshold (AT) - decline of 8% or greater on test 2 indicates metabolic dysfunction, post-exercise blood analysis - increase in sensory, adrenergic and immune genes - increase in metabolite receptors unique to ME


    Here is the definition:
     
  19. Nielk

    Nielk

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    This is PEM taken from the CCC


    I wonder what the difference is in the PENE from the ICC and the PEM from the CCC? To me they sound the same except that PENE goes more into detail.
     
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  20. Ember

    Ember Senior Member

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    This is the exercise test taken from the CCC: ”Cardiopulmonary Exercise Testing: AMA Guide for Evaluation of Permanent Impairment. Lower cardiovascular and ventilatory values at peak exercise help determine functional capacity, and peak oxygen consumption levels determine disability categories.”
     

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