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Just Get It Right Patient Survey

Discussion in 'Institute of Medicine (IOM) Government Contract' started by usedtobeperkytina, Jan 6, 2014.

  1. Nielk

    Nielk

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    The fact that @SOC 'a daughter is in a possible remission is not unusual, especially with autoimmune diseases. I suffer from Crohn's disease. I had the active serious form for over fifteen years. I am in a remission right now and am practically a symptomatic. Yet, when my GI doctor took a biopsy from my Ileum at my last Endoscopy test, it came back positive for Crohn's. The patients in a remission are not the ones defining diseases.
    justinreilly and SOC like this.
  2. Nielk

    Nielk

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    In what universe foes the diagnostic criteria for the complex, serious neuro immune disease, ME with the symptom if PEM/PENE exist?

    It is for this diagnostic criteria ghat our fifty experts were fighting for. They urged the adoption of the CCC now. I am very much afraid that we let that opportunity slip by. We did not, as a community band together in support for this and I do not foresee anything resulting from the IOM coming close to this.
    lnester7 likes this.
  3. Firestormm

    Firestormm Guest

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    That might be your take on it Bob but not my own.

    I think ME and CFS are interchangeable as nomens until such time as actual research evidence can separate them as distinct diseases or sub-groups.

    This was also repeated by NICE and the CMO Report that fed into NICE. I can certainly appreciate your point of view as I can with the comment about behavioural disorder - but again that is not my own experience either of NHS practitioners.

    And let's be clear. The CCC to which the much-vaunted experts were keen to see put in place, uses CFS/ME as an interchangable descriptor as well as NIH and NICE.

    I do not believe we are able to point to specific research evidence that allows the separation of 'diseases' yet. I do think however, that an opportunity exists to agree to adopt a single name and definition for the whole.

    A better definition and more 'user-friendly' name. The one specifically advanced in the survey was myalgic encephalopathy. And I think this as good a compromise as is likely until the science better enables more progress.

    NICE in the UK also recognise Encephalopathy as an alternative to encephalomyelitis. And I believe it would be accepted more readily by those in the NHS as well as in the USA.

    If we can do anything, then I think it would be seen as significant advance to be able drop CFS once and for all, and adopt Myalgic Encephalopathy along with a better - narrower - clinical definition.
    usedtobeperkytina likes this.
  4. Bob

    Bob

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    I think SOC's point may have been slightly different. ME patients can have individual illness-defining symptoms that fluctuate, become less obvious and/or disappear for periods of time, whilst still being ill, and needing treatment.
    Last edited: Jan 7, 2014
    Firestormm likes this.
  5. Bob

    Bob

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    I think we've made a darn good effort, haven't we?
    It's very difficult to fight a government machine.
    (In the UK a million marched to parliament against the Iraq war, but were ignored so made little difference.)
    We can just do our best.
    I know you've done an incredible amount of work, which I'm really grateful for.
    Last edited: Jan 7, 2014
    Nielk likes this.
  6. Firestormm

    Firestormm Guest

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    @Nielk Can I ask, what it is about ME that is different from the symptoms and effects of having Chron's?

    I was especially pondering whether Chron's might not also affect energy levels and/or even cause something akin to PEM and muscle pain/ache.

    I hope you don't mind the questions. Feel free to ignore if so. I was merely curious. Thanks :)
  7. Firestormm

    Firestormm Guest

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    I think the CCC has been very much adopted in research now, at least most papers I read seem to use it alongside Fukuda. It was why I just could not understand this need to have two definitions. Why not CCC for both clinical and research? It still makes little sense to me to have different ones - especially if they intend a broader one for clinical diagnosis - I mean who wants broader than CCC?!
    Nielk likes this.
  8. Bob

    Bob

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    @Firestormm. NICE used the results of the PACE trial to justify the NICE guidelines. And PACE is based on a cognitive-behavioural model of illness. If CBT and GET are used as 'treatments' for an illness, then it's treated as a cognitive-behavioural illness. Simple as that. I know you are impressed by your individual health care providers, but they are working within a system that treats CFS/ME as a cognitive-behavioural disorder. I've been offered absolutely no medical investigations and absolutely no treatment other than CBT/GET. It could be so much different if the focus wasn't on avoiding medical investigation and avoiding biomedical research (as has been the case over the years). The NHS or the government could set up centres of excellence (i.e. multi-disciplinary centres of investigation run by expert physicians and researchers.)

    Sorry for being off-topic.
  9. Firestormm

    Firestormm Guest

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    NICE Guideline was published in 2007. I know if a proper and fairer assessment of the PACE results had been made when they were published, it might have impacted on the recommended 'management strategies' Bob. I would very much liked to have seen that as I am sure we all would, but I doubt very much if the recommended strategies would have changed. What might have changed was the way in which these 'treatments' are fed-out to patients i.e. the manuals and training that practitioners receive and the way in which some practitioners deliver them. But even without PACE we would I think still have been looking at predominately 'management strategies' of one form or another and one that contained a 'psychological' management basis as well as one or two that attempted to deal with activity management and exercise. What was missing in 2007, and in 2002 from the CMO Report was effective evidence for the use of drugs for symptom management: and we are still no further forward on that score and must continue to suffer the pain of countless trials of anti-depressants in the main. That was ever my main concern about NICE was it's lack of guidance on pharmacology - it instructed practitioners to effectively use their own judgement and gave no other guidance.

    Of course IOM isn't going to the lengths of producing any Guideline, which I think it a great shame really. Anyway, I too am guilty of going off-piste here so I shall cease and desist.

    I thought the survey worthwhile and we ever end up arguing over the actual questions and answers. I hope it helps inform the panel and they take the answers on board as well as the comments that you can leave at the bottom. Given the timescale dictated it was a noble effort I felt.
    usedtobeperkytina likes this.
  10. Bob

    Bob

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    So are you agreeing with me now, that CFS/ME is treated by NICE and the NHS as a cognitive-behavioural disorder?
  11. SOC

    SOC Moderator and Senior Member

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    Exactly! Your doc does not say you don't have Crohn's just because you're in remission. That's because there's an objective test that defines the illness, so even though you are nearly asymptomatic, you are still identified as having the disease.

    We do not have that objective test yet, so we are stuck defining the illness by symptoms. That means our "definition" could easily miss people with the illness who are early in the illness without the full range of symptoms showing, in remission, or perhaps have atypical presentations. They still have the illness, just not the typical symptom set.

    I agree completely that we need a research definition that is as clear as possible and which would most likely exclude (for the time being) those in remission or with atypical presentations. That's the best way for our researchers to find that biomarker we so desperately need.

    However, a rigid symptom list in a clinical definition can do more harm than good. You, for example, would not benefit if your doctors and insurance company decided you did not have Crohn's because you are currently asymptomatic. You would not get the testing and treatment you need. Just because you don't have the typical list of symptoms, doesn't mean you don't have the illness or need testing and treatment.

    One thing I think we have to fight HARD for is to get that damned "fatigue" out of our definition. It no more defines us than it defines cancer patients or MS patients. We don't need every Joe and his uncle with undefined fatigue pushed into the same illness group as us. Our definition needs to include neuroendocrine and immune symptoms. It's the notion that fatigue is what defines the illness that gets so many non-patients included with us. Dump that and we're much farther along the path to a sound definition.

    One of my biggest concerns about the IOM contract and even more so the P-whatever committee is that people without knowledge of the illness with invariably focus on that damned fatigue thing, which is FAR from the defining feature of this illness. Their lack of understanding of the illness could be fatal to the development of a good definition.
  12. Firestormm

    Firestormm Guest

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    No. Because you are I think implying cause and I am not. I believed you were saying that NICE think ME is caused by 'behavioural' factors and can be successfully treated with CBT and GET and that in so doing there is nothing 'psychical' or nothing that can't be overcome with a teaspoon of CBT.

    I believe management strategies are the best that can currently be offered to all by way of 'treatment'. As a general measure - but for some such measures are not necessary and they wont benefit from them.

    In effect these things should help us to learn to live as best we can with the illness and services should support us until such point as we can better manage.

    We could I think be helped more - with drugs for symptoms management - we could I think be helped more by greater education among doctors so they continue to look for possible alternative explanations and then test for them... but I've said much about my thoughts here many times before and I am repeating myself.
    Last edited: Jan 7, 2014
  13. Bob

    Bob

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    I'm referring more to the lack of investment, lack of treatment, lack of integrity and lack of knowledge/insight in the NHS (at national and local levels) rather than their official line on CBT/GET.

    I was only offered GET at my specialist CFS clinic and it was utterly inappropriate and insulting. I couldn't fault the individual therapists, considering their remit. They were very caring, flexible and considerate. But they offered me an inappropriate 'treatment'. Also, the diagnosing 'specialist' doctor clearly didn't understand the nature of post-exertional malaise and my own doctor hasn't got the slightest clue about the nature of ME.

    Many NHS doctors consider ME patients to have a functional disorder. The NHS itself doesn't have an official opinion about the cause or etiology: except that the cause is unknown. But they officially treat it only with CBT and GET. CBT/GET are not designed as coping mechanisms, but are designed as treatments to reduce symptoms and disability, so in practice ME is treated as a cognitive-behavioural disorder.

    Things could be so much better if funding and resources were made available for proper integrative expert services, and clinical centres of excellence based on a biomedical model of illness. Not to mention appropriate in-patient care for severely ill patients and at-home health and social care when patients need it.

    Why, for example, don't the specialist clinics have endocrinologists assessing and helping all the patients who come through the doors? Because CFS patients don't have endocrine (and autonomic nervous system) problems or because the NHS has decided that CFS patients don't have such problems?

    If you are satisfied with the current arrangements then perhaps it's because you are not aware of, or haven't thought about, what the alternatives would look like. It could be vastly different.

    I've complained of occasional weird symptoms (possible autonomic nervous system problems, e.g. chest pain, palpitations, light-headedness, over-stimulation) but have had zero investigation or treatment. Directly after my last major relapse I developed fluctuating endocrine levels, with associated symptoms, but have had no treatment or specialist investigation despite some of my test results being abnormal (e.g. abnormally high TSH levels.) And I know for a fact that I'm not alone in receiving this lack of treatment or interest. Why do you consider this to be the best they can offer?

    When I first got ill I had no obvious endocrine issues but these have developed over time. Where is the expert advice? Where are the treatments? Where is the specialist input?

    Firestorm, it actually makes me highly frustrated to hear you tell me that NHS services are adequate under the circumstances. I find it insulting and offensive, for so many reasons that I can't possibly explain in one post. If the will was there, things would be very different.

    For further indication about the attitude of the NHS towards ME patients, watch this depressing video interview of Dr Speight, and then tell me that every thing is fine in the NHS with regards to CFS, and that it's treated as a biomedical illness:
    http://forums.phoenixrising.me/inde...iatrician-dr-nigel-speight.27153/#post-418126
    Last edited: Jan 7, 2014
    vli, Firestormm and SOC like this.
  14. Ember

    Ember Senior Member

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    My GP uses the ICC. It requires PENE (but it doesn't include fatigue as a criterion). And it includes an NK cell function test and a two-day CPET in its investigative protocol.

    The ICC defines atypical ME, but it stipulates that patients should meet the full criteria for epidemiological studies. It recommends that ME patients should be removed from CFS and its hybrids (i.e., from CFS, ME/CFS and CFS/ME).

    To my mind, the CCC is second best. I'll support the experts if that's as far, for now, as their consensus is prepared to go. But I won't support P.A.N.D.O.R.A. or this leading questionnaire.
  15. Nielk

    Nielk

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    @Ember
    Is this doctor in the US or Canada?
    Izola likes this.
  16. Ember

    Ember Senior Member

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    He's Canadian, of course. But still within this universe.;)
    Nielk likes this.
  17. WillowJ

    WillowJ Senior Member

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    the average Internal Medicine doctor feels more ambitious and competent to deal with complex diseases than the average Family Practice doctor (though one can sometimes find a family practice doctor who will tackle the tough stuff when the specialists decide they are hot stuff and don't have to do the day-to-day management), but both are primary care doctors in the US. They have similar amounts of training and are not considered "actual" specialists (even though they have an advanced training area).

    ETA: Osteopath is an alternative to MD (though not "alternative" in the other sense: it's considered "traditional/Western/allopathic" in the allopath versus naturopath sceme); it's a base degree and one goes on and trains in something after that (e.g. Family Medicine or Internal Medicine, then some specialty if desired). In the context of the survey, I assumed they meant primary care DO, as many are, but the kind of degree doesn't really say for sure what the specialty is.
    Last edited: Jan 9, 2014
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  18. Firestormm

    Firestormm Guest

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    @Bob I am very sorry to hear that you are offended.

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