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Now that CFSAC's over, what should we do?

Discussion in 'General ME/CFS News' started by Sasha, Jun 15, 2012.

  1. WillowJ

    WillowJ Senior Member

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    I completely agree with ukxmrv . Even those who can attempt some activity (or even exercise for the wellest ones), any increase however tiny could produce a catastrophic setback. Recommendations for increasing activity should certainly not be included.

    If we are able to attempt and tolerate anything to minimise deconditioning without compromising other priorities such as ADLs, housechores if we can manage them, and socializing, that's a good thing, but it should not be assumed that this is possible. And even in the cases where it is possible, any increase (if any) should come organically, and not because somebody thought it sounded like a good recommendation to rehabilitate people. We need decent medical treatments to rehabilitate us.
     
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  2. PhoenixDown

    PhoenixDown Senior Member

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    Wastebasket condition is different from a hypochondriac label. As things are at the moment, ME/CFS is being used a waste basket label.
     
  3. rlc

    rlc Senior Member

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    Hi Willowj, the diseases you out line lupus and EDS-III can be diagnosed quickly by competent physicians who know what they are doing see EDS-111http://www.cincinnatichildrens.org/health/e/eds/
    And lupus http://www.lupuscanada.org/english/living/1000faces_sle1.html

    Differential diagnosis guides contain instructions for diagnosing complicated cases or referring to the relevant specialist, so this will all be covered in the differential guide that is created.

    RE
    It is because we don’t know what ME is at this point, we can’t even say scientifically that connective tissue components are found in some ME patients, which is why everything that can be done should be done to rule out every single possible other diagnosis, so we have a chance of having as purer cohort as we possibly can, so that the these patients can be studied in the replication study to find these answers.

    Obviously nothing is perfect, but the aim is to get it as perfect as it can be, at this point in the development of medical science, Using 100% complete, shows without a shadow of a doubt that we would like the new guide as perfect as it is possible to be.

    The problem with the term comprehensive is that it is open to interpretation, the CDC believes that it has written a comprehensive guide for testing, so they can just say thank you very much but we have already done a comprehensive guide. And we will have achieved nothing.

    Which is why I will be standing by 100% complete, because this is not open to interpretation, it means that we want it to be as perfect as it is humanly possible to be at this point in the development of medical science.

    All the best
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, as a replacement of #4. And if it repeats something else, then it could be combined.

    Also, if ME-ICC has terminology for those who don't meet all the components of the criteria, then we can say that the ME-ICC should be used as a research criteria. And, the others should be termed whatever terminology the ME-ICC uses for those who don't meet all the criteria.

    This would be in harmony with the WHO classification book that says the main term for the one disease is ME.
    And this would do away with the term "CFS." But it would leave chronic fatigue.

    Bob, I'm sorry I am only halfway participating here. All my comments are for your consideration as including in your list. But I am not up to working out exact wording. Just giving points for y'all to include if you think it fits. I'll leave the wording to you guys.

    Tina
     
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  5. jspotila

    jspotila Senior Member

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    Excellent question!!!

    The difference is in the charter of each committee. The Interagency Autism Coordinating Committee has in its charter the language that:
    The Committee was established by Congress as part of the Combating Autism Act of 2006.

    In contrast, the CFSAC was not created by law. It is created on agency authority, and so DHHS decides what its purpose and function will be. According to the CFSAC charter:
    The difference is that the CFSAC can make recommendations to the Secretary about the development and implementation of education programs, while the IACC is empowered to assist in increasing public understanding of what the agencies are doing.
     
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  6. jspotila

    jspotila Senior Member

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    That would be more accurate, yes.
     
  7. Mark

    Mark Acting CEO

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    I have seen this kind of assertion made about the image of the term "ME" in the UK several times on the forums, but only ever by members from the US, and whenever I hear this, I am puzzled because I don't recognise this perception as consistent with my own experience.

    Every ME charity and campaigning organisation in the UK that I am aware of uses the term ME exclusively: The ME Association, ME Action, ME Research UK, Invest in ME, the TyMEs trust, and even Action for ME use the term ME. (Did I miss anyone important? Sorry if so).

    Only the psychiatric lobby adopts the term CFS in the UK, a term created in the US by the CDC, and they currently refer to "CFS/ME" to describe a broad Oxford-based cohort - a cohort which properly speaking actually defines "chronic unexplained fatigue", and is used in the NICE Guidelines and all the rubbish CBT/GET research.

    The psychiatrists and their supporters in the UK are in the habit of talking about "CFS - also sometimes popularly referred to as 'ME'", in a continuing attempt to discredit the term "ME" as if it were some kind of 'folksy term' used only by ordinary people, rather than the historical medical definition of the disease before it was re-branded as "CFS" in the late 1980s.Their line is essentially that the term "ME" should be gradually be retired and replaced by "CFS". They argue that "myalgic encephalomyelitis" is not proven to be a medically accurate description of the pathology. They are keen to retire the term, and use an ever-broader Oxford cohort to study Chronic Fatigue, in order to mask the reality of the biomedical phenomena associated with ME, prevent biomedical research in favour of their own psychological research, and further the interests of their insurance industry backers.

    The psychiatrists in the UK are so keen to denigrate and retire the term "ME" and replace it with "CFS", and this alone should be a clue that the term "ME" is threatening to their interests but is in the best interests of ME patients.

    Finally, in my own conversations with members of the public over the last few years, I have yet to find a single person who has even heard of the term "CFS", or "ME/CFS" or "CFS/ME", but everyone I have spoken to has heard of ME. Yes, there are some people I have met who "don't believe in ME", but there is normally somebody around to assure them that this is simply because they have never personally encountered it in a family member or friend, and if they knew somebody close to them with ME, 'not believing in it' would not be an option. Although opinion is undoubtedly divided, and ignorance is rife, most people I have spoken to are sympathetic regarding ME. For example, my manager expressed surprise that there is still any doubt anywhere that ME is a real, biomedical disease - he said he thought that argument had been scientifically settled more than 10 years ago, and of course he's scientifically right, despite the ongoing political management of "CFS/ME".

    So I would welcome any other views from the UK, but I don't personally recognise the concern that some US members have expressed about the idea that "ME" has been stigmatised and does not help public perception in the UK. All our charities still use it, the psychiatrists oppose it, and the public recognise it - I think it is the clear name of choice in the UK.

    And of course the prevalence of the name "CFS" in the US causes a great deal of transatlantic linguistic misunderstanding and friction between advocates, because I think "CFS" is seem simply as the "slave-name" and the language of the oppressor over here, whereas in the US, it is simply the only name in widespread use.

    That's a clear practical problem in the US, and something that I think many UK-based advocates don't always appreciate. That different context means that the practical, pragmatic arguments are different in the US - the problem is, that what happens on one side of the pond affects the other, and the historical differences in terminology are a major problem for us all.

    Having said all the above, I do think that a completely new name and a fresh start might be the way forward. And I definitely agree that the "four types" example of MS seems an entirely appropriate analogy. Baraniuk's recent work, presented at the IiME conference, suggests 4 distinct subtypes of ME/CFS which can be identified both by cluster analysis of symptomology, and (consistently) by distinct spinal fluid analysis. And even in the original descriptions of the 1955 Royal Free Hospital outbreak, from which the term myalgic encephalomyelitis was coined, distinct subgroups were described in terms of the long-term response, with about a quarter of those affected becoming and remaining severely ill. I think it might be very helpful in any arguments about classification to re-visit the reports on Royal Free, because my recollection is that even the early papers described different levels of response to the original outbreak. My personal guess is that the model of 4 types of MS may very well prove to be an even more accurate analogy to ME/CFS than anyone has yet realised - the explanation of those 4 subtypes may very well turn out to be quite precisely matched by the 4 subtypes of ME/CFS. It's well worth looking at the 4 sub-types of MS, for anyone interesting in a model for sub-classification of ME/CFS, and anyone trying to cut through the maze of the arguments that "ME is not CFS".

    I think my summary would be that whatever the recommendations on naming, we should push for research into sub-typing and cluster analysis of symptoms and biomarkers, and be very careful about any suggestion that we are describing a cohort and a definition that should be studied on the basis of an assumption that it represents a homogeneous population.
     
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  8. alex3619

    alex3619 Senior Member

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    I think this is a minimum list to be considered for research purposes. In fact I think a much much longer list is required. Clinically there should be other options, including the use of decent diagnostic flowcharts, but for research purposes there is no excuse to rule out data that might be relevant especially when establishing diagnostic criteria. When experts create a consensus definition they do this based on their experience - they would have run many of these tests. If the criteria is to be data driven however there is no substitute for such testing. Anything less is a farce, and may result in yet another flawed definition.

    As just a few of many extras, let me add: serum LPS, cytokine panel, dim cell/bright cell ratio (types of NK cells), elastase.

    Bye, Alex
     
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  9. Bob

    Bob

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    I appreciate any input Tina, and i understand if you can't get fully involved, but I can't write out other people's suggestions, as this process is so complex already. I will attempt to improve existing suggestions though.
    Just letting you know that your suggestions might get neglected if not written out.
     
  10. Bob

    Bob

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    So we can include recommendations about education. I think we removed the education recommendation for a specific reason, which I can't remember now.

    I wonder what "partnering" in no. 4. means? "partnering to improve-the quality of life of CFS patients." Does that mean that CFSAC could carry out certain proactive activities itself in partnership with the Secretary?

    Items no 1, and no 2 are interesting... That suggests that the CFSAC should be producing its own complex reports about the current state of knowledge (inc. epidemiology, etiologies, biomarkers etc.) and the impact of current agency policies. Do they do that? That backs up what someone on this thread suggested about us creating briefing notes. (Let's stick with what we're doing for now though?)
     
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  11. Bob

    Bob

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    So am I to include something like these?:

    > The CFSAC should aim to educate physicians, schools, social services, and the public through any means possible to it, including making recommendations.

    > The CDC should stop using the empirical 'instrument'* for research and to assess patients.

    Comments, objections, feedback and rewording please.

    * It sounds like torture! But I suppose it is really. Long slow torture! So it seems like an appropriate description! :ill:


    Whoever it was who objected strongly to the inclusion of the original suggestion regarding 'education', could you please make your opposition known again, if appropriate, to the above suggestion. (Sorry, the thread is so long now, it's really hard to keep track.)
     
  12. Bob

    Bob

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    rlc, there is a backlog of my questions that you haven't yet addressed. I'd appreciate it if you could please. Would you like me to highlight them?
     
  13. WillowJ

    WillowJ Senior Member

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    hi rlc. Again I want to say I agree that differential diagnosis should be attempted and should be as complete and thorough as possible. I just think we should moderate our language just a bit, because people will perceive us better if we convey an understanding that diagnosis is complex, rather than asking for an ideal which would be best, but cannot be attained in real life.

    (Also as a separate note, in clinical practice, it's common for people to have more than one condition [most especially when we are possibly dealing with connective tissue and immune or autoimmune conditions]. For research purposes, this makes things complicated and it's best to try to find people who have a simple case of just the one thing you're trying to study)

    http://www.lupus.org/webmodules/web...earndiagnosing.aspx?articleid=2239&zoneid=524
    http://lupusresearchinstitute.org/lupus-facts/lupus-diagnosis
    i.e. the ANA test is not at all specific and can be found in other conditions--including ME/CFS (Fukuda-CFS has up to 60% positive ANA, I might have seen an even higher figure like 80% but not sure).

    Indeed, even a test usually considered very specific, like the one for Myasthenia Gravis or the new one for RA or the ds-DNA, can be found in a small percentage of people who don't have the main condition it normally goes with.
     
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  14. Bob

    Bob

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    I agree with Mark that 'ME' does not have the same stigma as 'CFS' in the UK. Patients tend to use the term 'ME', and doctors tend to use the term 'CFS' in my experience, although the official government name for it is CFS/ME.

    There might be a little stigma attached to 'ME' though, in that once people realise you are talking about 'CFS', then their attitude changes. And of course, doctors know you are talking about 'CFS' when you talk about 'ME'.

    But we won't all agree about the name issue, so it's probably best to stay away from the subject for now, IMO.
     
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  15. WillowJ

    WillowJ Senior Member

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    So basically we need to lobby Congress, then, in order to get that kind of empowerment?
     
  16. Bob

    Bob

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    Yes, I agree about a completely new name, without baggage, with a new diagnostic criteria, based on evidence.
    I think our wording, even if not perfect, suggests we want to go in this direction.

    I agree about not describing cohorts, except in the short term I think we should be pushing for use of ICC and CCC in research?

    Shall we add this to our suggestion re creation of a diagnostic criteria?: "research into sub-typing and cluster analysis of symptoms and biomarkers"

    We can also add "research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population"
     
  17. WillowJ

    WillowJ Senior Member

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    CDC should cease use of the surveys developed and presented in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005.

    Is that sufficient? Clear?

    Dolphin would that do it? (we are discussing proposals to hand to CFSAC that they could make)

    Edit: CDC should cease diagnostic use of the surveys in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005, and abandon the scoring system described in that paper (and in the Wagner et al. 2005 Psychometric Properties study). CDC should replace the Chalder Fatigue Scale with a scale able to assess severe long-term disease (c.f. a paper by Jason, need reference).
    Bob
     
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  18. WillowJ

    WillowJ Senior Member

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    yes
     
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  19. Bob

    Bob

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    I've added this, but I haven't put much thought into it, and I don't think much of my wording...
    Any improvements are welcome:

    When creating the new criteria, it must not be assumed that the ME/CFS population represents a homogeneous population, and so research into sub-typing and cluster analysis of symptoms and biomarkers should be considered, and sub-groups should be created within the criteria, if appropriate.



    (Edit: WillowJ)
     
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  20. WillowJ

    WillowJ Senior Member

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    Also we might as well add the Chalder scale. It's useless. We will need to add citations, but that's doable.

    I want to reword the proposal already, to scoring system, or to . There is nothing wrong with using SF-36 to help assess debility, but the scoring system they used was wonked. Not sure about CIS and MFI, would need to check.
     

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