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Discussion of the NEW International Consensus Criteria

Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.

  1. WillowJ

    WillowJ Senior Member

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    herpesvirus was indeed mentioned in the paper. However, neither Lerner nor Montoya was cited. They cited Kerr, Nicholson, Chapenko, and Ablashi.

    The relevant paragraph:

    (They go on to discuss immune alterations.)
     
  2. taniaaust1

    taniaaust1

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    1. Better defined results in better studies done if this definition is used.
    3. Someone could have both MDD and ME but if they have ME and MDD they are going to fit the new criteria. The canadian consensus definition worked the same way.. one could still get diagnosed for ME/CFS as long as whatever else one has doesnt fully explain the symptoms... that included MDD.
     
  3. Tulip

    Tulip Guest

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    1.Calling it ME defines it as the disease that it is and will stop doctors diagnosing idiopathic chronic fatigue, stress, cancer, cardiovascular disease, anxiety etc etc etc as chronic fatigue syndrome. This will mean FAR better cohorts for real research and an understanding that ME is no more chronic fatigue than MS is and that it is a very real and very serious disease. This is vital.

    2.Yup

    3. Yes of course people with ME can and do get depression, but it is not the cause of the illness nor is it the illness. The problem is that because of the name chronic fatigue syndrome, doctors are taught it is just fatigue therefore people with depression are told they have cfs leading to them being mixed up in research and people with ME being given inappropriate treatments such as get and cbt etc.
     
  4. taniaaust1

    taniaaust1

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    I dont see why their would necessarily be a press release or warning notice for something which is still in its draft.

    A large group of our experts have got together and done this, why would they need to be consulting with others at this point of things? They are world leaders in this field and all together.... a large amount of knowledge.

    I think we will get all the answers to our questions once its progressed further along.

    I wonder where your concerns are coming from when you look at those names. (I wonder if its maybe cause you arent recognising some of the ME/CFS leaders from other countries other then your own???). There are names here in which ones from all over the world are very familiar with... the top expert from NZ etc etc etc
     
  5. WillowJ

    WillowJ Senior Member

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    best to make a post in the "nuts and bolts" section where there's a thread for that. if you can copy both (or all 3-4) threads there, I think they find that helpful
     
  6. Wildcat

    Wildcat Senior Member

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    Hi,

    I have followed this thread with interest, tho' too sick to contribute much in writing at this stage.

    I most definitely welcomed the New International Critiera, if fact I am very enthusiastic. But I do think that the questions that Suzy Chapman has raised are valid questions, questions that should be explored and addressed, and the valid questions should not be taken as purely *criticism* of the new Criteria per se, I do not think they were intended to be .

    The CCC was rightly described as a 'Medical Milestone' when it was published, and it most defintely was the most massive breakthrough. Personally I think that we still need some of the detail included in the CCC.
     
  7. Bob

    Bob

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    I would also like to say that I think Suzy has raised totally valid and helpful questions, and has been unfairly criticised, and misrepresented on this thread. (This comment isn't aimed at tanniaust1's post, above.)

    We are all entitled to ask whatever questions we want to, about these new criteria, without being criticised for it.

    I would like to find out as much as possible about the new criteria.

    I also agree with Firestormm's point that these new criteria are going to have to withstand heavy scrutiny (from patients, professionals and the medical establishment) if they are to be successfully adopted anywhere.
     
  8. Wildcat

    Wildcat Senior Member

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    Firestorm wrote:

    Now this suggests to me that they are proposing 'CFS' is dropped in favour of Myalgic Encephalomyelitis [period] and that these new criteria will distinguish those with Major Depressive Disorder (presumably this equates with Clinical Depression here in the UK).

    1. So the assumption is that by removing this source of 'contamination' from the cohort of patients, ME will become better defined and... what?

    2. Are these criteria capable of achieving this aim on their own and as they stand?

    3. Is it not possible to have MDD and have Myalgic Encephalomyelitis? At the point of diagnosis and at times throughout one's journey?






    Re: Firestorms statement about the so called contamination of the patient cohorts:


    That Myalgic Encephalomyelitis should be as well and clearly defined as possible is the central issue.


    I suspect that Firestorm has missed the central point that the name Chronic Fatigue Syndrome was an upstart name invented by committee in 1988, accompanied by new criteria (originally Holmes 1988, then Oxford 1991, then Fukuda 1994) that EXCLUDED the hallmark signs and symptoms of Myalgic Encephalomyelitis as described by Ramsay and identified by various US medics over the years.



    Its clear that in the UK at least, uninformed doctors are giving out diagnosis of Chronic Fatigue Syndrome to patients who have Chronic Fatigue from diverse other causes.

    That helps no one.

    It is damaging to patients who have a chronic fatigue symptom from other diseases that are subsequently left undiagnosed and untreated. It is also especially damaging to Neuro-immune ME sufferers who have been coerced and actually threatened with sectioning, or with loss of any medical support (myself included) because they have been too sick to do graded exercise (GET), or because GET has made them much more sick. Such patients have been described as uncooperative and vilified for refusing treatment in their medical notes. That has a knock-on effect when such patients need medical back up for sickness benefits such patients end up losing homecare, DLA and desperately need sickness benefits through loss of supportive medical reports from their doctors.


    In short, the name Chronic Fatigue Syndrome has been a disaster medically, more of a deceptive linguistic construct than a medical disease name.
     
  9. Wildcat

    Wildcat Senior Member

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    REALLY Effective and useful Myalgic Encephalomyelitis Criteria, properly applied, should help doctors to identify patients who sufferer from more than one condition, and enable them to accurately diagnose Myalgic Encephalomyelitis, and any other existing or reactive condition, rather than getting *fatigue* from other conditions confused with PEM.

    ME sufferers may well sufferer from reactive or pre-existing anxiety or depression (please note that 15% of women who give birth go on to suffer post natal depression - it would be dire to *exclude* them from a later valid diagnosis of ME on the basis of a 'history' of depression).

    Really, diagnosing ME is as much an understanding of process, as much as a list of symptoms. Experienced ME doctors recognise ME when they encounter it. It seems to me that *ideally* ME diagnosis process should be taught in medical schools, because it is more than just a list of symptoms.
     
  10. Nielk

    Nielk

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    Please see this interesting blog by the author of "Chronic fatigue Syndrome - A Novel"
    www.cfsnovel.com/blog
    It also appears on our forum's blog section.

    To Suzie - no I'm not your daddy. Firstly, I'm a female. In addition, I have enough difficulty dealing with the children that I have.
     
  11. Valentijn

    Valentijn Activity Level: 3

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    That would be ideal, but the knowledge of ME isn't at a point where those fine lines can be drawn. We ARE at the point where further biological research is essential, so that we can get to the point of drawing those lines some day. That research would be exponentially more complicated if the researchers are dealing with distinct co-existing conditions with symptoms that overlap with ME to varying, unknown degrees.

    I would consider the ICC to be primarily research oriented, which is really what it needs to be at this stage of the game.

    I also think it's unnecessary to split hairs over the various criteria. "E.G" means "for example" and indicates the following lists are not exclusive. The things included under "E.G." are more likely to be some of the less obvious symptoms in that category, which people wouldn't automatically think of. I don't have lymph node, throat problems, etc, but I sure get flu symptoms with my PENE in the form of fever, chills, and muscle aches.
     
  12. Wildcat

    Wildcat Senior Member

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    Hi Valentijn!

    The very experienced ME doctors (US and UK) from their long experience, can definitely identify Myalgic Encephalomyelitis from a detailed clinical assessment (maybe backed up by relevant tests). That some ME sufferers have some symptoms, but not others, is part of the art of identifying ME, along with the illness pattern and so far only the very experienced doctors can do that!

    The real problem is getting our NHS doctors to the point of being able to identify ME, and separate it from other conditions.

    We can DEFINITELY do better than the gruesome UK Oxford and NHS Clinic Criteria (fatigue with illness beliefs!!!)

    Whether its the CCC or the New International Criteria we will see but we need new Criteria to enable idiot doctors to more accurately diagnose Neuro-Immune Myalgic Encephalomyelitis.


    Having gone from my 40s into my 50s and now nearly into my 60s with severe ME I am getting bloody frustrated with the complacent attitudes from some of the ME community about the essential diagnostic criteria and possible treatments and the total medical and social neglect of people like me . If we dont get a move on by the time we have all finished pontificating I am going to be Fucking Dead!!
     
  13. Wildcat

    Wildcat Senior Member

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    Hi Nielk!!

    You wrote:

    Please see this interesting blog by the author of "Chronic fatigue Syndrome - A Novel"
    www.cfsnovel.com/blog
    It also appears on our forum's blog section.

    To Suzie - no I'm not your daddy. Firstly, I'm a female. In addition, I have enough difficulty dealing with the children that I have.




    I am reading that novel and blog and definitely enjoying it!


    But we definitely need the kind of detailed and critically correct input that Suzy Chapman has provided over the years.

    I have the highest respect for Suzys work over the years.

    For UK ME-Activists, Suzys work and Blog has provided a basis of information on which to base our activist work. She has gone to lengths to provide the details and ask the kinds of incisive questions that others may not think of straight away.
     
  14. Wildcat

    Wildcat Senior Member

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    Valentijn wrote: That would be ideal, but the knowledge of ME isn't at a point where those fine lines can be drawn. We ARE at the point where further biological research is essential, so that we can get to the point of drawing those lines some day. I also think it's unnecessary to split hairs over the various criteria.



    OMG what a leisurely route you want to take Valentijn!!!


    I am issuing you with an invitation to my funeral as I will obviously not last out long enough for your idea of a leisurely stroll towards any ME diagnostic or treatment!!!
     
  15. Nielk

    Nielk

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    I never meant to diminish Suzie's past and present works.
    Unlike others here, the questions she was pausing in my mind didn't make sense and I am allowed my opinion.
    Firstly, even if they did make sense, this forum certainly would not have the answers so the fact that they were posed here shows me that the intent was not to find answers but to instill questions in people's minds.
    By questioning - who started this? who was consulted before and after? when was it started? who owns it? why the surprise? why didn't we hear about this before?
    All these are questions that have no reflections of the actual content of the paper. As far as who - it is obvious who authored this - they all included their names. Who owns it? they stated that it is their own with no financial ties to anyone.
    It's like the Bill of Rights of the US. Who wrote it? the ones who signed it. I don't understand the difficulty here or even the fact that there is a question about it.
    As far as how it relates to Jason's work or the fact if the CDC will accept it. Do you really think anyone on this forum has the answer to this? If we would wait for the CDC to act on their own we will be waiting forever.
    Suzie keeps mentioning that "other forums" are also questioning it. That doesn't impress me either. That makes it legitimate? the fact that others are questioning it? It's like more weight is put on any anonymous person posting on a forum than the distinguished clinicians with years of experience with this illness?
    I think it's fine to ask questions but, the specific questions paused were irritating to me.
    I feel like a few people here have taken away the excitement and the momentum of this important development.
    It should have galvanized us and excite us and pushed us to build on it and support it.
    Now it fizzled all out.........................
    Sad.
    Frustrating.
    Disappointing.
     
  16. Wildcat

    Wildcat Senior Member

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    Hi Nielk!


    I just meant that the questions that Suzy raised are reasonable and valid.


    Personally I was intitially keen on the new Criteria. But I do appreciate all questions relating to them should be considered. I personally I am still reflecting on the new criteria - I liked the CCC, although there could of course be improvements on them. All medical diagnostic criteria undergo regular reassessments.


    To be honest I am quite excited by the new International Criteria, on an initial reading.


    But I very much appreciate that Suzy asked important, relevent, and pertinant questions relating to the criteria and their provenance.


    At this stage we still really need to thoroughly assess any propositions we are given,



    Take Care,

    Wildcat
     
  17. Wildcat

    Wildcat Senior Member

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    In addition, Valentijn, by your criteria, I will be dead before consensus is reached!
     
  18. Nielk

    Nielk

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    Criteria of any illness is not defined by the patient population!
    I would like to hear of one illness where the criteria of diagnosis was devised or even consulted by the patient population.
    It is also not devised by activists for that illness, no matter how effective they are unless they are biologists, scientists, medical doctors.
    If we would allow lay people to define disease, it would be some strange world.
     
  19. leela

    leela Slow But Hopeful

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    Oh For Heaven's Sake Everyone!

    Play nice, kay?
     
  20. Wildcat

    Wildcat Senior Member

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    We do not have more decades in which to establish a viable diagnostic crirteria for ME.



    But the diagnostic criteria had better be a good one!
     

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