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STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

Discussion in 'Action Alerts and Advocacy' started by Min, Jul 18, 2014.

  1. Min

    Min Senior Member

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    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC)
    MAY 2013

    http://www.25megroup.org/info_news.html#CMRC


    Very well said 25% Group!
     
    Last edited by a moderator: Jul 19, 2014
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  2. Min

    Min Senior Member

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  3. Firestormm

    Firestormm Guest

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    Don't suppose any of you have read the charter?

    I am surprised this statement from May LAST YEAR did not link to it or quote from it.

    Here it is anyway: http://www.actionforme.org.uk/Resources/Action for ME/Documents/cmrc-charter.pdf

    I notice above this news item is one about exercise testing and a talk in Bristol that happened. No statement about the appropriateness of testing for severe patients? Or the need for more research on the severe population?
     
    Last edited by a moderator: Jul 21, 2014
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  4. Chickadee9

    Chickadee9

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    Just curious to know why you are reposting this now. Has something new happened?
     
  5. xchocoholic

    xchocoholic Senior Member

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    I've never heard of this group but support the need to further research ME.

    How are patients supposed to keep up with all the groups involved or classifications of ME ?

    Tc .. x
     
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  6. Chickadee9

    Chickadee9

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    Min, thinking about this a bit more I see where you're coming from but I worry that we could spend a lot of time and effort trying to ensure that researchers only look at people with "pure" ME and miss the big picture, which is alleviating the suffering of people with ME ASAP. Isn't it as likely that we will find treatments that work coming at the problem sideways as zeroing in on people with strictly defined ME? I know we tend to think of ME as a disease all on its own but there is increasing evidence it isn't. Also do you have any hard evidence that the CMRC is pursuing a psych agenda? What, for example, are they discussing at the conference in Sept? Do you know? I don't.
     
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  7. peggy-sue

    peggy-sue

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    @Chickadee9

    Only folk with "pure" ME have ME.
    Folk with "CFS" have some undiagnosed problem that is not pure ME.
    Yes, their troubles need investigated, for example, my friend had heart failure and needed a pacemaker, but got lost to the "CFS" label for 10 years.

    Only folk with "pure" ME, the kind with PEM, the kind that are made worse by GET and CBT, have ME.

    Anybody trying to submerge true ME under the CFS label is guilty of pursuing the psychological agenda.

    And of ignoring the real problems folk with "CFS" have.

    ie. the recommending of "no further testing" once the label has been stuck on somebody, is the problem there.

    And the stupid assumption of; "if all the standard tests show nothing it is hysterical conversion disorder".
     
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  8. Chickadee9

    Chickadee9

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    I would like to know how doctors tell whether a person has ME or CFS? Do you know of any ME specialist who will make such a distinction when they are diagnosing? Is the Canadian definition adequate do you think? I agree many are misdiagnosed with other things.
     
    Last edited by a moderator: Jul 21, 2014
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  9. peggy-sue

    peggy-sue

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    The (very basic) distinction is the presence or absence of PEM. (as I said in my previous statement). One does not need to be able to prove the existance of PEM, although it is perfectly possible to do so.
    Nobody needs a clinical test for a headache or backache, symptoms of a cold or 'flu are taken at the patients word.

    There is no test for "fatigue" either.

    I know of no specialists in the uk. I am sure you know of none either.
    (Psychiatrists, psychiatric nurses and CBT therapists are not specialists in ME, never were, never will be.)

    I have Canadian Consensus Criteria ME but even in Scotland my gp refuses to use them - because AfME watered down the Scottish guidleines.

    I am sure you are well aware of all that, yet you demand answers to questions that would require real specialists to exist in the first place, when AfME are a huge part of why they don't.
     
    Last edited by a moderator: Jul 21, 2014
  10. Chickadee9

    Chickadee9

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    I was simply trying to understand your point of view. I understand your despair and anger and frustration. We have been neglected for too long. You have every right to feel that way given the way the psychs have dominated the field for so long. But I see them in retreat now...thank goodness. There is hope from the increased level of biomedical research. This all started off when I tried to understand why Min and a few others were against the CMRC---no response so far. I just have a feeling that their criticism is misdirected. If we spend our time arguing about definitions rather than doing research we'll get nowhere. Just my POV.
    You have a point of view and I have mine. I'm tired too and am signing off.
     
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  11. peggy-sue

    peggy-sue

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    I am not "tired" or "fatigued". Never have been.
    My body does not work properly, it does not make the energy it needs to function in the first place.
     
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  12. Valentijn

    Valentijn Activity Level: 3

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    These aren't mutually exclusive options. A properly focused ME definition used in research does not somehow put an end to efforts in alleviating anyone's suffering. It simply improves the quality and usefulness of the research.
     
  13. alex3619

    alex3619 Senior Member

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    Using good definitions decreases the cost and complexity of research. Good research can work with bad definitions, but in practice what happens is that the research develops better classification methods in the process. This however requires multidisciplinary studies, large studies, with large funding and resource requirements, and so extra time. Yet we cannot get funding, not enough of the right experts are interested, resources are limited, and I think most don't want to take this problem on. So what happens is that weak cohorts become the norm, with the excuse that the alternative is too hard.

    Another issue is operationalization. In converting a qualitative criteria to specific quantitative criteria in a study a lot can be lost, the the operationalized version can be fubar. We saw this with Fukuda at the CDC.

    Finally there is funding. priority. We have to be very careful, or ME might in fact be separated out, then all the research funding priority goes to the rest. ME could be in the cold.

    These are not simple issues.

    I am also trying to get people aware that the point that the WHO ICD lists ME as neurological is only one to raise awareness that there are other views. It proves nothing. If a compendium of diseases were proof, what would happen if the ICD suddenly followed the DSM? What about DSM categories? Surely they have validity too, therefore don't we have a psychosomatic illness in at least some cases? Its there in the compendium! These classification guides are just that, guides, not scientific sources. Their main use is to provide bureaucratic diagnostic codes.
     
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  14. Bob

    Bob

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    I agree that 'ME' might not be a single illness, and that it is difficult for clinicians to distinguish ME from fatigue.
    But it is possible to define 'ME', and to diagnose it, and now even perhaps to test for it.
    And 'ME' is different to fatigue.

    For research purposes, I'm of the opinion that it is essential to refine cohorts as narrowly as possible so that the research can be as meaningful as possible.
    Using 'post-exertional malaise' as a criteria to refine cohorts, can only be helpful in my opinion.

    I think that researching a broad category of fatigue has been a major problem over the years.
    Unfortunately, it suits many (e.g. some researchers, service providers, governments etc.) to lump all fatigued patients under one umbrella, and it suits some people to purposely confuse and mislead, on the back of the umbrella term 'CFS'.

    The UK CFS/ME research collaborative has a mixture of members. It was set up, and is led, by Prof Stephen Holgate who seems to be very capable, and only interested in biomedical research, and he seems to be very much on the side of patients. The collaboration also has some other excellent members. However, it also includes people such as Esther Crawley (as chair) and Peter White, so I don't think we can be certain how it will all pan out in the end.

    It might be difficult to distinguish chronic fatigue from 'ME', but I think it is possible for specialists to make a good attempt. Byron Hyde makes an excellent attempt to distinguish 'ME' from other causes of fatigue. I'm not sure about other specialists, but I'm sure that someone like Dan Peterson recognises ME when he sees it.

    Lenny Jason has attempted to diagnose CFS using a simple questionnaire (the DePaul symptom questionnaire) and I've never been able to work out if he includes a diagnosis for the CCC and ICC in the questionnaire. It would be very interesting if it did include the CCC and ICC.
     
    Last edited: Jul 19, 2014
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  15. Bob

    Bob

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    Is there some other description we can use, other than "pure" ME? It's just my personal opinion, but I don't like it, for various reasons.

    It's also not very helpful because e.g. Some people argue that "pure" ME relates only to people infected with an infectious enterovirus, such as those at the Royal Free Hospital, whereas others use it to refer to ICC ME. So it has different meanings.

    I prefer to use phrases such as "CCC/ICC ME" or "ME as opposed to chronic fatigue".
     
    Last edited: Jul 19, 2014
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  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    The point of the statement is political, ie an acknowledgement that there is strong collusion between govt and some charity groups to downgrade ME or CFS to simply chronic fatigue.

    25% Group is trying to legitimize a position which differentiates them from the colluding groups. It is difficult to see how they can do this without trying to differentiate the illness.

    In other words their ascribed definition of ME is politically necessary to counter this collusion. It is not necessary to believe in a so called pure definition of ME to be sympathetic to the statement.
     
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  17. Gingergrrl

    Gingergrrl Community Support Volunteer

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    This is a very interesting thread and I wanted to add my two cents b/c all these definitions are new to me since joining PR in June (and I just learned of the ME 25% group yesterday.) I am in the US (not UK) so I will try not to comment on that portion as I know I have not experienced the extent of stigmatization that sufferers in the UK have. Although I did see an ID specialist in the US months ago who was so mean and condescending toward my suffering that I left his office in tears and utter hopelessness and do relate.

    Okay here is my two cents... Part of the problem is that ME existed as an illness prior to the US giving it a new name of CFS at the Tahoe outbreak in the 80's. I knew none of this history and all the American doctors that I have seen (whether they are completely ignorant or considered specialists) use the term CFS. They do not use the term ME. I was given the CFS diagnosis by now a total of four doctors including a specialist at OMI using the criteria of Dr. Montoya at Stanford and I meet CCC and ICC definitions (but I still use the term CFS b/c that is what is used here in the US.) If I used the term ME with most doctors here, they would look at me like I was an alien.

    PEM is one of my most major symptoms along with the inability for my body to produce energy. GET or any kind of exercise would trigger a major relapse (or at times even kill me due to tachycardia and I am not exaggerating!)

    However, there are also thousands (millions?) of people who have other illnesses with "chronic fatigue" as a symptom but do not have ME/CFS. Those people need to have thorough investigations of their symptoms, too, but they have other illnesses- not ME and not CFS.

    This is where the research gets all screwed up and those people need to be kept out of the studies or it messes up the data. Whereas the other issue is sometimes semantics and different terms are used in different countries.
     
  18. Min

    Min Senior Member

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    If Alzheimers charities supported and worked with doctors researching people with mild memory problems, and then basing their treatment of Alzheimers on the results of such flawed research, there would be an outcry.

    Why are we in the UK expected to just accept the two largest myalgic encephalomyelitis charities here collaborating with doctors doing something similar with a different neurological illness, and patronisingly dismissing us as unreasonable if we dare to object? Why aren't they speaking out against these doctors instead of collaborating with them?

    In the three decades since the Wessely school of psychiatry first inappropriately took all research and treatment funding for our neurological illness, the situation for us has become worse and worse. Our larger charities don't appear to me to have achieved anything.

    White's proposed 'Body Distress Syndrome' is very frightening indeed, as is children who do not recover from myalgic encephalomyelitis being rediagnosed with persistant refusal syndrome seemingly in order to improve clinics' recovery rate.
     
    Last edited: Jul 20, 2014
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  19. user9876

    user9876 Senior Member

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    In saying this you make the assumption that the treatments that White et al are pushing worked in some way with some of their patient cohort. Looking at the way they have cherry picked the results from PACE I would guess that they didn't help anyone even from their broad intake and just had people who answered questions with a slightly more optimistic outlook along with normal fluctuations.
     
  20. Min

    Min Senior Member

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    I completely agree with you and did not mean to imply that the so called treatments that White et al push are helpful in any way.
     
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