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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 19, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. SpecialK82

    SpecialK82 Senior Member

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    Thanks Jody for your insight and notes from the meeting.

    While I too was frustrated at the beginning of the meeting, I was happy to see that they agreed to extend the meeting by an hour. Many of the thing Sandra Kweder discussed were also mentioned at the CFSAC but I suppose she cannot assume that it's the exact same audience and I guess you have to start somewhere.

    Having said that, I have also been impressed with Sandra Kweder in general in these last few meetings, and I feel that she is on the ball. She may be willing to really get this stuff rolling for us, I'm happy so far with the schedule of meetings that they are having for us. What I'd like to see is this community accept the hand that she/the FDA is offering. If they would like to calmly and rationally discuss the issue, then we need to be right there at the table.

    I thought the inclusion of Mary Dwight and Pat Furlong was brilliant. The FDA showed us other illnesses that weren't getting their share of the attention, and let them tell us how they turned it around. These ladies described, in broad strokes, how they got some action. They felt totally partnered with the FDA, and at times they were frustrated, but they figured out how to work through the obstacles.

    I have felt for a long time that we really have to learn from other illnesses and their successful advocacy campaigns. No one illness will fit all the problems that the ME/CFS Community faces, but when we learn several of these models, we could could cut and paste our own effective campaign.


    As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
    I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit.
  3. Kati

    Kati Patient in training

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    special K you said: "As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
    I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit."

    Well said, I agree.
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  4. taniaaust1

    taniaaust1 Senior Member

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    In other conditions, "progress has been made by establishing definition of the clinical trial populations" ..

    I personally cant see any big progress forward unless they start using something like the new International ME consensus criteria. They will never have any hope of learning about and defining the illness better unless they start using stricter definitions for research which will help to disclude other things. So my question is.. how does people make that happen? This is the big question I wish to know... Is anyone giving the ME/CFS community any idea how to bring this change about to get researchers using a good definition? Has this meeting shown a way forward in that area which is holding everything up? Is this meeting the help we need to move forward or not? (or is it another miss of the situation ME/CFS is currently in?)

    Its a catch 22.. till there is good definiton (not a lot of different ones like there is now) and not all the controversy, it would be hard to get drug companies involved and this is why ME/CFS needs government funding..and lots of it too.

    Getting the drug companies involved while using poor ME/CFS definations isnt going to end up helping ME patients much and even if they are testing drugs which may help us (eg the one which kills B cells).. the results are going to be screwed up unless they are using a good ME definition.
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks for all your work on this Jody, we appreciate the time u put in.

    cheers!!
    merylg likes this.
  6. justy

    justy Senior Member

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    Thanks Jody - although over in the UK i follow the situation in the states closely. For me in the UK it is a great hope to me that things are moving forward in the states, this way they will move forward for all of us throughout the world. (of course not forgetting the work of many researchers around the world)
    All the best,
    Justy
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  7. Enid

    Enid Senior Member

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    Thanks Jody - there is so little happening in the UK, it good to to see how investigations/research continue so well overseas.
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  8. Jody

    Jody Senior Member

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    SpecialK82,

    We can hope that something worthwhile can come from this.

    I agree that Mary Dwight and Pat Furlong were great. Their experience could prove to be very helpful for us. Perhaps a time of change is upon us.
    merylg likes this.
  9. Jody

    Jody Senior Member

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    Heapsreal,

    Happy to do it. Thanks. :)
  10. Jody

    Jody Senior Member

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    Justy,

    I don't live in the States myself. I'm in Canada so changes in the U.S. aren't going to have any direct effect on me either. But as you say, changes in the States can cause ripples of change on this throughout the world.
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  11. Jody

    Jody Senior Member

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    Enid,

    Let's hope that any changes happening in the U.S. will have an effect outside its borders.
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  12. Nielk

    Nielk

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    Thanks Jody for this comprehensive outline of the FDA meeting. There is no way that I could have followed this for 2 hours myself.

    Any open dialogue is a step in the right direction. I think that it is very hopeful that the FDA is even trying to address ME/CFS and willing to work with us.

    In addition, I agree that we need to learn from others' successes that have come before us. This is very instructive.

    Jody said:

    I have wondered about this problem for a long time. Why is it that our loved ones are not rallying for us? I know that many of us have support from family members or friends but, it doesn't translate in "fighting" for us. Why is that?.
  13. Jody

    Jody Senior Member

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    Nielk,

    Cort said something once a few years ago about this lack of family involvement we have, compared to other patient groups. I'd been sick for many years when he said this, and had lived with very little family interest and involvement in my own family all that time and yet ... until that moment it had never really gelled in my head (now there's imagery:)).

    I have wondered about this ever since. Does it say something about the type of families we come from? Something about our DNA? Something about theirs? Do so few of our family members believe we are in the dire straits we say we are in?

    Lots of questions begin to emerge, no answers though, at least I don't know them.
    merylg, Sing and Nielk like this.
  14. Sasha

    Sasha Fine, thank you

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    This is an interesting question. I've been lucky enough to always have unquestioning support in my illness from my family. Last week, I was complaining to my sister about how my application for disability benefits was being treated by the government department responsible - this specific issue is a national scandal (literally - in the TV news, the doctors' union coming out against the government's handling of it, and so on) and she asked me what she could do. I didn't know, apart from write to her MP - I've done that to my MP and just got the brush-off.

    I don't know what to tell her to do to help with the ME situation, other than try to raise money for research (which she does). There's no campaign for her and others like her to join. I don't even feel there's one for me to join. I don't know what action to take.

    Is this the difference between ME, MS, AIDS and these other groups? Not that our families or their attitudes are different but that there's no clear course of action?

    Do we need a roadmap?
  15. Jody

    Jody Senior Member

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    The fact that we lack such basic things as a clear and proper definition of the condition, that there are probably so many different kinds of syndromes or illnesses that are under the umbrella ... right here is another problem, we do not even have a name we can call it that all of us are comfortable with and that the medical community are in agreement on. And that is no fault of the patient community, just one more indication of the confusion that still surrounds and permeates our illness.

    But what Cort had mentioned that time a few years ago and what stuck with me was, Where are the families fighting for their sick? They've been there for AIDS, for autism, for various kinds of cancer, and the list goes on. The sick people were not the ones who had to do it. Even with all the confusion and uncertainty inherent in our situation, the lack of other people putting us in the news, running campaigns of different types for us, they have just not been happening.

    When AIDS first hit the news, at least as I recall it, there was alot of uncertainty as to what was being dealt with, research results took some time to get anywhere, and AIDS had the added whammy of the whole prejudice against homosexuals, the notion that this was divine judgment and what "they" had coming and so forth, people with AIDS were being shunned, fired and kicked out of places. So there was quite a mess there for a long time.

    And yet. People rallied for them. As in all this time nobody has rallied for us.

    The average mom or dad is not going to be able to launch a grassroots campaign or organization or series of events for us. Your sister, and my mom and cousin who, outside of my husband and kids were the only family members who have seemed to bat an eye for me, they can't just start something on their own.

    It does take certain types of people with certain areas of expertise and contacts I think for that sort of thing. But ... other groups have such people who appear on the scene and the average mom or dad or friend is able to join them. Or so it seems to me.

    Maybe the webinar will turn out to be part of the road map for us.
    merylg likes this.
  16. Sasha

    Sasha Fine, thank you

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    I think AIDS is a special case. I agree it had huge disadvantages in terms of social prejudice but in terms of advocacy it had big differences from our situation: high prevalence in the gay population initially where there was already a strong community already used to advocacy (often a geographically close one), plus a sense of urgency because people were dying. I don't know even one other person with ME in the whole country because I've never formed a social life around my illness (except for posting here online).

    I think MS in the days before it was understood would be a better model for us than AIDS. Was MS advocacy actually successful at that point? I only know MS as exactly that - multiple sclerosis, presumably named once the mechanism was understood. Were MS advocates successful before that?
    merylg likes this.
  17. waiting

    waiting Senior Member

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    Regarding the lack of support:

    This article by Llewellyn King accurately pinpointed the essence of our problem, I believe. A quote from the article:

    "There are parallels as well as dissimilarities to the early days of the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is sloth."

    Regarding next steps:

    As a (new) starting point, what do other PR members think about the Coalition for ME/CFS (www.coalition4mecfs.org/), of which PR is already a member, perhaps along with the CAA, requesting a meeting with Mary Dwight and Pat Furlong? We'd have to go in very well prepared (vast, thorny topic) with a well-planned agenda (to make best use of their time) and a person who is a professional facilitator (I think some of our PR members have this expertise and could perhaps help select someone?).
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  18. Sasha

    Sasha Fine, thank you

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    Interesting 'sloth' quote. I think that's exactly the stigma we're facing.

    Did MS, in the days before it was understood, have the same 'it's all in their heads' stigma and if so, did they overcome it before the objective signs of disease were shown? Or did their successful advocacy only begin afterwards?
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  19. Aileen

    Aileen Senior Member

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    exactly... I think a lot of people are of the opinion: "If you won't help yourself, why should I help you?" The point is that we are, as best we can, but they don't understand this. I wish we had something people could put on, like one of those "empathy bellies" that stimulate what it is like to be pregnant, so that people could understand some of what we go through. :( How about a specially-made lead-weighted unitard? o_O

    Regarding next steps:

    Sounds like an excellent idea to me.
  20. waiting

    waiting Senior Member

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    Yes, if we could set up such a meeting, I think it is crucial that we include an MS advocate for the reasons you mention. Perhaps Sandra Kweder or Richard Klein could provide us with the name of an MS advocate they have worked with (and, I think, an HIV/AIDS advocate).

    Since the definition problem bedevils us, it might be good to include previous CFSAC members like Dr. Lenny Jason (he is a strong and prominent advocate in the Voices in the Shadows film). Current CFSAC members like Stephen Krafchik would be another strong, excellent addition. Both of them are experts in ME, well-regarded, well-spoken, and eminently reasonable advocates.
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