Written Testimony to CFSAC Now Online

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by frenchtulip, Nov 15, 2009.

  1. frenchtulip

    frenchtulip Member

    Written testimony that was submitted to the CFSAC before the October 2009 meeting is now online at:
    http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html
  2. AuntTammie

    AuntTammie New Member

    I wonder if they are counting the number of hits on this part of the website, like they are with the video of the mtg

    there are several very good written testimonies.....only a couple that had some things that made me cringe (name calling in one and another one that seemed vaguely supportive of the CDC, although I think it was unintentional, bc it still pointed out problems with them, as well)....there are 26 in all which seems like a good number - not too many, which could result in the people who need to read them not actually doing so, and at the same time, not so few that it looks like we don't care

    several themes were repeated over and over (which was good, bc they need to be addressed), and at the same time, there was enough difference between them that it kept them interesting, & gave slightly different complimentary perspectives on some of the issues (which made the picture as a whole more full and complete)....plus there were exps of people who have experienced other illnesses and described CFS as being worse, and there were exps of people other than patients (family members, doctors) who gave credible accounts of their observations
  3. frenchtulip

    frenchtulip Member

  4. QuayMan

    QuayMan Member

  5. AuntTammie

    AuntTammie New Member

    in case they are counting the amt of times people view this, I want to make sure lots of people know about it
  6. QuayMan

    QuayMan Member

  7. mbofov

    mbofov Active Member

    I didn't know they would post links to submissions - it's great they did that, and thank you for letting us know about it!

    Mary
  8. QuayMan

    QuayMan Member

  9. QuayMan

    QuayMan Member

    I don't have time to read them all I'm afraid. If people could post bits they like or submissions they like, it'd be good I think. I know it might seem a bit like favouritism but I don't think it is - if people started saying ones they wouldn't recommend or rated them from top to bottom, that might not be ideal but if people point out ones they like or bits they like, that can be educational and people recognise it's subjective. And also the poster may not have read them all but can still post bits they like.
  10. onset1990

    onset1990 Member

    I don't think I can read it all!
  11. QuayMan

    QuayMan Member

    Yes, I agree. But some people may read some of them so as I said feel free to highlight bits or whole testimonies that you read that people should look out for. Most of us won't read them all.
  12. AuntTammie

    AuntTammie New Member

    I have actually managed to read all of it.....unfortunately I thought I had marked the good ones and either I didn't actually do so, or I cannot find where I put the notes......so I will try to go back and see if I remember more specifics by quickly looking at them again. I agree that it is a lot to get thru, but I do think that many are done pretty well.


    I would say rt off, though, that I would avoid the one by Sharon and Richard (both names are listed separately, one after the other, but it is one testimony).....it's the one I referred to earlier that includes name calling.....while I agree with the general sentiment, I feel that the whole message is completely discredited by the tone and the name calling....and I am glad to see that the others refrained from doing so. Too many of that type of testimony will only serve to give us a worse name.

    as to the rest, starting with the ones who testified in person and also submitted written testimony, here's a brief summary.....

    -Marly Silverman's post includes Tom Kindlen's petition and basically says that we need to reconcile the differences of the various grps working for CFS patients (or supposedly working for us- she didn't say supposedly - that's my take).

    -Robert Miller's spends almost a whole page thanking people, then mentions XMRV, family members, problems with getting Ampligen (he was on it and wants to cont but has not been able to bc of the FDA - that's his take; we obviously now know a bit more about that situation)...he also mentions Reeves' response to the news of XMRV and says that it was very bad

    -Courtney Alexander is the wife of Robert Miller (he's the CFS patient) and she mentions her dreams for her family, brings up Reeves' response and Ampligen and reads another patient's testimony which also brings up Ampligen

    well, I am realizing that this is going to take more energy than I have rt now - maybe I can get back to it later, bc there were several very good ones, but since the ones that testified in person were also available to watch, I think for now I will skip the rest of those & just go on to the strictly written ones


    -Anonymous #1 is fairly short, says that she has had breast cancer and CFS and the CFS is the worst....her dtr has been diagnosed with cancer and she is happy that it is the cancer, rather than CFS that her dtr has....she also lists several things that she recommends the CFSAC should try to bring about for CFS patients

    -Anonymous #2 tells her story ( worked in medical field, got mono, never got better)....says that the CDC needs to change things, inc the name and definition

    -Anthony Foran is an Aussie who says that other countries look to the US and that the CDC is blowing it....he goes into the name, CFS, and the use of CBT and GET, among other things....fairly well written and direct w/o attacking or calling names

    -Bonnie Mayer, RN tells her story, mentions some of her test results (giving evidence that this is not a psychological illness), and gives several recommendations inc getting rid of Reeves, changing the criteria that the CDC uses to evaluate CFS patients (they are not simply "unwell"), and a few others....I think she mentioned better Dr ed, too

    -Barbara Soliday has a dtr with CFS and she says that Drs need to be educated about CFS (my note - read Dr Ken Friedman's testimony if you haven't already - he tells how education is not included in medical training and is in fact, actively suppressed....very scary stuff)....she also mentions some of the things that can be done to help with some of the symptoms

    -Chanda Hines- hers is very short, mentions how she feels physically, that it is not depression, that Dr Reeves' response to XMRV is terrible, and that basically how dare he try to take away the hope that this discovery is giving us (for many of us, hope is all we have to hang onto)

    -Chris Neistepski- his testimony doesn't necessarily cover anything that isn't covered elsewhere, but it is well written, referenced, and respectful (even though it points out several issues) and is notable in that he is a 40 yr old male and it is important that more males w/ CFS are represented.....basically he brings up the problems with the CDC's emphasis on psych stuff and their definition, etc....he does mention a few Drs whom he thinks should be further consulted by the CFSAC, as well


    -Clair Prideoux (sp, sorry)- gives a very lengthy discussion of her story, says that she believes that CFS is not an autoimmune disorder and that she thinks that focusing on that possibility and on genes have hampered research (I disagree personally, esp regarding genes), gives several recommendations, inc working to change the definition, the public's perceptions about CFS and the Drs education....she also recommends the Marshall Protocol (which in my opinion is scary and not only unproven, but goes against medical advice as well as against the things that have helped me, but like I said, that's my opinion)

    -Confidential is writing to ask that they expedite the approval of Ampligen (not something the CFSAC has anything to do with, so I'm not sure why he/she wrote that), but he/she does say that he/she was on it and wants to be able to cont to take it

    -David Hall - another male with CFS, very short statement basically asking for better funding and research....asks for "progressive" leadership at the CDC

    -Esther Siebert - short and sweet, asks for a change of leadership at the CDC to "someone who knows a lot and gives a damn" (!)....also mentions the WPI and how much they have done in so little time compared to the CDC...hopes that the discovery of XMRV will make a difference

    -Carol Geraci - lengthy, too much so for me to re-read the whole thing, but from skimming it, I think it was one that I felt was well written and worth reading....basically says shame on you to the CDC for wasting so much time when the WPI was able to do so much so quickly....calls for urgent, quick new treatments and education for Drs, breifly gives her story, etc

    -Kaspar Ezelius - man from Sweden - also points out the US influence and impact on CFS treatment (or lack therof) in other countries, brings up the financial impact of CFS and the "returns" that could come of finding better treatment, brings up the need for a different definition, and other recommendations similar to many of the other testimonies


    -Lily Chu, MD -former medical researcher, was at stakeholders' mtg in May, said has yet to see any good come from it, even though the recommendations made then were good, says that she wants to know more about Ampligen, and mentions the CDC's lack of cooperation with any other grps and their lack of attendance at conferences

    well, that is as much as I can manage to report about rt now, though I will say that the last two (Tammie Page and Tom Kindlen) have been posted on here before ....though I hesitate to endorse mine, I do think that it turned out well and everyone who has read it has had good things to say about it....I do talk about the definition and name CFS, like several others, but I also discuss my personal and professional experiences with depression and other mental illnesses and the differences between them and CFS from a stand point that no one else covered.....and I make a couple of comparisons to other illnesses....and I say that it is not the stigma associated with mental illness that makes us say that CFS is not a mental illness, but rather the desire for treatments that will help (& the fact that psych treatments won't help a physical illness, which CFS is)- I say more about it than that, but I am now too fried to explain better......also I think that Tom's is quite well done, too....I would recommend reading his if you have not yet

    i will try to finish summarizing the rest of them sometime soon if this is kept bumped (so that i remember)



    [This Message was Edited on 12/02/2009]
    [This Message was Edited on 12/02/2009]
    [This Message was Edited on 12/02/2009]
  13. AuntTammie

    AuntTammie New Member

  14. jasminetee

    jasminetee Member

    Thank you frenchtulip. I appreciate being able to read those. Aunt Tammie, your synopsis is helpful. I actually liked the ones you warned us about. Fire it up Baby! ;) Of course, once you warned us, I had to go right to them. lol


    You did a very nice job on your testimony, Aunt Tammie and I agree with everything you say. Thank you so much for putting in your time and effort for all of us. :)

    tee
    [This Message was Edited on 12/03/2009]
  15. AuntTammie

    AuntTammie New Member

    thanks! & you're welcome

    .....and I kind of wondered if my warning would serve the opposite purpose : )

    I only put it there bc people were trying to decide which ones to take the time & energy to read & I figured that one was not worth it (if people are barely listening to us when we are respectful, I think that calling names is only going to make the situation worse - most people automatically get angry, defensive and/or stop listening when they are called names....or even when they "hear" others getting called names.....as a tactic for being heard, it generally really backfires)

    While I generally agree with the sentiment behind those statements, I am angry at the harm that they could cause bc of the impression that they might give others of us
  16. QuayMan

    QuayMan Member

    Excellent AuntTammie. Just excellent.

    There's a summary of Sarah G's at:
    http://forums.aboutmecfs.org/showpost.php?p=19466&postcount=5

    It's quite a long summary but she managed to get in a lot of points.
  17. QuayMan

    QuayMan Member

    AuntTammie wanted a reminder in case she had energy to mention more of the testimonies.
  18. AuntTammie

    AuntTammie New Member

    for the bump.....am too wiped out rt now to cont with the summaries, but will definitely try to do more soon
  19. QuayMan

    QuayMan Member

  20. AuntTammie

    AuntTammie New Member

    still planning to finish the summaries, but am having big problems with this site (for some reason it is taking a really l-o-n-g time to load everything on here (so trying to go back and forth between the written testimony and this page as I was doing would take forever)....everything else on my computer is working fine, so it is somethign with this site....hopefully it will get resolved and I will finish the summaries