Do You Know What's Going On?

Discussion in 'Fibromyalgia Main Forum' started by skeptik2, Jun 13, 2009.

  1. skeptik2

    skeptik2 Member

    I'm surprised at the few number of replies to the most important posts on here right now, for this time and place in history: Quaymans post about the testimonies at the CFSAC meeting and outofsteps about the Hillary Johnson speech.

    If we don't keep the momemtum up, all will be lost; unless of course we are working all other fronts also.

    Can we keep those two posts bumped?

    Also, which thread has John Anderson's post?

  2. Rafiki

    Rafiki New Member

    Do you know what's going on?

    A lot of people don't seem to. Perhaps they think these posts will be boring or cognitively challenging. Don't know. It's pretty dispiriting.

    It has also come to my attention lately that there are quite a number of people here on the board who believe most of the general public knows ME is a biologically based illness, which could not be further from the truth as far as I can tell, or who's negative energy should simply be ignored if they don't.

    They seem unaware that people are losing their liberty, their children, their reputations, their futures...

    right now


    I don't get it.

    Please, everyone, inform yourselves regarding the perilous position of people with ME right now

    Big thanks to you Skeptik,
  3. Sacajawea2

    Sacajawea2 Member

    Hi, I sure hate to see you so frustrated. I know so many of us just don't have much capacity for whatever reason to put a whole lot into this-- for reasons you mentioned or even just that so many other things pop up...

    I've watched the videos several times and tried to bump some posts but with all I have going on, I have to feel comfortable with what I can do, and for me that's the extent of it for now. I have some pretty stressful battles of another kind.

    However, I hate to see this get ignored.
    Skeptic, please, could you change the title of this thread? I almost didn't open it because I have such limited energy right now and it wasn't very specific. I can't say whether or not that will help to get others more involved but perhaps it will.

    I did bump one of Rafiki's posts on the chitchat board (or rather put in a link to her thread where one can view the videos) after reading your post over there.

    Skeptic, you mentioned you have limited abilities to search or something like that (brainfog).
    I do have a grasp on searching and if you tell me what needs to be bumped, I will search and bump it for you....

    Don't get discouraged and keep it up, others will follow. Sometimes it takes a great deal of effort to get someone to look...and then to be willing to look further.

  4. Rafiki

    Rafiki New Member

    I do hope you are coping - I know you have been overcoming in a serious way!

    Thanks much for you offer to be a bumper! You are a dear, dear person.

    As to this issue, I may need to find a different community as this one may simply not suite my needs as well as it does the needs of many others.

    Lately, I have really been struggling to spend any time at all on the computer and what stamina I have I need to give to the effort of moving forward awareness. When having a real struggle thinking and expressing myself and simply trying to figure out what to bump is a big challenge, I think I'd be more helpful and happy where I was with more people with similar priorities. I am in search of a site more skewed towards activism but I'm barely cogitating right now so it's slow going.

    Take care of you and yours,
  5. Sacajawea2

    Sacajawea2 Member

    Eeek...what would we do without you? And me, I'm being selfish but mean sooo much to me!!!

    Okay, but you've got to do what you've got to you go to the hummingbirds site (can't think of the entire name)? It's exclusive for ME and as far as I know big on activism (but I haven't been there in a while). I can find the link for you if you need it.

    I checked out the facebook page for Brian and there are other links on there of other support groups...have you been there? I pasted it below, as I still have it open, still reading about it.

    Civil Rights ME/CFS myalgic encephalomyelitis dysautonomia

    A Hummingbirds Guide to Myalgic Encephalomyelitis:


    PS Please don't go away all together...[This Message was Edited on 06/14/2009]
  6. Rafiki

    Rafiki New Member

    I know. I don't get it. I share your frustration.

    Keep the Rant,
  7. Rafiki

    Rafiki New Member

    Yes, I know it well.

  8. Rafiki

    Rafiki New Member

    Thanks for this.

    Yes, I know Jodie Basset's site, too. I've been in this community for a long time so I'm pretty familiar with those that have been around for a while.

    I will check out the Facebook group.

    Peace and thankyous,

  9. gapsych

    gapsych New Member

    When I heard the number of people who watched the hearings, I was shocked.

    Life is not like the movies which show big things happening, with all the excitement dramatized and exaggerated.

    Real life is like watching the CDC meeting. It is not glamorous, it may be slow but very important.

    We are put in a double blind. We do not have energy and not many people believe us. Some of us are barely keeping our heads above water physically. emotionally, financially, etc.

    I was going to ask friends to at least log into the videos to get the numbers up. Did it happen? No, I was in a flare, a lot of other things were going on, but now I am frustrated about the fact that I didn't.

    If I had just posted this maybe others would have done the same. Maybe people did suggest this and I just missed it. I am not saying this to hear, "Oh don't be so hard on yourself" but to show that life sometimes gets in the way.

    I don't know what the answers are but I think coming together and brainstorming has to benefit.

    Excuse my rambling here. I only have my head and shoulders above the water today.

    I think I need a personal assistant to help me advocate!!!

    Thanks so much to all who listed the websites.

    Here's a bump!!

  10. skeptik2

    skeptik2 Member

    sj: give me a title, I'll change it! Thanks!

    rafiki: please don't leave now! We need this even tho' small community even more than ever. We may get 1, 6, 10 new people on the bandwagon. Every one counts! I'm also in PANDORA, going to be one of their new program advocates "extraordinaire", LOL: when they watch my words go thru brain burps, they may change their mind. We can use you desperately over there, the cfsknowledgecenter is awsome, also with Dr. Klimas; excellent site with awsome links going on forever.

    kamina: yes, you are so right; we are here to listen and support, but that's a two-way street; we are here for all, especially the "newbies", and this is a critical time for our movement and futures. I want everyone here to just add their voices to the conversation about our lives now, in the future, our kids and grandkids who are going to come down with ME if we don't do something right now!

    gapsych: Watching the video is like slow torture in many ways, I know, but one doesn't have to watch: just put it on in the background and listen and dust the furniture of something...but don't get too aerobic, lol.

    Blessings on you all
  11. skeptik2

    skeptik2 Member

    I wanted to separate this from my "mass answer" even tho' I asked you a specific question, hope to hear from you soon.

    I only have webtv right now; the computer's sitting in the other room; don't know how to operate one. Until then, I cannot open links given on this site; I can open links on other websites, if they are highlighted in blue, or in email.

    I get all the posts from Co-Cure; I can forward them and file them but to send them out, from the folders, I have to open each one again, and send to many others. Then for the next, and the next. I have spent over 60 hrs doing this over the past month of the CDC meeting, the CFSAC meeting, THE IACFS/ME and so on.

    I send it to them to all my friends, contacts, family, a support group (each member's emai!), etc.Several have written back and said they are fwd'g them to their address book. Hopefully, some are doing so without telling me.

    I am extremely fortunate that I have a partner that supports my activism and is willing to take on more household duties in order for me to do so. However, I also have some extreme family stresses, including a very sick grdau who has M.E., not a dime, old raggedy clothes, etc., who just came to live with us. Her needs are great. My activism is for her and all the the next two generations now getting ME. sO I have a great motivation, and it's a selfish one in a way, but I just am "mad as hell, and not going to take it anymore"!

    You do just what you can, and we are here to send you strength to do it, alright? I'm so grateful for your advice about the title, and we'll work together on a new one that WILL get attention, is that ok?

    Many hugs and much support in your struggles,
  12. Sacajawea2

    Sacajawea2 Member

    Actually, lol, I've been humming Marvin Gaye's

    "What's Going On" all afternoon thanks to your maybe it should stay, as it sort of fits...!

    Yes, Rafiki, listen to Skeptic ...this board just wouldn't be the same without you. You have a unique influence, among others and tooo much to offer...we're listening!!!

    This is really the only board I have energy for anyway so I don't venture to any other health boards at all and I'm sure I'm not the only one. I can bump...and Gaps idea of sending the link to others who are healthy to watch/play in the background is a good idea!

    If you shout it, preach it, announce it and offer it out there, more will be willing to not only listen but join you, and sometimes a small number can make a large difference...

    Meanwhile, there are other issues here that help so many, and for those who have so many things going on, they need to be heard as well.


    Skeptic, we were posting at the same time...I have to leave for a bit and will come back and re read your post to me and we can figure something out. I know the formula to make the links here "blue" but not sure if it will work on the new board so let me fiddle around...I'll be back later! You have been very busy!!![This Message was Edited on 06/14/2009]
  13. AuntTammie

    AuntTammie New Member

    Rafiki, I appreciate all your efforts and I am sure that there are quite a few others who do, too - please don't go, or at least not entirely - I do understand if you feel that your limited energy would be better served elsewhere, but I think you underestimate the impact you have here

    whoever mentioned this (sorry I forgot who said it) - I like the idea of playing the video in the background - I tried to watch it when it was live, but couldn't get it to work (even though I did all the checks beforehand, and even though my IPO is fast enough, etc)....since then I have been crashing far too badly to watch the whole thing, but maybe I will try to put it in the background

    also, one thing I did want to comment on regarding the numbers, is that I was talking to a friend recently about advocacy and wondering how much difference writing letters actually makes (I'm not planning to stop doing so, or anything, just wondering)...he said that in general, people in the govt; congress, senators, etc....have a certain number that they figure each letter represents (for exp - this is just random, though, bc he couldn't rememebr the actual number, if one person writes a letter about an issue, then the senator, or whoever, figures that there are actually 7 people out there who hold the same opinion, so 10 letters= roughly 700 people, and so on)....considering that this applies to the general, healthier public, then the people getting our letters and petitions (& counting how many are watching the video) should have to figure that each letter, etc. probably represents an even larger amt bc there are so many of us who are too sick to be able to do anything (if that makes sense)

    I don't know if they are actually considering this, or not, but what I am trying to say is that even fairly small amounts of people trying to advocate can make a difference - of course, the more the better, but try not to be too discouraged by what might seem like too small of a response
  14. stschn

    stschn New Member

    to watch and I tried to sign the poll etc. The only thing I was able to do was send the letter to all my represenatives Obama etc and that took me two days. If there is no hot link I just can NOT do it and I think a lot of you don't understand how hard it is for some of us to do what you are asking for. I feel enough guilt as it is.
  15. gapsych

    gapsych New Member

    Can you still watch the tape of the meeting and have it count towards the number of people who have watched the video?

    [This Message was Edited on 06/14/2009]
  16. Khalyal

    Khalyal New Member

    What is going on?

    It has been a stunning spring for the CFS and ME communities. I hesitate to say either ME/CFS or CFS/ME or CFIDS or any other variation or combination of these two anacronyms. There are several political connotations to consider when talking about this disease, and it would pay to find out why. The politics that drive the name confusion are the same politics that have kept you, personally, from getting research into your disease and potentially a cure.

    So here’s a review. It’s basic, and only hit’s the highlights. But it is worthwhile to familiarize yourself with some of these events at the very least, and hopefully follow up with further reading and perhaps some participation in the politics that affect your life. Not everyone can do much. But every voice counts, and in order to educate the public, we must first educate ourselves!

    The first step, I think, would be to read Hillary Johnson’s fantastic blog, which is a copy of a speech she gave in May of this year in London. This is out of sequence, but in order to understand the import of the rest of what is happening, it is an excellent educational tool. In the speech, she outlines the political malfeasance that has affected us here in the states, and abroad. For those of you who are not familiar with the name Hillary Johnson, she is the author of Osler’s Web, a detailed chronicle of how CFS came to be.

    Her blog is at:

    Now, for a mini-history of the events of this spring:

    1. In March, the IACFS/ME conference was held in Reno, NV. The IACFS/ME is a unique organization and one that is very important to us, medically and politically. It is an international organization of 500 biomedical and behavioral scientists, clinicians, and educators that promotes, stimulates and coordinates the exchange of ideas about CFS and related illnesses”. The fact that this conference was held in Reno was a sort of “coming home” for Dr. Daniel Peterson, who has been involved in CFS research from the beginning, as one of the two doctors who called the CDC out to Incline Village in the first place back in the 80’s. Dr. Peterson has established the Whittemore Peterson Institute in Nevada, and still maintains the blood and tissue samples from the original cohort, the people for whom CFS was so infamously named.

    Dr Charles Lapp’s summary can be seen here:

    2. May 12 was International ME/CFS awareness day. On that very day, Dr. Derek Enlander made the announcement that he was starting a new journal called “Fatigue”. This announcement split advocacy groups, as some were outraged at the choice of the name after fighting for a quarter of a century against all of the suffering that the connotations of that word has caused, and at the announcement of such a journal on the day set aside to bring awareness to the world. Other advocates were suddenly tolerant of the word since the word was being used by CFS experts. To read more, see:

    And Dr. Enlander’s response here:

    3. Also in May, the CFSAC advisory committee met with the CDC. We, the sick,were invited to testify. We were also invited to testify by phone if we could not make it in person. This invitation was not extended until the meeting was almost upon us, as an afterthought and no doubt in response to pressure for the advocacy groups. Also, historically, the meetings were videocast so all of us at home could watch them live. This was due to some very hard work and advocacy done by Jean Harrison and here group at MAME.

    Some of the testimonies given:

    Watch the videos:

    (It is important to watch them! If not enough people do, they probably will not video further conferences).

    Dr. Bill Reeves’ presentation and what it means to you:

    IACFS/ME president’s call for the replacement of Bill Reeves:

    Craig Maupin’s recap of why this is SUCH a time of opportunity:

    Read comments of posters here:

    4. On the heels of the CFSAC meeting, Dr. Kenny De Meirleir gave a press conference where he announced a home test for diagnosis of CFS. Read about it here:

    5. The Invest In ME conference in London was held. Hillary Johnson gave a remarkable speech, which I already referenced at the beginning of this post. Here it is again, just in case:

    John Anderson’s followup to Hillary’s blog was brilliantly crafted. It can be found here:


    Ampligen has come up for approval by the FDA, and has been postponed yet again. This has been going on for 10 years:

    A mother has been charged for murder in the death of her daughter, who had ME. ME support groups are trying to step in with support funds and dissimination of information.

    A petition to stop the CDC from using the “Reeves empirical” to define CFS has been in existence since April. It is still critical to get signatures on this.

    The Whittemore Peterson Institute is a beacon of scientific research, and Annette Whittemore has a goal to start 5 total such institutes. Read more at:

    PANDORA, another important advocacy group, is trying to get an “Advocates Extraordinaire” program going for those of us who are extreme advocates:

    For those who cannot do much but are wishing to at least have a say, there is a very simple poll. Do you think Reeves should be replaced….yes no or maybe?

    Dr. Daniel Peterson’s presentation at REM Goteborg (Swedish ME Patient organization)

    There is ever so much more. But maybe if we have a onestop shop, like this list, it will be easier to access and to learn.

    Why can't we have a thread at the very top for "current events"? Anybody?

  17. bigmama2

    bigmama2 New Member

    i also am and have been very concerned about the lack of advocacy by us- the cfs patients. we are the ones who have to fight and stand up for ourselves. hard to do while we are sick- but must be done. its the only way. i have done some things for cfs advocacy- but i need to do much more. granted some of us are so ill that daily living is a huge challenge. but ! the majority of us CAN do something. so why dont we? what is our excuse? this needs to change.

    i would be EXCELLENT if prohealth could have a advocacy board. or have a thread at top everyday. or something major.

    rafiki - i too get frustrated.

    khaly- thanks for the great recap.
  18. skeptik2

    skeptik2 Member

    She just got here Friday. We have so much to cover together; I'm filing her SSDI this coming week, getting her to a dr here, to a university 2 miles away as she has to be a student while filing under her parent's SS account, so we haven't been near the computer yet.

    We will though, thank you for thinking of her.


    All others: I'm beat; will answer tomorrow (well, later today, it's 4:20)..good night.

  19. Rafiki

    Rafiki New Member

    I completely understand, I really do.

    There is a post somewhere which describes why it took me several days to get to that CFSAC meeting link and turn it on. It was days later before I got to day 2. (The prospect of trying to watch live was overwhelming to me.) For much of it, I turned it way down, propped the laptop on the back of the couch, closed my eyes and listened to what I could hear having turned the sound very nearly off. Like you, I only do what I can and it isn't much. Lately, it's been even less.

    But, somewhere at NIH where they are counting views of meetings on their site in order to make decisions about whether or not to broadcast and archive it next year, our views will count. Even if we didn't understand all of it, even if it rattled our synapses and rocked our eyeballs, we will be counted among those interested enough to watch and, at the next meeting, they will put those resources into it again. If none watch, they won't bother. You did your bit.

    My question as to why people would research this if they did not have it was rhetorical. Of course they wouldn't. I was trying to illustrate how little understood this illness is. I am having huge cognitive issues lately so I'm not surprised I was not able to make that clear.

    I'm been asleep almost all weekend since I foolishly sat in the sun for about 30 minutes having a conversation with someone on the dog beach. I was wearing long sleeves and high neck but no hat and got sun on my face which has left me semi-comatose since Friday afternoon.

    I should probably shut up until I wake up.

    Anchor, I join you in thanking our activists!

    And, that you for this message to me :eek:)

    peace out,
  20. Rafiki

    Rafiki New Member

    Forgive me if I've forgotten your name. No brain.
    Someone mentioned having an activist board. I think that's a fine idea. There are boards here which have very little action.

    One of the problems I have is that I cannot find threads about things I'm interested in among threads about things other people are interested in. Sometimes, by the time I've found a thread, I have nothing left in my energy reserve to comment.

    This has always been a problem on this board. There are other designs for message boards that I find far more user friendly. I'm sure you have experienced them. Things are organized under topics and one knows where to go right away. This board with one stream of unorganized threads for all things ME and CFIDS and CFS and FM and sometimes other OT things, too, is very difficult for me to navigate. Not always, but often and, certainly, now!

    Now I can't remember what was said.

    Really sorry!

    I have not always been this stupid and I do hope it is not a permanent condition!

    Thanks for your indugence,

    ETA And, Gap and Caledonia, too.
    [This Message was Edited on 06/15/2009]