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Throwin up White Flag on Rituxan Also! :(

Discussion in 'Rituximab: News and Research' started by Jacque, May 25, 2013.

  1. ukxmrv

    ukxmrv Senior Member

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    We are all learning here Jacque. It never occurred to me (just as an example) that a reporter would take a patients blog and then use it to misrepresent what they were trying to tell us about this drug.

    I think that was what made some of us think about the things we are sharing here and how to do it. I was one of the patients who encouraged you and asked you to write about your experiences early on. I still want to hear them. Don't want, though, for your comments to be picked up by one rotten spy and be used to attack the drug or the doctor. Don't think that they would hesitate to use quotes out of context.

    Maybe it is not worth us censoring ourselves or taking to another part of the forum. What's your opinion?

    Really sorry that this is so upsetting for all of us and especially when you have been so kind and brave to share your experience.
  2. Firestormm

    Firestormm Guest

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    Just a thought - sorry haven't been reading all the most recent comments - but presumably the Dr knows about your decision and will record it in any results he might be collating. I wondered if the Norwegians might also be interested to learn of your (and others') experiences? I am sorry you have had such an experience but I hope you don't feel the venture was without merit. Good luck :)
    Jacque likes this.
  3. Jacque

    Jacque Senior Member

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    Ok... I completely understand what you are saying.....but......shouldn't we just shut the site down then? I mean some people do horrrrrible on Valcyte...and post about it...and some get well....others feel horrible from the Methylation and post about it...some stick with it some don't ETC ETC So do we all just shut completely up and not share what our personal experience? I am perplexed about this as I would never want to slow down research. I was reading about Rife machines for Lyme today...lots of negative as well as positive. And I am glad I read it ALL... I am at a loss on this subject as I am not a paranoid type and never considered someone using our words against us... I joined this site because I thought I would be with like minded/bodied peeps tryin to wade through this crap together... God this illness is just INSANE on so many levels isn't it.... sigh
    The Spitfire, ukxmrv and heapsreal like this.
  4. Jacque

    Jacque Senior Member

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    Yes my Dr knows and understands and it was he that told me that those who fall into the pain syndrome arena are the ones experiencing this. So ... if they learn something from that then it will be worth it... kinda... My doc gave me the option of waiting until research was complete...but it was my decision to move forward, being a type A... My experience was not horrific or anything like that...but was just what I said disheartening and expensive... And in good conscience I could not continue now that I have DOUBLED my pain meds, and have a new prescription for Oxycontin taboot... Kickin up the inflammation even more was OUT of the question...but that was just MY experience... Thanks
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good points, we have all mentioned feeling horrible from certain treatments. Maybe we could start a thread on cbt/get then they will stop advising that, oh we already have.

    i think its wrong censory our experiences, then they will say we are trying to hide something. we need a balance of opinions. We all know some dont respond to valcyte and some do and we also know that many feel like crap on it. if we didnt share these experiences then there would be even less people have tried valcyte and be alot less recognised as a treatment for certain sub groups with cfs/me. Also those that do try valcyte and can tolerate it to a certain degree but not notice any improvements after 6 months, then after reading others experiences they would probably know its not going to work and save themselves a small fortune. The same goes with ritux and the same goes with ampligen as i have heard of more expensive failures with amp then success.

    WHo gives a rats if some reporter reads something off here and twists it around, they have been doing that for years and they would add there bit of BS about yuppy flu too, the yuppy flu BS has been around since the 1980s. I think we need to be here to support each other and share each others experiences and learn from each other, at the moment thats the only way we have to move forward with this illness for most of us. if we didnt hear the negative experiences than ritux sounds like a cure for all of us???Even if something like rituix was approved for cfs, its probably going to be to late to help most of us as its out of the price range 99% of people can afford.

    We would be just as bad a sir wessely if we only posted positive reports with ritux, we arent that low.

    cheers!!!
  6. Esther12

    Esther12 Senior Member

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    That's true. I don't really know enough about the situation to comment, so should probably keep quiet.

    Best wishes to all.
  7. Kina

    Kina Moderation Team Lead

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    Jacque -- Nobody is 'bashing' you for writing your experiences. Members are making comments based on what you have said, if they have drawn erroneous conclusions, why not correct them gently without resorting to comments that Phoenix Rising 'sucks' and referring to Phoenix Rising as a 'snake pit' (in another post). It doesn't appear that any member is 'outraged' that you have expressed yourself here. It's hard to know how people are feeling when they post unless they accompany their words with an emoticon that gives a hint. This just one thread out of many on the website, you really can't judge 'Phoenix Rising' by one thread that only a few people have commented on.

    It's good to read about the experiences of all when it comes to newer treatment protocols. What I am hoping for is that as the Rituximab research goes forward they can progress to finding a drug that does the trick without so many nasty side-effects. It was very brave of you to take on Rituxan with the knowledge that it may not work for you, that there were nasty side-effects etc. It's unfortunate that the office staff quoted you the wrong price etc. It's unfortunate that these drugs are so stupidly expensive that they are out of reach for most to start with. The next few years are going to be interesting -- from what I have heard Fluge and Mella have got some interesting results that will be revealed after the embargo is lifted. I am feeling very hopeful now after the huge disappointment of XMRV resarch. Fluge and Mella are engendering a new interest in ME and ME research. They are helping to solve the puzzle of ME/CFS. It makes the psychobabblers look silly. In the end, Rituxan may not be the drug used as the treatment of choice as they may come up with a treatment protocol based on less side-effects.

    Jacque, I am so sorry that it didn't work out for you.

    Kina :)
  8. Kati

    Kati Patient in training

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    I do. You have no idea. Sorry.
    Ninan likes this.
  9. Jacque

    Jacque Senior Member

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    Exactly and I didn't feel when I wrote about my "experience" with Rituxan that I was being negative about the treatment...I was simply stating what it did to ME...and why I had to make the conscious decision to discontinue the drug... It was not an easy decision after a year or high hopes.
  10. Jacque

    Jacque Senior Member

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    I love PR Kina..but I have gotten numerous personal messages from peeps over the last few days that have had to sort of clue me in... on a very few here who have a history of this kind of thing. I find that so sad ... each of them said they learned not to post much long ago for fear of bein beat up...by these few. I have to admit I felt a lot better knowing I wan't the only one attacked after posting. But I still think everyone should feel SAFE here... We are all in this together....why post mean spirited replys? I don't get it and am quite frankly OVER it...
    The Spitfire likes this.
  11. Kina

    Kina Moderation Team Lead

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    I am glad you love PR Jacque.

    I don't much like it that members feel they can't post due to feeling beaten up. We try to make the forum as safe as possible and if members feel they are being attacked they should report the post or contact a Moderator. Nobody should have to feel unsafe and it's why the we have Moderators. Most members really don't mean to be 'mean spirited' and it's really hard to know ones intentions by reading the written word alone. There have been times when I have contacted members regarding their posts and it often turns out that other members were misconstruing both their intent and meaning. Anybody who is purposefully being nasty, rude and mean-spirited repeatedly in an identifiable pattern usually gets a few warnings to stop. If they continue, we will consider a ban. This happens very rarely. Of course if we don't know about these things, we can't help to sort them out.

    Again, I am truly sorry that you have such a bad experience and I guess when it comes down to it, it's better to have accounts about the good and the bad because it does help out in the decision making process. If we know why Rixutan doesn't work for a particular subset, that will save wasted money and possible horrendous side-effects in the end.

    Kina.
  12. Jacque

    Jacque Senior Member

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    I really do love this site Kina! I have met some people here that consider amazing kindred spirits...that I hope that they are in my life from here out. Sometimes when the world just seems so misunderstanding of this illness Phoenix Rising gives me a "safe" place to go where everyone relates to what I may be going through. I want to continue to consider this my safe place. Maybe the rule needs to be if you get a bee in your bonnet about something...write a personal message to someone to blast them, rather than to draw unfounded conslusions and post them publically? And then once you get all of the facts straight if you still feel the need to publically slap someone around then, do it I guess. But get all the facts right first! Personally my vote is that if we like minded, suffering people, can't be nice to each other then we simply don't belong on PR. We are a support system for each other through the good, the bad, and the ugly! No room for haters.
  13. Kina

    Kina Moderation Team Lead

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    This thread really shouldn't be about members and moderation.

    You shouldn't really start Conversations to 'blast' people. It's better to simply ask a member what they meant by their words. Most are happy to explain. There hasn't been any 'public slapping around' here. If somebody doesn't like the content, then it doesn't mean they are a 'hater', it means they don't have the same opinion. Making a comment about content doesn't mean a member is being rude. There is a huge difference between commenting on content and making rude comments about another member. It's a rule breach to make rude comments about another member or about the membership in general. Offering an opinion is just that -- members subjectively add meaning to the words. One member's negative comment may be another's positive comment.

    I would like to gently point out that you may be adding meaning that is not there and unless somebody is mounting a personal attack against you, it's not a problem to offer an opinion related to the content of what you have posted. If you believe they have misconstrued your words, it's better to politely point that out so all participating on the thread will see and understand your meaning. If you would like to discuss the general issue of personal attacks, you can start a thread in the Moderation forum.

    Thanks.
  14. Jacque

    Jacque Senior Member

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    Uh no I don't want to start a new post...this is a complete waste of my time. I just wish you could read what others have written to me in regard to this type of behavior by a few.. At first I felt it was a personal attack but now that numerous others have come forward and told me they had the same experience and some left PR for a while due to it, I realize I am not alone. And in regard to perception if you don't think some of those posts were a little "over the top" then ...we will just have to disagree on that. And I am not alone in feeling that they were over the top, cased on all of the PM's I have received.
  15. Jacque

    Jacque Senior Member

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    Lets please just put this to rest, and I will think twice before posting publically here in the future.
  16. Kina

    Kina Moderation Team Lead

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    This is my last comment on this thread. Moderation has changed substantially over the past few years. Things will not change if nobody reports these things and messages in the back-channel between members will not further any changes because it's not being reported to the Moderation team. 'Over the top' is not a rule breach. I suggest you review our rules to see what is meant by a personal attack. However, if you are being upset by members, you should discuss it privately with the Moderators because we can address this. I guess if you think it's a waste of time, no progress will be made.

    Kina.
  17. Esther12

    Esther12 Senior Member

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    I've got to say, I thought that the 'bashing' posts must have been deleted/moderated, because I couldn't see any aggressive ones. If you think of PR as aggressive nowadays, you'd have had a really hard time a few years back! I'd just been saying that I never seem to get in arguments here anymore (maybe I'm the bully?! I've won all the arguments!).
  18. Jacque

    Jacque Senior Member

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    Ester I honestly don't know where they took what I wrote and concluded that I was BLAMING anyone!! Yes there were some miscommunications in the beginning but I don't blame anyone for my experience... I knew it was a crap shoot... I was just simply stating how I arrived at the point I did after a lot of soul searching... and then all the sudden I am going against the better good of our illness, blaming my doctor, etc etc... omg... I finally made the decision to answer a lot of inquiries and didn't realize the backlash involved. My ONLY regret is the money in all honesty....but what's done is done and its time to move on.
  19. Jacque

    Jacque Senior Member

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    So just curious what is your game plan now? Have you tried the anti virals? I tried the Valcyte and wow...felt like I had drank rat poision... but I am wonderin if I should try the Famvir or something not as strong? Just have such challenges due to the HLA genotype, that doesn't allow my bod to detox correctly. Throwin around a lot of ideas rt now... Dr. K is also doin a study on the Morenga Tree and I was kinda hoping to get in on that...I love the idea! I shall not be deterred ;);) He is also starting an HLA study...and hopin that he uncovers something there too to help us with that genotype to be able to tolerate drugs in the Abx family better.... Hugs to you!!
  20. Jacque

    Jacque Senior Member

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    Kina I thought you meant posting publically... I just might take you up on the Moderator board ... I know a lot of people have certainly contacted me about this "issue"... I am new here and don't understand or get all of the politics involved... My Daddy always taught me ... if you can't say something nice - then shut up!! Or if you basically want to say someone is stupid or uniformed or all of the other ridiculous things that were written do it privately! I just went through and read of the posts and all but a 2 or so were supportive. None of them saw the need to make me feel like a stupid uninformed person, or someone undermining the "great good" of this nasty illness, or someone who didn't read their consent forms, and the list goes on of complete innacuracies... Trust me me when I tell you this....After what I have been through the last year...and then finally posting my experience....and then getting the comments that
    I did...you would see it as a personal attack as well... It has been an emotional experience for all of us...and I am sorry I just choose to KEEP IT REAL.

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