My Antiretroviral Trial

[heapsreal]

thats excellent sue.

cheers!!!

 

[leela]

The problem is that you aren't willing to hear points of view that contradict your beliefs.

To be honest, Fejal, this statement applies equally to your posts, with the addition of contentious tone. I would appreciate it if we
could please swing this thread back to a more respectful discourse.

 

[Martlet]

Moderator: I agree with Leela and others. A contentious note is creeping (actually, more than creeping) into this thread and I am asking that it gets back on track.

 

[Martlet]

well...all i know is....i am on ARV's and slowly (very very very slowly) improving. i no longer consider my life a living hell.

I'm so pleased for you, Daffodil!

 

[Martlet]

I was exposed to XMRV via needlestick, know the exact date of the exposure and have positive bloodwork for low levels of XMRV to prove it. A confirmatory XMRV positive from the patient whose blood I was exposed to may or may not be forthcoming but I know exactly when symptoms hit. I also know the exact date of my mononucleosis exposure and an approximate date for when I was exposed to the bartinella spp (awaiting confirmatory bloodwork).

How do you know you were exposed to XMRV by needlestick? Especially without knowing if the patient whose blood you say you were exposed to has not tested positive. It seems to be a bit of a leap. I too know exactly when I fell ill. I know where I was, who I was with, why I was there and what I was doing. I know exactly how long the worst of the "flu" lasted. I know exactly when I saw my first doctor with symptoms, which tests were done, exactly what they say and even have the psychiatric report that gaves me a clean bill of mental health. I know a lot about those early days, but there is no way I could say that I caught what ails me through a needle stick, through the transfusion I had ten years earlier, through my relations with my husband, from the friend who was ill before me or because a child from my daughter's school coughed on me. I have to say that you are stretching my credulity here, in your attempts to condemn those who are seeking the best course of action for themselves. Would it be too much to ask to suggest that instead of being so scathing, you actually congratulated Daffodil on the progress she appears to be making?

 

[Fejal]

How do you know you were exposed to XMRV by needlestick? Especially without knowing if the patient whose blood you say you were exposed to has not tested positive. It seems to be a bit of a leap. I too know exactly when I fell ill. I know where I was, who I was with, why I was there and what I was doing. I know exactly how long the worst of the "flu" lasted. I know exactly when I saw my first doctor with symptoms, which tests were done, exactly what they say and even have the psychiatric report that gaves me a clean bill of mental health. I know a lot about those early days, but there is no way I could say that I caught what ails me through a needle stick, through the transfusion I had ten years earlier, through my relations with my husband, from the friend who was ill before me or because a child from my daughter's school coughed on me. I have to say that you are stretching my credulity here, in your attempts to condemn those who are seeking the best course of action for themselves. Would it be too much to ask to suggest that instead of being so scathing, you actually congratulated Daffodil on the progress she appears to be making?

Placebo effect is 30% when she beats that and is cured I’ll start clapping.

We are very careful in my line of work. The only way I could have been exposed to XMRV was that needlestick. If the patient is tested then it may be confirmed. Until then the onset supports the deduction.

 

[Daffodil]

heap, mart...thank you

 

[leela]

very good news, daff...we trust your progress will continue, and quicken!

 

[Martlet]

Placebo effect is 30% when she beats that and is cured I'll start clapping.

Moderator: It is not for you or for me - or any of us - to judge a given treatment, especially when that treatment has the cooperation of a physician and, since you have seen fit to ignore my private message to you, I will now give you a public warning that you are in breach of the rules in belittling the treatment that Daffodil (and others) have embarked upon. You are not permitted to ignore the instruction of a moderator so I will repeat it here. Moderate your tone and show some respect for valued members in good standing or you will incur an automatic suspension.

 

[Martlet]

very good news, daff...we trust your progress will continue, and quicken!

I echo that sentiment.

 

[Fejal]

Moderator: It is not for you or for me - or any of us - to judge a given treatment, especially when that treatment has the cooperation of a physician and, since you have seen fit to ignore my private message to you, I will now give you a public warning that you are in breach of the rules in belittling the treatment that Daffodil (and others) have embarked upon. You are not permitted to ignore the instruction of a moderator so I will repeat it here. Moderate your tone and show some respect for valued members in good standing or you will incur an automatic suspension.

So what you are saying is that you don't want members to point out the negatives of a treatment?

Informed consent of patients dictates that they know both the risks and potential benefits of a treatment.

If I were consenting to an expensive, experimental treatment I would want to know the true odds so that I wouldn't get my hopes up if it went badly.

And do I need to remind people of the long list of ineffective treatments that MDs have promoted for CFS over the years? graded exercise therapy, cognitive behavioral therapy, psychotherapy, vitamins, intestinal permeability treatments, hyperbaric oxygen chambers, sleep medicines, etc.

I do hope that everyone is successful but likewise, every treatment isn't going to work so people need to be realistic when dealing with treatment failures so they don't become distraught.

It is unethical for a moderator to censor a member for simply offering a differing point of view that is not misleading.

I apologize for the one sarcastic comment which was accurate but bluntly written. I wasn't aware of how intollerant the rules are regarding this.

 

[mojoey]

You are ignoring the other point of view and injecting offensive, unsubstantiated comments like "placebo is 30%" as your own point of view.

The others on this thread are voicing facts and opinions based on scientific rationale. You are imposing disrespectful opinion with little if any concrete backing that ARE indeed misleading. I have disagreed with many on this forum before, and I have never been suspended.

And you have still yet to tell us what type of test from which lab you tested positive for XMRV. For all we know, you're just a troll. At this point, even if you did tell us I wouldn't believe you unless I saw the lab results myself, because the rest of your statements have been so unsubstantiated.

 

[Mala]

Yo, anybody, can I take Raltegravir by itself or will this cause great harm???

Jimbob; I replied on that issue in your own thread Starting Raltegravir. http://www.forums.aboutmecfs.org/showthread.php?5250-Starting-Raltegravir/page12

 

[Martlet]

So what you are saying is that you don't want members to point out the negatives of a treatment?

We don't want members to use rude, sarcastic comments and put-downs in order to make their point. You can disagree with the use of ARVs as much as you like if you can do it without being rude.

It is unethical for a moderator to censor a member for simply offering a differing point of view that is not misleading.

Your POV is not censored. Your tone is.

I apologize for the one sarcastic comment which was accurate but bluntly written. I wasn't aware of how intollerant the rules are regarding this.

I have been back through all your posts and am finding far more than "one sarcastic comment." I am finding a total disregard for the feelings of other members of this board and yes, we are rather intolerant of that.

 

[leela]

So what you are saying is that you don't want members to point out the negatives of a treatment?

No, that is not what at all what the moderator is saying. The moderator is saying that you are expressing your opinions of the negatives of treatment in a belittling, critical way.
Many people here express and invite opposing points of view but find a way to do it with respect and care. As I pointed out in the Forum Rules post, there are specific parameters about this that all users agree to.

Informed consent of patients dictates that they know both the risks and potential benefits of a treatment.

But does not require them to listen to abusive language, nor to acquire that informed consent from you; it is not your job to inform them, and are you are not the authority they are required to turn to.

I

f I were consenting to an expensive, experimental treatment I would want to know the true odds so that I wouldn't get my hopes up if it went badly.

Then you may seek out information regarding those odds without contentious behaviour here.

I do hope that everyone is successful but likewise, every treatment isn't going to work so people need to be realistic when dealing with treatment failures so they don't become distraught.

It is not your place to decide what is realistic for others. You may gently suggest options but please refrain from deriding options that you do not agree with.

It is unethical for a moderator to censor a member for simply offering a differing point of view that is not misleading.

The moderator is absolutely not censoring you for "simply offering a differing point of view that is not misleading". This is an outright misquote of the moderator's instruction. It is essential that you understand that it is the manner in which you state your differing point of view, and the manner in which you respond to the differing views of others that you are being warned about.

In many threads on this forum, people discuss their opposing points of view in the spirit of informed discourse, lighthearted banter, or investigative curiosity. The moderator is asking you quite plainly to modify your tone, not your content, unless the content is expressly derogatory towards a person or protocol. Perhaps your intent is not to be rude and disrespectful, but take these repeated requests, from several different corners, as an indication that they are absolutely coming off that way.

I apologize for the one sarcastic comment which was accurate but bluntly written. I wasn't aware of how intollerant the rules are regarding this.

There are multiple examples in your posts of sarcasm, belittling, and disrepect of other peoples' protocols--not just the one--though we appreciate your acknowledgement and apology. The rules are clear; please read them again.
The nature of rules is to define specific parameters to which a group of people agree. The forum rules, to which you have implicitly agreed by participation here, are specific about the temper of the language and intent of the posts. If you are unable to modify your style, or do not wish to, you may chose to post in a platform that supports that type of aggression. Everyone here is open to hearing alternate points of view, but not at all open to being abused in the process. It is clear you are unaware of the abusive tone of your posts, so you have been offered the choice of toning it down or finding somewhere else to express yourself in that manner.

 

[Charles555nc]

Any update?

Just so you guys know, there are people who get pleasure from upsetting people-they are called trolls. I also wouldnt be surprised if health insurance companies hired people to post in forums to discredit arv treatment, to delay them paying for as long as possible.

So ignore the known troll, who is just trying to upset you.

Back on topic, what is the newest update? I am eager to hear!

 

[energyoverload]

hey guys,

really sorry i haven't updated for so long. i wanted to give it a long time to see how things panned out. Unfortunately I am still incredibly sickl. I am still on Tenofovir 300mg/day and AZT 300mg BID. I am not sure that these antiretrovirals will be very efficacious in treating this ghastly disease even in the long run? Anyway fortunately some people have had good improvement from these drugs. As with all treatments results seem to vary greatly.

Jake

 

[illsince1977]

What happened to the Indinavir that you started on? Your first post said your regimen was Indinavir and AZT, not Tenofovir and AZT. Can you please clarify?

 

[energyoverload]

yea basically the indinavir really didn't seem to be doing anything after being on it about 2 months - maybe this wasn't long enough - i was also getting a worsening of heart palpatations and my triglycerides went sky high so i decided to switch and to this day just hope the TDF and AZT are doing something good - despite my body not feeling it...!!

 

[Jenny]

Hi Jake

I'm very sorry to hear that you haven't improved - I was wondering how you were getting on.

Thanks very much for being a guinea pig and posting about your experiences.

Jenny