XMRV Vip Inconclusive

[Martlet]

Kim ... Whatever you do, don't get worked up about this. I've yet to meet someone who has neither written nor spoken words in haste that they later regret. Or, as an old man once put it, when I was a young politician being slammed for saying too much/too little/the wrong thing on a radio program, the only people who never make mistakes are those who do nothing.

As for the rest of us, forgive me for this but I think we need to keep constantly in mind that members all have M.E./CFS and while one minute we might post something so wonderful that they want to invent a new Nobel Prize for it, the next moment we may write in irrational anger, or might even write complete gibberish.

One of my favorite sayings is: In necessariis unitas - in dubiis libertas - in omnibus caritas or In necessary things, unity - in doubtful things, liberty - in everything, charity.

 

[MEKoan]

Kim, I'm sorry any of this happened, and your grace is admirable.

It is.

I have stumbled in an attempt to do good and it is a terrible feeling.

One of my favorite sayings is: In necessariis unitas - in dubiis libertas - in omnibus caritas or In necessary things, unity - in doubtful things, liberty - in everything, charity.

 

[fresh_eyes]

Everyone here has been not only civil, but polite. You need not be slapping our hands, Chronically Fatigued.

I think maybe they've cut the un-civil bits - parts of this conversation seem to be missing.

 

[fresh_eyes]

...i still cant understand how it is possible to contaminate the blinded (? ) cfs samples but not the controls...

My understanding is that the study was not blinded.

 

[cold_taste_of_tears]

'Chronically Fatigued', aren't you the person who reported me and insulted me? Yet you lecture others not to be like this?

Nice name there too, very appropriate for ME/CFS and not at all goading to people bed ridden/housebound with destroyed lives either.

 

[lebowski]

"If you have any other issues to discuss with me, I suggest you take them to private message. This is not the place to discuss personal issues with other members/moderators"

i hope this dont make him not to write to site anymore ..

i wish this healty disscussion could be made here too ..

anyway what i learned from this is , mods cant be critized in this site even if there is no rude tone in it ..

 

[anne]

I fail to see how what I said deserved a public wrist slap. I have seen far less civil things go by on this board. I was just trying to defend people from someone coming on and calling them names, and I tried to do that in a reasonable manner. Perhaps I failed, but I did not deserve getting "mod edit" slapped on my post.

 

[Jody]

I haven't been involved in this thread, just getting caught up on it now.

What I think I'm seeing is, a conversation that tipped into some unpleasantness and some misunderstandings along the way. Most of them got righted again by the members themselves. Some did not.

Chronically Fatigued is here volunteering his time as a moderator to help keep things on an even keel. He's here because Cort has asked him to do it.

This thread has really gotten off track from the original subject.

I agree with Chronically Fatigued, if people have issues they want to talk about that are not related to the topic of this thread, they can do so by private message with Chronically Fatigued as moderator or with one of the administrators.

 

[Cort]

I think we're missing some important context. Chronically fatigued's post were directed to one person on this thread. It was directed to posts like this

I'm sure you feel very big and strong behind a keyboard.

Would you be so big and strong to my face?

which, of course, are not in the spirit of these forums! Everyone else (understandably) got pulled in when those threads were yanked which made it difficult to understand Chronically Fatigued's position.

This forum was built on the promise of very low moderation and except for this small exchange and one or two other incidents everyone on it has shown an admirable ability - through 1000's and 1,000's of position - to navigate between very tricky and often passionate issues - which is very good because neither I nor the few moderators on the forums enjoy inserting ourselves into hostile situations. In fact we, like most of the people on the forum, we rather dread it. Doing so is necessary, however, if things get too inflammatory. Thankfully for our own peace of mind this has been a very rare occurrence.

This is an almost rule free Forum; I can only think of two really - don't make it a Forum for selling products and treat everyone with respect.

 

[myco]

I honestly think everyone is seriously overacting on this site. The findings are so new, not validated in any way, and there is NO TREATMENT OR CURE for this anyway! Why are half of you so stressed out? It's certainly not helping your illness.

I would think CFS patients would be used to this by now with all the different proposed causes (viruses and bacterial infections). I would be patient, wait it out and see where this is going. If anywhere.

 

[fresh_eyes]

...there is NO TREATMENT OR CURE for this anyway!

No need to shout...

 

[hensue]

Ok here goes

First of all to all concerned I apologized if I offended anyone. I am a freakin
nervous wreck.
I have never been diagnosed with Chronic Fatigue. I know I have it, just severe fibromyalgia.

Got xmrv results and yes I have done all the polls.

Tested positive for both. What now?

 

[fresh_eyes]

Hensue, wow! You finally got your results, thank GOODNESS! How do you feel about them?

 

[hensue]

Oh yeh I would never talk to a moderator like that

Just wanted you to know I would not do that to anyone. Like everyone said we do not need any more crap in our life. I have apologized to Kim, maybe I did over react. When they actually are testing your blood. It made me extremely nervous.

 

[hensue]

How do I feel? like someone punched me in stomache

My doctor told me and said he did not know what to do. Since he knew nothing about xmrv.

 

[Lily]

"What now"....

There will be different opinions on this hensue, but I think the prudent thing is more waiting......IMO, there are still many unknowns - like what does having XMRV really mean - we still need to know whether XMRV is "the puppetmaster", and if so, what treatment is most effective.

Thank you for sharing your results and I wish I had some words to help you. I think if I were in your shoes I would feel a little hopeful.

 

[spit]

Glad you got some results!

Sadly, there's not a lot to be able to do with this knowledge right now, but more knowledge is always a good thing in the long run. Things will get figured out over time, but now you know at least one direction to be looking in for answers as they emerge.

 

[George]

Hang in there Hensue

You are one of our fearless ( grin) leaders. You realize that you are history making? One of the first to get the test results. Your bravery is the beginning of helping millions of people all over the world. You've started on the journey ahead of the pack. You are truly amazing and I salute you.

It will be a while before the trials begin and I'm sure with your results you will be the first to be asked to participate. Take some time out now just to breath and love yourself as much as we love you.

 

[hensue]

Dang George you made me cry!

All of you are such good people and bring such kind words. I have to be at the beginning. I will do anything for my children and Grandchildren and if I have passed it down to them. I will do whatever it takes to get them well.
You have always heard about a Mom and her children. If they have this virus?
I will do whatever is necessary to get them well. Also a vaccine for this God awful stuff.

Thank you all of you are very kind. Sick yourself so of course you are the only ones that would understand.

 

[fresh_eyes]

I will do anything for my children and Grandchildren and if I have passed it down to them. I will do whatever it takes to get them well...

Of course you will. And there's every reason for hope that a treatment is in the near future. Thanks for putting yourself out there on the forum and sharing your experience, hensue.