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For Dr. P. regarding XMRV
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WomanInBath posted:
Hi Dr. Mark,
I have been reading this 3 part question on the XMRV as I just found this supposed connection on another piece of research and jumped to this board to discuss it.
I find (as usual) someone else has already posed the discussion. Blessedly!!!
What I am not finding in all of these pages of questions and analogies is any ANSWERS. I know that it takes time for more research to be done and the questions are not always as straight forward as we (us Lay People.) may want them to be.
I read that some testing was going to occur with the treatments for HIV.

Since the XMRV is the same family virus as HIV wouldn't it be logical to TRY the same treatments and see if there is any improvement with FM, CFS sufferers?

What would be your next step in testing treatments based on the this common denominator of XMRV?

I can understand that you would not want to give us false hope--There are so many $$$$$ making, carpet baggers out there!!!--
What do YOU see as the next step, regardless as to which step--the chicken or the egg-- was the first step?

I am thoroughly enjoying reading over all of your discussion topics so I hope you don't take this the wrong way but I just dont have the time, brain power, energy, or ability to read and process metaphors and analogies! Please understand, I'm not being critical, but if you could be a little more straight shooting, it would make it so much easier for me to process.
Thank you so much for taking the time to be here with us, you are very appreciated by sooooo many.
Truly, Meg.
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Mark Pellegrino, MD responded:
Hi Meg,

Here's the straight scoop, metaphor-free and analogy-free! In the past, I was excited whenever any new research came out suggesting a relationship between some infectious agent and FM/CFS. But the initial enthusiasm (and press) always seemed to fizzle out until I forgot what all the excitement was about in the first place.

One sensational study does not make a new cause or treatment choice. With the XMRV, I'm honestly not doing anything different. Additional research would need to confirm the initial "excitement" (past experiences have been disappointing). In the meantime, I know of no treatment for this virus in the setting of CFS. I know of general treatments to help boost the immune system which I often try for FM/CFS, but they are not specific for XMRV. I would love the opportunity to tell patients someday that XMRV has been found to cause their FM and here's a pill to get rid of the virus and the FM. I would be a hero!

But....not yet.

I love your enthusiam, Meg. Keep hoping, as I am. I hope I didn't burst your bubble (oops, I did a metaphor!!)

Dr. P
 
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Grampa_Bear replied to Mark Pellegrino, MD's response:
Cool Beaners...A Doc who speaks regular, everyday English!! What a concept! :smile:

I'm pretty sure that the single metaphor won't get you sent to the back of the class...heheheheheh

Jim
 
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WomanInBath replied to Mark Pellegrino, MD's response:
Heh-Heh,
That was a pretty good one, as bad ones go...........
Sometimes I just so sad and frustrated that it just FEELS like I'm getting the run-around and I become defensive and short. So many dissappointments and Snake Oil Salesmen.
Added to the fact that I will never again have a man in my life at a (fairly) young age. No energy to date or keep up with men my age.... much less, take care of them....The depression of being alone for the rest of my life is just too overwhelming ( I'm 44 with no children ) and I PRAY SO HARD FOR A TREATMENT!!!
I fake it until I make it almost every day, put on my pretend, positive face and fool the world but when I came home to my empty house again tonight, I just had to have mt own pity party,
Please excuse me,
Love to All, Meg,
 
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Dollbug replied to WomanInBath's response:
Hello Meg.....MiMi in NC.....I am so sad that you have met the wrath of the dragon....one would think that with the medical technology that is available these days something could be done.....but it seems like the dragon has stumped everyone....and it is so sad that even though we do not look sick, we feel so bad.....I do wish I had answers for you....because I can not even imagine being your age or younger and having this evil thing to deal with....

I was past 50 years when I met the dragon.....and I know how hard all of this has been on me....but I was also lucky enough to have raised my children....I was so looking forward to being able to travel with my husband though and doing things that we had not been able to do....and now I can not even get in a car for a few hours and drive to the beach to enjoy it....

I do not know what you have tried.....but I have learned how to control my pain by taking vitamins and supplements....but the chronic fatigue is as bad as the pain....and I have not found anything to help me with that...but I continue to search for something that might help this also....

It seems like it is a never ending story with us FMers though...but I certainly hope that the medical researchers will find something that will help us all.......

I hope you will continue though to seek whatever you think might will help you in your journey each and every day.....we FMers must keep on keeping on....until we slay the dragon...once and for all....we never know what may or may not help us....until we have tried it....

Take care and good luck...


MiMi


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