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XMRV - Coming to terms with a new reality

Finch

Down With the Sickness
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I haven't been involved in a whole lot of discussion forums, but this one has, by far, been the most friendly and the most tolerant of the viewpoints of others. For this, I am very thankfull to all who are hanging out here with me. This is a unique and very caring, kind place, which is something we all need more of!
 

Martlet

Senior Member
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1,837
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6
Location
Near St Louis, MO
I have never posted in a CFS forum before. At least, if I have, I don't remember doing it. :confused: But like others, I love the atmosphere here. The posts are thoughtful, level of discussion intelligent, and in spite of immense obstacles, people seem able to remain upbeat even in the face of a crash. I also readily admit that I enjoy that there are people here able to explain some of these findings.

Thanks, Cort but also thanks to everyone who posts! It's a great community.
 

hvs

Senior Member
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292
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0
Reeves digging in

Have a little bit of insider information--pretty pathetic as far insider information goes...won't make me millions on the stock market, alas--that Reeves WILL be trying to beat back this discovery. It's one point of unpublished data, but a telling one I think.

Looks like he's doubling down on CFS as psychosomatic.

Everything he does is predicated on maintaining his position in the bureaucracy (and doing CYA for the initial Lake Tahoe investigation and its failure to identify a very virulent root of a debilitating disease). I don't know if this move will pay off for him or not, but he appears to be doing it.

WPI take note: Reeves is showing his hand--he will try to debunk the new study.
 

MEG

Senior Member
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242
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28
Location
Asheville, NC
Media Thread

I know this is redundant info from me, but I feel strongly that we all need to do what we can to get the word out to the media so that this new XMRV discovery get's noticed.

I have called our local newspaper (Asheville Citizen-Times) and given them the necessary Web links for info on XMRV, so they could write an article. I sited Whittemore Peterson of course, along with many others. They were particularly interested that the NY Times, LA Times, NPR, and Science magazine etc had already written articles. Dropping those names seemed to help.

I just now emailed the American Red Cross. I followed up with contacting, by phone, our regional Red Cross office, offering requested info and asking appropriate questions about keeping our blood supply safe from a new bloodborne pathogen.

The Asheville regional Red Cross initially said, "we test our blood for viruses." I then explained that there was no commercial test available for XMRV that was reliable. They then continued to ask me more questions, which I answered by siting and giving them Internet URL's to visit for accurate information.

I dropped off, earlier today, 25 pages of information about XMRV (XAND) at our local public health offices and my Primary MD's clinic. (County wide)

Cort, I am wondering if we can have an "Action Suggestions" thread here, as others might have many more ideas for spreading the word other than what I have done today. I feel that the more stones we overturn, the more action will have to be taken.

Just an idea from a "brain fogged" brain...which happened to work well today!!!
 

Kati

Patient in training
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Cort, I am wondering if we can have an "Action Suggestions" thread here, as others might have many more ideas for spreading the word other than what I have done today. I feel that the more stones we overturn, the more action will have to be taken.

Just an idea from a "brain fogged" brain...which happened to work well today!!!
Marian, I think it's a great idea. We need to hit as many people as possible, and also inform people that the blood they or their loved ones may recieve may not be safe- this is not to scare anybody, but it's true! It will force the governments, the purse holders to make decisions about where the money will go. We need more money for research, we need diagnosis treatments and competent health care providers.
 
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185
thank you all

I haven't been involved in a whole lot of discussion forums, but this one has, by far, been the most friendly and the most tolerant of the viewpoints of others. For this, I am very thankfull to all who are hanging out here with me. This is a unique and very caring, kind place, which is something we all need more of!
Martlet said:
I have never posted in a CFS forum before. At least, if I have, I don't remember doing it. But like others, I love the atmosphere here. The posts are thoughtful, level of discussion intelligent, and in spite of immense obstacles, people seem able to remain upbeat even in the face of a crash. I also readily admit that I enjoy that there are people here able to explain some of these findings.

Thanks, Cort but also thanks to everyone who posts! It's a great community.
I share both these sentiments - thanks both for expressing them so eloquently. I've been sick for 8 years. For years was too sick to even find much info (although have been on computers since the XT and the net since 92 [was it?]). Blogs and forums are newish to me - the few I found didn't work for me. Finally was getting the pro-health and cort's phoenix rising newsletters. Maybe it's a matter of timing - this news, a wee bit of energy to be able to look around a bit, and the people who contribute here - in any case, just LOVE what I read here. When I read Koan's response to me a few posts above, I cried (in a good way) at someone really getting what I'm talking about.

Thank you all - you've made my week, and probably more. It's been wonderful to share the xmrv news with you all (although a bit of a lesson in seeing how good my pacing is - doing little bits at a time so not overwhelmingly exhausting or so that I didn't become obsessed in specualtion/permutations..... Glad to say that while I'm a bit knocked out and there are a few more dust-bunnies around, I'm doing fairly well)
 
A

anne

Guest
He's not going to be able to replicate it because his sample doesn't actually have CFS!
 
A

anne

Guest
Maybe we should have a topic just for news coverage.

And Dr. Reeves' implied criticism of Science Was that really a good idea?
 
A

Aftermath

Guest
Reeves "said he was surprised that a prestigious journal like Science had published it, because the researchers did not state the ages or sex of the patients and controls, or describe the duration of the illness or how it came on.

“If I don’t know the nature of the cases and controls, I can’t interpret the findings,” Dr. Reeves said.

“We and others are looking at our own specimens and trying to confirm it,” he said, adding, “If we validate it, great. My expectation is that we will not.”
________________

Sure sounds like Reeves is hot! lolol He has to KNOW that the reason more data was not shared is because Mikovits et al do NOT want him to HAVE this information. Cracked me up. No way he can spin what he doesn't know. And if its solid, who needs him replicating anything anyway? So verrry many people are just fine with keeping a lid on this. I am one of them. Makes me feel confident, not insecure. Go WPI and team!

"Dr. Mikovits said she expected a test to become available “within weeks.”

Today, I called the only Infectious Disease Physicians in my part of the state and alerted them to Mikovits find. They were not in any way condescending, patronizing, or skeptical; they were interested. I gave them bare bones info so they can find it all on the net.
( I am prepping them for the idea of testing when the test becomes available. I am broke but I WILL get there and I am prepared to beg, borrow, or steal to get this test done. ) Take that, Reeves. I never did like you, and I like you less today than yesterday, lol.
 
Messages
159
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56
Location
Riverside, CA, USA
excellent reminder

"THE MASTERY OF LIFE IS KNOWING WHEN TO STOP."

I think that's an Alan Watts quote. I am making it one of my favorite mantras for the time being.

Anticipatory anxiety can be VERY draining, and is not very constructive. In fact it is very destructive for me when I jump into it and let it take over my thoughts. I can't afford that right now (or ever!), so I'm going to limit how much time I spend online.

A couple days ago, Jody said something wonderful about how: "we can choose WHO we give air time to." On that same note we can also choose WHAT we give air time to.

In the mean time remembering to breathe is a high priority.
thanks, dreambirdie! you are so right...as are the others. i literally forget to breathe! and i haven't even thot of the negatives to this. i needed a reality check. and a reminder of the "rest disciplines" i have not been following!
 
Messages
159
Likes
56
Location
Riverside, CA, USA
great work!

I know this is redundant info from me, but I feel strongly that we all need to do what we can to get the word out to the media so that this new XMRV discovery get's noticed.

I have called our local newspaper (Asheville Citizen-Times) and given them the necessary Web links for info on XMRV, so they could write an article. I sited Whittemore Peterson of course, along with many others. They were particularly interested that the NY Times, LA Times, NPR, and Science magazine etc had already written articles. Dropping those names seemed to help.

I just now emailed the American Red Cross. I followed up with contacting, by phone, our regional Red Cross office, offering requested info and asking appropriate questions about keeping our blood supply safe from a new bloodborne pathogen.

The Asheville regional Red Cross initially said, "we test our blood for viruses." I then explained that there was no commercial test available for XMRV that was reliable. They then continued to ask me more questions, which I answered by siting and giving them Internet URL's to visit for accurate information.

I dropped off, earlier today, 25 pages of information about XMRV (XAND) at our local public health offices and my Primary MD's clinic. (County wide)

Cort, I am wondering if we can have an "Action Suggestions" thread here, as others might have many more ideas for spreading the word other than what I have done today. I feel that the more stones we overturn, the more action will have to be taken.

Just an idea from a "brain fogged" brain...which happened to work well today!!!
i'm going to take you ideas and run...ok...meander with them! thanks, marian!
 
Messages
159
Likes
56
Location
Riverside, CA, USA
privileged

Quarrels have broken out all over the www.

Patients struggling with the same, or very similar, symptoms are choosing sides and digging in their heels.

Members of support lists are calling members of other forums foolish.

Researchers are slamming other researchers and patients are taking swipes at other patients.

Someone remarked to me in an email this morning that Cort's forum had become the best on the net. I think that's absolutely true.

This is a place where we can believe or suspend belief and be understood. This is a place where the ego is not overtaking rational thought. This is a place where cautious optimism is expressed freely and, if that's not what you feel, that's ok too.

There is always a slump after great excitement. Anyone who has ever been on a honeymoon can attest to that.

We will all ride this out with common sense guiding us.

Thanks for being the community you are.
Peace out,
Koan
didn't realize how privileged i've been. Cort's is the only forum i've ever read or signed up for. i've been thankful... now extremely so! so glad you pointed this out, Koan.
 

Victoria

Senior Member
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329
Location
Melbourne, Australia
Later, my partner queried my need to bring ME/CFS up in conversation - not only at dinner, but in many situations.
I guess you bring ME/CFS up in conversation like many people with ICI (invisible chronic illness) - you just want to be visible, heard & understood. I do (or did) it all the time because I found that people didn't understand why I kept saying "I'm sorry, but......." People need to know where you're coming from. Otherwise they form incorrect views of you as a person.

People have trouble seeing beneath & beyond the facade that is visible. They only see you in black & white. Like different skin colours, people only see white skin, black skin, brown skin, pink skin etc

At the beginning, know I made a point of telling everyone about it.
So do many of us. We're just so happy to find a reason for our symptoms, something we can explain & give a name. It's like finding the centre of a maze. Who wouldn't want to share the final end of the search/path. In life, everyone wants to celebrate success & share their success with the whole world.

It's just that our success (in finding the name of our health problem) is not the same sort of success that most people associate (with sharing).

Happy news to one person may be trivial or meaningless to another person. We all have a different perspective on life. We are all unique. That what makes us human.

At times I felt it necessary for the other person to understand my limitations so that I could work successfully with them - eg bank manager.
And our limitations need to be communicated.

I now have to ask people (including my Boss) to speak more slowly or repeat the instruction (so I can process the words & their meaning). And a couple of weeks ago, I had to admit to my Boss that I couldn't do the simple task he had asked of me.

I can't sit, walk or stand for any great length of time. A (supposed) good friend slipped away & out of my life, because I could no longer go for walks in the country & she could not understand my foot/ankle pain (when I had no injury, bandage or plaster cast to exhibit).

If you don't communicate your limitations, then you end up with a difficult (or painful) situation which can lead to consequences which are difficult to surmount, or even destructive to a relationship (which could have been avoided with some simple, honest revelations about your physical or mental well-being or lack thereof).

THink part too was that I was sort of apologizing for my lack of______ (whatever I was lacking at that moment - thought, movement, speech, ability to read, ability to listen, emotional control......).
Why should you have to apologise, for the fact that you have an invisible (or not so invisible) condition. Do deaf people apologise for being deaf? Does a person with Crohn's or Diabetes have to apologise for their specific dietary needs?

No, it's accepted as just "being the way it is."

I think you have every right to be heard & every right to be respected for what you say or do.

What has happened to good old values of respect & understanding?


Sometimes just so happy to be out of the house and talking with someone my "appropriateness filter" doesn't work.
Can I console you with the fact that my "appropriateness" filter never worked.


Think my partner has a point that often people just don't care
No, I guess they don't - every one is so busy being busy, that the busi-ness becomes their whole world, they can't see beyond that world.

So I guess one of my necessary adjustments is learning to be more guarded in who I talk to and what I say - to try to think before I open my mouth.
It's an adjustment which is very hard to make. I wish you success in trying.

(Sorry this post is not on the subject of discussion, but I really wanted to say my piece here).

Victoria
 

m1she11e

Senior Member
Messages
333
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118
Location
Florida
I am just not feeling the need to tell anyone about this new finding. I am also not excited about it being a cure. I am glad however, that it is bringing attention to CFS.

As far as validation, I dont really want to draw attention to the fact that now CFS might be caused by a mouse virus. I can just hear my friends/family (who dont doubt that I am sick) saying "I thought it was that HHV6 virus." or "I thought it was that tick virus." "So you are saying it is a mouse virus now?" :confused:

I still feel it is a break down in the immune system. Maybe this new virus is the cause, and it would be great to know if it was. It would be a miracle if we could all get treatment and get well. We certainly deserve it.

Maybe after chasing so many virus' and pathogens I am just a little skeptical.
Im sure we are loaded with all kinds of bugs. This new one makes us look contagious to top it all off.

Like I said, I am glad CFS is getting attention but I hope it turns out to be "good attention."
 
K

_Kim_

Guest
Vaccination connection?

I'm pondering something I read in an article Summer had posted: Is Autism Associated with A Viral Infection?

And then Dr. Mikovits dropped a bombshell that is sure to spark controversy.

"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."


Hmmm....in order to enroll at the University last year, I was required to be re-vaccinated with MMR and also to get the Hep B vaccinations. I wonder if this was a factor in my relapse.
 

m1she11e

Senior Member
Messages
333
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118
Location
Florida
I hear you Mark

I was trying not to sound negative when so many are so excited.

Of course I understand everyone just wants virusX = CFS so there has to be a Y to fix it. Im just waiting for the Y before I go sharing! Been waiting for that Y for a long time now!!

Years back when EBV was the big hitter, I had a boyfriend whose sister found several articles that said EBV could be contagious. He was really concerned!
I think some believe Lyme is contagious as well. This is really cutting into my odds. It is hard enough to find a man that can handle a sick girl, let alone a sick contagious one! :rolleyes:
 

Kati

Patient in training
Messages
5,497
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19,633
I'm pondering something I read in an article Summer had posted: Is Autism Associated with A Viral Infection?

And then Dr. Mikovits dropped a bombshell that is sure to spark controversy.

"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."


Hmmm....in order to enroll at the University last year, I was required to be re-vaccinated with MMR and also to get the Hep B vaccinations. I wonder if this was a factor in my relapse.
Kim, when I applied for Dr Byron Hyde's clinic, 3/4 of the paperwork was in relation to the vaccination I've had in the last month, 3 months, 2 years prior to getting sick- It makes a lot of sense but that's not how I got sick myself. (EBV) There might be some strong links there.