Studying XMRV in Chronic Fatigue Syndrome, the Population & the Blood Supply

I would like to see 4. Developing effective treatments on that list.

If HHS uses the CDC to conduct or oversee the research, then my hopes are not very high for any productive outcome.

I agree with post #2. The CDC has a history of bias and has already stated one with regard to an association with XMRV and CFS. Their selection criteria for CFS patients in their studies have heterogenous groups and do not to make for a productive outcome.

If conducted, I am more interested to see what subsequent studies will say from the WPI, Cleveland Clinic, or NIH.

in the following article. which is from a blog, it says that the team that would invastigate this retrovirus is not the team that invastigated ME/CFS usually, but a division of HIV/AIDS prevention. So, it gives a little hope that the studies would be as real as possible and that the researchers would do their work in order to help us (if the XMRV really contributes to ME/CFS or even linked to it) and not to shut us down from any good news.

I agree with commentors 2 and 3. This needs to be done by an unbiased group. If the monitor doesn’t believe in fibro, what is the use?

The very likely threat to the blood supply will motivate researchers to take XMRV seriously, despite the CDC’s historic bias. Thanks to Dr. Mikovitz and the WPI, attention is now focused on ME/CFS as never before, making it harder than ever for Dr. Reeves and his ilk to sweep millions of us sufferers under the proverbial rug. We now have the power of the internet behind us-and we are using it to inform the public, stay informed r/e meaningful research, and advance real science. The game is changing!

Can you state what you think is the “CDC’s take” is so that I can understand the question that you pose in your article, please? I went to the CDC website and cannot isolate what you mean by their perspective since it’s so vast. Thank you.

The news about XMRV has the potential to turn the tide of opinion & action for CFS. Before we read too much into it though, we must wait to see the impact of this connection to the contagion issue and much more. There lies the rub because that means depending on people and institutions, including some of the ones who/which have let us down many times before. (Did I say CDC?) Therefore, we have no choice but to continue to apply the “heat” and pressure of opinion and controversy resolution to this. I pray that we not lose faith that our lives and voices do make a difference. And I pray that we all get the answers that we seek.

I am so hopeful that they are going to research the blood supply theory. I had to get blood transfusions 8 years ago, when my hyesterectomy sugery went wrong. I had 7 pints of blood, and plasma over a 3 day period. After that surgey and the long recovery period I have never felt right, always tired, hurting and foggy, confused feeling..
I was FINALLY dx’d with Fibromyalgia and CFS about 5 years ago.I am currently taking Savella, and it seems to be helping. My pain levels have dropped from a usual 7-8, down to about a constant 3. I can live with that.
Its been a long hard road, especially when people think you look fine, but you feel like you are on auto-pilot all the time, becuase of the brain fog.

I hope this research will finally shed some light on the fact that we are all NOT fakers!
Thank you for providing this article for us to read!

Several things need to happen for any study to be meaningful.
1. Large (thousands) population sample with test and control groups
2. Double blind studies
3. Not funded by a pharmaceutical or medical device company
4. Independent review of the research protocol so it isn’t written so narrowly or broadly to make the results meaningless.
5. It would be even better if there were two independent studies conducted at the same time in different locations by different researchers. One can dream.
6. Researchers who don’t stand to gain financially from the results…goes back to no funding by drug companies, etc. One can walk around with rose colored glasses.

I worked at NIH for awhile. You cannot believe 100% of what come out of there either.

I’m not terribly hopeful. They will find ways to screen it out of the blood supply if they think it is a problem. As for treatment…I think they will first try to get old drugs approved for a new use so they can charge more for them. This is already happening.

I won’t rush to try the latest thing they claim will work.

@sickofbeingsick

re the CDC (for more info about this, a good source is Hillary Johnson – she has a website and a book, both called Osler’s Web that are very informative, and her info led to 2 congressional oversite hearings being held and proof of some of the CDC’s misuse of funds, etc…..there are other sources of this kind of info, too, but she is one of the better ones)…..here is a brief explanation in my words about all that I have read re the CDC:

The CDC’s take has been quite harmful overall for CFS patients. They have created a name that gets no respect, have changed the definition so that it includes other illnesses, have suppressed valuable research and even gone after the researchers to the point where many have had careers ruined and other have been deterred from pursuing CFS research, they have prevented academicians from educating future drs about CFS, and have pretty much spread the theory that we are depressed, psychosomatic, malingerers. (They have done this while appearing to be supportive on the surface.) Their latest “research” grp includes people in Georgia, who have only to have been experiencing a feeling of “unwellness” for a month in order to be included, and the info has been gathered primarily via phone calls. Obviously, such a grp includes many many people who do not have CFS. They have also consulted frequently with the UK’s “researchers” on CFS who are coming from a completely psychological (and completely wrong) view of CFS.

I am very happy that the XMRV virus is getting so much attention and that it helps to finally give us some validation. I am somewhat happy that the CDC put the research for it into the grp with HIV and took that away from Reeves.

However, they still have a CFS research grp under Reeves, (and that grp still uses the Georgia cohort – bad news), and my fear is that CFS might be sometimes caused by XMRV, but not always. If that happens, Reeve’s grp will actually have more fuel for their fire, and the chance of any other true causes being found will not be very good.

It will be looked at as there are 2 grps: XMRV positive illness, and XMRV negative CFS, which will most likely be even more strongly viewed as psychological. (At least based on the last 20 yrs, that is what I think will happen.) If that does happen, then people who have CFS that is caused by somethign physical, but not XMRV will be left out in the cold and further ostracized by the general population and by many drs, and they will still not have any hope for good research, good treatments, etc, and there is not going to be a high likelihood that they will be able to get disability benefits if they need them.

Also, if XMRV does turn out to be A cause or even THE cause, it is positive in the sense that at least we will know what we are dealing with, and it will prove that this is a physical illness….but it is also quite scary in that it is very similar to HIV and it is a permanent illness. Once the DNA changes to incorporate the retrovirus, it cannot expel it, bc it becomes a part of the DNA.

My take on it is that the U.S. Department of Health and Human Services (HHS) is creating a task force to take the lead and leaving the CDC behind in the dust. Normally the CDC would be responsible for such an investigation, but I suspect that HHS lacks the confidence to conduct a thorough, expedient, and unbiased investigation (and Dr. Reeves comments that dismiss the connection between XMRV and CFS nailed the lid on the coffin). There is too much at stake here to depend the CDC .

I think the issue of the criteria the CDC uses, is very important.

And it hasn’t gone away just because XMRV could be a (big) factor for many people.

I think Tammie in post #12 raises some valid concerns.

We will have two groups:
XMRV+ CFS
and
XMRV- CFS.

It looks like the first group may be studied and things will improve for them.

But what about the second group.

Well if the Reeves/empiric definition is used (see: http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/index.html), XMRV- CFS will be a pretty meaningless condition where they won’t be able to find anything physical but may find psychological factors that are common enough in the group to give the impression it affects all of them e.g. childhood abuse.

But if a strict definition is used for CFS e.g. the Canadian clinical criteria, then XMRV- CFS I think is still an interesting group and researchers could find other interesting things in that group.

I have been tested positive for the pcr active infection and positve culture. Tested at VP labs reno nevada.
I live in South Georgia and was diagnosed with fibromyalgia 11 years ago.

Such researches should be carried out by as many unbiased persons as possible and in other countries as well. Only then will you get a true picture of what is happening world widwide and what can be done to help those of us who sufferCFS/ME and Fibro as well as other related complaints.

I have to “painfully” agree with Tammie in #12, both physically and mentally…
She raises a very vaild point, about the 2 groups we all may be put into.
CFS/ME/FMS+XMRV
CFS/ME/FMS-XMRV

I have suffered with clinical depression for 20 years. I DON’T believe it has anything to do with my CFS/FMS diagnosis. It certainly didn’t help to be so depressed from hurting all the time, being told by an emotionally abusive husband to “get your a** out of bed and go to work!”,(divorced him!) and looked at like I was just crazy or lazy or both to finally get a rheumatology referal to FINALLY get an “official” diagnosis. Until then, I had no idea FMS even existed.

My primary Dr. had been my Dr. for 16 years, he knew me, and he knew something was wrong. He did finally suspect Fibro when nothing seemed to make me better. Since then, he has been a great supporter for me, and has tried so many different things to try to help me. Savella is finally helping with the pain.
I am going through the issue of being uninsured, and unemployed and having difficulty paying for so many different scripts each month!
My Dr. has sent an application to Forest Pharmacueticals PPA, to hopefully have my medication supplied for me, or at least at a reduced price. My fingers are crossed.

XMRV seems like a real possibilty for alot of us who are suffering. Like I wrote in a previous post, I had NUMEROUS blood transfusions, after a (normally) simple sugery. Until then I had always been very healthy. I have often wondered to myself and to my Dr. if the blood transfusions could have caused this illness. He said he didn’t think so at the time. He is watching the research into XMRV, as he has had an increase in patients like us.

Hopefully this will help ALL of us, and those of us who may or may not have this virus, should still be researched until help is found for everyone.

I’m sure I have rose-colored glasses on, as I don’t know alot about the CDC, and other agencies. I trust those of you who do, to help those of us who don’t, to understand just what we are all up against!