Dr. Suzanne Vernon updated statement on XMRV

[mezombie]

From the research section of the latest CFIDSlink, the CAA's e-newsletter (http://www.cfids.org/cfidslink/2009/120202.asp

Many readers may not realize the incredibly competitive and political nature of science. To most of the CFS medical and research community, the XMRV finding published in Science was a surprise announcement. While many investigators were cautiously optimistic and excited about how this could be a game-changing finding, some were ready to “pack up and go home” – mostly because the media blitz read like a “case closed” Sherlock Holmes novel. It takes only a brief review of lessons learned from other remarkable discoveries like HIV to understand that detecting a virus is the beginning. If the XMRV finding is replicated in other CFS populations, validated to be the cause of CFS, and the FDA reviews the quality of XMRV diagnostic tests, then we can “check off” objective diagnosis from our to do list! XMRV is a new beginning, not the end.

 

[gracenote]

Suzanne Vernon's post

From the research section of the latest CFIDSlink, the CAA's e-newsletter.

Thanks for posting this, Marie.

I couldn't open the link but found the article. Below is the next paragraph of Suzanne Vernon's post.

Personally, I hope XMRV is validated and found to be the cause of CFS finally we will have a context for all the important and remarkable ongoing research. And in no way does XMRV reduce the importance of ongoing research on immune dysfunction, other pathogens, post-infection fatigue, dysautonomia, HPA axis dysfunction, oxidative stress and altered neurometabolism, etc. On the contrary, it gives these investigators a strategic advantage and a competitive edge for CFS funding opportunities that will advance treatment and prevention.

 

[CBS]

Modified URL

From the research section of the latest CFIDSlink, the CAA's e-newsletter http://www.cfids.org/cfidslink/2009/120202.asp

The link was nearly correct. The parentheses at the beginning and end and the colon at the end needed to be removed. The link above in my comment should work.

Thanks for the bringing attention to the article.

Shane

 

[Kati]

Dr Vernon

I am thankful the researchers, physicians and investors (Mr and Mrs Whittemore) are expressing themselves in times of excitement, chaos, questioning and anticipation. It's good to know we can count on you to advance our cause to a higher level of research, care, treatment, and awareness. I will be doing the best I can to help funding the research.

May we all be united in finding the cause of CFS and treatment for all of us.

 

[hvs]

My question remains, what will Dr. Vernon say when the NIH/CDC does not find XMRV in Reeve's disease sufferers?

 

[Recovery Soon]

questions

My question remains, what will Dr. Vernon say when the NIH/CDC does not find XMRV in Reeve's disease sufferers?

Can someone please bring me up to speed- What is Reeve's Disease?

And does this new interagency CFS task force seem like a positive, or is there reason for skepticism?

Thanks.

 

[_Kim_]

Can someone please bring me up to speed- What is Reeve's Disease?

"Reeve's Disease" was coined by Dr. Joan Grobstein, a patient who gave a brilliant testimony at the CFSAC meeting on Oct. 29th. It refers to the empirical definition that the CDC created under William Reeves. If you haven't seen this testimony, you can watch it on Youtube here.

And does this new interagency CFS task force seem like a positive, or is there reason for skepticism?

I see this as a very positive sign of progress.

 

[Andrew]

Good question, HVS. What will they say? .

Here's what I'd like them to do. I'd like CAA to hire the best person they can find to replicate the WPI study. If the findings are significantly different, they should hold off on publishing and sit down with WPI and try to figure out what's going on. Maybe even look into double checking with someone else's test (ex. Cooperative Diagnostics) and hammer this whole thing out before CAA publishes. Vernon's stance is that we should cooperate and not compete, and doing it this way would fit that goal.

Can someone please bring me up to speed- What is Reeve's Disease?

Reeve's Disease is a nickname for the empiric definition used by CDC.

If the XMRV finding is replicated in other CFS populations, validated to be the cause of CFS, and the FDA reviews the quality of XMRV diagnostic tests, then we can “check off” objective diagnosis from our to do list! XMRV is a new beginning, not the end.

I agree with this. We need to keep all research moving forward while XMRV is being verified. All this other research could suddenly fall into place as part of the picture with XMRV as the puppet master. Or not as the puppet master. We can't afford to throw away any life jackets.

 

[Kati]

The CDC is trying to replicate the WPI study but the CFS division has nothing to do with it, it's the HIV division that has the samples and trying to replicate. LEt's hope they are doing it right, and using the right subset of patients. Wichita subset won't quite cut it me thinks

 

[Recovery Soon]

"Reeve's Disease" was coined by Dr. Joan Grobstein, a patient who gave a brilliant testimony at the CFSAC meeting on Oct. 29th. It refers to the empirical definition that the CDC created under William Reeves. If you haven't seen this testimony, you can watch it on Youtube here.




Thanks and WOW. That testimony was unbelievable.

Can someone please direct me to where I might find the

"Fukuda"
Canadian
and Reeves criteria, respectively.

Sorry to take this thread backwards- but I really want to get up to speed on what has been taking place.

Thanks.

 

[_Kim_]

Thanks and WOW. That testimony was unbelievable.

Yes, that was some little 5 minute speech!! She's a dynamo.

Can someone please direct me to where I might find the
"Fukuda"
Canadian
and Reeves criteria, respectively.

Here's a nice synopsis of the CFS name game: CFS Definitions

Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS

Comparing the Fukuda et al. Criteria and the Canadian Case Definition
for Chronic Fatigue Syndrome

The findings suggest that both the Canadian and Fukuda et al. case definitions select individuals who are statistically significantly different from psychiatric controls with chronic fatigue, with the Canadian criteria selecting cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms.

 

[Cort]

CDC - No the CDC's old studies won't cut it. The CDC has at least three sets of samples and it trying to get more; they have their Wichita and Georgia samples, plus they have a set of samples from the WPI and they're trying to get verified samples of CFS patients from CFS researchers.

The HIV/AIDS division appears to recognize they have a real problem with the Georgia and Wichita samples. If they can get samples from CFS researchers/physicians then the Wichita/Georgia samples won't matter so much. I can't imagine that the HIV division doesn't want to find this virus very much - that's alot of work for them for the forseeable future.

CAA's Research Effort - To compare the CAA's research efforts to the WPI's discovery is unfair because if XMRV works out then it will put everyone's research effort in the shade. To say the CAA is not funding significant research is incorrect, though. Even tho they have little money (research-wise) they are and have funded a great deal of significant research.

• They funded De Freitas efforts to find retrovirus and the Dr. Martin's efforts to do the same.
• They funded the Pacific Fatigue Labs Repeat Exercise Studies which are altering how researchers do research and identified a possible metabolic disorder in this disease.
• They're currently funding researching to brain lactic levels (mitochondrial dysfunction in the brain) and vascular issues.
• They're funding the Light studies which honestly, blew my mind, and which I wrote a paper on called "Surprise of the Conference".
• They're funding a study on the 'metabiome' on our gut (remember H2S).
• They're funding work on endogenous retroviruses (HERV's)

http://www.cfids.org/about/acceleratecfsresearch.asp

Plus Dr. Vernon is putting together an international research network that should, if its successful, greatly speed up the pace and quality of research.

In my opinion they actually have (XMRV notwithstanding) the single most innovative research program going!

 

[anne]

I think Dr. Vernon is exactly right to say that this is just the beginning. Obviously the mechanisms here are quite complicated and every good research that's being done is going to a puzzle piece. It's just there was never a picture on the box to work off of before.

I found something in an old CFIDS Link from a CFASC that seemed to imply the NIH wouldn't use the Reeves criteria because it wasn't clinically useful. If it turns out that they actually demonstrate that using these different groups of samples, it will completely discredit the criteria and that's a good day for everyone.

Cort, I don't know the Light research. Can you link?

 

[Recovery Soon]

Here's a nice synopsis of the CFS name game: CFS Definitions

Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS

Comparing the Fukuda et al. Criteria and the Canadian Case Definition
for Chronic Fatigue Syndrome[/QUOTE]



Thanks!

 

[Cort]

You're going to love this

As Dr. Mikovits likes to say "It knocked my socks off"

http://aboutmecfs.org/Conf/IACFS09Surprise.aspx

(not getting my newsletter...tsk tsk

 

[mezombie]

It takes only a brief review of lessons learned from other remarkable discoveries like HIV to understand that detecting a virus is the beginning. If the XMRV finding is replicated in other CFS populations, validated to be the cause of CFS, and the FDA reviews the quality of XMRV diagnostic tests, then we can “check off” objective diagnosis from our to do list! XMRV is a new beginning, not the end.

It's this part that caught my attention. I appreciate Dr. Vernon's methodical approach to XMRV.

As to the CAA doing its own XMRV research, I don't think Dr. Vernon is engaging in bench research at the CAA. She is, I believe, more of a coordinator. She doesn't have a team of researchers to study XMRV the way the WPI does.

The CAA to date has solicited research proposals and funded the ones felt to be most promising. They do this annually. I believe they have already committed much of their avaliable research funds to other projects (before the XMRV findings were released).

Hopefully, they will be able to shuffle funding around and fund another XMRV research project -- or at least pitch in on the funding.

Marie

PS Thanks to those who caught the problem with my link! I've fixed it now. This should teach me not to post when I'm half-asleep with a semi-functioning computer!

 

[annunziata]

I think Dr. Vernon is exactly right to say that this is just the beginning. Obviously the mechanisms here are quite complicated and every good research that's being done is going to a puzzle piece. It's just there was never a picture on the box to work off of before.

I found something in an old CFIDS Link from a CFASC that seemed to imply the NIH wouldn't use the Reeves criteria because it wasn't clinically useful. If it turns out that they actually demonstrate that using these different groups of samples, it will completely discredit the criteria and that's a good day for everyone.

Cort, I don't know the Light research. Can you link?

I agree with this. The XMRV breakthrough made me think of that line of Winston Churchill's: "Now, this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

My personal beginning has dragged on for 23 harrowing years, and I'm more than ready for the end of it.

 

[mezombie]

The CAA & XMRV research

I just checked out Cort's link (the one about the CAA's research efforts), and found this regarding what the Association is doing right now to help XMRV research along:

"With the publication of a study in the journal Science, on Oct. 8, 2009 linking CFS to the retrovirus XMRV, the Association immediately began coordinating researchers who requested assistance to develop critical validation studies. Those research projects are getting under way."

 

[mezombie]

Anne: NIH not using Reeves criteria

Anne--You're correct; the NIH has never used the Reeves criteria. And Reeves' paper outlining them came out in 2005, I believe.

 

[Recovery Soon]

I agree with this. The XMRV breakthrough made me think of that line of Winston Churchill's: "Now, this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

Here's another Chruchill quote-

"When you're walking through hell, keep walking."