What are we waiting for really?

[serenity]

Kati, thanks for the suggestions - i am out of the closet on Facebook. i have been writing articles. no one reads them, but i am writing.
thats about all i can do as i am too sick to do much more, but i'm all over my net pages with it.

 

[CBS]

I think even if XMRW doesnt turn out to be a central issue - WPI ist right that we need more funding. even if there was an improvement last months with funding (but i am not sure) its still not too much compare to other sicknesses. I think even if XMRV is not a cause this is just a normal scientist process and the researchers have to find out if its true or not. But if there will be no money - they cannot confirm it and so a lot of CFS researchers don't know on which they should focus.

I couldn't agree more, we need more funding. As for not being sure that there is more funding, I've seen it being spent. Had lunch yesterday with a good friend who doesn't know a thing about CFS but runs a very high tech piece of testing equipment and he has had samples going through his lab for the last month. This is a lab that typically has a very long waiting list and lots of politics behind who gets priority.

You're absolutely right that even at today's higher levels, it still isn't much compared to most (nearly every other) illnesses. The type of money you are talking about comes from governments and very high profile national campaigns (Thing AIDS and breast cancer marches or Michael Fox for Parkinson's). We're not there yet (we're 30 behind where we ought to have been) and that's the government's fault. So again, lobby your congress people and the national agencies but also take some hope from knowing that the science is moving forward (at light speed compared to HIV in the early 80's). I know when you feel like hell everyday it can never be fast enough.

 

[Kati]

Shane, your first reply came across a bit differently than the last one, I am glad you agree we need more funding.

When someone like Judy Mikovits is frustrated by the lack of funding, I think it says a lot. She has knowledge, wants to do more studies, probably wants to hire more people to speed up her work, perhaps needs more equipment, and there is no money for that. Truth is patients have rarely extra money after their rent, food and basic needs. But we have a voice, we have computers (or you wouldn't be here) and we want to get better...

So... if we could all write advocacy letter and a testimony to CFSAC, I think we could move mountains, because we NEED to move mountains. If you don't want to write, consider a dictation software or asking a family member to write for you. Doesn't have to be long, just straight to the point.

 

[michal]

The things are moving forward but i think too slowly - but I am often impatient. This is our problem - we have to be more visible. we have to make lobbing for our sickness. This is not a sickness with 100 people. if there are the statistics that in US are at least one milion CFS people - this is a huge number - how is it possible that we are even not able to force the governement to found research for us. this is not a new sickness - we did a mistake somewhere and we have to change it alone. we cannot be satisfate that maybe the things go little bit faster last months - we have to do more and dont wait all the time - we already lost a lot of time.

 

[CBS]

Kati,

I am truly grateful to the WPI. I have donated what I can to the WPI. I just feel like the next step is going to have to come from somewhere else to be accepted by the larger scientific community. That doesn't mean that the WPI doesn't need or deserve additional funding as well. They may be looking at something this very moment that will move future research forward. BUT, that something is not likely to get much traction until other institutions come forward with findings that collaborate the WPI's original work. Until then, all we'll hear about is possible lab contaminants, questions about methodology etc. None of which are necessarily valid/substantiated criticisms but the WPI is not in a position to put these questions to rest on their own.

Without collaborating evidence from a number of independent facilities, I seriously doubt that most of us will be able to find practitioners willing to treat XMRV. And if that's the case, I don't care how big the new neuro endocrine center at the Univ. of Nevada is, most of those in the world with CFS will still go untreated/mistreated.

 

[gracenote]

So... if we could all write advocacy letter and a testimony to CFSAC, I think we could move mountains, because we NEED to move mountains. If you don't want to write, consider a dictation software or asking a family member to write for you. Doesn't have to be long, just straight to the point.

Kati,

Do you have the information on the requirements for this? It would be helpful if you, or someone else, could post the format and length, and also the address where we should send our testimonies. It would even be great to have a thread just for CFSAC testimony writing. (I'm sorry I'm not up to gathering this info right now.)

 

[serenity]

i cam even more out on my webpages & talked to my aunt who works at the Health Dept today. so, i've done a little lobbying
where do you go to donate to the WPI? their webpage?

 

[Kati]

Way to go Danib, yes on www.wpinstitute.org, on the first page there is a Pay Pal donation widget.

If you donate 50 000$ or more Mrs Whittemore will phone you directly.

 

[serenity]

haha, well i dont' have that much to donate but i can spare a little

 

[Kati]

Danib, a little bit by many people ends up being a lot.

CFSAC contacts:

Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX)
cfsac@hhs.gov (Email)

 

[Otis]

What are we waiting for?

I'm stepping out on a bit of a limb (so what's new?) and I know that this might not sit well with everyone here but it is not my opinion that we are waiting for the WPI (or even the Cleveland Clinic or the NCI).

In the world of research, the WPI has already come up with a very big hit but many questions have been raised (many by studies with minimal attention to design and the WPI has responded/engaged with the authors of those studies in ways that have generated a lot of heat from both sides - and no, I'm not blaming the WPI for feeling frustrated but I think that they need to trust the scientific process as much as the rest of us).

So, will the next great study that moves us closer to an answer on what role, if any, XMRV plays in CFS come from the WPI? I seriously doubt it. What more can they say that they haven't already said? A study (or series of studies) from independent groups (Columbia Univ. Univ of Utah, Emory, Abbott, GSK, ARUP, University of Montreal - Dr. Jolicoeur, HHS, or even the CDC) would be far more powerful.

So support these groups and push federal officials to devote resources to the problem. But also know that right now we are in a period where a huge amount of money has been spent (probably as much if not more in the last 6 months than has been spent on CFS in the last 6 years). Our present problem with XMRV isn't funding, it is patience and, while I don't think this is likely; what do we do if XMRV doesn't turn out to be a central issue (perhaps another co-infection) in CFS?

Good points. IF XMRV isn't IT for most of us hopefully not ALL the researchers will pick up their toys and go home. I'm sure WPI won't but it could be seen as yet another CFS red herring.

One thing I learned in 20 years of building VERY complex custom networked computer systems, as in science, learning what a problem is NOT can be very helpful to finding what it is even if it tries our patience. While intetest in XMRV is very high we need to push that science along but not to the exclusion of all else. Science has a funny way of arriving at the same result from multiple angles, often at the same time and serendipity happens too. Science is full of 'accidental discoveries'.

I'm impatient too. We all need to be well ASAP so we can make up for lost time. Think of the flood of positive energy we'll unleash on the world when we are well. OK, I managed to end that on a positive note.

Otis

 

[serenity]

"I'm impatient too. We all need to be well ASAP so we can make up for lost time. Think of the flood of positive energy we'll unleash on the world when we are well."

well said Otis that is just how i feel

thanks Kati, i wouldn't mind sending an email - do ya'll have a sort of a standard "what to say" written out anywhere?

 

[HopingSince88]

I seriously think that we should target Michelle Obama. I am personally writing on paper (not printing from computer...but using handwriting) to her our plight. I challenge every member of this forum to do the same. She is very family oriented, and this is a disease that affects families. She needs a cause to champion. Why not us?

 

[Kati]

Everybody have different opinons as for what to say. I'd suggest you talk about your personal experience, what you've lost, how long you've been sick, your own experience of living with CFS, with doctors and insurance.

Mention that you were a tax payer, citizen, and had a bright future.

Personally I will mention the international impact the CDC had on the disease and education to doctors.

Remember that these letters will be made public via website- http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html
and the link provides examples from different people.

I personally think that the more people come forward and write something, the more weight we will have as a group of sick people.

 

[CBS]

If you donate 50 000$ or more Mrs Whittemore will phone you directly.

And to think I was so close to getting that call!:Retro redface:

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[CBS]

Otis said:


My opinion differs from yours, Otis. Since WPI is the researcher most interested in XMRV and CFS/ME and most eager to make the next step, I think it could very well come from WPI. Why not? Even medical researchers tend to be more likely to find what they are looking for than what they are not looking for, and the CAA researchers and others are not looking at XMRV in CFS/ME. The ones that are looking at XMRV seem to be looking at prostate cancer.

So why should it not be WPI that finds the next step?

Wildaisy,

Actually, Otis was quoting an earlier post of mine. I don't think that it is fair to say that the WPI is the most eager (perhaps the most vocal and as a percentage of what they are looking at, they are the most invested) and quite honestly, it is far more convincing if a disinterested party replicates the WPI results.

You may not hear about it everyday, but you can rest assured that a lot of very smart and dedicated people with decades of experience with XMRV (it is not a new retrovirus, it is just newly identified in humans) are looking at this with an eye squarely on CFS.

 

[CBS]

All right, CBS. Tell us about all those studies which we may not hear about every day. What inside information do you have?

Please name studies of XMRV specifically in CFS/ME and not in prostate cancer.

Wildaisy,

First of all, none of this is "inside information." It's all right here on the PR Forums.

Dr. Singh, Dr. Bateman and Drs. Alan and Kathy Light at the Univ of Utah (see the front page story entitled "A Light in the Darkness: Good News Ahead for XMRV?"). See the interview with Dr. Singh here: http://www.ksl.com/index.php?nid=148&sid=10239583&s_cid=E0002. There's an entire thread on this interview and the associated article. A study of invitro effectiveness of anti-virals has alrady been published (PloSOne). Non-human primate testing to assess the effectiveness of several anti retrovirals has already started (see Singh TV interview).

Stephen Goff at Columbia University is working with Jose Montoya of Stanford looking for XMRV in CFS patients. Several mentions of it on the boards. Some forum participants have already given blood (http://www.forums.aboutmecfs.org/content.php?98-Virologists-on-XMRV).

Ila Singh at Utah is working with Emory Univ. which has done studies demonstrating the course of infection as well as studies looking for XMRV in tissue (found in reproductive tissue as well as lymphatic tissue) and blood. Abott Medical is supporting the Emory studies and ARUP (a huge regional lab) is contributing to the CFS/XMRV studies at the Univ of Utah.

And it is my understanding that Dr. Jolicoeur (noted retrovirologist with a huge amount of experience in HIV) at the University of Montreal has just applied for funding to replicate an earlier (as of yet unpublished) study of XMRV and CFS.

This is simply a list off the top of my head. Anyone care to add anything I've missed?

I have to say, I'm a bit put off by the way you phased this as a challenge, especially in light of the fact that all of it has been discussed here at length over the last couple months. There's a lot here to keep you informed. I've found the PR forums to be the best source for both information on the latest research as well as a civil place for discussion. I would have taken your question to be of genuine interest if it had been phrased along the lines of "I'm not aware of what else might be going on. Would you mind providing some examples?"

 

[HopingSince88]

Robyn,
Thanks for the info on Mrs. Obama's father. I did not know about the MS. Also, my daughter is very sick with this illness, and when she was 12 and first admitted to the hospital, I was told that she was showing signs of hysteria. I will keep this in mind as I write my letter to her.
Hoping...

 

[Mark]

PS--Sorry you don't like my writing style. I'm not particularly fond of yours either.

As moderator:
This seems like a potential escalation into getting personal, so can we nip it in the bud please and remember to stick to the matter at hand and not start a fight. Ad hominem attacks are against the forum rules. CBS said your challenge seemed aggressive rather than not liking your writing style - but regardliess of the rights and wrongs, please both take care to avoid personal attacks.

As Mark:
Clearly the real difference of opinion is over whether to support this thread's point - that it's time to get behind the WPI and call for XMRV research. That's a widely held opinion as the thread shows, and I have to say I'm very strongly inclined towards that opinion myself.

This thread was a very optimistic and campaigning one, so it's perhaps not surprising if posters come on this thread and answer the question "What are we waiting for really?" literally - that discussion has been had, and is being had, elsewhere, and people have formed their views by now I suspect.

So what I'm wondering is: if one group of people are blowing bubbles, and arguments start when others come in and start bursting them, would it help to have well-defined spaces or threads where those like-minded people can blow those bubbles together without interference? I'm not proposing a complete segregation, we can still argue it out in the right places, but it might help to somehow define that a little better.

In practical terms, maybe that means this thread could be spun off (I think somebody suggested renaming it earlier) - have the argument about "What are we waiting for?" on one thread and let the people who aren't waiting for anything get on with it on another thread.

Hope these ideas are helpful suggestions somehow...just ideas...do please carry on...:Retro smile: