Dr Vernon's webinar Thursday 18th at 2 pm EST

[Cort]

I'm just so jazzed at that research network. I've been following CFS research for a long time and I'm so ()&(&(&^^^ing tired of watching research studies go on and on and on. A guy in LA was looking at the effects of Viagra on CFS; I'm sure that many of the guys could use a boost in that area )) - but he was seeing how it effected the blood vessels in the brain - very much like what Suzanne was talking about. That was about four years ago - I contacted him and he was having trouble getting patients in the study - and its four years later and its still never been published. What if he had a database of patients in the LA area he would contact?

That's why I want this research network and dataBank to thrive. I'm fifty years old! I don't want to go through the - solo researcher - 4-5 year start to finish study and publish scenario - and THEN you start collaborating and replicating the study. This network cuts all that out - as soon as they have good data they start sharing and incorporating it into each others studies and projects. Now that's progress:victory::victory:

That's what I want to see. We don't have cadres of researchers attacking each of these subjects. We don't have studies coming out on lactic acid in the brain every year - we should but we don't - we have a small pool of researchers who really NEED to collaborate if they're going to make substantial progress in a suitable timeframe.

 

[Cort]

That's what I do - I do their donate monthly option - its easy to do; yes, at the end of the year I kind of gulp at how much it adds up to (for me) but its a pretty pain free way of supporting them.

 

[gracenote]

Kurt,

I think a lot of people, including myself, are mistakenly using 'bio-marker' when they mean differential diagnostics.

Thanks for pointing that out.

And I agree that the database is a great project.

I'm not sure about that julius. I think what I want is an indisputable, clear, can't be denied, this is IT biomarker. One where you can point someone (like our doctors) to ONE explanation for our disease, not have to direct them to years of research studies that seem to say a little about this and a little about that the "abundant biomarkers" that Kurt refers to.

Most of us, even those of us who have made great attempts to educate ourselves, and most of our doctors, could not list what those biomarkers are. I don't think there is even agreement within the specialists in our field as to what they are.

Maybe I'm wrong about this, and maybe it's just me. I can't seem to hold it all in my head.

Pop Quiz: List the Biomarkers of CFS. You have one minute.

I do understand that this can't happen without first having a "differential diagnosis," so I think that is primary.

I LOVE the research database they're working on. Way cool.

 

[Hope123]

CAA should consider doing a webinar if not a live presentation in DC for legislative aides of Congressional members. This is something we can direct our Congressional members' offices to watch live from their offices or on their own time (if recorded). It would need to be short and sweet of course.

 

[Cort]

Found the Restricted Donation page. Here it is https://secure.cfids.org/Donate/tabid/76/List/1/CategoryID/1/Level/1/Default.aspx?SortField=ProductNumber,ProductNumbe

(they screwed up a bit - had to use the Join button - and then click on their Donation box to find it - not a web friendly thing to do. You can restrict your donations to Research, Education, Advocacy or give a general one.

I do the Chairman's Circle - monthly giving; its here - https://secure.cfids.org/TheChairmansCircle/tabid/84/Default.aspx

 

[OverTheHills]

Dr Vernon must be a very sharp woman; she has clearly thought about how to wring every drop of value out of a limited research budget, and is keeping the goal in mind rather thanletting people play academic politics. It makes me wonder how much further on we would all be if she had had real power in CDC.

 

[julius]

I'm not sure about that julius. I think what I want is an indisputable, clear, can't be denied, this is IT biomarker. One where you can point someone (like our doctors) to ONE explanation for our disease, not have to direct them to years of research studies that seem to say a little about this and a little about that — the "abundant biomarkers" that Kurt refers to.

Most of us, even those of us who have made great attempts to educate ourselves, and most of our doctors, could not list what those biomarkers are. I don't think there is even agreement within the specialists in our field as to what they are.

Maybe I'm wrong about this, and maybe it's just me. I can't seem to hold it all in my head.

Pop Quiz: List the Biomarkers of CFS. You have one minute.

I do understand that this can't happen without first having a "differential diagnosis," so I think that is primary.

I LOVE the research database they're working on. Way cool.

I think we're saying the same thing. We have a long list of bio-markers right now. They show we are physically ill, but none can definitively say "this is CFS".

A differential diagnostic is a single test or marker that can identify CFS.

 

[Sing]

Just sent the following message to www.cfids.org

Re: SolveCFSBioBank

Such a good idea but many people with CFS, like me, have not had helpful or interested doctors who did a lot of testing, and/or who may have not had the money or insurance to support these detailed workups. We know our symptoms intimately but may only have what you'd consider as an incomplete record of labwork, etc.

There is a circular problem here in that the facts your researchers want to have in the bank are those that they know now are important; however, they may not have been considered important to gather by our doctors or we may not have had the funds or stamina to keep fighting the system to get. We CFS patients have been partially blocked all along in our pursuit of knowledge about our physical systems and stymied by our own lack of understanding and our doctors' lack of understanding.

That said, I am sure that many will be glad to try to round up what information they can. Sending in current lab tests is the easy part, as long as we can persuade our doctors and get it paid for somehow.

Wanting to help and be helped!

Thanks!

 

[Cort]

What I think the CFIDS Association will do is simply get alot of data on your symptoms, family history, etc. to 'well characterize you' and then ask for some blood or perhaps other sample. Then they'll bank the sample and allow researchers who present constructive proposals to use it so someday you'll end up in a study or maybe even a couple of them - contributing to the understanding of CFS - not a bad thing to do.

If this Network goes through the researchers could start to segregate the patient into different subsets. If all this information is database ready it simply takes a click of a button to see how different factors come or do not come together.

Subsets are such an important issue but the research community has never really taken that issue on because its so messy. But if the research network has an huge database of both samples and results then data mining specialists can pour through it to find the different subsets. Does low blood blow in one part of the brain correlate with an XMRV infection? Does one spect scan pattern correlate with EBV infection or brain lactic acid? The power of a good database - such as Suzanne talked about at the end of the presentation- is just unreal.

 

[Sing]

Thanks, Cort. I feel relieved--

Sing

 

[Cort]

Dr Vernon must be a very sharp woman; she has clearly thought about how to wring every drop of value out of a limited research budget, and is keeping the goal in mind rather thanletting people play academic politics. It makes me wonder how much further on we would all be if she had had real power in CDC.

She's a researcher at heart. She obvoiusly left there because it wasn't fulfilling anymore. Its pretty clear she had a falling out with Dr. Reeves. She wasn't happy about the allostatic stress emphasis or the sexual abuse studies. Her leaving could have ultimately been what triggered Dr. Reeves dismissal if you think about it. She left the CDC and went straight to the CAA. She obviously knew alot of what was going on and must have brought a wealth of information to them. It was a year later that the CAA publically called for Dr. Reeves dismissal. Those finanical problems the CAA revealed were pretty bad - they must have helped get rid of Reeves. So simply by leaving the program she may have changed its direction. She's a very smart determined woman - may be ultimately too much for Dr. Reeves.

I think you're right - the CAA's research program is much, much smaller than the CDC's but look at how much more interesting stuff they have going on. (My secret fear, though, is that she'll go back to the CDC; I think she's more valuable here. UltimatelyI think she can make more of an impact creating a collaborative research network than heading the CDC's research program).

 

[CBS]

Cort,

Thanks for the CAA directed donation info. I do know that amongst those working closely with Dr. Vernon, efforts are underway to collect Hx and Sx info to classify potential research subjects by cohort. This is being done in a manner that could easily be matched (either prospectively or retrospectively) with biological info such as the markers used in the studies Dr. Vernon described. Given the resources, there is also no reason (aside from addressing IRB concerns) that this couldn't also be done in a blinded manner with patients who have already participated in these studies.

As to your last point, I think it important for all researchers to retain as much independence from the CDC as possible until the CDC shows that it has recognized the errors of the past.

 

[Dolphin]

Just sent the following message to www.cfids.org

Re: SolveCFSBioBank

Such a good idea but many people with CFS, like me, have not had helpful or interested doctors who did a lot of testing, and/or who may have not had the money or insurance to support these detailed workups. We know our symptoms intimately but may only have what you'd consider as an incomplete record of labwork, etc.

There is a circular problem here in that the facts your researchers want to have in the bank are those that they know now are important; however, they may not have been considered important to gather by our doctors or we may not have had the funds or stamina to keep fighting the system to get. We CFS patients have been partially blocked all along in our pursuit of knowledge about our physical systems and stymied by our own lack of understanding and our doctors' lack of understanding.

That said, I am sure that many will be glad to try to round up what information they can. Sending in current lab tests is the easy part, as long as we can persuade our doctors and get it paid for somehow.

Wanting to help and be helped!

Thanks!

The thing is that I don't think patients should necessarily expect to get a huge range of tests. There could be hundreds of tests that might show abnormal with ME/CFS if one goes by the research but does every patient need to have all or even most of them?

And it's important to point out that paying for tests doesn't add to the research knowledge base as much as proper studies that go on to be published.

 

[Sing]

Just got the following message back from CFIDS.org

We are very excited about the upcoming launch of the SolveCFS BioBank and are grateful for the interest in it that today’s webinar generated.
Many of the issues you raised in your email are the very reasons we are investing in a patient-organization-owned Biobank. We are in the final
steps of securing approval from the human subjects review committee. As soon as that process is completed, we will be able to provide more
details. Patients who meet basic eligibility criteria will be shipped kits for sample collection – directly! – and will complete online questionnaires
about their symptoms, medical history and family history.
Please make sure you’re on our mailing list (CfidsLink) so you get first notice!

Gloria Smith
Office Manager
The CFIDS Association of America
704/364-0016 Ext. 108
gesmith@cfids.org
(Permission to repost this information)

Working to make CFS widely understood, diagnosable, curable and preventable.

 

[Dolphin]

Monthly donations are best

That's what I do - I do their donate monthly option - its easy to do; yes, at the end of the year I kind of gulp at how much it adds up to (for me) but its a pretty pain free way of supporting them.

Yes, that's what we've found in Ireland. We also then encouraged people in the UK to set them up.

I imagine the same facility exists in the US as in Ireland where one sets it up through one's bank/similar. It's called a standing order here - that's distinct from a direct debit where the receiver can vary the amount. With a standing order, the person sending is in charge and can stop at any time.

Non-profits like regular donations also because it allows them plan better how much money they are likely to have.

Found the Restricted Donation page. Here it is https://secure.cfids.org/Donate/tab...lt.aspx?SortField=ProductNumber,ProductNumber

(they screwed up a bit - had to use the Join button - and then click on their Donation box to find it - not a web friendly thing to do. You can restrict your donations to Research, Education, Advocacy or give a general one.

I do the Chairman's Circle - monthly giving; its here - https://secure.cfids.org/TheChairmansCircle/tabid/84/Default.aspx.

Great

 

[Cort]

Nice Sing! It looks like an easy process - a nice and easy way to contribute.

I came across the CAA's direct donation page by accident and thought "I'll do that' - so my donation went from $35 a year to much more - which was fine.

 

[Dolphin]

The thing is that I don't think patients should necessarily expect to get a huge range of tests. There could be hundreds of tests that might show abnormal with ME/CFS if one goes by the research but does every patient need to have all or even most of them?

And it's important to point out that paying for tests doesn't add to the research knowledge base as much as proper studies that go on to be published.

Background of where I'm coming from: I have got frustrated by the number of people who don't give to research. The number who give, particularly reguarly (not just talking monthly but every few years), is tiny. I've no problem people spending money on tests and treatments. I have a bit of a problem that so many people can't come up with any money to support research. 1% of what a person spends on treatments I think wouldn't be unreasonable (if peope give more, that'd be great). This should adjust for different people's circumstances.

 

[Molly29]

Slides From Todays Webinar?!!

Did anyone get a screengrab of the EBV graph? That one was fascinating for me since like many of you my CFS was triggered by EBV.

I think the graphs might have been mislabelled though because the "early recoverers" were still fatigued at the end of the interval where as the "late recoverers" were all at zero. Doesn't make sense otherwise.

Hope I am not reposting this?!

http://cfids.org//webinar/series2010.asp

 

[Advocate]

Hi Robin,

I'm reading this thread and am only as far as post #38, and I want you to know that I LOVE your updates.

I accessed the webinar okay, but couldn't hear well so I dialed the telephone number and could hear fine, and then I got greedy and wanted both at once, and POW, our system shut down. It took us three hours to get things running again.

Could anyone else watch on the screen and listen on the phone simultaneously?

 

[gracenote]

I think we're saying the same thing. We have a long list of bio-markers right now. They show we are physically ill, but none can definitively say "this is CFS".

A differential diagnostic is a single test or marker that can identify CFS.

From Wikipedia: A differential diagnosis (sometimes abbreviated DDx, ddx, DD, or ΔΔ) is a systematic method used to identify unknowns. This method, essentially a process of elimination, is used by taxonomists to identify living organisms, and by physicians, physician assistants, and other trained medical professionals to diagnose the specific disease in a patient.

The above quote is from Wiki so I know it's not the final answer, but maybe it will do for now. I was misunderstanding what "differential diagnosis" meant.

According to this definition, a differential diagnosis would not be a single test or marker. It would be, once again, a "process of elimination" to diagnose a specific disease.

Isn't this what we have now with the Fukuda and Canadian, etc.? Definitely room for improvement, and we need to be able to specify subsets, but it still doesn't sound like what I'm hoping for.