so whats go to come from the NIH meeting??

[heapsreal]

After watching the video's of the meetings it just looked like there were 2 sides butting heads. WHat will come of it. Will there be any treatments or any further testing outside of xmrv testing. mmmmmm

 

[ixchelkali]

I think the best thing that could come out of it would be for some of the NIH researchers who sat in to start thinking, "Hey, maybe these people aren't all whining nutcases. Maybe they're actually sick." Then they might think there's something worth researching. Or at least not make jokes about us in the hallways.

 

[heapsreal]

Even though coffin said xmrv isnt the GO, he did say he believes theres some sort of infectious cause they need to keep looking into, but lets see if he puts his money where his mouth is and see some $$$ go into research. Even if xmrv doesnt pan out, there is just so many immune abnormalities out there that they just cant say its psychological but then they have been for over 25 years now.

 

[Boule de feu]

I think Coffin did not help our cause. XMRV or no XMRV.

 

[WillowJ]

I think there were some NIH and HHS people, maybe some media people, and some non-gov't physicians who were educated that this is a real disease, a serious disease, (or collection of diseases, however you want to look at it) and that we need to get serious with an effort to define or differentiate the population, and get serious with using available treatments and developing new ones.

I'd prefer to think there would be a serious effort at funding, but that seems to be wishful thinking. Fie! And for shame again! As soon as this shutdown thing is settled, we all need to get very serious about contacting our congressional representatives and figuring out how to hire a lobbyist or enlist one on a pro bono basis.

As has been said, (and just to purely make up figures), 1/100000 of a larger pie is still a lot less than 3/1000 of a smaller pie. And it is only basic human decency to fund us at the (again a made-up figure but the point is on a level commisserate with the seriousness and the dire need of this Disease) 3/1000 level.

 

[ixchelkali]

Wasn't it Nancy Klimas who said that the funds from just one of the AIDS studies would triple the CFS/ME budget?

 

[WillowJ]

I didn't hear that (but I wasn't able to see a lot of the sessions), but I did hear someone say the funds from just one unimportant heart disease study (a 10-year study to find a 1/10000 change in risk from some factor or something like that) could be used to figure out ME/CFS

 

[heapsreal]

it would be interesting to see how much money the govt have put into studying cfs verses private organsiations like WPI and others togther have totalled. Is there a way to find out how much WPI have had donated, i would like to see a running tally so we know when to top them up etc.

 

[anciendaze]

At the moment, I'm probably suffering from a reaction to the effort of trying to watch most of the workshop. You have been warned.

What really distressed me at the end was the emphasis on lack of definition and subsetting. (The CCC already works remarkably well to identify sick people with objective anomalies.) This sounds like a recipe for career bureaucrats to delay action and fragment the patient population into small, disenfranchised subgroups. Hardly anyone seemed to have gotten the message that this illness affects many people who do not think they have ME/CFS.

 

[WillowJ]

one good thing I saw is there did seem to be a lot of support for biomarkers, genomics, straifying patient samples. Raj (that was Rajeevan from CDC, right?) said that was what struck him--need to subgroup, which I thought a very positive take-away.

 

[heapsreal]

yes, i dont understand all the crap about symptoms to diagnose the illness etc in this day and age, to define the illness, we need to use thinks like nk dysfunction, l-rnase, viral titres, cd lymphocyte markers etc along with a small amount of symptoms.

 

[WillowJ]

hmm, ancientdays and I just said the opposite. I agree that "small, disenfranchised subgroups" of people with actual ME/CFS with PEM and cognitive dysfunction is a bad idea.

I was just thinking that stratifying the CF-plus-ME population that many groups like to study under the title of CFS would be good because then you could differentiate the CF from ME/CFS instead of having ME/CFS swallowed by the larger CF population. Or in some populations it would be obvious that there were no ME patients when the study authors wanted to say their results applied (or, since they failed to adopt the new standard, they might actually be properly ignored from reviews and meta-analysis).

And as Klimas said, there might be different treatments needed for various subgroups.

I do agree that campaigning together and keeping our cohesiveness (such as it is) is a strength we should attempt to reinforce and capitalize on.

edit: and I agree with heapsreal, too!

 

[Sing]

As has been said, I think a big takeaway is that ME-CFS is a very serious illness. There were a lot of smart people in that room and I think funders who were there will take note. I think the effect will be much more mutual motivation--by competition or collaboration. I'll take progress either way.

 

[usedtobeperkytina]

Yes, it was Nancy who said that about funding. As a patient, knowing what we all know, I saw some statements made that were obviously for show. I am glad other people were there who are ME/CFS babes.

One thing that can be done right now, next time any of these scientists want to publish a study, they can tell what biological abnormality is in their cohort.

For example, "ME/CFS patients with low Natural Killer Cell function also show high cytokines"

Or
"ME/CFS patients with brain elevated post-exertion gene proteins also have lower brain matter."

At least, if anyone wants to replicate a study, the cohort will be more clearly defined for an apples to apples research.

I was struck by how some things I thought all the insiders knew and agreed to are not agreed on.

I sure wish some of them said to the other: "Hey, why don't we switch samples and you tell me the types of tests, so we do the same kind of tests, and we can solve the debate that way?"

Tina

 

[Snow Leopard]

This sounds like a recipe for career bureaucrats to delay action and fragment the patient population into small, disenfranchised subgroups.

If we want to find solutions, then we need clinically homogeneous samples. That means subtyping is rather important.

When you have studies claiming that ~2% of the population have CFS, you realise that studying these groups as if they all have the same pathology is probably a mistake.

 

[garcia]

I think Coffin did not help our cause. XMRV or no XMRV.

Coffin demonstrated with his outburst that all he cares about is his precious ego, not helping the millions of ME/CFS patients out there in dire, dire need.

 

[anciendaze]

If we want to find solutions, then we need clinically homogeneous samples. That means subtyping is rather important.

When you have studies claiming that ~2% of the population have CFS, you realise that studying these groups as if they all have the same pathology is probably a mistake.

I'm not arguing about the science, I'm concerned about the administrative take-home message. What I saw at the end of the workshop showed the transformation already in progress. Experienced players of bureaucratic blood sports can play this hand blindfolded.

 

[floydguy]

hmm, ancientdays and I just said the opposite. I agree that "small, disenfranchised subgroups" of people with actual ME/CFS with PEM and cognitive dysfunction is a bad idea.

I was just thinking that stratifying the CF-plus-ME population that many groups like to study under the title of CFS would be good because then you could differentiate the CF from ME/CFS instead of having ME/CFS swallowed by the larger CF population. Or in some populations it would be obvious that there were no ME patients when the study authors wanted to say their results applied (or, since they failed to adopt the new standard, they might actually be properly ignored from reviews and meta-analysis).

And as Klimas said, there might be different treatments needed for various subgroups.

I do agree that campaigning together and keeping our cohesiveness (such as it is) is a strength we should attempt to reinforce and capitalize on.

edit: and I agree with heapsreal, too!

Well, I think that one way to avoid this is to differentiate between research cohorts and clinical cohorts. The clinical definition could be more broad than the research one. Research cohorts could have specific objective markers like high reactivated EBV, low NKC activity, severe PEM or no PEM, etc. So we stick together from an advocacy perspective but when it comes to research we are divided up.

 

[Desdinova]

Maybe it was just me but I just didn't see anything that showed a real sign of change with the DHHS, NIH or CDC. Some new information, a lot of rehash and expressing what needs to be done to further ME/CFS research. Better case definition needed, sub grouping needed, bio markers needed etc that are agreed upon and used by all parties. That's rehash that's been spewed in detail for the past several years.

And hasn't their always been at least two opposing groups at these types of events? As far as PEM becoming adopted as a hallmark you'd have to get past people like Dr. Natleson who consider this to be nothing more than deconditioning and the yo-yo effect of trying the wrong types of activities and doing too much too soon.

 

[WillowJ]

Desdinova, that does sound discouraging. but I think with PFL and the Light's data the majority would overrule Natleson's and Kent-Braun's position, at least for the actual ME/CFS (as opposed to CF) disease or subgroup if stratifying the current population is all that gets accomplished. Rajeevan said that was the take-away for him, and if CDC stratifies what they have it should become more obvious who is which disease or syndrome (CF being the syndrome, which is mostly populated with people whose doctors are too busy or too prejudiced to try hard enough, or to try at all, to figure out what is wrong, but which might, or might not, include an as-yet-unidentified disease or two).

However I think Mangan understands Jason's point, and Mangan ought to be in a position to lobby to HHS for CF to be disconnected from ME[/CFS]. And I know Alter gets this. Having people (or even a person) at NIH who get this is new.

One of the encouraging things that I saw was someone from NIH in the final recap talking about activation of various cells in the brain and how some of them could be a result of priming, but for some of them to be activated required an ongoing infection, and she sounded so excited about both kinds but perhaps particularly about the ongoing infection kind.

We heard so much pathology about ME[/CFS] specifically told to NIH, who was listening that I cannot see how they could continue to lump in CF with the actual disease of ME[/CFS].