NIH phonecall and Q&A, Tues 8 March

[jimells]

Wow they really sound serious.

Even Walitt is trying to earn our trust.

But they still refuse to commit to an RFA. Trust is irrelevant. They are making all the right sounds, except for the one item that really counts. They claim to have a "tried and true process" but obviously it has FAILED for 30 years, and they show no signs of changing it. They are still spouting the party line that there are no competent researchers to fund, although they dressed it up a little.

The overall message is "patience". Where have we heard that before? I ain't got time for no "patience", 'cause I'm dying a little more every day.

 

[TiredSam]

Trust is irrelevant

Absolutely. It should be set up so that it isn't a question of trust.

 

[A.B.]

But they still refuse to commit to an RFA. Trust is irrelevant. They are making all the right sounds, except for the one item that really counts. They claim to have a "tried and true process" but obviously it has FAILED for 30 years, and they show no signs of changing it. They are still spouting the party line that there are no competent researchers to fund, although they dressed it up a little.

The overall message is "patience". Where have we heard that before? I ain't got time for no "patience", 'cause I'm dying a little more every day.

Actually they are acknowleding that ME/CFS research needs to be stimulated with special funding.

Koroshetz: The amount of research funding does not match the burden of illness, with
this and others. We have probably 300 different neuro diseases. The process by which
NIH deals with how to allocate scarce resources is this tried and true process where
investigators submit grants, get peer reviewed, scored, NIH takes on mostly highly
meritorious, go down until we run out of money. Need in ME/CFS, funds to fertilize the
research and get it going. To get a large number of highly motivated and well-trained
investigators into the field. That’s what we’re planning to do in a fairly short time. To get
it on par, we need those apps to come in and compete in a fair way with the other
disorders. There’s a short-term process that we need to stimulate with funds for ME/CFS,
but our hope is that this will spread, that the community will start working with
investigators at univs and clinics across the country. We have to utilize the NIH resources
as best we can for the long term. We can’t do it alone, we need to do it with the patients
and advocacy groups, working hand-in-hand.

 

[duncan]

I am a little concerned that they reference chronic Lyme. The NIH Lyme team, if I recall correctly, has distanced itself from the existence of chronic Lyme. Are they dumbing it down?

Again, we should imo try to get Marques (btw, he is a she) to guarantee these Lyme controls are cleared of Borrelia spirochetes vs just "fully recovered". If they are merely asymptomatic, but still have 'chetes, then their immune results likely will be different than if all Bb has been eradicated.

I fear something is amiss with this constant hedging.

I cannot over-emphasize, it has been my experience that although a large campus with many clinicians and researchers, the NIH in Bethesda is still in some regards a small community. Most researchers are to one degree or another familiar with others' reputations, even outside of their respective silos. That includes outsourced testers.

So, when someone sees an investigator like Wallit or Marques or Gill associated with this effort, perhaps there may be an assumed goal behind a given test. Here is one area bias can rear up, even without the direct influence of a given investigator. Their reputation alone possibly might impact interpretations.

 

[Denise]

Walitt talked about "the rash" that helps show the start of the infection.....
Uh - I was under the impression that as few as 15% of those who contract Lyme have a rash.
Are they only going to use patients who know they had a rash?
(Is there something different about those who develop the rash and those who do not?)

 

[Scarecrow]

Wow they really sound serious.

Even Walitt is trying to earn our trust.

Walitt learned that new script really quickly, didn't he? Not a somatoform in sight.

Sorry but I don't trust him. I'd have been happier if he'd admitted what he used to think about ME/CFS and then given assurances that he was approaching this study with an open mind.

 

[Valb626]

@duncan The Lyme sample will be those who have recovered (asymptomatic, anyway) rather than persons with chronic Lyme.

 

[duncan]

Thanks, @Valb626.

Well, they certainly won't be fielding any chronic Lyme patients thru Marques and company since I'm pretty sure their position is they don't believe chronic Lyme exists.

As I've said before, "recovered' should be one word our community would wish to distance itself from.

And asymptomatic can mean little when one considers Borrelia.

We need to be wary that she is only talking Lyme, and not any other TBDs. This is all too frequently a package deal, with testing that some say is more suspect than Lyme testing. Marques should know that.

The only individuals I can think of that might benefit from having the Lyme team field a control group is the Lyme team.

 

[Kati]

Walitt: What exactly PEM is has been poorly explored to date

Right. He forgot about the work of Alan Light and colleagues and VanNess/Snell/Stevens some of which work already dates 10 years. Work which has been replicated by Betsy Keller.

Walitt: Me?CFS bio disorder. In every system, there have been abnormalities compared to healthy volunteers. If it’s all in your head, that’s only because your head is part of the body. My role, I’m a facilitator of research, helping to coordinate scientists and medical professionals. To provide care and... for pts as they go through the trial. I don’t have a bias.

Mind/body dualism anybody? And "i don't have a bias" does not reflect well on the papers he's authored.

 

[TiredSam]

Walitt: What exactly PEM is has been poorly explored to date

The great thing about passive verbs is that you don't have to say who did or didn't do anything.

What he actually meant was "What exactly PEM is has been poorly explored by me to date"

In fact adding "to date" on the end implies that it will be thoroughly explored soon, perhaps even by him, but without commiting himself.

So putting it in the active voice and leaving off the redundant "to date", he's saying:

I have poorly explored what exactly PEM is.

My he's a slippery one . Just can't help himself.

EDIT: And that's still giving him the benefit of the doubt by allowing him "poorly explored" when he should really say "completely ignored".

EDIT AGAIN: And that's still being overly generous by allowing him "what exactly" instead of just "what". So his sentence if spoken by a plain-speaking chap would read:

I have completely ignored what PEM is.

LAST EDIT (FOR NOW): And it's still too generous, because "completely misrepresented" would be more accurate still. That's the last edit. I need to let go of this.

 

[duncan]

If Wallit no longer believes what he has been quoted as saying in the past, then he should be willing to disavow all those statements publicly. Or clarify them to the community's satisfaction.

If he stands by those statements, then I think we should stand by our request that he should not be allowed within a hemisphere of this study.

 

[TiredSam]

If Wallit no longer believes what he has been quoted as saying in the past, then he should be willing to disavow all those statements publicly. Or clarify them to the community's satisfaction.

If he stands by those statements, then I think we should stand by our request that he should not be allowed within a hemisphere of this study.

Maybe he's just someone who jumps whichever way the wind blows and where he thinks the money and status is to be had in the moment. Surely all viewpoints are equally valid, so expressing a view which apparently contradicts something you said earlier is just a different perspective on the same dream, right? Maybe our post-modernist experts would like to comment?

 

[greeneagledown]

Did you ask Francis if he was ashamed of himself for employing someone like Walitt?

Joke!

too soon

 

[jimells]

Maybe he's just someone who jumps whichever way the wind blows

Also known as "being a team player" - a characteristic highly-valued by fine bureaucracies everywhere.

 

[greeneagledown]

Pretty much the only thing Walitt could have said that would have made me okay with him being part of the study is, "I used to believe ME/CFS was at least partially psychological. I was completely wrong, and I'm sorry, and I now acknowledge that the cause is 100% biological and not even partially psychological."

Honestly, the guy seems more confused than nefarious. He says the disease is biological and he also says it's all in the mind, and he doesn't think there's any contradiction there. I suspect he genuinely doesn't understand why people who think the disease is biological would have any misgivings about him. I think he needs to step back and learn how to think about disease logically before he does any more research in ANY field.

All of that being said, I doubt he's going to ruin or even bias the study. It was just reckless to include him and it's more a slap in the face than anything else.

 

[viggster]

Sounds like they will use data from Lyme patients that have already been studied by NIH, although it's unclear if these patients will have to come back for more testing. It's possible they'll run all the blood and CSF testing on existing samples from these patients but not have them do all of the physiological testing. And they said they're looking at adding other controls.

 

[viggster]

If Wallit no longer believes what he has been quoted as saying in the past, then he should be willing to disavow all those statements publicly. Or clarify them to the community's satisfaction.

If he stands by those statements, then I think we should stand by our request that he should not be allowed within a hemisphere of this study.

I think he did clarify today, and I think it's a bit much to ask all the NIH researchers to stand up and avow their belief in ME as a biological illnesses. They are now spending a chunk of their careers on a very deep biological investigation of "real" CCC ME, which is what many patients have been clamoring for for a long time. Actions are louder than words, right?

 

[BurnA]

Pretty much the only thing Walitt could have said that would have made me okay with him being part of the study is, "I used to believe ME/CFS was at least partially psychological. I was completely wrong, and I'm sorry, and I now acknowledge that the cause is 100% biological and not even partially psychological."

Honestly, the guy seems more confused than nefarious. He says the disease is biological and he also says it's all in the mind, and he doesn't think there's any contradiction there. I suspect he genuinely doesn't understand why people who think the disease is biological would have any misgivings about him. I think he needs to step back and learn how to think about disease logically before he does any more research in ANY field.

All of that being said, I doubt he's going to ruin or even bias the study. It was just reckless to include him and it's more a slap in the face than anything else.

For me i get the impression he is in a bureaucratic position :
"Lead associate investigator, helping to coordinate a large number of investigators."
"Very excited to help Avi Nath facilitate the protocol."

At least i hope so anyway.

 

[viggster]

For me i get the impression he is in a bureaucratic position :
"Lead associate investigator, helping to coordinate a large number of investigators."
"Very excited to help Avi Nath facilitate the protocol."

At least i hope so anyway.

Yes, as I and others have said, his role is to run patients through the protocol. It is not a glamour position. As NINDS clarified the other week, Nath is the head of the study and in charge of overall interpretation.

I wish Walitt were not in the study because it damages trust, but I honestly do not see how he could sabotage this study so the results pop out "psychosomatic".

 

[Sasha]

I think he did clarify today, and I think it's a bit much to ask all the NIH researchers to stand up and avow their belief in ME as a biological illnesses. They are now spending a chunk of their careers on a very deep biological investigation of "real" CCC ME, which is what many patients have been clamoring for for a long time. Actions are louder than words, right?

Which is why we'd like to know what the heck that FMD group was doing in there. If it hadn't been for that, I don't think we'd have worried a fraction as much about the background of these investigators.

Was that explained?