Extraordinary NIH ME/CFS study may be most comprehensive & in-depth yet

[RustyJ]

The explanations attributed to Nash for the inclusion of Lyme and FMD control groups do not strike me as very convincing.

These are potentially dangerous controls.

It has been since rumored that the FMD group has been dropped - I say rumored, since word of this has once again first come to us via informal back channels, rather than as a public announcement.

The Lyme control group has some semblance of relevance, according to Nath, because it can be compared to the post-infectious me/cfs group. This is nonsense science. There is no such thing as post-infectious me/cfs, at least not as a clinically proven entity. This is an uncontrolled variable. With only 40 patients in the me/cfs group, I'm afraid this also is a catalyst for a null result. If the basis of the post-infectious group is undermined, the Lyme group loses relevance.

 

[duncan]

Yes, @RustyJ . There are also too many controversial issues - unresolved in many eyes - about Lyme and co-infections. Why introduce this or any dubious element to an ME/CFS endeavor?

I wonder about intent.

 

[RustyJ]

Yes, @RustyJ . There are also too many controversial issues - unresolved in many eyes - about Lyme and co-infections. Why introduce this or any dubious element to an ME/CFS endeavor?

I wonder about intent.

Looks more and more like science by braille. Peeling off bits of the study, because of patient pressure, is not 'listening to us'. It is a ludicrous situation when non-scientists are pointing out major methodological errors in science.

 

[Bob]

Peeling off bits of the study, because of patient pressure, is not 'listening to us'.

Redesigning the trial after listening to patients seems a bit like listening to patients. And there's more dialogue to come so I think it's a bit early to conclude that they're not listening.

 

[Sasha]

Redesigning the trial after listening to patients seems a bit like listening to patients. And there's more dialogue to come so I think it's a bit early to conclude that they're not listening.

I agree. It's important to acknowledge positive changes when they happen, I think - otherwise we'll end up constantly throwing good things that they're doing back in their face, and that's not the way to get more good things.

 

[RustyJ]

Redesigning the trial after listening to patients seems a bit like listening to patients. And there's more dialogue to come so I think it's a bit early to conclude that they're not listening.

Actually the main point I was making, perhaps badly, was that is an odd situation where patients are changing scientific methodology. Whether or not it is via pressure or by listening is arguable.

Perhaps the upcoming results of the CDC multi-site study had more of a bearing anyway, in that it found me/cfs patients physically impaired but psychologically normal.

Pointing out that these methodological issues should not have arisen in the first place is not a matter of 'throwing good things back in their face'. Asking why they happened in the first place is critical, and relevant to possible outcomes.

 

[Sasha]

Actually the main point I was making, perhaps badly, was that is an odd situation where patients are changing scientific methodology. Whether or not it is via pressure or by listening is arguable.

Perhaps the upcoming results of the CDC multi-site study had more of a bearing anyway, in that it found me/cfs patients physically impaired but psychologically normal.

Pointing out that these methodological issues should not have arisen in the first place is not a matter of 'throwing good things back in their face'. Asking why they happened in the first place is critical, and relevant to possible outcomes.

I think we're basically in agreement, @RustyJ. I think we should acknowledge a good thing when we see it but that doesn't stop us asking what went wrong in the first place.

 

[L'engle]

It's also important that it's not just an amorphous 'they' we are talking about, but individual people, some of whom are listening to us and some are not. We need to appreciate that there are individual people on side doing what they can to gear the overall process towards patients' needs, but that they themselves are limited by the structure they are working in.

 

[Bob]

Looks more and more like science by braille. Peeling off bits of the study, because of patient pressure, is not 'listening to us'. It is a ludicrous situation when non-scientists are pointing out major methodological errors in science.

Actually the main point I was making, perhaps badly, was that is an odd situation where patients are changing scientific methodology. Whether or not it is via pressure or by listening is arguable.

Pointing out that these methodological issues should not have arisen in the first place is not a matter of 'throwing good things back in their face'. Asking why they happened in the first place is critical, and relevant to possible outcomes.

You're criticising them for not getting things right in the first place, which is fair enough. But we know that no one is perfect which is why we want them to consult the patient population, and to work with us. I don't mind them getting some things wrong if they are seriously willing to work with patients, adapt to improve the study, amend errors, and are making an honest attempt to study the disease. (Time will tell if that's the case.) But I don't think it's fair to condemn them at the first sign that they are listening or bending to pressure. Whichever it is, it's a desirable outcome.

 

[RustyJ]

You're criticising them for not getting things right in the first place, which is fair enough. But we know that no one is perfect which is why we want them to consult the patient population, and to work with us. I don't mind them getting some things wrong if they are seriously willing to work with patients, adapt to improve the study, amend errors, and are making an honest attempt to study the disease. (Time will tell if that's the case.) But I don't think it's fair to condemn them at the first sign that they are listening or bending to pressure. Whichever it is, it's a desirable outcome.

So at what point do you pat yourself on back for a job well done in getting the NIH to listen and modify their study? Is it when they have removed one or two impediments to good science, and the study proceeds on that basis, or all of them? Removing one or two is not a good result. Nor is it grounds for describing it as an extraordinary study, as some have said. It started off as a poor study, and remains so until every impediment to good science is removed.

Asking how these impediments arose is paramount, because the answers have implications in determining if there are other problems with the study. We know some of them, but not all.

Eg Why was the FMD control group there? Why was it removed?

I would rather have good science and a fractious relationship, than bad science and a good relationship. Your premise is that it is the good relationship that is creating good science is both worrying, because it points to serious incompetence among the scientists involved, and presumptuous, because it doesn't take into account that there may be other reasons for the CDC to change their methodology, ie drop the FMD group.

 

[ScottTriGuy]

Perhaps the upcoming results of the CDC multi-site study had more of a bearing anyway, in that it found me/cfs patients physically impaired but psychologically normal.

That linked slide at MEpedia is very validating.

More evidence of our lived experience (and not some quack's psychobabble).

 

[Bob]

Asking how these impediments arose is paramount, because the answers have implications in determining if there are other problems with the study.

Fair point. I think I may have misinterpreted some of what you posted earlier.

 

[viggster]

I say rumored, since word of this has once again first come to us via informal back channels, rather than as a public announcement.

If you want NIH to issue all information via official press release, we are all going to be waiting a lot longer to learn anything. Also, it's ridiculous to call a response from a named NIH employee to a public blog post a "backchannel communication."

 

[A.B.]

More evidence of our lived experience (and not some quack's psychobabble).

It's defies common sense that a person leading a normal life would suddenly develop mysterious psychological problems so severe as to be life changing yet so subtle that the person themselves doesn't realize that they are psychological. Yet this is basically what is being argued by some.

The other nonsense argument is that failure to identify the underlying pathology means that there is no pathology.

It's frustrating that these flawed arguments, that even a child could understand to be flawed, has served as basis for health policy for so long.