NIH drop FMD (functional movement disorder) control group from ME/CFS study

[Justin30]

Good News I like it!!!! Keep the good news coming!!!

 

[aaron_c]

I'm new to the whole FMD thing...actually, I hadn't heard about the planned NIH study until now--and it sounds great! But I don't entirely understand the level of celebration I see here upon hearing that the FMD control group will be removed.

I understand that A) We only think we know what causes FMD, possibly in the same way that people thought they knew that ME/CFS was psychosomatic, and comparisons between two unknown quantities yields less information than those between an unknown and a known quantity. B) The FMD control group might be replaced with a different control group that would tell us something different, either by adding statistical, um, weight to the study or just because we might learn something by comparing ME?CFS to...whatever else.

Which is all fine, but it seems like the inclusion of FMD is being equated with the study authors assuming psychogenic origin of ME/CFS...but it seems to me that that would only happen if the brain scans showed something similar in us as found in the FMD group. Which would be interesting, to my mind, even if it would be misinterpreted. Confident as I am that our illness is not psychogenic, I can't help but think that the FMD group could give us a little validation.

So I think I must be missing some key argument.

Would someone mind explaining (or pointing me towards a good article) on why FMD controls are so objectionable in a ME/CFS study?

Thanks!

 

[Valentijn]

Which is all fine, but it seems like the inclusion of FMD is being equated with the study authors assuming psychogenic origin of ME/CFS...

First of all, some study investigators have already stated that ME/CFS is a somatoform disorder.

An additional problem is that a couple investigators believe that people with atypical movement disorders are psychosomatic. This represents a problem because it demonstrates that those investigators are willing to reach conclusions based on their pre-existing biases, even though a psychosomatic disorder can never be proven or disproven.

In short, psychosomatic theories have an abysmal track-record, and the inability to prove or disprove such a diagnosis leaves them entirely outside of the realm of science. Researchers who embrace such theories tend to put more weight onto dogma than a true search for answers, and will frequently twist their findings (and even methodologies) to support their beliefs.

In my opinion, the FMD group should not be replaced with another control group. The presence of three control groups in a small study likely represents such an attempt to twist the methodology to make it more difficult to reach statistic significance. They should keep it simple at this stage: 1 patient group, 1 normal control group.

 

[aaron_c]

Thanks Valentjin.

OK, so I understand why we might be suspicious, or feel it is a waste of time. I think my confusion comes from this quote by Courtney Alexander Miller in the comments section:

Dr. Nath explained that there is clear brain imaging on patients with FMD which shows where the brain signals stop between intent to move and muscle control. Contrasting that with brain imaging pre- and post exercise challenge could be illuminating.
​

If there is a clear pattern to brain imaging in FMD patients, then contrasting their brain scans with ours might do something to disprove the whole psychosomatic ME/CFS theory. And on the off-chance that they share notable similarities...well I admit, that would probably have a net negative effect on our efforts to get real research done in the future. Nonetheless, I cringe at the necessity of avoiding research because the findings might be misinterpreted into something that damages us politically.

Again, I understand that the case for not using FMD controls can be made entirely on the basis of trying to reach statistical significance, as you have--and this makes sense to me. It is the other perspective that I am...uneasy with.

On something of a tangent: Can anyone guess how much they have to pay healthy controls to get what I assume will be multiple spinal taps? Ouch!

 

[jimells]

This is good news indeed.

Now how about that RFA, Dr Collins?

 

[aaron_c]

All the talk of bringing in more brains et sounds like they mean to fund ME/CFS research more fully. But somehow I thought that congress had control over that, and it didn't seem like congress was all that bothered about it. Does anyone know who holds the purse-strings?

 

[Valentijn]

If there is a clear pattern to brain imaging in FMD patients, then contrasting their brain scans with ours might do something to disprove the whole psychosomatic ME/CFS theory.

It won't. Dr Mark Hallett and his team members, Dr Carine Maurer and Dr Silvina Horovitz, are all listed as investigators for the current study. In the past, they have claimed that abnormal brain scans do not account for the abnormal movement disorder, but rather it accounts for "the reduced sense of agency in FMD patients." http://www.neurology.org/content/84/14_Supplement/P6.080

They insist that the movements claimed to be involuntary by the patients are actually voluntary. The abnormal results from the brain scan supposedly explain only the patient perception that they cannot control the movements which they are voluntarily causing. I'm not sure how they account for such a "reduced sense of agency" only applying to certain limbs or regions of the body, and not to the entire body.

But yes, biological findings are no guarantee that the disease under investigation will not be interpreted in a purely psychosomatic manner.

In some ways, Hallett & Co worry me a lot more than Walitt. They have a more sophisticated and superficially consistent context for interpreting abnormal biology as psychosomatic. It's a harder area to detect flaws with findings or conclusions, since it requires access to the actual brain images and very specific training to interpret them.

And there are three of them involved from the same team, meaning they might be able to shout down any one or two other investigators who question their conclusions. This is also the type of study which might generate multiple papers, and I'd be pretty annoyed if one was from Hallett's team, explaining why our funky brain scans explain how we come to think we're sick when we really aren't.

 

[Valentijn]

All the talk of bringing in more brains et sounds like they mean to fund ME/CFS research more fully. But somehow I thought that congress had control over that, and it didn't seem like congress was all that bothered about it. Does anyone know who holds the purse-strings?

My understanding is that the money from congress is used for external grants. The NIH also has huge a budget for running various clinics and everything else on site. So it sounds like the NIH is committing to doing a lot more on-site ME/CFS research, which does not have a specific dollar figure or limit attached, in addition to what is still being funded to external researchers.

 

[aaron_c]

Thanks again Valentjin.

And there are three of them involved from the same team, meaning they might be able to shout down any one or two other investigators who question their conclusions.

Ah. I can see why we wouldn't want to give some of the research money to them.

So it sounds like the NIH is committing to doing a lot more on-site ME/CFS research, which does not have a specific dollar figure or limit attached

Wow, that really is remarkable. Hip, hip, hooray!

 

[viggster]

All the talk of bringing in more brains et sounds like they mean to fund ME/CFS research more fully. But somehow I thought that congress had control over that, and it didn't seem like congress was all that bothered about it. Does anyone know who holds the purse-strings?

Last summer, ME Action hired a former Congressional staffer for meetings with 15 senators to try to push for more funding. The feedback we received is that a really large annual budget - $50 million or $100 million per year, say - will take Congressional action. That is, those types of sums will have to be written into either the NIH authorization bill or a stand-alone bill. NIH does have some internal wiggle room and can come up with smaller sums to launch a new program. But most of the NIH's budget is already spoken for. In the past I've said NIH is like a land of 1,000 fiefdoms, and every lord or lady jealousy guards his or her slice of the budget pie. So it's not like there are 100's of millions of dollars sloshing around waiting to be allocated for something.

 

[Sean]

But most of the NIH's budget is already spoken for. In the past I've said NIH is like a land of 1,000 fiefdoms, and every lord or lady jealousy guards his or her slice of the budget pie. So it's not like there are 100's of millions of dollars sloshing around waiting to be allocated for something.

Yes. It is important we understand how it all works, and that just because we might have a sympathetic ear in the NIH director doesn't mean he can simply reallocate large chunks of funding with a stroke of his pen, especially in the short term.

Relative to both the history of CFS at the NIH, and more generally how NIH funding processes typically work, things are probably moving about as fast for us under Collins as we could hope for.

 

[beaker]

Thanks Valentjin.

OK, so I understand why we might be suspicious, or feel it is a waste of time. I think my confusion comes from this quote by Courtney Alexander Miller in the comments section:

Dr. Nath explained that there is clear brain imaging on patients with FMD which shows where the brain signals stop between intent to move and muscle control. Contrasting that with brain imaging pre- and post exercise challenge could be illuminating.
​

If there is a clear pattern to brain imaging in FMD patients, then contrasting their brain scans with ours might do something to disprove the whole psychosomatic ME/CFS theory. And on the off-chance that they share notable similarities...well I admit, that would probably have a net negative effect on our efforts to get real research done in the future. Nonetheless, I cringe at the necessity of avoiding research because the findings might be misinterpreted into something that damages us politically.

Again, I understand that the case for not using FMD controls can be made entirely on the basis of trying to reach statistical significance, as you have--and this makes sense to me. It is the other perspective that I am...uneasy with.

On something of a tangent: Can anyone guess how much they have to pay healthy controls to get what I assume will be multiple spinal taps? Ouch!

There are many who believe that FMD are just those who have a bio illness whose cause has not yet been discovered. That adds a layer of difficulty we do not need for our study. I do feel great empathy for those dx w/ FMD.