Dr. Natelson study of Neurological Abnormalities in CFS

[Nielk]

I'm all for subsetting. I'd love to see more research on ME with and without comorbid MDI, ME with and without comorbid GI conditions, ME with and without swollen lymph nodes, etc.

However, I don't really see this research is getting us there.

First, I'd like to know more about the sample selection. At first read, it sounds like he's taking "CFS" patients diagnosed by PCPs, which in the US means they were diagnosed by some CDC criteria. Right there we have a very sloppy sample set. There are likely to be a significant number of people in the set who do not have ME (as defined by the CCC or ICC) at all. He's then going to group those non-ME (or pure psych) patients in with CCC/ICC-defined ME patients with comorbid psychiatric conditions (he's not considering just MDI as far as I see) and comparing them to CDC-defined "CFS" patients without comorbid psych conditions. Sloppy.

As a researcher, I'm also curious about how he is going to deal with self-selection in the sample group given the condition that the patients not take "any... CNS-active medication" for 10 days before the study begins. Any well-treated MDI patient without symptoms, ME or not, would be a fool to stop taking their ADs for 2 weeks. Ditto for anxiety, psychosis, bipolar disorder, etc patients.

Also, how many ME patients (comorbid psych conditions or not) are willing to go without sleep meds and pain meds for the duration of the study? Most meds and supplements ME patients take are CNS-active. That includes SSRIs, SNRIs, tricyclics, benzos, modafinil, opiates, antihistamines, caffeine, alcohol, marijuana, gingko, 5-htp, tryptophan,,,, the list goes on and on. Let's think about it -- we have CNS problems, so most of us are taking CNS-active treatments of some kind.

While I think this may be an interesting study, I'm concerned that it lacks real substance for us patients. I would rather first see a study that selects pure psych (no CCC/ICC-defined ME) from any ME (as defined by CCC or ICC). Then it would be interesting to subset within a a clear ME group. At best, I think Natelson has the cart before the horse here. At worst, he's going to have a mess with data sets that are confused groups of non-ME and ME patients, and many of them probably not severe because severe patients won't choose to go without any of the CNS support we use to survive this illness.

I guess we'll just have to wait and see how it turns out.

I know I can't go a day without my Klonopin and Ambien. Most patients with neurological problems take some form of CNS treatment.

 

[Enid]

Must say I find it difficult to think in terms of seperating "groups" since different things appear predominate at differing times. It is the same illness and whilst one day one is able to say walk with some ease the next one cannot as muscles clamp down - things come and go for no apparent reason (including GI problems). Personally not into dividing up the spectrum of which some persist/reappear.

 

[Firestormm]

Sick, isn't what he is attempting the same as any other study? I mean they always try to keep the cohort 'pure' (layman's term). In everything I have read those with a co-morbidity are separated i.e. if you have a existing or previous 'psyche' condition you are excluded!

So what's so different this time? And as I said they used Fukuda CDC to define the 'CFS' patients. However, and like other studies, he still found what he found.

Maybe he will apply CCC or something to the cohort in the future. But isn't it semantics in the end? He found what he found in the cohort that he used, I mean whatever he used to define the Lyme cohort he was still able (apparently) to discern proteins of significant difference between the two conditions.

The original research paper is linked in one of my previous posts by the way.

Am going to have a better read of your posts now. Was just my initial comments...

Neilk, in the UK CNS drugs are not on the list of prescribed medications for 'CFS/ME' as far as I am aware. Reasoning being that no research to date has conclusively proven them to be of value for the condition [roll eyes and sigh heavily].

I would be interested to learn more about these some time. Will check out the two you mention. In connection with this study though - coming off any medication 10 days before and during the examination - sounds dangerous. Then again they must know what they are doing [crossing fingers and hoping they do].

Surely there are sufficient patients not on CNS medication to take part? Don't know just generalising (don't usually do that), but if CNS drugs are the exemption rather than the norm - perhaps he should look to include more of those who are not on such things?

I wonder how this might affect his results? Anyway his was simply a commentary, a follow-up and we will have to wait for his subsequent findings I guess.

Still we can leave comments on the CFIDS page - see if these get forwarded to him maybe?

 

[Snow Leopard]

The point isn't that patients diagnosed with both ME/CFS and major depression are less likely to have ME/CFS. The point is that we wish to find out the abnormalities that are purely due to ME/CFS and not due to any comorbid conditions.

Those with major depression may indeed have more neurological abnormalities. But since not all patients have depression, we can therefore investigate just those patients without any relevant comorbid condtions.

In terms of current or prior use of CNS-active medication, that is also part of the screening process of studies like this.

 

[Firestormm]

I think this research is going to take a while. I hope he does consider using at least Fukuda and then CCC and then sub-group. Testing will still happen for the both groups - I think he wants to test that particular hypothesis.

Anyway, I find it interesting. We seem to have lost track of the original findings. Distinct proteins found in spinal fluid but never mind. It was exciting at the time...