Multi-site Clinical Assessment of CFS - CDC

[BEG]

http://www.cdc.gov/cfs/programs/clinical-assessment/index.html

"CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME."

I do hope that the participating clinicians use the same definition when they diagnose their patients. One participating clinician uses the 1994 Fukuda definition.

Why do I have such a sinking feeling about this?

 

[Enid]

Just hope they are not trying to reinvent the wheel - like there is so much now in the way of pathology findings if they can absorb regardless of Fukuda - Canadian Consensus should reveal the difficulties of a simple "model". Hope it helps you there though.

 

[SOC]

http://www.cdc.gov/cfs/programs/clinical-assessment/index.html

"CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME."

I do hope that the participating clinicians use the same definition when they diagnose their patients. One participating clinician uses the 1994 Fukuda definition.

Why do I have such a sinking feeling about this?

It looks like a good group of expert clinicians. Which one still uses Fukuda?

I'm not entirely confident that I know what they mean by "characterize patients", or in what way that is actually going to benefit us. However, it looks like the experts are, in fact, experts in treating ME/CFS (a novel development for the CDC), so there is some hope that they'll put together a more realistic picture (or pictures, if there are clear subsets) of the patient population than they have had in the past.

On the other hand, if they use soft-science psychology approaches (questionaires or other self-evaluation instruments) rather than scientific data (laboratory tests), I have little confidence they will come up with anything useful. This is the CDC, after all, which 1) has an especially poor history of ME/CFS research, 2) feels the need to reinvent the wheel from the original concept, and 3) doesn't seem to mind wasting time and the severely limited research funding for ME/CFS on garbage research.

I guess we'll just have to wait and see. It could be good, given the clinicians involved. [fingers crossed]

 

[BEG]

Yes, SOC, that is a nice objective viewpoint which I seem to lack when it comes to the CDC. You were very right on and nailed it with respect to seeing the positives and negatives. Thanks.

However, weren't several of these clinicians previously involved in defining ME/CFS with the ICC? Without checking again, I'm fairly certain that Klimas and Lapp were involved with it. Therefore, I am in agreement with your 2nd paragraph containing points 1 - 3. The wheel has been invented and why spend the funding redoing what has been done? My negative feelings come into play when I consider that the CDC will come up with something LESS than what we have going now.

I am suspicious about the fact that the CDC doesn't care under which definition a person has been diagnosed, but isn't that the whole point?This coming from the very individuals who came up with the empirical definition which is the most inclusive definition to date.

I had the experience of seeing the same clinician as my friend and getting the same diagnosis: CFS. I don't know what she has, but it isn't the same as my disease. I am very doubtful that she could meet the ICC criteria. So imagine her records forwarded to the CDC as well as another's who actually is sick with ME/CFS. Imagine that happening many times over in this study.

These centers and clinicians are "businesses." It is essential that they stay profitable. The more patients they catch in their net, the more money they make. We like to, almost have to believe they are altruistic. Because if they aren't, who is on our side of the court after all?

 

[Bob]

This CDC project might turn out to be catastrophic, a meaningless waste of time, quite useful or very useful.
It all depends on how serious they are about getting it right.
What I've seen so far, gives me cause for optimism, but then I do tend to be overly optimistic sometimes.

My understanding is that they are starting afresh, to create a new diagnostic criteria, and they are using the evidence from the 'expert' clinicians to gather data on what those clinicians consider (in their 'expert' opinion) to be CFS patients.

I'm not certain how the CDC will try to interpret the data, but there's probably a few ways.
They could look at the symptoms that are common to all patients, to create an over-arching diagnostic criteria.
Or they could try to create new groups or subsets of CFS patients based on similar or overlapping symptoms.

So it could turn out to be a useful project, if they are serious about it, and serious about creating useful, meaningful and practical subsets.

 

[Nielk]

Dr. Lapp - on the CDC project.

rlapp.com/news/december-2012-me-letter/

 

[Bob]

Dr. Lapp - on the CDC project.

rlapp.com/news/december-2012-me-letter/

correct link:
http://drlapp.com/news/december-2012-me-letter/

 

[SOC]

Dr. Lapp - on the CDC project.

rlapp.com/news/december-2012-me-letter/

That doesn't surprise me.

 

[taniaaust1]

I'll only believe that the CDC is capable of doing a good study into ME/CFS, only once I see them do it and see them pay good attention that there are far more symptoms in our illlness then just "fatigue" and a few basic ones.

My understanding is that they are starting afresh, to create a new diagnostic criteria, and they are using the evidence from the 'expert' clinicians to gather data on what those clinicians consider (in their 'expert' opinion) to be CFS patients.

OHhhh. Another new definition? As if we need another new one.. what a shocking waste of money if that is what this study is for when there are already so many definitions out there already.

If they were serious about subgrouping this illness, they'd start by accepting the International ME criteria which then at least would then offically split the current CFS group into two different groups and be a good starting point and all the work is already done for them. This study is just going to be another money waster!!! in which the money could of gone into decent ME/CFS studies.