Brief Thoughts on why I'm passionate to get rid of "Chronic Fatigue Syndrome"

I have been reflecting on reasons why I'm passionate to get rid of Chronic Fatigue Syndrome (CFS) following a Twitter exchange yesterday.

I had a long battle against the CDC's empiric criteria which found that 2.54% of the population were affected. It was a terrible definition. For example, 89% of those satisfying the definition had a psychiatric disorder at some stage in their life*. However, it was hard to make headway. Most patients didn't understand the details of the criteria so were not able to get into detailed discussion.

It was a tough time. I had to spend a lot of my energy on the issue: I set up a petition (which has over 2600 signatures) which was a bit of continuous work http://www.ipetitions.com/petition/empirical_defn_and_cfs_research (I had lots of blog posts with extra info but the website deleted them with an upgrade); I made submissions to the CFSAC; I made submissions to the CDC on its 5-year plans; I had a letter published in a psychiatric journal; wrote numerous e-letters on journal sites; etc.

Fortunately, Bill Reeves was moved on and it looks like that criteria won't live on except in the studies that have already been done. But it was close.

This wasn't the first time we have had bad criteria with "Chronic Fatigue Syndrome": we've had to deal with the Oxford criteria now for nearly 25 years.

I am frustrated that we have a chance to move on with a term, systemic exertion intolerance disease**, that ensures post-exertional symptoms is an essential part of the definition but the opportunity will be lost and we may get stuck with "Chronic Fatigue Syndrome" as the main term the medical profession uses long into the future (the last time there was a major movement for drop "Chronic Fatigue Syndrome" in the US was around 14 years ago but it fell through).



Addenda:
*Somebody challenged me on this elsewhere "just because you have had psychological issues doesn't make you immune from ME."
My reply:
Thanks for your comments, <name>. I may not have clarified sufficiently my point. It was found that the CFS (Reeves et al., 2005) criteria allowed many people with major melancholic depressive disorder but who didn't have CFS to satisfy the criteria. What this criteria was doing was picking large groups of people who had psychiatric disorders but not CFS. Certainly in a population of people with CFS, you would expect some who psychiatric problems at some stage in their life. But 89% is virtually everyone and I believe is too high (and doesn't accord with other studies in the field).

**Somebody asked me why a name that concentrated on one symptom was any better than another name that concentrated on one symptom
My reply:
The difference is that the name ensures post-exertional malaise/symptoms is a core symptom. "Chronic Fatigue Syndrome" doesn't ensure that post-exertional malaise is a core symptom, all it requires is that fatigue is a core symptom. People have fatigue for all sorts of reasons. Depression is a common one. So one can a group of people improving a lot with GET and CBT when if one required post-exertional malaise, there might be no change. I don't want GET and CBT to be the main therapies offered to us indefinitely.

Comments

I'm not really pro-SEID (yet - still haven't read the report), but I do (perhaps patronisingly) think that some patients are anti-it because they underestimate how bad things currently are, and think that it will challenge rigorously defined and widely used 'ME'. I do have concerns about the uncertainty around SEID and insurance claims/disability/WHO classification and so on... but do not really understand the processes here and what would be likely to happen.

Thank you for your work over the years. I can see why your focusing on areas which many patients have little interest in would lead to you being particularly keen to move away from CFS.
 

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