Physicians diss SEID/CFS/ME on Reddit

[Vicariousdancing]

I'm just going to leave this here.
http://np.reddit.com/r/medicine/comments/2wncib/chronic_fatigue_syndrome_is_now_to_be_called/

Be careful what you post. We don't want to be "emotional," just good, hard facts. and citations.

 

[daisybell]

There are a number of great posts on there, amongst the dross... Jen Brea is doing a great job!

 

[melamine]

Among the better ones:
"You guys are putting our profession to shame. Before you make fun of ME/CFS/whatever you want to call this illness, take a min to look into research by MDs like Montoya at Stanford & Rowe at John Hopkins. You'll see that there are regular biomarkers: low natural killer cell function, heart orthostatic intolerance, EBV & cytokine abnormalities, PET brain scan abnormalities, 24-hr stress test abnormalities, etc.
Why the gov't isn't integrating the research of top MDs into their sloppy new definition i don't know. But don't pretend it's not a real illness (or just psychological) because you aren't familiar with research."

 

[Esther12]

We, as a profession, just don't do well with chronic unexplained symptoms.

• permalink

punstersquared 12 points 15 hours ago

It's human nature to not like something that reminds people of the shortcomings of the profession. I don't mean that in a critical way, just as an acknowledgment that medicine has come a very long way so far but has a very long way to go still

Some of it seemed more reasonable than a lot of the quackery around CFS.

 

[Aurator]

I'm hopeful that the larger than expected number of sensible contributions may be evidence of the gradual passing of the old order, when medical students were taught by pre-ME doctors who had no experience of the illness and anything but open minds towards it, and if they introduced their students to the illness at all in their training they ended up giving them very prejudiced views on it. I'm hoping practising doctors trained under that system are becoming rarer.

The thing I find most lamentable about the whole history of ME and its treatment is that, with a few honourable exceptions, very few doctors and seemingly none of the sceptics among them has ever really got to know ME patients and their families properly, visited them in their homes over an extended period, witnessed how they live now and compared that with how they used to live before the illness, seen for themselves how motivated patients are to get better and yet how much incapacity and suffering they have to deal with on a daily basis. I'm inclined to think that even the most die-hard sceptics would have a change of heart if they had or were forced to have regular and meaningful contact with ME patients, and learned at first hand how enduringly bleak and incarcerating the life of an ME patient really is. They would realise just how inadequate healthcare provision has been at even coming close to meeting these patients' needs, and begin to see perhaps how a clutch of negative test results can be a poor basis on which to judge a person's physical health. Sadly, it's horribly easy to be sceptical about anything if you've never troubled yourself to understand it in the first place.

 

[Gingergrrl]

I wish some of the skeptics could watch Ryan Prior's film "Forgotten Plague" and many (except the most hard core bigots) would have a change of heart.

 

[Sasha]

There are a number of great posts on there, amongst the dross... Jen Brea is doing a great job!

I just selectively searched for 'jenbrea' and read her replies - she really is doing an outstanding job and it's made so much more effective because she's reaching out and trying to understand the docs rather than attacking them. That will make it very easy them to hear her properly.

 

[melamine]

Is one of the problems that MDs are taught to only recognize symptoms they can "treat"? Or that they're permitted to be reimbursed for?

" I am not sure how you could infer from that comment that I have not done any research into the topic at hand. You could enlighten me on one thing, how does one treat" low NK function"?"

 

[melamine]

From a philosopher of medicine on the thread who framed some theoretical questions but then casually included this prejudicial notion (my emphasis):

"Given that ME involves a somewhat spurious implication of muscular or CNS pathology, SEID seems to improve upon ME from a research perspective (I know I've" read somewhere that people have suggested ME might be a distinct condition from CFS but I have no idea how well-founded this suggestion is)."

 

[melamine]

From the rest of wine-o-saur's response:

"Given that CFS simply sounds like a formalised statement of 'you're tired all the time', whereas SEID is more specific ('you're disproportionately tired anytime you do something stressful'), I'd say it's an improvement there too.

The diagnostic criteria have also been trimmed down (and no longer include things like myalgia, headaches, or frequent sore throats) and place stronger emphasis than before on post-exertion malaise and unrefreshing sleep.
I think CFS is far more susceptible to the charge of being a catch-all 'bad patient' category, while SEID appears at least to be the result of a concerted effort to refine that category. Whether this impacts diagnosis patterns or clinician attitudes remains to be seen.

So here's where we end up, as far as I can see:

• Diagnostic/Hippocratic - These people need some kind of medical help, so it is right that there is some diagnosis available to them.
• Nosological/Research - The classification has at least the potential to refine the existing classified population, and thus provide a novel population against which to compare controls or populations of individuals with different but similar diagnoses.
• Prognostic/treatment - No novel implications. However, a more focused set of symptoms does have the potential to refine the diagnosed population into one with a more homogenous treatment response in future research.

So not a huge win, but it seems to me that this is pretty much the only way that medical knowledge progresses from initial discovery to differentiation to (hopefully) effective treatment/management of symptoms and/or discovery of underlying pathology.

Of course any situation in which we have to admit ignorance is less than ideal, but thinking through the issue over the course of this discussion, I feel as though the reclassification does represent some progress, however small or unrealised it may be.

If you've made it this far, I'd be interested to hear what you think. "

 

[melamine]

Response from chayoss:

"Thanks for the clarification. I agree with you that SEID seems to be a more specific diagnosis than CFS, and perhaps it's a small step in the right direction, but it again the re-classification doesn't really remove any of the problems associated with the disease(s).

Specifically, I don't think that the available treatments are better because of this reclassification or that our understanding of the disease has changed at all; we have not discovered what would be a 'legitimising' (for lack of a better word) pathology for the disease in the form of excess neurotransmitter, a disrupted inflammatory pathway, defects in synaptic plasticity, etc. If we can, we'll have genuine treatments and could reclassify this disease meaningfully (from 'Diagnostic/Nosological' to 'Prognostic/Treatment'). At the moment, we may have gone from one research classification to another and it means a bit of noise and faff but nothing for the patients."