Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 24, 2013.
*I've given each sentence its own paragraph
This is an unusual paper. It may be related to the author's background:
Address correspondence to Smaranda Ene, Case Western Reserve University, Department of Anthropology, Mather Memorial, 11220
Bellflower Road, Cleveland, OH 44106-7125, USA. E-mail: firstname.lastname@example.org
I haven't read that many anthropologists writing on the subject.
The authors reads some literature - see here:
They summarise these briefly, including:
(personally, I dislike this use of the word recovery, but think I should mention it as it comes up later).
The next section is headed:
THE PSYCHOSOMATIC VIEW: CFS AND NEURASTHENIA
And looks at two such conceptions of the illness:
That author says how they don't coincide with the stories the authors has read.
My position is also that both views are questionable and don't fit with the facts. However I would have preferred a more detailed attempt to say why they are flawed. Indeed, I'm not fully convinced by the reasons given by the author of the flaws, even though I'm sympathetic to the author, and not sympathetic to the views of the authors of those two studies.
The author then has a section:
The first paragraph ends with this:
The author summarises these stories which are a bit different.
This might be an interesting paper but its behind a paywall.
Author then concludes:
*I've given each sentence its own paragraph
There are no numbers which might suit some people.
I was hoping for a more indepth discussion of ethical issues, quoting ethical principles, but it doesn't mention much that I recall.
It briefly mentions:
with no other mention that I recall of possible problems with exercise. Also, exercise can cause more problems than "exacerbated symptoms".
It may briefly talk of some theories disempowering patients, but I didn't think it focused on it that much, or that well, although perhaps I read it too quickly and was thinking of other things.
Anyway, perhaps it might be useful to quote on occasion, but overall I was a bit disappointed with it.
Thank you for the article and for breaking things up into readable chunks.
While a good interim step, this gets the dander up along the lines of the discussion right now in the thread about CFSAC -- e.g. we really need to get a cure, people.
So even though this above is essentially what I heard from Dr. Montoya at Stanford and they are seeing improvements in people who take the pacing course (I was quoted 30-60% improvement from baseline before the course for people who implement its suggestions, not sure how formally they measured that), I do get concerned that the prospect of other promising therapies, or incorporating our own search for remedies into the pacing regime are not even raised in the context of the course (If they are, I missed it).
As though you "must learn to live within your condition." That's just another way for the medical establishment to say "we don't care enough to pursue this aggressively."
Part of the reason I think the course is structured that way is that Bruce (story here: http://www.recoveryfromcfs.org/ ) recovered without meds, with pacing alone, after 7 years. While inspirational, that's not going to be everybody's story, I hazard.
We need the full patient centered approach outlined below, and the self pacing, and the support to pursue potential remedies, and a full research agenda, with funding, and disability benefits that recognize the severe and long term nature of the condition...you get my drift.
Wouldn't all that be nice!
This seems valuable as far as it's always good to listen to the patient and look at whatever specific tests they have so far rather than using a blanket CFS diagnosis = NICE/CDC protocol for CFS.
And it's always nice to see somatization and the "pragmatic rehabilitation" approach shown up as bolgonia.
However, I'm concerned because everyone who receives a diagnosis of CFS (or, rarely, ME) or considers themself to have CFS or ME or ME/CFS or CFIDS does not necessarily have the same illness.
So it would be good for this author to warn readers to not overgeneralize from some patients' experiences to others (not saying the author did this, but it seems like it would be easy for a reader not familiar with ME/CFS to do).
One or two okay points, including mentioning Nunez. But otherwise, pretty useless meta-fluff.
Sorry, not feeling too generous today.
It is difficult to do this sort of work. Really, a paper like this would require years of reading and research... and the only people willing and able to do that are those already making money from CFS treatments.
Some people who these sorts of papers are patients (some do this sort of work for PhDs and other degrees, which they may then publish).
You can also try a Google Site Search
Separate names with a comma.