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Precisely. However for those of us with monthly cycles, there is, or strongly appears to be, a distinct cycle to it. ;-)

The discussion seems to be stuck with the idea of studying sleep, which, to be fair, was suggested in @Jonathan Edwards 's OP. What I sense from this discussion, and certainly my own experience bears this out, is that sleep may be too complicated to study. Perhaps seeing if sleep hygiene is...

How would you measure just not getting worse? Management advice that patients give each other usually seems to focus on that (eye masks, limiting sensory stimuli, frequent rest breaks, etc.). I definitely like the idea of actually studying some of the advice we're getting (when I first got...

This. To say nothing of the fact that I cannot think of a disease LEAST suited to nursing homes given the problems with sensory stimuli and delayed diurnal rhythm (I took a full dose of Melatonin last night and still didn't fall asleep until after 2am and woke at 5am, only to fall asleep at...

While I'm only 46 so still have a few more years before I have to think about this (knock on wood), I worry about what is going to happen when I still have this disease in my 70s or 80s and need some sort of institutional care. I already require home care service a couple of times a week (could...

I've been on rivaroxaban - Xaralto - for almost three years after 10 years on Coumadin after unprovoked bilateral pulmonary emboli in 2006 (it was my second PE; the first was provoked by knee and ankle surgery in 1998). It has done nothing for my ME. That said, when I had the PE in 2006, I was...

Your phrasing there gave me a full belly laugh. Cheers. :laugh:

Me too! Most people reading/listening to this story are going to see/hear headline and go "oh yeah, I heard that story already; why are you telling me an old story?" My partner is a former journo and he always reminds me to never underestimate the laziness of journalists. And SMC has practically...

This has been my thought also. Mostly Sharpe et. al just come across as a bit pathetic. As @Jonathan Edwards pointed out way way way back at the beginning of this thread, Sharpe's crowning career achievement was as an author (but not even the lead author, mind you) in a study about a therapy...

But he did try to get STAT to retract Julie Rehmeyer's paper.

@dave30th quoted the email that Michael Sharpe sent to the editors of STAT News to get them to retract @julierehmeyer (is she not a member here?)'s 2016 piece detailing the problems with the PACE study. If I remember correctly, it was Peter White who contacted University of Manchester to...

Well, I couldn't help but point out that Sharpe himself tried to silence Julie Rehmeyer. I imagine his response (if there is one) will be to say that STAT and Rehmeyer are lying.

And now there's a deLIGHTful</sarcasm> article at NPR about it and its treatment: HyperMegaSuperGET (how do I put a trademark sign on that?). Because if a doctor says there's such a thing as Amplified Pain Syndrome (but no ability to actually objectively demonstrate such a thing exists) and that...

@Diane O'Leary I could be reading both you and @Jonathan Edwards wrong (always a strong possibility!) but I get the sense that among Jonathan's disagreements is that it's not that ME patients are being denied medical care but that we are being given bad medical care (i.e. CBT/GET). Your...

@Snow Leopard Very interesting links for ways we might measure function more directly rather than simply how one feels about his or her function. I suppose the 6-minute walk test might fall into this category as well? Sure didn't work out for the PACE folks in the way I think they expected it...

@Jonathan Edwards How did you measure improved function in RA trials? I mean, as you are aware, you could measure, say, B-cells or whatever, and see improvement in that metric, but if the patient wasn't able to actually exercise more or work more or etc., it wouldn't be exactly clinically...

@sb4 : Of course, there is a subset of us ME/CFS patients who do have a lot of problems with fats (I know @Sid on the other forum has talked about her problems with fats also). I would think the patients with comorbid gastroparesis would be having difficulties with fats too as they slow down...

Yeah the moment I saw this, I tweeted thus:

I've always thought the PACE study was actually a good study in ruling out deconditioning as the cause of ME/CFS. The 6-min walk test is a terrible test to show any improvement in a group of patients with a disease that is highly variable from day to day. Having someone walk for 6 minutes one...

Before ME made it impossible, I was once an aspiring academic specialising in the Middle East. While I think someone Muslim would better speak to this than me (a Christian with European ancestry), my first thought on reading this was that, at least in the Arab world, they wouldn't be going to a...