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Acute flaccid myelitis aka paresis was the reason I turned up at the A/E. Long term I didn't recover hence the CFS diagnosis later. Long term outcomes of GBS (which certainly covers the symptoms in that list) suggest a substantial subset of patients suffer from long term fatigue. "Fatigue, pain...

I'm increasingly thinking that all forms of acute flaccid paralysis/myelitis (and respiratory failure), including Poliomyelitis are in fact all forms of Guillain-Barré syndrome. The symptoms and long term outcomes are identical, the only difference is the underlying infectious trigger.

This looks potentially interesting, but I worry that our views will be taken out of context. Patients are not opposed to, or somehow outside of conventional biomedical models. Likewise, when patients say CFS is "not psychological" they are not invoking mind-body dualism, they are not suggesting...

The problem is success on a pilot study isn't actually statistically valid to justify further research, it simply shows that such an experimental design is possible.

Hey, I'm a proud suffer of Can't Be Arsed Disease!

This thread likely has some selection bias, but it nonetheless shows that some of us had above average endurance or motivation.

Easily. Endurance was my strong point. I did 50 km bike rides as a child.

Another one of those BMJ Christmas specials?

They need to recognise that this is a special case and the name is just a temporary placeholder. Names based on vaguely defined symptoms are not well liked, I wonder if they ever actually asked patients systematically before deciding on such policy...

I haven't spent the time making sense of this yet, but the supplementary tables look interesting as mentioned by @Forbin. I will say that on first glance I have noticed several errors with the references referring to the wrong papers, which is disappointing, perhaps publishing errors?

Exactly. These sorts of studies are suggestive of further study only, they are not generalisable treatment outcomes.

Thanks Simon. This particular point is certainly of interest to those of us who have a strong family pattern of autoimmune disease.

The problem is that well, 'malaise' is one of those objectionable words too. The central characteristic of CFS is fatigability, rather than fatigue too, which suggests they misnamed the symptom complex in the first place.

The choice of 2-Day CPET as an outcome measure is certainly very interesting. The downside is that it will create a bias towards who will participate in the first place. I think the primary concern is want to see whether the (exercise testing) protocol is acceptable for patients. It is unclear...

The problem is that we don't have processes to firstly identify what name will be most useful in terms of patient preferences and secondly test potential names across the various interested patient groups around the world to see how they are perceived and how well they are liked. One thing that...

I was under the impression that larger sample sizes are not about establishing efficacy, they're about uncovering potential rare adverse events. You are correct that if it takes 160 patients per arm to achieve minimal statistical significance, the effect is unlikely to be clinically significant.

I plan on applying, just sorting out my referees! :)

Yes it should be scrapped. CBT can be useful for some people, as far as coping with chronic illness is concerned. But it is never useful when the focus is gaslighting e.g. denying that people have an underlying disease that can't be cured simply by changing thoughts and behaviour. (PACE style)

It's very frustrating when people who aren't in remission are promoted with great testimonials. It's common with a lot of "treatments" that are pushed these days (whether it is supplements, off-label drugs or talking therapies).

Doesn't look that bad to me, but I understand concerns that some of the people involved don't look at the evidence very deeply and thus may be drawn to inappropriate conclusions.