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A post about a Swedish journalist suggesting Long Covid is a psychological phenomenon has been moved here: BPS attempts at psychologizing #LongCovid

It's interesting that the website has differentiated between 'treating' and 'supporting'. This is in line with the draft NICE ME/CFS guidelines I guess. Whether most people will appreciate the difference, I'm not sure. Perhaps, the easiest route to getting this Netdoctor entry to be less...

I've just skimmed it, but I didn't see any reference to CFS or ME/CFS. This is despite it mentioning chronic fatigue lasting more than 6 months and things like post-Ebola symptoms. I think that's rather remarkable.

I wouldn't have thought having 0.4% of the population affected by a disease at any point in time equals a 'rare disease'. I doubt that 0.4% of the population is affected by influenza at any point in time, and I've never seen influenza described as 'a rare disease'. In fact, to the contrary...

I agree with most of what you said in your post Jonathan. But I wanted to pick up on this point. I think there are plenty more people worth influencing than just those with a medical background. The likes of Crawley and Chalder can only continue to churn out rubbish because people with ME/CFS...

There's the 'feeling terrible, but looking pretty much ok' problem - the difficulty of explaining how dreadfully incapacitated we can feel sometimes. In the cartoon above that NelliePledge linked to, there's a reference to being hit by a ton of bricks after exertion. I'm lying in bed at the...

Emerge have launched their online community - with a forum, groups and classes. More here: Emerge Australia launch their online community [groups and forum]

Looking at all of the participants, the change in reported levels of fatigue went from an average of about 6 to 4, on an 11 point scale (0 to 10). There might even have been a little bit of unintended bias from the clinicians. Records were only evaluated for patients seen twice or more...

It's a pretty good article. It reminded me just how hard it is for journalists coming into the ME/CFS story cold to get enough knowledge to write without mistakes and mis-representation.

I'm just trying to assess the findings, as we do for the BPS and other papers, and questioning if we can really say this is a positive result. Sure, it's not a negative result. But, if the paper is not showing anything more than what might be expected with a placebo response in an open label...

I guess I'm questioning whether we can view this paper as a 'positive publication'. The results don't exceed the response to placebos that we've seen in blinded ME/CFS trials. When I look at that report, I think, 'there is no response'. They seem to have taken out the 25% of participants...

I like Alain de Botton. I've appreciated his 'The Consolations of Philosophy' when things have been tough.

I'm not being critical of the paper, sorry if it came across like that. I find the evidence for aripiprazole helping people with ME/CFS underwhelming, not the paper. I agree it's helpful that the authors published. What I don't find helpful is Janet Dafoe, who should know better, suggesting...

I guess a placebo drug dosage could be titrated according to feedback in the same way that the aripiprazole was?

To be fair, my weight change point was rather weak. When I'm in a good patch, my weight goes down because I can be more active (and vice versa when I'm not well). But I know that some people with ME/CFS struggle to take in enough calories for various reasons; so improvement in ME/CFS for them...

This is underwhelming, and I think it's premature to be suggesting that doctors should be prescribing it outside trials. First, there are no controls, so we don't know if people who weren't treated with aripiprazole would have responded similarly. It's quite likely that patients have become...

Wow. Oh, I think you are wrong, it's quite logical. You are just focusing on the wrong outcomes, outcomes like 'better health'. Think of outcomes more like knighthoods, feelings of moral superiority and insurance company largesse, and it becomes quite logical.

Yes, you are doing terrific work @Caroline Struthers. Thank you. I guess when the rewrite of the exercise review was announced, we all, including Hilda and even Cochrane, expected it would happen faster than it seems to be happening. I get that Covid-19 has slowed things down, but really, the...

As an off-the-wall and circuitous answer to the question "where will the drugs come from?": Ciguatera poisoning can cause long term sequelae that look a lot like ME/CFS - fatigue, brain fog and pain, with relapses triggered by exercise. The mechanisms are better, although still not well...