Edit - note that this is an old study.
https://www.sciencedirect.com/science/article/abs/pii/S000293430500656X
Daniel Blockmans, Philippe Persoons, Boudewijn Van Houdenhove, Herman Bobbaers
Belgium
Abstract
Purpose
Chronic fatigue syndrome is a clinical entity consisting of prolonged and...
I can't access the paper. But it's interesting to see this in darrellpf's post,
A very recent study that looked at cytokines in 34 POTS patients found that they had high levels of IL-21.
Inflammatory Biomarkers in [POTS] with Elevated G-Protein-Coupled Receptor Autoantibodies, 2021, Gunning...
For those of us who didn't know what an 'elite controller' is:
(I think there's a joke somewhere there about the elite controller being the Fat Controller (through lipophagy), but I'm too tired to work out what it is. Or perhaps there isn't. )
I guess if Crawley is doing this, she has less time to be promoting the Lightning Process or other some other 'think yourself well' scheme. If she's using a pharmaceutical company's funds, she isn't using up government research funds. And there's an outside chance that some child with an...
I'm not suggesting that it was deliberate cherry picking, and maybe that's not quite the right word, but that the effect of such a significant amount of missing data was probably to produce a more positive result.
Given that it has been suggested that I have been too negative about Ablify, I want to try to explain my reasoning:
Over a quarter of the participants either didn't improve or worsened for every outcome, or had side effects that led to withdrawal. Think about that - coming to a specialist...
A number of posts discussing attitudes to varying levels of evidence for treatments, and how the nature of a treatment might affect our level of scrutiny and acceptance of it on the forum, have been moved to this thread:
How do we discuss science and medicine on S4ME forums?
That's not always true. The PACE study was flawed, but we can still conclude that it provides fairly good evidence that CBT and GET do not cure CFS, or even markedly improve it. The Ablify study had a number of flaws that worked to amplify positive outcomes and yet the reported findings were...
Sorry to hear this, gastro problems are so terribly wearing, making it hard to get in enough nutrients. I hope spring does bring improvement.
I and my children have had such symptoms at various times in our illness.
A few thoughts, probably on things you have already ticked off the list:
I...
Yes, the idea doesn't hold up as being among the most important factors when you look at the epidemiological evidence. MS is common in New Zealand relative to the rest of the world, and yet life in New Zealand is generally far less traumatic than in many countries with much lower rates of the...
SciHub link
Note this improvement on the placebo, versus the 30% reported improvement in the fatigue of patients in the recent open-label Ablify study. Certainly, the short time period will have been a factor, as it is fairly easy to hope that you have improved over just a 2 week period. But...
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]
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