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Why not just admit we haven't a clue and say so and then describe the symptoms that are typically used to define ME in the various definitions. You may be able to wrap a sentence that includes various possibilities but I feel that would just be misleading in terms of the knowledge (or lack of)...

But they may data driven (for example, due to mental representations/knowledge encoding learned due to environmental signals) rather that due to the biological mechanism that allow such mental representations to form and exist.

I agree with this. Sometimes I think it has become a short hand way of saying that CBT/GET don't work and hence the theories behind them don't work. I don't know how it was introduced but I have felt that it was introduced by Wessely and friends as a diversionary tactic and so they could feel...

Don't we need two forms of replication. The first being simply to repeat the experiment to check the same results are obtained . But isn't there a second form of replication needed which is harder that of taking the hypothesis and designing other experiments to test it?

So would it be more accurate to describe ME as a disease of unknown cause that leads to symptoms across multiple systems including neurological symptoms. I worry about any classification of ME since we don't have a good hypothesis about cause. But we do know about the symptoms and that is how...

MEPedia is clearly a big project and I can see it needs contributors but at the same time it needs to be accurate. If it isn't accurate or does not reflect the scientific literature very well then it will not become a good source for people to go to and get information. It would be be better to...

I thought the point was to try to not make articles opinion articles or theories but to reflect the range of different views based on the primary evidence. As you get one person writing an article in a difficult area it is very hard for it not to become an article pushing particular opinions. So...

I don't think we can expect much from the guidelines but the removal of GET/CBT and some improved guidance on managing patients with long term chronic conditions would be good. One of the reasons in our r response to the scope document we spent a lot of effort questioning their proposal to use...

There are issues with the HADS scale in terms of measuring depression. The questions are not great. What may be interesting is to look at correlations between the cytokines and particular questions and what that may say about levels of disability. Rather than trying to place bad semantics of...

I wonder if an alternative research project would be to look through notes of people who were eventually diagnosed with something (say cancer or could be RA) and see how many times their symptoms were dismissed as unexplained prior to diagnosis. I wonder how many patients mention every symptom...

Slightly off topic but in terms of cause of death etc Jason did a ME mortality study where they did a survey based on asking patient families. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/

Here is our (S4ME's) response which was discussed here: https://www.s4me.info/threads/s4mes-response-to-the-nice-me-cfs-guidelines-draft-scope-document.5092/ as it was developed.

They did come out against Oxford as a definition and it is particularly poor. But their analysis wasn't good in terms of the studies using Oxford were poor because of bad methodology rather than the Oxford criteria. So I would argue that the Oxford criteria may well be a marker for bad...

I'm not sure how much it matters. From a clinical perspective I would favour wider criteria with the warning to look for other causes of symptoms. For research I think it depends on what is being done and the number of patients but there I would expect more restrictions (avoiding co-morbitities...

I would be concerned that ICC doesn't pick up mild patients. There is a paper by Jason looking at different criteria on a set of patients (although I've not read it) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831204/

You could try to take the support group out of the equation and look at what the support group gives. For example, an understanding of the disease, a way of getting hints on how to manage better. Then try to assess the level of people's knowledge in different areas. The overall notion of a...

I had thought they may have looked at it in the mediation paper. I have a vague memory that they didn't find an association (but that wouldn't be a point they would discuss in detail).

I assume they have supported her in doing research without ethical approval since she is an NIHR fellow which I assume means they pay for a replacement person to do her lecturing/NHS consulting thus freeing up her time.

Maybe we should be asking the NIHR if this is an endorsement for carrying out research without ethical approval.

This group doesn't have a position and I would certainly not view my position as the position of the forum. One function of the forum is to debate the evidence in detail and hence gain a better understanding (by critiquing different positions). In terms of selection criteria. If you take...