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With any data you have and look at you need to carefully examine the sensors used to generate the data along with features in the collection. In this case the data is self reported fatigue and physical function which in itself is a function of a choice on what to report of perceived fatigue and...

The argument many here are making is that such results are due to reporting bias rather than selection bias. This is supported by comparisons when looking at objective vs subjective outcomes. Also if you look at the correlation between changes in the subjective scores vs the 6mwt it is different...

If you are aiming to publish a review then that will need to be set in the context of the current literature and hence you should be expected to have a related work or discussion section that does this. Hence you need to understand and comment on other peoples published work.

We have been preparing a submission. The deadline is 26th July. I have just started a thread with the points we are making here https://www.s4me.info/threads/s4mes...-me-cfs-guidelines-draft-scope-document.5092/

If you want people to listen to your points then it helps to write them in a way that they understand and that doesn't challenge or upset them. The way you make a point can be critical in gaining influence.

To me its not a strong argument because it could be used to suggest there are some people who CBT/GET would help and since they are not well defined the treatments would continue to apply to people with ME. The PACE trial claimed that the diagnosis criteria made no difference to the results...

I see ensuring this happens as the thing we should be aiming to do. That is making sure NICE produce guidelines that follow from the evidence (although that may mean they are quite empty). I think there is room for patient reports within the evidence base particularly where patients have...

Was that intended as a pun? (I always thought a steakholder was basically a cow).

I think the lobbying rules around elections will add complexity to this as well.

No. There are some quite easy processes. But I suspect a large charity needs a lawyer. Pages on setting up a charity https://www.gov.uk/topic/running-charity/setting-up Model constitution - based on an association model which has voting members...

Could a virus be creating some sort of proteins that act as a signal and cause particular responses (say with the metabolic processes) without the virus really doing much in terms of damage to the tissue? Even if this was at quite a low level of infection?

I think these days there are libraries to use GPUs for computation but generally aimed at machine learning rather than complex sets of differential equations. There are also a few accelerators around but again aimed at machine learning. The increase in processor power has started to tail off but...

The step test was in the secondary outcomes for the protocol but was silently dropped from the stats analysis plan. I don't think they ever gave any reason for it. I see this as challenging their claims that they are compliant with the consort guidelines. It may be hard to calculate the...

I do wonder if we should have a strategy of taking over the CFS label and making sure people understand what it means in terms of a being a debilitating illness. Its partly a bad label because as it came out there was also a lot of effort to dismiss the seriousness by certain groups of doctors...

With a fluctuating disease its hard to draw conclusions from a few cases which is why trials are needed. My feeling is that sometimes as people start to improve and feel a bit better they look around for new things to try that may help them. Then they try these and attribute improvement to them...

Parker has written a Lighting process paper Journal of Experiential Psychotherapy, vol. 21, no 2 (82) June 2018 https://www.researchgate.net/publication/326176969_Understanding_the_Lightning_Process_Approach_to_CFSME_a_Review_of_the_Disease_Process_and_the_Approach

How do we stimulate more research into ME? I see a mix of areas that it would be interesting to have addressed: How do we get more researchers interested in ME? How do we get drug companies interested or at least watching the research? How do we get more funding or what can we do to encourage...

It may be that the notes were being written by someone who knew if they put down ME or CFS then any other things wouldn't be taken seriously.

I think is was Hooper's complaint. http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf But that is 70 pages

The problem is that subjective symptoms are not being measured. Something like the sf36 is not measuring subjective stuff but the questionnaire is subjective because the answers are subject to both perception and reporting biases. By that I mean that you can persuade someone that its normal to...