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Hope that is better, I had started to write the post in a note book and formatted there for me, then when I posted here I forgot that the italics became redundant. Unfortunately I also ended up posting far too much text, creating a ‘can’t see the wood for the trees’ situation myself. I must...

It has taken me a while to get my head around this thread, given the extreme press of information. I found it very hard to see the wood for the trees. @nataliezzz is this a fair overview of what you are saying? Why is everything a syndrome? I find it off putting as it implies groupings that may...

Looking at multiple variables is a bit of a bootstrap operation, but once you start identifying the relevant variables you can control for them. Now I am managing my food intolerances they can be ignored in any calculation. If I was trying now to quantify activity to predict PEM I would need a...

It is possible to argue for other sources of evidence, but only if you list all the sources of bias and ambiguity in the evidence you have and then seek alternative evidence sources with different biases in the hope of developing convergent evidence that takes you nearer to the correct...

Well this about says it all, drastically reduce the criteria for what constitutes meaningful evidence so we can do what we want and then we will claim to save you money, though no one will evaluate the costs arising from that treatment no working or even causing further harm.

Also retrospective studies tend to over report adverse events when looking to explain current problems or health issues. What is required is a definition of what constitutes adverse events and then follow up children who have had those experiences and see if they disproportionately develop the...

Welcome Trent, it is heartening that you as a film maker are keen to engage with the subject so deeply(and openly). I look forward to seeing the final result.

@poetinsf, it is interesting to read of your approach to predicting PEM. I am currently struggling to hold enough information to be sure I understand what you say, welcome finding out more. (Sorry, what follows has become something of a ramble.) When I spent a year recording all my activity in...

Sorry this is something of a tangent, but it strikes me this discussion highlights the complexities of producing clear and unambiguous statements in one language and then the complications of translating into another language. Though such forum discussions take time I think this also makes...

I have not read the article, but do you see the same heterogeneity in Long Vax as in Long Covid? I assume that this is not the case, and that Long Vax does not include such as the long term lung issues or cardiac issues, rather Long Vax is similar to the ME/CFS type of Long Covid. This raises...

A good sales pitch that there is ‘no single prescription for getting better’, as if one doesn’t work then keep trying others till you find the right one for you. This also maximises the chances of one at least cooccurring with any spontaneous recovery or with periods of remission.

I saw it more as St Paul the Apostle of the letter writing fame, complete with his conversion on the road to Damascus. Presumable had phones been available then it could have happened via phone instead of requiring a physical journey.

The site shares links to individual practitioners or groups that have helped people on their path to recovery: Which includes: Mind-Body Reconnection Mickel Therapy Health Coaching Nutritional Therapy Somatic and Trauma-Informed Therapies Brain Retraining /Neuroplasticity Approaches Integrated...

Ah but you don’t want the subject to focus any on objective measures as when that is unchanged you will reinforce their belief that there is an underlying neurological condition, which in turn will undermine your (the researcher’s) belief there is not.

I wouldn’t ascribe any ill will or greed to the MEA and in terms of finances they have always acted in such a way as to maximise the percentage of donations that go to end products and end users, the trustees doing a tremendous amount for little or no financial return. Indeed in the posts here...

(A pointed aside.) Could we have a similar evaluation of questions by disability benefits assessors?

(Sorry, I am struggling to word this such that it does not contain too many unintended assumptions/implications.) The majority of cognitive issues reported in ME/CFS are non specific, that is they do not suggested any focal brain damage, rather they seem to reflect overall brain function such...

The cumulative total of money that goes to individuals and services promoting rehabilitation and recovery is potentially much greater than donations to ME/CFS charities, but then that is not a financial conflict of interest, it is merely lots of altruistic people earning an honest pittance. All...

In terms of ‘us and them’, in so much as there are coherent groups making up ‘us and them’, rather it is them that exclusively research treatment and make no meaningful attempts at evaluating their etiological beliefs. We would like treatment but we also want an evidenced understanding of our...

Old age