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My sister in law, knowing me and a couple of friends with children with ME, insisted both her children took a year out from university following glandular fever. One spent part of the year studying French in Paris. Neither had any long term issues.

Is ‘socioeconomic determinants’ what the authors intend to say, as this prejudges the issue and switches ‘associated with’ to ‘causes’?

Why is this issue not more widely know?

An outspoken Blog in the substack Osler’s Web by Hillary Johnson responding to Nath’s preaching on how people with ME/CFS should be nicer to the wonderfully selfless researchers, that also covers the history of the NIH’s relationship with ME: Do we need?have a separate thread on Hillary...

Hilda Bastion lasted posted on her blog relating to the new Cochrane exercise review process on the 18th of March: Both @Trish and myself have comments that have been waiting in moderation since March, as presumably have other people as no new comments at all have appeared since. With a...

I think for me in part using a stick serves to focus my attention, to remind me to concentrate on walking and not get distracted.

It is decades since I looked at the studies on such as conservation of number or volume in child development, ie knowing that seven sweets spread out is the same number as seven sweets close together or pouring liquid between different shaped containers. The traditional studies looked at the...

When at home and rested, even over rough ground, I can usually walk without a stick. However when on unfamiliar ground, even with level surfaces I need a stick, especially if there are any distractions including traffic. However any motor activities are noticeably harder in novel situations...

In the past when I was still well enough to work part time, I saw at different times an osteopath and a shiatsu practitioner. I saw the osteopath for specific issues with my back and neck, and that seemed to also help with headaches. The shiatsu practitioner I saw when I was trying anything and...

I assume for the very severe any form of massage is counter indicated and would lead to a worsening of their condition.

A few random thoughts: Any model would need to explain the sensory hypersensitivities and food intolerances, though I sometimes wonder if the food intolerances could be some form of chemical hypersensitivity. Given the more people look the more we find orthostatic issues, we need some way of...

Thank you to everyone who is recording their recollections and perceptions of the event.

Scales based on subjective experiences/sensations are not necessarily linear progressions, as @bobbler has pointed out. It is basic experimental design to bear in mind that these numerical ratings are not actual numbers but metaphors (if I have got the right word), so that doing ‘maths’ with...

Mind it is good you recognise the very very severe exist, here in the UK at times it seems like researchers are not even willing to acknowledge such people exist.

Thank you for your perseverance @Caroline Struthers It definitely feels that Cochrane’s refusal to address the issues around the ME/CFS exercise review is now a deliberate strategy of delay and obfuscation.

Sorry I am not in Australia, but a big shout out that you are including people with severe ME.

Here in the UK the average time to diagnosis is in the region of 6.6 to 7.5 years but for some it can take decades. How the NHS deals with the symptoms is an absolute mess. A friend in her mid twenties is now two years into seeking a diagnosis, including several hospitalisations to a large...

Save us from researchers seeing hope. I see hope in buying a lottery ticket, but it is hardly a [viable] or rational financial strategy. [edited to correct a bizarre autocorrect that I missed when writing the post]

I first read it as the ‘role of hairpin in postural orthostatic tachycardia’, so it took a while for me make any sense of this thread.

Thank you @Maat for your contributions, I am currently operating near the upper limit of my cognitive capacity, so am restricted in making useful contribution, but wanted to say this is useful and important information.