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hmm good point. The acceptance issue seems to be more of an issue for those without ME, who should be accepting. I worry that 'acceptance courses' are all about accepting that - which would be nice and convenient for those who in my mind are behaving unacceptably, and most of us strike a balance...

Too right. Contradiction in terms that someone would professionally talk about goals and acceptance whilst claiming to know about ME. Tenacious as you can be, anything needs to be incremental - and goals need to be what you want/need not 'achieve' in some pat on the head get a medal sense...

I think the term is used lots in the emotional sense or to bring in some 'mind' aspect. But it also is just what pacing actually is. Just like someone joining a running group accepting that trying to sprint the whole way around 400m ends in them crawling the last 1-200m and they get a better...

I don't have a source but I had an abnormally very enlarged gland and tonsils in quincy state for 18mnths as well as being ill and achy, once tonsils were out it was then over 6mnths before gland reduced and was still just as ill. All seemed to very much be the EBV rather than a 'change of...

Hmm. I haven't had a chance to read through all the study, but I'm not sure all the criticism is correct on this one. If it is what I think it is study-wise then it is unusual in that it is 'organic' and longitudinal scanning of students - they can't guarantee who gets EBV and from there what...

I think that it's rude (and intended to be so) that he has used that term in the first place - given that it is written and he'd have had more than enough time to check etiquette I assume it is choice which tells me all I need to know about his personality and purpose in writing it. Using the...

Spot on. It's dumping a heterogenous load of ill people into a bucket and instigating that research must be lowest-common denominator leaving very few things that would ever actually work if you were doing real research, but a nice funding con for those who claim tiny effects across larger...

Reading this you've convinced me that the real disease that we are looking at is one of hubris potentially. Or grandiosity. I'm sure there is a good helping of those who haven't even deluded themselves they are doing anything other than dumping someone into a convenient bucket and other reasons...

I think one of the unwritten things here if the UK NHS GP system is pathways, data and financial nudges etc + big workloads. Hence the 'gatekeeper' analogy. It is a machine in a way. Many real illnesses seem to have pathways that actively tell the GP to send the patient away with whatever...

They are saying that the thing they measured by questionnaire only ('global meta' and then for some reason questionnaires on anxiety and depression too) 'influenced' 'prior' the actual cognition performance as that level didn't correlate with controls/norms, so it must have been their...

Indeed, I think a standard for websites is still things like Unique Users, visits and members - it is well-known with forums that there is an iceberg situation (seem to remember it being called 'lurkers' and there commonly be people who just comment every so often etc) re: those who comment vs...

I've no idea - probably different 'ends' ie one high, one low they are looking at if so. I've mainly flagged it as it seems like an NHS service is writing letters saying 'we did the 5HT receptor test and it was low which is consistent with CFS' ie as if this is being used as a diagnostic by...

That is my concern somewhat. These seem to be official letters by the looks from an NHS service saying this with some certainty of statement and patient being relieved to finally get diagnosis etc.

Something I have now seen a number of times over the last few months is people who have just been diagnosed talking about how it has been confirmed with a 5HT test. It would seem the healthcare (NHS-based it seems, maybe all from similar or the same place?) involved states this to be some sort...

what a poisonous ramble/manifesto

I don't fully get why the research is needed. I can imagine who the individuals are (almost imagine the types of interactions going on at an appointment), and noone is being told anything new More to the point given that taking allopurinol or not and getting agonising pain is instrumental...

Probably a stupid comment, but had a moment of thinking really one of the issues is the order they've jammed words together with. Really it is 'social-psycho' if you are thinking about what impacts on what, or there is probably something even more precise. It doesn't tend to be the individual's...

Is it NIHR projects where the primary outcomes were getting switched after recruitment, sometimes seemingly happening rather a lot? I do not understand how a project can be allocated funding on one basis and then significant changes can be made to the extent some of these changes represented...

Very hard to know without seeing any more of the article what it is claiming and whether that has any robustness behind it. eg I don't even what they mean and have focused on in 'psychosocial issues' under their 4 themes. Definitely don't know whether their conclusions of support being offered...

Here's the horrible bit about ME and how it has been 'played': exertion makes it worse, ergo others being inconsiderate and lack of adjustments means that people can't survive or keep themselves within their baseline to keep their health from getting worse (and the little bit of energy being...