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No, I don't think that. I think clinicians should provide general advice about pacing if the pwME is inexperienced and unaware of the possiblity of long term deterioration from keeping on pushing themselves into PEM. And they should offer symptomatic treatment if the pwME asks for it for pain...

Just don't add dihydrogen monoxide. Your head might explode.

My thoughts on that are very straightforward. If they are doing excellently run double blind controlled clinical trials for a decently long time and sample sizes, with clearly diagnosed patients, and with relevant outcome meaures, and report it accurately, I'm all for it. Three cheers for them...

I expect he wrote it.

The question of what to refer to as a comorbidity and what is part of ME/CFS is confused, I think, because not everybody with ME/CFS experiences orthostatic intolerance, not all experience pain, not all experience gut problems. But many of us have these symptoms as part of our ME/CFS. So do we...

I've only read the abstract. If 'story' means taking a clear case history including the course of the illness and its impact on my life, that would be fine. If it means digging into my past or encouraging me to speculate on what I'm doing wrong that's keeping me sick, no thank you.

People in the study doing over 5000 steps a day are also less symptomatic. Someone should tell them correlation doesn't imply causation, yet they have interpreted this as meaning pwLC should by subjected to rehab programs taking them 5000 steps per day. They don't give any thought to the...

Perhaps the problem is that cognitive tests are too artificial and aren't able to capture reality adequately, rather than that subjective scores are too influenced by mental health factors. Or maybe some cognitive function problems are being wrongly attributed to mental health problems.

That response from Per Fink is distressingly bad. How on earth can he be so blind to the flaws in his arguments and the harm he is causing?

Can you clarify what you mean by this sentence please, @MelbME? Given that there is no reliable clinical trial evidence of any medical, behavioural or psychological treatment being effective in treating ME/CFS, there should be no treatment recommendation, other than symptomatic treatment for...

A random sample is simply a sample where every member of the defined population has an equal chance of being selected. If the population is defined as the patients enrolled on a trial, then it is accurate to use the word random if the participants are allocated to treatment and control groups...

Mods have decided to lock this thread. The topic of whether women and men are, or are not, treated better or worse by doctors has been discussed several times on the forum already, and while we can all agree both women and men may have particular problems with both male and female doctors, and...

I have only read the short quote above, but surely quite a sizeable proportion of doctors these days are women, and quite a lot are people of colour, so why the assumption that they don't know much about us?

Thoughts on the purpose of these PROMs and clinical toolkit. I think the project was set up with muddled objectives. At first I thought the aim was to recognise that the usual use of the Chalder Fatigue Questionnaire and other similar fatigue questionnaires, and the SF-36 physical functioning...

I have just filled in the questionnaire. It seems to be mainly about various scales and questionnaires for assessing illness severity and function rather than case definition. There's nothing about diagnostic criteria. I'm not really sure what the purpose is. If you want to add comments, take...

I don't see the point. It will waste enormous amounts of time with surveys and meetings and arguments and end up with yet another set of diagnostic critreria for people to argue over.

From the link you posted, it looks like the Ann Bowling Measuring Disease book was no better. It seems to me that it was just an earlier version of sociological questionnaires. I don't think it's still available. I suspect the different title switching from disease to health reflects the...

This thread has moved so fast, I'm having trouble keeping up. We have 140 posts since the latest PROM was posted by the MEA for us to test 10 days ago. I have decided not to read back over them all, so I'm sorry if what I post has already been discussed, and I've missed important points. I...

Maybe it's to do with how long people have been sick and therefore how deconditioned they might be. The Walitt study required their participants to have had ME/CFS for less than 5 years, Do we know the duration of illness of participants in the other study?

Well said, @Cinders66