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Interesting on the issue of whether the IAG members who have links with named ME/CFS groups are representing organisations or themselves, they are described as “Nominees of three organisations representing people with ME/CFS”, the groups being European ME Alliance #MEAction ME/CFS Australia...

Presumably neither Cochrane or the IAG have published such a list, and at present I suspect it is probably better not to speculate at all about the group’s membership unless individuals put themselves forward officially as Hilda Bastian did in relation to her lead role. Do we know if she is...

The risk of categorising PEM under fatigue is that it increases the chance of confusing it with increased fatiguability, that is getting fatigued by an activity more rapidly than previously. Increased fatiguability is an apparent exaggeration of the normal process found in many conditions where...

I have not read the full paper, but suspect that @ME/CFS Skeptic is on the right track. Many years ago I was the subject of a research trial looking at the effects of specific food supplements (I think fish oil) on our condition. I went into the trial with no preconceptions about whether it...

Thank you yet again to all who have put in the hard work to try to force progress on something Cochrane have been failing to adequately address for a decade now. Given the Editor in Chief’s current refusal now to even take any responsibility for the failure to progress her own promises of 2020...

There is the issue of ‘black swans’. For hundreds of years in Europe the definition of ‘swan’ included it being white, until the first [Europeans] visited Australian and were confronted with ‘black swans’. edited to correct word selection error

There is no simple answer until we have a diagnostic biomarker. Under current definitions by symptom a diagnosis of ME is contingent on PEM. I think we should be very cautious of an ME diagnosis in individuals who have never displayed PEM, though given the variability within individuals...

A great start @Trish

When we contacted BACKME some six plus weeks ago, they seemed to have already been aware that the IAG planned to make an announcement ‘in a few weeks’. Are these other groups, who are saying there is no need for this campaign because things will be happening in this very elastic ‘few weeks’...

Thank you. So apart from the failure to withdraw the 2019 update, which would anyway have been replaced by now had things gone as planned, Cochrane was on track to positively progress ME/CFS up to the Summer of 2021. However we are still left not knowing what went wrong then.

If I remember correctly Cochrane had promised to move ME/CFS from their mental health team to a more relevant team (sorry I can’t remember the correct terms) some years ago. Did anything ever happen with this? It feels like once they failed to withdraw the previous version of the CFS exercise...

Being quicker at making a diagnosis is only of value if those diagnoses are accurate. Given my cynicism over such as FND diagnoses I worry that there is a risk that having mental health specialists with an interest in ‘somatic medicine’ may result in missing other rare biomedical diagnoses and...

I just checked the UK FOI situation and found: So we could only use this if an organisation such as NICE entered into a relevant contractual relationship with Cochrane and presumable the FOI request would need to be through NICE or any other relevant body. Could we ask any public body citing...

I had, what I was told, the latest Pfizer booster yesterday. I got it on grounds of age, just scraped it, as I will be 65 next month. My PA got it on the grounds of being my carer (she works with another person with ME too). Had I been a few months younger would have been in the position that my...

Is Cochrane subject to freedom of information? Would the UK freedom of information laws apply in this situation or the Swedish? Given the latest communication from Cochrane seems to contradict previous communications and on line information about this process would it be appropriate to start a...

Politeness/formality can be a very English way of showing aggression or trying to assert dominance. Also to address a message to a named person rather than the organisation, but then to fail to identify the sender by name only by organisation is either a play for dominance or an attempt to avoid...

I think you are right, but I suspect the wording is deliberately vague in order to give readers the false impression that they have seriously addressed more recently the issues we raised, as the conclusion of of the editorial process around the 2019 redraft was that it was grossly inadequate and...

It seems to me that Cochrane’s reply, yet again not signed by a named officer, only attempts to address two questions, the first to which they reply effectively that they will not withdraw the 2019 redraft for the foreseeable future, if ever, and the sixth to which they respond they are not...

The letter says “A randomized controlled study”, however if subjects are preselected it is not randomised unless the control group undergo the same preselection and the randomisation only happens after the preselection, and even then it is only meaningfully controlled if the control arm...

The article refers to it as ‘alternative’ medicine, but surely if it has been the dominant form of medicine in India for several thousand years and is still used by 77% of Indians it is ‘mainstream’ medicine. However simply being mainstream does not guarantee efficacy, as in the UK GET/CBT was...